The Blog of Fog

Scared out of my mind with worry! AKA The Attack of Friday the 13th!

2006-01-13T12:11:00.000-05:00

I went to my pain doc appt. today. Something I was looking forward to because I have been in a ton of pain. Anyway, he got my paperwork for my LTD (Long Term Disability insurance) and he is going to give the opinion that I can do sedimentary work!
I almost fell of the darn table with that statement.
I told him that I am not worried about my SSDI because I can give work a try and if it doesn't pan out I can go back on it. BUUUUUUT, LTD does not work that way. Once I go back to work, that is it. No more money. He thinks that it is because I have no desire to go back to work or as he put it, I have no incentive to go back to work. I would love to go back to work, but with all my meds and my health problems I feel I would be totally an unreliable employee.
So, right now I am totally scared out of my mind of losing literally half of my income, which we can't afford to loose right now. I called my psych nurse, my internist and my rheumy all of whom send reports to my LTD company as well. I have appointments to talk to my doc and rheumy but I left a message with my psych nurse, which she may not get until Monday or Tuesday depending if she is working on Monday because of the holiday.
I am a mess emotionally. Part of me doesn't even want to go back to my pain doc, but he has been so good to me until now. UGH!! Just one more thing to add to the fire I guess.

The virtues of Lidoderm Patches

2006-01-09T06:15:00.000-05:00

This is one of those medications that I feel are under used. Just recently I started the patches. Basically I wear the patch at night anywhere I want for 12 hours and change it the next night depending on where I hurt most. My major question is why wasn't I given this medciation sooner? I have been given anything and everything under the sun from Tylenol #3 to Duragesic Patches and none of them worked for me. How could my doctors skip over something that is so easy to use and is NOT a narcotic????
Ever since I have been going to my Pain Management doc, I have been given medications that my doctors in the past could have given me, but I was given meds that messed me up physically and emotionally instead. Basically, what my pain doc has done is given me meds that are body wide that work like lidocaine. While it is true, I am NOT pain free, I function better than I have in a while. I can actually do a sink of dishes without my lower back killing my after 20 minutes. A BIG step for me.
So basically my question is, why do doctors go for the hurtful meds first instead of meds that are easier on the body and the patient? Why do I have to go to a specialist for this to happen?
Just a couple of questions to throw you guys out there.

Well, finally that time of year again.....

2005-12-21T14:32:00.000-05:00

is ALMOST OVER!!!!!!
UGH! I try and make the doings of each holiday as stress free as possible but it seems each year I want to do less and less. Either I am getting more lazy or all this medication I am on is really making me drag my behind.
I used to go all out for the holidays. Making food for 8 people, presents, cards, tree...yada, yada, yada. Now it is just my husband and I and I barely want to do that.
Luckily the grocery stores are catering to the lazy and people like myself. Pre-cooked this, pre-made that.....its like a cornacopia of pre-packaging! Gotta love it! Hey for people with CP, it is just perfect.
So, who cares if you didn't make it from scratch, who will know if you don't tell them????
Have a great holiday....whichever you observe!

The don'ts of CP

2005-12-09T08:56:00.000-05:00

Okay here are the major don'ts of being a CPer!

1) Don't forget to take your meds! Even if you have to break down and get a pill organizer. I forget did to take my nightly meds a couple of days ago and didn't realize it. On top of that I HAVE a pill organizer! I spent all day yesterday in a whirl of a mess trying to fight back from it.

2) Don't push yourself during the holidays. If you can't do it, don't! JUST SAY NO!

3) Don't force family or friends to understand the logics of being a CPer. Some won't get it, some will. I tried to get into contact with my sister after two years or so and I haven't heard from her yet. I was taking meds that changed my moods and personality and I am sad that she may not forgive what I said and did during that time, but I do understand and I can say that I tried.

4) Don't think that little things mean nothing. If something is bothering you either physically or mentally tell your appropriate doctors. They are there to help you and they can't if they don't have all the information.

5) Don't NOT enjoy the holidays! Enjoy them the best you can to your ability. If all you can do is a 10 minute family visit, do that. If all you can do is just have an intimate Christmas dinner with you and your close loved ones then do just that. Enjoy it the way you want to....even its just watching A Charlie Brown Christmas or Rudolph the Red Nosed Reindeer. DO IT!

6) Please don't let anyone get you down about your situation. If they make you cry, cry and let it go. They aren't in your shoes and don't understand. Just let it go like water off a duck's back. If they would say something like that to you, they don't deserve to be your friend anyway. If its family....take a break from them. I have had to do that and my mental health has been the best it has been in years.

CPers are a special group of people. It takes a person of special strength and presence of mind. We are of one mind. We understand each other. Reach out to others like yourselves. Find support groups in person or online to help you with your issues. Usually they have had similar siutations happen to them and can offer support and advice to help you.

I wish you all well.

My gift for messing things up

2005-11-15T10:52:00.000-05:00

If there is one thing that I have learned from being chronically ill person is that I am bound to mess things up. Not by choice mind you, I never mean to, but purely by accident. What people don't mention about chronic illness is the insecurity you feel each day with the people around you and people you come in contact with each day. Each step I take I feel I am going to step on a landmine and destroy something. I did just that over the weekend.
Last Thursday was mine and my husband's 4th wedding anniversary. So as I do, I rush out get a gift and a card. I got nothing. So of course I internally start freaking out. We were planning to go out for dinner on Saturday so no biggie right? Wrong! I, of course, push the point that I have gotten nothing, not even a card for our anniversary from my husband. I felt forgotten. What I didn't know is that he was going to give me a very nice card at the dinner. So we had a big argument about how I "push" him into doing things that he doesn't want to do anything for me. Make sense? So of course I feel guilty for being a butthead and he feels forced to give me the card early.
Because of these insecurities I seem to mess things up at the most inappropriate times. I am trying to figure out why, but I may never know. I really hate being ill at times like these. I feel so alone and distant from everyone. Like no one gets it. I wish I could figure it out.

PT is going to be okay!

2005-10-27T11:35:00.000-04:00

Well, I went to my first PT appointment yesterday and this place is much better than the place I went to earlier this year. The facility is much better and is brand new. I officially start next week but the therapist I am going to have seems to want to work with me especially after I told her what happened earlier this year with the other therapists. They treated me like a baby like I couldn't do anything strenuous. I want to work up a sweat not just do baby exercise. I am not an invalid!
I found out that my upper body is very strong but from my hips down is very weak and that she knows the areas we need to work on. That makes me very happy. She really sounds like she knows what she is doing. I am very excited about going next week.
Wish me luck and I will keep everyone updated. Hopefully with my pain control regimine I will do much better at PT than in the past.

Well, I am off to physical therapy again!

2005-10-25T14:16:00.000-04:00

Well, I start PT again for the third time tomorrow. Not looking forward to it but I know it has to be done. After all the testing I have had done to me in the last few months I really don't want to go to ANOTHER doctor again. But this illness rules me I don't rule it. SIGH.

Sorry it has been so long!

2005-10-19T15:34:00.000-04:00

I apologize for not keeping up this blog, but the new medication I have been on the past month has really knocked me on my backside. All I want to do is stare at a TV all day and I must nap at least once a day if not twice. On top of that I sleep like the dead at night. I think this is the most sleep I have had in years!
Today I had my trigger points shots and boy he hit the right spots! He told me that I can't have the cortisone in my shots for a while but I can have the numbing medicine if I want for a month. I figure something is better than nothing. On top of that, he wants me to go to physical therapy again. This will be my third time going. I am not sure how much it will do for me. The last two times it caused me more pain or didn't do diddly squat. So I am torn as to whether or not to go. I am afraid if I don't go, my pain management doc will drop me or think of me as a difficult patient. So I guess I go again.....

Movie Recommedation

2005-09-25T08:31:00.000-04:00

Because my health is so up and down I don't get a chance to sit in a movie theater and watch a movie very often. Yesterday, I actually felt up to it and went. I went to see "The Exorcism of Emily Rose" and I highly recommend. Two thumbs up here. Not exactly the feel good movie of the year but it was very well done about a sensitve subject. Here is a quick synopsis of the movie...
Before anything at all happens in The Exorcism of Emily Rose, the new film from director Scott Derrickson, eight ominous words appear on screen:

This film is based on a true story.

It seems like an important thing for us to be aware of right off the bat, because very little in the film to follow resembles any kind of true life, at least as most of us know it.

The Exorcism of Emily Rose is ostensibly based on the story of Anneliese Michel, a German college student who believed she was possessed by multiple demons, including Lucifer, Nero, Judas Iscariot, and Adolf Hitler. In 1975, several years after Michel had started suffering from extreme seizures and exhibiting generally unexplained behavior (compulsions to self-mutilate and publicly urinate; the ability to speak languages Michel had never learned), the Catholic church gave her priest permission to perform an exorcism. Various traditional Church rituals were performed at least once a week for ten months, until, in July of 1976, Michel died of starvation (she had claimed for months that the demons would not allow her to eat). Anneliese’s parents, and the priest who officiated Michel’s exorcism, were brought to trial on charges of manslaughter, and sentenced to six months in prison. Michel's grave has since become an ad-hoc holy site for devout believers, even though the Church later issued a statement denying that Michel had ever been possessed.

Emily Rose takes this story, adapts it to an unnamed, wintry locale in the present-day US and folds it into a strange hybrid of courtroom drama and 70s-era hysteric shock-horror. After a quick look at Emily’s bleak and creaky, unconvincingly snowbound deathplace, presided over by the almost cartoonishly somber Father Moore (Tom Wilkinson), we plunge straight into the world of big city Law and – I mean, law and order – and the rest of Emily’s story is told in dream-logic heavy flashback.

In the present day, Father Moore is about to stand trial. The cynical DA sits at a coolly lit glass table and informs his staff that choosing the right prosecutor is key. “We need a Christian, a Catholic – someone who knows this shit inside out.” We’ve seen this kind of scene before on countless procedural shows; its point seems to be to remind us that, you know, sometimes you gotta play a little dirty in the name of justice. Message received. The ideological lines are thus drawn early on: on one side, you’ve got the law, doctors, and supposed Christians who are so unloyal to their faith that they’re willing to prosecute a representative of their own Church. On the other side, you’ve got God. Which team do you want to be on?

While I don't agree with the inflammatory comments made by this reviewer, it was a good synopsis. Anyway, it was a good movie...not a feel good one. You walk out of there in a daze...I did. If you are in the mood for something a little disturbing, not gory, then this movie is for you.

Latest Update...sorry its been delayed

2005-09-22T10:33:00.000-04:00

I apologize for not coming sooner to update the Blog, but I have been having a rough time with pain since Monday and haven't been online much.
Well, the Friday experiment at the hospital with the Xylocaine was a success and I have been given the meds Mexitiline and Carafate for my pain. The Carafate is an anti-ulcer drug that he gave me to make sure I protect my stomach because the Mexitiline has a tendency to cause nausea. So, I have sent in my script to drugstore.com and should be starting the meds sometime next week when I get them.
I still haven't gotten my Lidoderm patches yet, but I have started the Baclofen on Monday. The muscle relaxant has helped but the flare has been so bad that my back froze up early Monday morning and I could barely walk. I was in rough shape.
Yesterday, I got my trigger point injections in my shoulders and I am in quite a bit of pain today. The injections sites are very painful but that is normal for me. I am feeling better but very tired from the Baclofen and the flare. I hope the flare clears up soon so I can do simple things like shower and do errands/chores. I have a ton of dishes to do but they have been sitting and since my husband works he hasn't had time to do them either. Thank goodness for paper plates or else it would be worse.
Well, I am off to lay down on the couch for the day. I will try and update as soon as my new meds come in and I am feeling better.

The day after.....

2005-09-17T10:19:00.000-04:00

Well, I made it through the testing. Acutally I made it through the check in process, which took longer than the testing itself!
What basically happened was I was given an IV (in the hand when I asked them not to!) and they put me in a Day Surgery OR and dripped Xylocaine into the drip. According to how I was feeling, the doc adjusted the amount of the drip. The only major side effect I had was my tongue went numb a couple of times and when I mentioned this, he slowed the drip. The pain level went from my normal 3 down to about a 1.5. Which is a major drop for me since 3 is a daily level. I did feel a little light-headed at one point and the drip was slowed again. In about 25 minutes, the test was all over. Once the Xylocaine was taken off the drip, it quickly left my system. Within 10 minutes all effects from the med was gone! GONE!! Since that was the case, they said I could go home right then and there, as soon as I got dressed.
He didn't tell me what the results of the testing were (either good or bad) but said when I saw him on Wednesday for my next round of Trigger Point Injections (TPIs) we would discuss what my options were for medication. Wish me luck with that appointment!
That is all for now! I hope you are all doing well.

Back from TPI appointment

2005-09-14T13:14:00.000-04:00

Well my backside feels like a pin cushion, but the novacaine hasn't worn off yet so I don't know how this set will feel later on. I am trying to stay off my left side but I can feel it now and again.
Next week, I go back for my left shoulder. Oh happy day!
Just wanted to check in and let you all know that this set wasn't as bad as the shoulder but then again, with shots in the backside, there is more meat there and will take a while for the pain to set in.
Wish me luck tomorrow.

Part 2 of the Trigger Point Injections

2005-09-14T09:13:00.000-04:00

Well, today is part 2 of the injections. They called this morning and moved up my appointment by 2 hours. Yikes! I had planned to do some errands and chores before my appointment but I guess that won't happen. Today they do my left hip and maybe more but I am not sure yet. It depends on what the doc decides. On Friday I have that big Outpatient test for the heart nerve drug so its a busy week for me Pain Clinic wise.
I will try and update as soon as I can.
Thanks for the support through the first one everybody.

Well its over....sort of.....

2005-09-08T09:09:00.000-04:00

Well, I had my Trigger Point Shots yesterday around my left shoulder. They weren't too bad and I am BAD with needles. Thank goodness for the novacaine before the "BIG" shot, the steroid. My shoulder is stiff and sore, nothing a little TLC and ice won't cure. They could have done my left hip as well yesterday but they figured I had enough with the shoulder so I have an appointment for next Wednesday to do the hip. Now that I know what to expect, I feel a little better.
Today I wil spend the day nursing the shoulder and resting. To all those who are on the fence on the shots, yes I won't lie it does hurt when they do them but after a while things settle and it is like someone chucked a softball into your shoulder and is stiff and sore. Then again, everyone is different and what I experienced may not be what you do. So far I have had good results, and the doc said that I would be up and down the next couple of days. I have noticed that certain movements does aggrivate the area but I try to keep from doing them. So it will be a big rest day watching crap TV on the couch for me.(Then again that is everyday for me. :-) )
So here is my update for the TPIs. If anyone in the Eastern Mass. area needs to find a pain clinic for FM, please email me and let me know I will be more than happy to give you the information to contact them.

Yet another death in the tortoise family!

2005-09-06T09:52:00.000-04:00

You know, I don't know what is going on in my tortoise tanks lately but a second tortoise of mine just died yesterday. Unfortunately it was one of my favorites and the smallest, Peeper. I went to wake her up as I usually do and she was all limp, like Max was the day before. This time I broke down and started crying. They were in two separate tanks so its not a tortie virus going on but it really has shaken me up. I feel like a bad mom now. A really bad mom. We knew there was something wrong with her because her "sister" (they came from the same clutch) thrived and she is as big as the others. Peeper never thrived the same way so in a way we knew eventually she will pass away. I tried very hard for that NOT to happen. I worked with her and fed her by hand, so it hurt more than when Max died when she did.
I know that this is a blog about Chronic Pain, but inner pain sometimes makes the physical pain worse. With my Trigger Point Injections coming tomorrow, this shows me that I can't separate the two right now. I hope that these injections work for me. And I hope they don't hurt too much either! I am trying to get things ready so that I won't have to do too much after my appointment tomorrow like dishes and laundry as well as other errands so I can nurse myself if I have to.
Todd started his new job today so I cannot depend on him to do all the errands that need to be done during the day so I am trying to do the best I can get most if not all of what needs to be done between today and tomorrow morning.
Wish me luck everyone!

Happy Holiday Weekend Everyone!

2005-09-04T09:53:00.000-04:00

Well, I am still hurting from the Pain Clinic visit but I am living with it, by staying in bed most of the day.
I am worrying now about my trigger point injections on Wednesday. Never had them so I have no clue what to expect. Don't think I will be skipping and jumping for joy when I leave but I want to be prepared at home with the things I need so I won't have to go out and do anything that day since Todd will be working. I have also had a death in the family, one of our tortoises died. I found him dead when I went to feed him yesterday. He was a quiet one so to see him asleep in his favorite corner didn't bother me at all. but when I when to feed him and move him to the food, there was just no life in him. It was very sad. His name was Max and one of my favorites.
I have also made my appointment for that IV drug test outpatient thing to see what level of med will work for me. I forget the name of the darn thing now. So it is in about two weeks.
That is all that is happening in this part of the world. I hope you are all having a great Labor Day!

Just another day!

2005-09-02T09:07:00.000-04:00

Morning everybody!
I haven't been able to get online lately because Todd has been bogarting the computer and I have been in bed from my exam on Wednesday.
Everytime a new doc examines me he/she twists and turns me to see my range of motion. Well, I know after tons of these appointments that I will be a hurting unit for at least a day after and boy was I right. In fact I still hurt. I have been in bed for the last couple of days nursing the spasms and pain so that is why I haven't updated since Wednesday.
I have been looking into how to pay for my Lidoderm patches. They are over $100 a box each so with my income I needed help. So I called the people who make the patches and they directed me to the website . Here is a form you can fill out and give to your doc to help get them for FREE! I hope this helps someone. I know that it is one thing off my mind. Having to pay almost $150 a month would have sunk our budget.
Now on to happier things.....I hope everyone has a great Labor Day weekend.

I'm baaaack!

2005-08-31T13:18:00.000-04:00

Well, the appointment went rather well.
Here is the run down.
Next week I am getting my first trigger point injections.
He is taking me off Soma and putting me on Baclofen. Any advice on Baclofen would be appriciated.
He is also giving me Lidoderm patches but there is a problem. They are so darn expensive. I know there are people on it who read my Blog. How do you afford it??? Again any advice is appriciated.
The last thing is he is putting me on a med that is normally for irregular heartbeats that helps the nerves around the heart. I think it is Mexiletine....I forgot what he said. I have to go the hospital and do an IV test first to see what level he should give me. In case I have a reaction, I am there and I won't have to just get a pill and deal with bad side effects.
So I am happy with the appointment. I am just nervous about how I am going to pay for those patches which sound like a godsend for at night, when I hurt the most.
Any advice would be appriciated about the meds I just talked about.
Thanks for being there in spirit with me.....I was really scared.
--------------------------------------------------------------------------------

Today is the day!

2005-08-31T09:14:00.000-04:00

Well today is my Pain Clinic appointment. I don't have much time to type by please wish me luck and I will try to update as soon as I can.
I am just happy I have an appointment.
Cross your fingers everyone!

The appointment is on 8/31

2005-08-25T08:07:00.000-04:00

I had thought I put when the appointment was but it is next Wednesday 8/31. So only less than a week away!
Getting exited about it, but nervous too. I hope that he can help me.

Finally found a new pain clinic!

2005-08-24T08:14:00.000-04:00

Well after a two year search, I finally found a Pain Clinic who will take me and is not afraid of the Fibromyalgia. Most times when I have called clinics in the past, the moment I mention my FM, they immediately say they don't treat that. So I am very lucky this time to get an appointment since usually I don't get that far. The appointment is next Wednesday so wish me luck and I hope they can help me. I will update you all after the appointment.
I was also able to finally get my meds renewed and they are on their way via UPS as we speak. Unfortunately waking up at the buttcrack of dawn this morning because of pain and not getting back to sleep wasn't what I wanted to happen but oh well, what can I do until my muscle relaxants get here. They aren't much help but at least I can get a little sleep with them.
I hope you are all doing well.

Morning everyone!

2005-08-23T07:54:00.000-04:00

Woke up this morning feeling a little skittish, but I am sure with all my meds it will go away soon.
Still haven't heard anything about refills of some meds that I called in last Wednesday. I use drugstore.com because I pay 100% out of pocket all my meds and it is the cheapest I can find that is reputable. So for almost a week I have been calling and waiting. I hope that things get resolved soon because I need my Buspar or I go nutz. It helps with my anxiety and sleep. UGH. Its enough to drive me crazy with all the work I have to do for something so simple.
Anyone else have this problem????

CP and apartment living!

2005-08-22T07:59:00.000-04:00

Well, sorry for the lack of updates lately. As you all know I haven't been well. I am slowly getting my stomach back and I lost 4 pounds to boot. Not sure if that is good or not yet.
Well, usually my husband gets on the computer lately looking for work so I haven't had the freedom to come on the computer and update when I'd like to, but this morning is different.
I woke up early today and was hot so like a normal person I shut the AC off and opened the windows for some fresh air. No biggie right? WRONG! About 5 minutes after I opened the bedroom window and went to lay back down, my neighbor decided to be loud. I first heard this loud truck and thought it was saying a quick hello or picking someone up for work, but I was wrong. They and the neighbor chatted loudly while the truck was running for about 20 minutes!!! Needless to say I was not amused! Eventually they did leave and things quieted down. By then, I was wide awake with a headache to boot for being awake too early.
Some days, CP and neighbors are two things that just don't go great together.

Didn't realize I was so popular!

2005-08-18T08:11:00.000-04:00

I apologize for not updating my blog lately but there has been a lot going on around the household. I have had tons of doc appointments and just personal stuff happening.
Todd and I had another fight, very unpleasant. Basically found out that all the weight I gained from taking my meds has made him unattractive to him. He feels we don't have a romantic relationship anymore. All I can say is we are working from that, at least it is out now. I told him that his attitude is his problem and he has to deal with the weight because it won't go away in one day. I'm not thrilled but he could have said he wanted to leave me, which would have been worse.
Todd also left his job of 6 weeks. It was a bad scene but it leaves us in a financial bind for a while. He is trying to be a permanent temp for a while to see where he does fit it in the business world now. Its temp work but temp work in this area is very steady.
I am back on anti-depressants now, Lexapro because of my anxiety problems. Not thrilled but what can I do? I have to go to a Pain Clinic as soon as my doc's office can schedule an appointment for me. Today is a trip to the gastroenterologist to see if I have developed an ulcer from all the meds I have been taking over time. I haven't been eating right for over a week now (before the fight) and my diet is limited because everything makes my stomach upset. I also have an appointment with a urologist next week because of a weird result from tests done. So weird the sample was tested twice to be sure. So off to another specialist.
So that is the update. Not a stunner but it is what it is.

Left to my own devices

2005-08-13T18:12:00.000-04:00

Well, Todd is off to his friend's house in CT this afternoon and won't be back until tomorrow. So I am very lonely. After last weekend's confrontation, I didn't have the heart to say he shouldn't go to see his friend. I know that he has every right to go and visit but the drive is over an hour and its not like he is down the street. Besides, I get nervous at night when he is not home. Hopefully I will have good pain and sleep control with my meds. I am going to need them big time.
Now I guess you are all wondering why I didn't go. Well, his friend isn't with his wife anymore and is going through a divorce, so I would be the girly third wheel holding back their manly fun. Besides they would want to go out and I am usually not feeling well enough to stay out all hours of the night. Never really was I guess.
Yup you guessed it I am having a "whoa is me" moment. I am sitting here watching Troy and with no one to talk to. So since I haven't written in my blog lately, I thought I would write my frustrations out here. Its better than getting into another spat with my husband.
I don't know what I want. I don't want to hog-tie my husband down but I don't want to be alone all the time either. Is there an in-between? I can't see one.
This is so stupid......I feel like I should know better than this. Why is this such a problem for me lately? I don't get it. I have a sink full of dishes with my name on it but I don't feel like doing them. Maybe tomorrow. ARGH! Why do I feel like this? I don't get it! I am smarter than this. Or I should be smarter than this.

Posting early today.....for good reasons

2005-08-11T02:50:00.000-04:00

Well, I am still in craptown with pain, which is why I am up and awake. Slaving away at the computer. Another reason is that my husband, Todd, has decided to call into work for today and have a mental health day as we call it around here. So that means he will be bogarting the computer most of the day. Luckily I still feel bad because of the barometric pressure so I will be in bed watching TV. Luckily we have a TV in both rooms and we can watch what we want. I just hope something decent is on and not crap.
So, I thought I would check in with you all and let you know that the pain is still in control. Luckily in the midst of this pain my long term disability company called and I sounded a mess and gave her all the answers to keep me on disability for at least another year or so. They like to call every once in a while so that they are getting their money's worth. I am lucky that I get it at all but I hate all the intrusions in my life like they don't believe me. Hell, Social Security believes me and they won't bug me for another year or so. So, why can't they?
Anyway that is the story for today children. Tune in for another one tomorrow.

Well, I knew it would happen.....

2005-08-10T08:35:00.000-04:00

All that activity on Monday has finally caught up with me so today is a bed day. And I had such a good day yesterday and Monday too. Darn it! So today's post will be short. Nothing much going on but luckily I have my meds that came via UPS to rely on today so I can get some relief. CP is such a drag man. Can't tell one day from the next anymore. Just a slight dip or rise in temp or barometric pressure sends me into a tailspin. YUCK!
So today is the I don't deal well with my CP. I hope you all have a good day.

An unusual good day....for once

2005-08-09T09:29:00.000-04:00

Well eventhough the humidity has been killing me I was a very productive person yesterday. Yeah....It suprises me too. I didn't feel like I did too much yesterday but looking back in general on yesterday I realized how much I did do.
I started off by doing the laundry. Only took an hour of my time, no biggie. I didn't fold the clothes when I got home. They just sat on the bed waiting for me to do it. Then I did the dishes, which by far is something that is very hard for me because of the amount of time I have to stand at the sink. Very painful. Well I made it thought that and after all that work.....I actually made dinner!!!!! Yeah a real dinner. Oven baked pork chops with olive oil and mesquite seasonings and baked potatoes. Rather yummy! Even after that, when Todd came home from work we went out to the grocery store and got some odds and ends. So looking back a rather productive day.

Passing on information

2005-08-08T11:45:00.000-04:00

For those of you who either do not have health insurance or perscription insurance here are a couple of websites that might come in handy for you. They are discount cards one can be used at a ton pharmacies that website is www.rxcard.com. The other is a program done by a bunch of makers of meds called Together Rx. I think their website is www.togetherrx.com. I hope these help some of you.
I am feeling well today though I am battling a recurring migraine that keeps coming back if I don't stay on top of it. So this is more of an informative post rather than a CP post of the day.
I hope you all can use the info.

Better day today!

2005-08-06T12:12:00.000-04:00

Well today is a better day. Todd and I discussed what was going on and he is having some "me" time at the local 1/4 mile racetrack watching time trials. While I am stuck at home staying close to the bathroom.
Just wanted to update the blog but my body won't let me do a long post. So that is all for now folks.

Ugh!!! husband's can be so infuriating!

2005-08-05T20:48:00.000-04:00

Well, as I sit here alone at 8:30 at night, my husband has decided to drink himself into a drunk stupor enough to go to bed. I HATE THAT!!!!!
I asked him twice to stop drinking but did he, no. I mean it was to the point that he was slurring his words and not making any sense when he did speak. I don't drink because of all the meds I am on. While I don't expect him to not drink, I do expect him to be adult about it. I know he has a lot of pressure with this new job (only 6 weeks), but c'mon. I don't know if I want to cry or just lash out. He already drank himself sick in April at his Godson's birthday party. I had to drive over an hour home very late at night, praying that he wouldn't want to get sick and I wouldn't have to pull over on the highway. I was nervous enough as it was driving at night, which I hate to do, but that nerved me up even more so. So when he started up tonight I could see where it was going. Another repeat of that night.
I feel like part of this is my fault. No, I didn't force him to drink the beer, but because I can't work I have forced him into a situation where there is this high pressure for him to work and work for the two of us. I try so hard to do things at home so he won't have to but there are some days that are better than others.
I hear him now snoring away while I am seething in the living room. Do I cry? Do I chastise? Do I yell? What do I do? What can or do I say? He's a grown person, he makes his own decisions.
I feel so sad.

Just another day

2005-08-05T10:17:00.000-04:00

Morning all!
Not feeling very well the last few days. The heat and humidity does not agree with me so I have been trying to deal with it the best I can. Which isn't well. I spent the day in bed yesterday and today I am spending it in the bathroom! Trading one for the other isn't plesant. I can't wait for this weather to break, it should tonight. Tomorrow the humidity should break and finally I might start to feel better.
Sorry for such a short entry. The brain is not working well lately.

After a step away from the TV segment...

2005-08-03T09:03:00.000-04:00

and a little more clarity. I am glad that they did the story on FM (AKA Fibromyalgia) but it was way too short. I still haven't heard from the TV station and I don't expect to because the letter was rather scathing. Hey if they are going to do a story on a controversial illness they better have their ducks in a row and speak to as many people who KNOW about FM in the area as possible, not just a patient. The patient they interviewed could have been me, but no true specialist on FM, which is readily available in this area. We have one of the best Dr. Don L. Goldenberg, who is a commrade of Dr. Russell in Texas, Dr. Clauw in Maryland and Dr. Bennett in Oregon. If he would know about the ins and outs of this study, he would. They didn't even talk to him. That highly annoyed me. At least talk to a person who knows of which he speaks. Luckily I have a therapy appointment this morning so I can talk this anger thing out about the TV coverage. It really is bugging me along with the negative CT scan....basically I am "normal". Todd is taking me out to dinner after he gets home from work tonight because I am so down about the CT scan. I wish they would find something...there has to be a reason why I feel so crappy all the time, beyond the FM. I can just feel it something is different than that FM feeling. When you know you know....I call that a niggle.
I would like to send a message to a frequent reader of my blog Amber....I know her mom has FM as well as other painful illnesses, please send her my love and I hope she gets to feel better soon. My heart goes out to her.

Update 4:05PM Still no reaction from the news station.....not that I expected any but one would have been nice.

Let down again by news media

2005-08-02T23:46:00.000-04:00

Well, after being slightly excited by the idea if having a segement on FM on the news tonight, it let me down by being sucky. It was so bad, that I wrote the TV station. Here is the letter.

I would just like to comment on the segement you did on the ingredient in cough medicine Dextromethorphan and its help in decreasing the pain of Fibromyalgia. As someone who suffers from this illness, what your story did was a disservice to people who have Fibromyalgia, who are 6 to 10 million strong. Dextromethorphan in cough medicine is dangerous to take because of all the other ingridents in the medicine to help with coughs. There is only ONE study that backs up this result and you didn't even talk to any Fibromyalgia specialists, who live in Massachusetts. Dr. Don L Goldenberg at Newton-Wellsley Hospital is the major specialist on Fibromyalgia in this area and you did even talk to him about this study. Another ingredient in cold medicine, Guaifenesin has also been studied as a help for people with this illness, which is the brainchild of Dr. Robert Bennett in Oregon, which wasn't even mentioned. Needless to say, your story did not even mention enough information to even give people warning that they have to change their way of life for these two meds to even work properly. For example, Guaifenesin therapy people must stay away from all products with salicylates for it to work properly and there is quite a list of these things to stay away from. Most doctors don't even know much about Fibromyalgia to even give proper dosages to sufferers of these meds to work in the way it should for us sufferers.
Now you will have all these people running to their doctors asking about cough medicine and Fibromyalgia.
I have been suffering with this illness for officially 5 years now and not even narcotic meds will help the pain of this illness.
Please in the future, do more research for your stories that have very controversial outcomes. I am a fan of your news shows and am very disappointed in how this story was treated.
While I am pleased that Fibromyalgia was even mentioned at all in a news segement, more research must be done before you just throw out this information with little backing.
At least at the end of the segment, you mentioned talking to your doctor first before starting on this therapy.
Please take this information to heart, since so much erroneous information is out there about Fibromyalgia, people just take anything to take away the pain. These people could hurt themselves or make themselves worse.
Thank you for the mention in your news but no thank you for the quick mention of the medicine and its lack of possible bad side effects.

It shouldn't have surprised me, but it did. Let down by the media again.

Well I finally got an answer!

2005-08-02T15:20:00.000-04:00

it wasn't exactly the answer I was looking for but at least I got an answer period after calling for three days. According to the CT Scan, all of the scans are normal. So I can take vasculitis off my list of possibles for feeling so crappy.
I am mad and sad at the same time and I am just so tired.
I just wanted to update the blog....now I am off to bed. Just so tired.

Okay I must say it I am pissed!

2005-08-02T08:15:00.000-04:00

Just as I was waking up this morning to the blaring noise of my hubby's alarm clock (which alone is annoying) I had to hear what will be coming up as a story on our local news at 10. What thing in your medicine cabinet can help your FM........for those of you who don't know, it is cough medicine...in specific two major ingredients in cough medicine, Dextromethorphan and Guaifenesin. First off, neither have shown any true help with FM symptoms (they think it may be a placebo effect in both experiments) and second you have to alter your life so drastically for them to work that it isn't worth it for some people like me. Heck you can't even take aspirin...ASPIRIN while on these therapies. No offense to Dr. Robert Bennett and the fine work he does up in Oregon, but it's just not worth it. While I am thrilled that my local TV station is giving some airtime to the cause of FM, that they may give out the wrong or erroneous information might scare me more than thrill me.
Other than that still no info on the CT scan....highly annoyed in that.

Update: 2:02 PM
Well I found out that the Radiologist has signed off on the CT results on Friday and my doctor should have had them either yesterday or Friday. Still I have no call!
What the heck is going on????? Here I go calling again! Maybe if I call my GP I might get some answers instead of calling my Rheumy! Here goes nothing!

No Call Yet for CT

2005-08-01T15:27:00.000-04:00

Well, no CT results yet.
Just thought I would let you all in on the little info I have so far. You know when I do.

Just another Manic Monday

2005-08-01T08:42:00.000-04:00

I was wondering why my back was acting up yesterday and now I know......rain! The Human Barometer strikes again! (Please add superhero music here!)
I still haven't heard anything about my CT scan and now I really want to know. I mean it's almost a week and aren't Radiologist always on duty at one point or another? Might be me being just a little oh naive of me but aren't they? Not like they are on beeper duty but isn't there always at least one at the hospital?
Today will be a bed day for me. Rain helps me sleep so that will be a plus, but my back will be in agony! Now the weather person is on TV saying that the weather will be up and down all week. Great now I have no constant weather patter that will help with my pain. At least I will be home alone and not moan and groan and bother anyone. I can do it in peace!
Well, before I came online, my dear (feel the sarcasm) husband was supposed to take out the garbage and lo and behold .....the garbage was where it was yesterday for another of his odd excuse. So it sat at the door waiting to be taken to the dumpster. You see, where we live, if we put the garbage outside, 1) the animals will get at it because we live in a very rural community and 2) our landlords have this rule about leaving your garbage overnight for the dumpster...I think it has to do with rule number 1. Speaking of the landlord, I have to bring the rent check over for the month. UGH! I hate doing that.....chalk that up to my agoraphobia that I am still working through. Since Todd isn't home, I have to do it now. Blah!
Well enough complaining, I will be off and time for bed until I have trudge to the rental office to give the rent check.

http://www.evtv1.com/pre_frame_andy.asp-itemnum-321-bg1-99CCCC-font-000066-aid-151

Just stinkin' thinkin' again

2005-07-31T23:30:00.000-04:00

Well, as I try to get some sleep tonight I just feel the overwhelming urge of doom. I still have no results from my CT on Wednesday and not that it bugs me, but I just want to know. Do I have a vascular problem or not? Just tell me. Either way I will be happy I want an answer. Hopefully I will get a call tomorrow from the doctor and get my answer.
I just feel so helpless, waiting for this result. Silly isn't it? It is just a test, a rather simple one at that. Pacing will just wear a hole in the rugs so that is pointless. Being angry is just wasted energy that could be put to better use. So waiting is my only option. I have already called the doctor's office and no answer back yet so I don't want to be a pest. So I will kindly sit on my hands and wait. Which I have said before is not my best quality.
I feel useless, I can't exercise just in case something is wrong but sitting on my keister doesn't do me any good either. UGH! I wish they would just tell me.
Since I haven't heard anything the mind begins to wonder. It is something super serious? Just nothing? The stress is really getting to me.
I just want to go back to 6 years ago when nothing was wrong and I was healthy as I could be at 27 years old. Now I feel over 40. Even those "Real Age" tests tell me I have the health of a 43 year old. (I'm 33 by the way)
I feel torn. I want them to find something and on the other hand I want the test to be negative. Any answer would satisfy me at this point.
I feel useless, the laundry I did was not because of me, but because of my husband who needs his dress clothes for work. When is it my turn? When can I be put out front? I try to do that for myself but it seems to be put on the backburner everytime. Just a giving type of gal I guess.
This negative thinking is not good for me and I know that but I don't feel "human" anymore. I feel like a blob, streched this way and that. Here take this pill, take that pill, do this exercise, that exercise. Sleep is my only refuge and I want to do it all the time now. I prevents me from thinking so much. Is there a middle ground for chronic illness? Does anyone know? I haven't found it yet. Send me a message if you have an idea. I try to find a hobby, but most use my hands and they don't work the best. I only have so much money so that cuts so many other things out. So what do I do, I emotional eat and sit and watch TV or putter around the computer all day. Not much of a life and on top of waiting for test results its torture.
I have an appointment with my Psych NP this week and will talk to her about that .
Normalcy.......something that used to be so oh common place is now something to strive for and will probably never have again. I have come to the realization that I may never work in a company ever again but what will I do with all this free time I have now that Todd works 8 hours a day plus some days. I am alone
When we are a little financially stable, I want to go to my favorite place in the world, the Museum of Fine Arts in Boston and sit in what I call the Budda Room. They have a room with different size Budda statues and it is off the beaten path. It is so peaceful there. I just sit and think and try and figure things out. Sometimes I cry or get a little misty but I guess that is what Budda can do for ya. I need an outlet....I just don't know what that is yet. I have so many roadblocks in my way it seems. I feel overwhelmed most days and when I HAVE to do something it is a real push to do it, like going to the laudromat today to do laundry. I am out cold for hours after and may still be tomorrow.
Like I said hobby I need a hobby. I guess this Blog is a hobby to a degree, but it only can do so much.
I guess I just feel very low right now...nothing seems to fit. Or I don't seem to fit it.
Well, I am feeling a little sleepy so I will try and get some rest. I hope it comes soon since it is the only peace I seem to get lately.
I hope all of you are doing well and please feel free to post comments at any time....good or bad. You may see what I can't see.
I wish you all happy dreams!

Well, I guess some people are just not the friendly type!

2005-07-29T15:13:00.000-04:00

In the post below, you will see that some random person has decided that I am a hypochodriac. Personally I find it funny. Considering I NEVER say anything negative about others to people I found it humorous that someone who doesn't even know my situation enough to know whether or not my "illnesses" according to him/her are real.
Sorry, bud, I have 6 plus doctors who have diagnosed me as to what I have, as well as the Federal Government, and what you or anyone else will or could say won't make a difference. I really shouldn't even respond to the comment, but I feel that for others who read my Blog and need to feel someone is in their shoes too, will not be judged like this random person did yesterday.
Now, I know that this is a public forum and anyone can post and say whatever they wish, I understand that. When the criticism is warranted, I will take my lashings like a proper soldier. I will be the first to say that my story is not only not an original story, it is a story that is 6 to 10 million strong.
So please feel free read my Blog. I insist upon it, but keep in mind that my experience in life is not yours or anyone else's. When I am wrong, call me on it, but please out of the blue references to hypochondria was a little off the mark and just plain rude.
Thank you also to the other random poster who tried to defend me. It is okay, it was like water off a duck's back. I can take the hit. As I said this is a public forum and anyone can feel free to express themselves in any way they like. Just be prepared to 1) own it and 2) expect backlash from either myself or others who are in the same boat I am in.

Okay now that this is out of the way......

I am feeling better today, tired but okay. I was able to do a couple of errands and it was back to bed for me. This is the first time I have been up for quite a while today and it feels funny, droopy I guess. I also have a movie recommendation for you all. The Kevin Spacey movie, "Beyond the Sea". I just finished watching it and it was awsome. I didn't know he was such a good singer. Okay, it may not be a movie for everybody but give it a chance, it isn't that bad.
Well, that is the update for me today.
I hope that you all have had a good day and I will be back at the same bat time, same bat channel.

Oh I almost forgot, I haven't gotten any results back yet from the CT. I called the office so either I hear from them today or on Monday. No news is good news......right???

Feeling rather run through the ringer

2005-07-28T09:14:00.000-04:00

Well after my elation of getting through the CT with little problem, my body has decided to take a turn to sleepyland.
I didn't realize it wore me out so much. So I am off to bed for the day eventhough I have chores to do....they can wait though, which is a good thing.
Just wanted to check in and let you know I am okay just exhausted.
I hope everyone has a great day!

Update 11:59 AM
Woke up an hour ago with a really bad feeling in my stomach. Almost like the flu. I was hot and flushed, felt like I was going to hurl and all around tired. It was almost like a panic attack. I was resting/sleeping to the TV when suddenly I sat up and felt just plain awful.
I was going to try and get some errands done but it looks like the dye and I don't get along. I still feel blah but had an apple to try and calm my stomach. Has anyone had a reaction like this?
Any help or advice would be appriciated.
Thanks.

Update 6:25 PM
Feeling much bettter just tired as usual. They had me hold my left arm up for the test and I am still sore from that. I think I just need another good night's sleep.
Adios amigos! Until tomorrow anyway!

Feeling rather silly....

2005-07-27T16:21:00.000-04:00

not sure if it is from the 32oz. of diet Coke I am drinking or the Ben & Jerry's Dublin Mudslide ice cream I treated myself to after my CT but here is a little diddy that my local free weekly paper had in it today and I thought I would share.....

New Englanders by Jeff Foxworthy

If you consider it as sport to gather your food by drilling through 36 inches of ice and sitting there all day hoping it will swim by, you might live in New England.
If you're proud that your region makes the national news 96 nights each year because Mt. Washington is the coldest spot in the nation, and Boston gets more snow than any other major city in the US you, live in NE.
If your local Dairy Queen is closed from September through May, you may live in NE.
If you instictively walk like a penguin for six months out of the year, you live in NE.
If you had a lengthy telephone conversation with someone who dialed a wrong number , you live in NE.
You know you are a New Englander when:
"Vacation" means going anywhere south of New York City for the weekend.
You measure distance in hours.
You know several people who have hit a deer more than once.
You have switched from "heat" to AC in the same day, and back again.
You can drive 65 mph through two feet of snow during a raging blizzard without flinching.
You install security lights on your house and garage, but leave both unlocked.
You carry jumper cables in your car and your girlfriend/wife knows how to use them.
You design your kid's Halloween costume to fit over over a snowsuit.
Driving is better in the winter because the potholes are filled with snow.
You know all four seasons: almost winter, winter, still winter, and road construction.
Your idea of creative landscaping is a statue of a deer next to your future spruce.
Your neighbor throws a party to celebrate his new shed.
Your 4th of July picnic was moved inside due to frost.
You have more miles on your snow blower than your car.
You find 10 degrees "a little chilly".
You actually understand these jokes, and pass them to your friends.
Sad but true!!!!!

Well, I made it through!

2005-07-27T15:35:00.000-04:00

Well, here I am back from my CT Angiogram. Not a bad test as tests go. The nurses were great and even let me see my pictures! I didn't know what I was looking at until the nurse pointed them out to me, but hey they thought it was pretty cool of me to want to see them. I guess they just deal with the in and out paitents who complain all the time. I also asked if the nurse could be my IV/blood test nurse all the time. She was awsome! That is saying something for someone who has FM like I do.
The weirdest part was when the dye went into the IV. Now I read about the warming you feel when when it is put in and they warned me too (twice) but I didn't expect my entire body to feel flushed. It wasn't uncomfortable but just a strange feeling for a minute. They also warned me that women usually feel like they have to go to the bathroom at the same time but that is normal too. Yup, you guessed it, that happened too. Needing to pee all the time is nothing new for me. I always gotta go. Also the machine (AKA metal donut) talks to you. It tells you when to hold your breath and when to breathe normally. I was expecting the nurses to talk through a microphone. I guess that is a thing of the past.
I have to wait a couple of days for the results but I am not worried...then again, I had no clue if what I was seeing on the screen was normal or not.
So that is the update......I guess we wait until Friday. Can I wait that long??? Patience is not my strong suit.
Thank you those of you who took the time to write and wish me well. It was and is truly appriciated. It is amazing what the internet has done for people and communication, in a positive way, regardless of what people say about how it is isolating people.

I will let you all know as soon as I know!

Thanks again for your support!

Today is the day!

2005-07-27T09:06:00.000-04:00

Well today is my CT Angio...not looking forward to the dye part since I don't know how I will react to it.
We will see I guess.
I am going to rest before my test so I will update later.

Countdown to the CT Angiogram

2005-07-26T13:55:00.000-04:00

Well, 24 hours for now I should be on the table watching the ceiling and having the warm fuzzies because of the dye.
Is it a bad thing to want them to find something wrong?

It just keeps gettin deeper!

2005-07-26T08:22:00.000-04:00

Well after a sort of good night's sleep and a day to ponder my situation still sucks! I am exhausted but at least I did the minimal amount of dishes that were in the sink this AM. Luckily I am having a delivery from UPS for my meds! Hopefully I won't be too whacked out from my Soma that I won't hear them! We will see soon enough. They usually come at about 2 or so, so at least I know when to expect them.
Not the happiest camper on the planet but at least I get to sleep finally. Well, in the way I should!
Nothing seems to be going right this month. I have had more testing done on me in the last 31 days than the last year combined. I feel like a walking target.
Hey everybody.....bring it on....I'll just sleep through it!

Update 1:49PM
Sleep what is that?
I haven't slept since this morning when the alarm went off for Todd to go to work. Just trying to relax for tomorrow, but life won't let me. Between dealing with the bank, phone calls here and there about all sorts of stuff, going to the Post Office etc. Now I am waiting for UPS to get here so I don't have to get dressed back up and open the door in my all togethers. So a nap is out of the question until Brown gets here! They better get here quick I want a nap.

Just add one more to the pile!

2005-07-26T00:25:00.000-04:00

Well, came back from the Rheumy's today. I felt beaten up by a prize fighter and I lost! He won't give me pain meds to help but he did at least up my soma to help oh I guess cut down on the pain I guess. He said most Rheumys won't go with short acting meds for chronic pain, which is my only option right now because of price. He wanted me to go back on the Duragesic but I emphaticly said no way one because I felt the med controlled me and it was too expensive for me and my husband to buy. He won't go the short acting med route at all.
We went back and forth for what seemed forever but I guess was about 20 minutes and all I got out of him was taking 4 Soma up from my 2 Soma a day to help with pain.
As you can see he so wanted to help me (feel the sarcasm) but wouldn't budge on how he wanted to help me.
Suddenly as I was about to wrap up this 30 minutes of pure torture, he goes well, I am still concerned about this elevated SED rate. My SED rate has been high since day one and nothing has stopped it from going up or down it just stays in a general range and my C-Reactive Proteins haven't done diddly either. On top of all that, my diastolic (the bottom number on the blood pressure for those who don't know) number doesn't seem to want to get with the program and stays in the 90's at all times, while my systolic is great and has come down since I have been on 100mgs of Toprol a day. So now on Wednesday, I have to go in for a CT Angio to make sure I don't have Takayasu's Arteritis.
Since it is pretty new to me, I will share what it is with you as well.
According to www.takayasu.org , the definition is as follows:

What is Takayasu's Arteritis?
In 1908, there was an ophthalmologist named Dr. Mikoto Takayasu who reported ocular changes in a 21 year old Japanese woman. Subsequently, Dr. Onishi and Dr. Kagoshima mentioned similar manifestations with the addition of absent pulses in the arms. Data collected through the years framed the criteria for classifications and presentation of Takayasu's Arteritis. By 1975, the disease was formally labeled Takayasu's Arteritis.

Takayasu's Arteritis is a rare, chronic, inflammatory disease primarily of the aorta and its branches. The subclavian, renal, carotid, and the ascending aorta arteries can also be involved. Takayasu's Arteritis affects more females than males and usually begins in the 2nd or 3rd decade of life. TA is occasionally called "pulseless disease" because there is difficulty in detecting peripheral pulses that sometimes occurs as a result of the vascular narrowing. It is also common for a patient to exhibit vascular bruits, and symptoms of their arterial involvement. The cause of TA is not known.

Symptoms may include: dizziness, fainting, low grade fever, muscle aches, weight loss, circulatory deficit, vision problems, angina, joint pain, claudication, malaise, hypertension, night sweats, stroke, fatigue

Making the diagnosis of TA can be extremely difficult. Unfortunately, it is very common for the disease to "smolder" in the walls of large blood vessels for many years, causing only non- specific symptoms, until major complication results. This can eventually lead to occlusion, complete closing of the vessels. There can be major complications resulting, in the dilation of the aorta with stretching of the aortic valve in the heart, resulting in severe valve damage, and critically reduced blood flow to an arm or leg. In addition, a stroke caused by high blood pressure of the blood vessels going to the brain, renal failure, and many other serious afflictions are also possible.

Diagnosis may be supported by abnormalities in the following: angiography (especially of aorta and branches), blood tests :sed rate (ESR), c-reactive protein, Albumin, Globulin and Fibrinogen, complete blood count, biopsy (rarely done), chest X-ray, ultrasound, arteriographic data, blood pressure measurements, magnetic resonance imaging studies, electrocardiogram

Diagnosis is difficult due to the erratic course of the disease.

Delay in diagnosis is common even when working with physicians experienced in vascular disease.

Synonyms include: pulseless disease, aorta arch syndrome, reverse coarction, young female arteritis

It is important for the Takayasu's Arteritis patient to work closely with his/her physician. make sure your physician accumulates facts on all your laboratory data, routine visits, medications, diagnostic tests, and surgical procedures. Make sure you listen to what signals your body may be telling you. Work together with a qualified physician to detect regression or progression of Takayasu's Arteritis.

So I get a beat-down from my Rheumy and I have to have yet ANOTHER test done. I don't mind the CT scan but I do mind the dye part....IV(big needle phobe here ) and all.
I warned him I would be a difficult case and I am proving it to be true.
So that was my day. Lovely wasn't it. On top of that he decides today of all days to harp on my weight. Figures huh? Well, how can I do something about my weight when I may have a heart problem!!!!!!
This is the second time he has mentioned Takayasu's Arteritis to me in a month and so I would guess that on the list of things that the SED rate may be indicating, he seems to be honing in on this one thing in particular. Not vascular illnesses in general but this one in particular. I mentioned something about it, but he says he can't rule it out yet.
Now from what I understand the treatment is close to what people with Lupus go through with the immmunosuppresants and corticosteroids, etc.
I don't blame Todd, he can't leave work at such short notice but I really don't want to do this alone.
I don't know how to feel right now to be honest, mad, scared, angry. I don't know.
But that is my update from the oh so pleasant visit with the Rheumy. So right now I am just annoyed and scared. I don't know what to do or believe.
UGH! Being sick really sucks!
How should I feel right now??? Anyone familiar with this illness? I know that it is related to Paget's disease of the heart which my grandmother has but in the bones instead. They are similar in design especially when it is Paget's of the heart. Is this inherited? Anyone have any info?
Thank you for listening everyone....I know at least I can count on you all for support. Even if it is just to read this post. Thank you.
If anyone has any info to pass along it would be greatly appriciated.

Oh why today....why now?

2005-07-25T13:14:00.000-04:00

Okay I am warning you all at this point that this is a why me....oh whoa is me post! So if you don't feel like reading about feeling sorry for one's self, stop now.

Okay those of you still with me, here is the ride.
I looked at all of the things I have to do today on my own.(Todd is at work.) Take out the garbage to the dumpster, do dishes, go to the doctor, do laundry. IT IS TOO MUCH! Too much today anyway. I feel nauseous. All I can stomach is diet coke and a Pria bar for lunch. I feel like shaving my head because my hair looks like crap. I have been coloring to try and make myself feel better the last year or so and now I am TOTALLY NOT happy with the color at all. I want my old hair back! You know, I am not sure what color it should be anymore. So I thought out loud and wondered if I should just shave it all off and save myself the grief. Todd being the man that he is, doesn't understand why and I should just let it grow out.
I feel useless and like a burden. I don't want to go back to bed because I won't get back up and I have my Rheumy appointment at 3:15 this afternoon. So I can't hide for squat today. I have to deal with what comes. TV is not my friend at the moment either I can't find crap to watch...even Jerry Springer who is good for some laughs is not even holding my attention for the briefest of moments. So here I am watch the National Geographic Channel watching something on monkeys. As you can tell by the amount I am typing it is really holding my attention. Actually trying not to be sick, is holding my attention more than TV. Anyway, normally I would chat away on my message board but there are more important things going on there than my whoa is meing. Talking to myself is what I do best anyway, because it seems no one listens to me from doctors to my family.
There are times I wish I had an illness more cut and dried like heart problems or cancer even (yes I know...please don't take offense). At least they know how to treat those illnesses, what meds work, what does not.
Fibromyalgia is just this cloud of confusion that most doctors DON'T want to touch nevermind talk about to you. Most of the time, it is a bunch of Black Magic anyway. Sometimes doctors don't even know what works but a combo of meds seems to work for one person and they don't know why. Try that combo on someone else and either nothing happens or it makes things worse.
Right now, all I want is some pain control so I can sleep, do things on my own so that I don't have to rely upon Todd who works 40 hours a week, and not feel so overwhelmed when it comes to these simple chores. I know they are simple, which is what makes things so infuriating at times. I am 33 years old. Quite capable of cleaning dishes, doing laundry, cleaning an apartment, and other simple things if I had a normal physical constitution. Just looking at this list annoys me to no end that I can't do them on my own most days. That I have to figure out a way to do them or else they don't get done. Pacing myself has NEVER been a strong suit of mine. I have always been the independent type and did things for myself. Now I rely on Todd for most things. Heck, I had to give up handling my savings and checking accounts, not once but twice in a year because I just can't handle it. Okay yeah, sure, some people can't add, I can't do that either, but I used to work in a bank and did very well at it for two years. Now I can barely keep a checking account from overdrawing. I don't know why it happens, I couldn't even tell you how it happens but it does and there I am looking at a negative balance on my account. Something so simple, yet it evades me.
Out of all the things I have to do today, I have done one thing, take out the garbage. Mainly because it was getting rather smelly and it was either do it or it was gonna get pretty stinky in here. So there was no choice there. I see the dishes and the bathroom need cleaning but the energy isn't there. On top of that, if I overdo things, I get sick and I am in bed for days. I need to find a way to balance things. I hope that the doctor has an idea of what to do, because I sure don't. The only thing that helps are pain killers. They help me ignore the pain just long enough for me to get through what I have to then I can crap out on the couch or bed.
Okay the downside of pain killers, most docs don't want to give them to people with Fibromyalgia and they fear addiction. Hell, I am NOT asking for Oxycontin or Morphine, or even uppers to get energy, just something to help. I don't even know if I have the energy to put up a fight for them today. I was in a fighting mood a couple of weeks ago and got Darvocets for a week to see if they would help. Now I don't know if it was a one shot deal and that is it or if I can convince my Rheumy that the Darvocets will help me function more like a human rather than a 3-toed sloth. On the Darvocets, I was able to clean my shower for the first time in months.(We have very hard water so it was getting pretty rusty looking) I was impressed with myself. Unfortunately I am going to need at least 4 a day(one to get up, one at lunch, one at bed and one just in case during the night) just to function "normally". Is that bad? I don't want to look like the infamous "drug seekers" that doctors and especially nurses and medical assistants seem to gossip about from what I understand.
My GP wants me to go back on the Duragesic Patches but they are extremely expensive and the DEA are watching doctors who prescribe them like hawks. Besides they didn't work out very well for me and didn't control my pain the way I wanted it to. I want to be in control of my meds not my meds in control of me. I would look like a drunk all day long , that is not what I want. I just want to be able to get things done without thinking about pain or fear pain. Is that too much to ask? I want to be able to do things on my own now without having to use up all of Todd's free time which working 40 hours a week is now at a minimum. I am disabled, I am home all day, I should be able to do SOMETHING! Know what I mean?
Well, that is enough from me for now. You will all get sick of me writing if I keep going for another hour until I have to leave for my appointment.
Cross your fingers everyone that I get the guts to ask for what I feel I need and that I get what I need.

Lance, I think I wore out your "LiveStrong" bracelet!

2005-07-25T09:43:00.000-04:00

For a while now I have been wearing, just like everyone else it seems a Lance Armstrong "LiveStrong" bracelet. Now I wear it for different reasons than others did. It was my touchstone for when I had really bad pain days. All I had to do was rub the letters on the bracelet and I could take a deep breath and move on to the next. Well, it seems I wore it out. The inspiration has left it for me.(Is there warranties on inspiration?) Funny part was it left the day he won the Tour (yesterday). Part of me wants to email the website and send him an email I know he may never get saying exactly this.
Yesterday I had a very emotional day because of it. I have nothing to hold me strong anymore. I have no inspiration, no "rolemodel" to help me get through the next second, minute or day. I am so tired of fighting this illness, mostly alone. Suddenly there are no places for me to express myself, minus here. I go to a message board each day for people who are in Chronic Pain, but I feel that the issues I have are too big and would overwhelm the message board right now. I feel that it would even overwhelm here as well, but at least here I am writing for myself without regard if anyone is reading it or not. Personally I don't care if anyone is reading it (no offense to anyone who is), this place is for me. If it helps someone great, if not fine. Take what you want from what I have written and leave the rest. I enjoy when I get an email saying that what I have written has touched someone, but it is not necessary.
I feel at the moment I am a piece of wasted space, I can't do things. I can't hold up my end of the bargain. I feel that I have let people down. I let me down. The idea of "LiveStrong" meant something different to me than to others, now I feel that what I tried to embody in that phrase is a lie. I didn't try to "LiveStrong" I just tried to live and now realizing I didn't do it "strongly" makes me feel bad. I have had to take the bracelet off. I am not worthy of wearing it anymore. I won't throw it away, but it will go on my rearview mirror. I have no fight, no "strong" left anymore. Not now anyway. I have a Rheumy appointment today and I have to fight for more pain control. I have none at the moment. "Strong" has left the building.
Sorry Lance I am proud of you as we all are but I can't be "strong" for you anymore.

Go Lance Go!

2005-07-24T09:58:00.000-04:00

By 1:30 EST the Tour will be over and Lance will have won his 7th.
Time to retire good ol' boy! You done good! Greg LeMonde would be and probably is very proud!

In a nasty mood.

2005-07-24T08:10:00.000-04:00

I just don't know where I seem to be in my illness right now. I feel okay outside, well as well as can be expected, but inside I would just rather hide and not have to communicate with anyone.
Is there anyon's bed I can hide out in today?

Overthinkng? or Boredom?

2005-07-22T13:06:00.000-04:00

I just recently came up with a couple of sets of lyrics that basically sum up how I have been feeling lately since Todd has gone back to work. One is by a progressive rock band called Dream Theatre and the other is a Bruce Springsteen song that was really a Jimmy Cliff song.

So, without further ado ....the lyrics

TRAPPED
(Jimmy Cliff) Bruce Sprinsteen

Seems like I'm caught up in your trap again
Seems like I'll be wearin' the same old chains
Good will conquer evil and the truth will set me free
And I know someday I will find the key
I know somewhere I will find the key

Seems like I've been playing your game way too long
Seems the game I've played has made you strong
When the game is over, I won't walk out the loser
I know someday I'll walk out of here again
And I know that someday I'll walk out of here again

Well now I'mTrapped
Ooh yeah Trapped
Ooh yeah Trapped

Seems like I've been sleeping in your bed too long
Seems like you've been meaning to do me harm
But I'll teach my eyes to see beyond these walls in front of me
Someday I'll walk out of here again
Someday I'll walk out of here again

Trapped Ooh yeah
Trapped Ooh yeah
Trapped Ooh yeah
Trapped Ooh yeah

Seems like I've been playing your game way too long
Seems the game I've played has made you strong

Trapped Ooh yeah
Trapped Ooh yeah
Trapped Ooh yeah
Trapped Ooh yeah

Pull Me Under
(Kevin Moore) Dream Theatre

Lost in the sky
Clouds roll by and I roll with them
Arrows fly
Seas increase and then fall again

This world is spinning around me
This world is spinning without me
Every day sends future to past
Every breath leaves one less to my last

Watch the sparrow falling
Gives new meaning to it all
If not today nor yet tomorrow then some other day

I'll take seven lives for one
And then my only father's son
As sure as I ever did love him
I am not afraid

This world is spinning around me
The whole world keeps spinning around me
All life is future to past
Every breath leaves me one less to my last

Pull me under Pull me under
Pull me under I'm not afraid
All that I feel is honor and spite
All I can do is to set it right

Dust fills my eyes
Clouds roll by and I roll with them
Centuries cry
Orders fly and I fall again

This world is spinning inside me
The whole world is spinning inside of me
Every day sends future to past
Every step brings me closer to my last

Pull me under Pull me under
Pull me under I'm not afraid
Living my life too much in the sun
Only until your will is done

'Oh that this too, too solid flesh would melt.'(with a little help from Shakespeare)

Both songs got me thinking as I am home alone waiting for Todd to get home from work, which I already know will be a long day. I am just feeling like a caged animal and I am not sure why. I have a car. I could just leave and go out. I don't have to answer to anyone as to where I am going but I feel stuck. Is it by outside forces or by my own doing? Where am I trapped in my mind or physically? I just don't know. Is it my illness that has trapped me? Or am I letting my illness trap myself? I am so restless, but I have no one to go to, no one to share things with. I don't have any money right now credit card, checking, savings or otherwise. So even if I did have a destination what is free in this world anymore?
I just feel like I am always waiting for something to happen to me or for me. I feel trapped by my body and my illness. It is like inside me, my body doesn't know what exactly to do with me. Whether it wants me to be totally disabled or just enough for me to slowly loose all that would be and is important to me.
I feel tears burning my eyes but I really don't have cause to spill them. There are people who are so much worse off than I am in this world but I feel for me to. I am caught in the world of the abled and disabled. At this point I am not sure even which side I am tired of fighting to become. Do I want to be known as disabled or abled anymore? Neither really gets me anywhere so I am stuck in this wash of a little of this world and that world, none of which seem to go together. I feel like two jigsaw puzzles, whose pieces were tossed in the air and then a ton were taken away and now all I have left are two incomplete puzzles, none of which will ever be finished. I didn't do it, its not my fault but why am I the only one who feels blamed when something happens. The "I should have known better" speech is one I heard many times as a child and still hear in my head regardless that I haven't seen either of my parents in years.
Can you be a failure in illness? I know that you can be told you are a failure at life (which I feel I am felt to be made so) but a failure at illness? Could there be more I am doing to help myself? Beyond what I already do?

Could there be more????

Results of Dr Goldenberg Appointment

2005-07-18T16:41:00.000-04:00

Well, things went pretty good. He seems pretty impressed by what I am trying to accomplish with as little meds as possible. I told him what didn't work (Neurontin and Cymbalta) and what seems to (all the other meds I am on) and what has changed in the last 18 months since I last saw him.
Well, he wants me to go on Lyrica as soon as it becomes available in the US, which should be by the fall according to him. Unforuntately it was due to be out a year ago but because of the whole Cox-2 issues during the past year, the FDA are being very cautious of meds that help with pain. Eventhough Lyrica, which is more like Neurontin, than Bextra and Vioxx, they are being super-cautious and want to make sure that no mistakes like those that occurred happen again.
Beyond that, he is happy with my overall health and wants me to try and excercise more. I try but working out is still a new thing for me.
Now I will wait for the letter he will send my doctors and myself and see what the definite suggestions will be.
As usual they went as expected...even getting lost in the hospital....again!
Oh well, the price of going to a big hospital an having no clue where you are going.
That is all for now. See you all next update!

Appointment with Dr. Goldenberg Today

2005-07-18T10:32:00.000-04:00

Well, its finally here, the day I go and see Dr. Goldenberg. I am a little nervous because I have to drive alone to Boston, but beyond that everything I am looking forward too.
I hope that he can suggest a new direction for my meds. It seems I have tried everything with no success. Maybe in his latest research he came across something that could help.
Each day about mid day, I am still feeling nauseous but each day it is getting better. I think that the Neurontin is messing my system up. It isn't the greatest day to go visit Dr. Goldenberg but I hope he can help with some ideas.
Wish me luck everyone!

Day 2 of pain free? or pain less?

2005-07-16T08:59:00.000-04:00

Well now that the pills have been in my body for two whole days now and the nights are still the worst. I still wake up in pain so I keep my pain pills for the night time. So between the the Dalmane and the Darvocet I only wake up a few times a night to use the bathroom. Rather than about 10.
Today Todd and I are going around and try out his new car. We finally picked it up yesterday. He was cruising around all night enjoying himself for once. It is a Dodge Neon SRT4. Basically a Neon with a kick! Sorry couldn't find a car! He is very happy and so am I .....I get my car back!
Well, I have to go and shower, and get ready. Todd and I are going to lunch today too!

Finally some relief....okay just a little.

2005-07-15T09:09:00.000-04:00

Well, I had my doctor appointment yesterday and I would have posted but I had a hard time logging into my Blog for some reason last night. So, I couldn't share my news any sooner.
I told my doc, that since Todd is going back to work, I can't rely on him anymore to do any of the housework that needs to be done like dishes, laundry and general picking up. I need to be able to do these things on my own now and the meds I am on at the moment do not give me that ability to do that. So yes, I got on my soapbox and let him have it. I also told him I fell in the shower and that none of my meds are controlling that pain either. I also told him about the night of incontinence.....very embarrassed to tell him about it though. I have stopped the Cymbalta because it wasn't working and I am also stopping the Neurontin for the same reason. Why spend the money on something that doesn't work? So finally he agreed to help me. He wants me to go back on the Duragesic Patches, but I don't have medication insurance and these things cost starting at around $200 for only 5 patches, which is 10-15 days of medication. So for now I am on Darvocet-N 100's until I see my Rheumy in about a week and a half so we can find a long term solution. Any recommedations that you have that would fall between Vicodin and Duragesic would be helpful because I want to make a list of meds I would be willing to go on that are price worthy for me.
I also had X-Rays done of my chest and back to make sure that I haven't cracked any ribs or hurt anything. I didn't see anything then again I am not a Radiologist. I also had to pee in a cup, which I hate doing. For guys giving a urine sample is such an easy thing, but for women it is a course in navigation....blind navigation to boot!
On Monday, I get to see my Fibromyalgia Specialist, who I haven't seen in 18 months. His name is Dr. Don Goldenberg. Anyone who is up on their Fibromyalgia or Chronic Fatigue literature, should be familiar with his name. He is a good guy and he may be able to help me with a couple of things as well. I only see him every two years or so to see how I am progressing and to help my regular docs with my Fibromyalgia care. He can recommend a path of treatment that they may have never thought of or heard of before. He is mainly a researcher and author for Fibromyalgia and Chronic Fatigue (I have one of his books), but he does see patients only as a specialist and not as a doc you would see on a regular basis. My husband, who has met him, thinks he is a quack, but knowing how Rheumys work, I trust him with any recommendations he may have.
Well, life beyond that has been a little hectic this week for me. Between carting Todd back and forth to work 40 minutes each way so I can have my car for doctor appointments Wednesday and Thursday and getting all the paperwork ready so that Todd can pickup his car, I am a little tired. Luckily Todd gets his car this afternoon after he gets out of work and I finally get my car back! So while Todd is at work, I will take my Darvocet and relax, watch crappy TV and possibly take a nap. I have already cleaned the bathroom a little because today was the first day I could lift my shoulders above my head for longer that a quick washing of my hair in the shower, so my doing the dishes energy and shaving my legs energy is gone for the day. While I do have a little energy because of the Darvocet, I still don't know for sure if I have to be careful with the whole ribs thing.

Well, that is all for now.....it seems like I wrote alot but since I wasn't able to log on when I wanted...there was quite a bit to share.
This blog is all about sharing....the bad and the good. I hope that gives you all, my dear readers, some relief that there can be some good mixed in with the bad of CP.

Today yet another doctor's appointment

2005-07-14T09:48:00.000-04:00

Well, I am seeing my internist who is my General Practitioner today. After seeing my Rheumy what seems like 5 million times a few weeks ago, I am not looking forward to this appointment. I have to tell him about my fall in the tub earlier in the week and how much I still hurt from it. I did something but I am not sure what or how badly. I am not even sure if he will order X-Rays. My left side of my chest hurts when I breathe deeply so I feel that I may have bruised something, who knows what the doctor will think.
I am also telling him I stopping the Cymbalta and the Neurontin because I can't afford it and I don't think they are controlling my pain at all. I know that my doc doesn't want to give me pain killers because he sees them as the end of the line, almost like a failure on his part.
I know I may have to fight for some pain control that I need. I am just so tired of fighting for what I need. I shouldn't have to. The doctor should listen to the patient and do what is good for the patient, not what is good for his "ego" or feelings.
Nothing seems to be working anymore. I need something stronger to help my pain. I hope that he will listen to me and be the "advocate" that he said he would be when I first saw him.
This whole post could be the withdrawl from the Cymbalta/Neurontin talking, the tiredness talking, the pain talking. Who knows. All I know is what my doctors are doing isn't helping me and I am hurting and I need their help. I guess the big question will be will he listen and help me? I will come back later today and update the Blog about my appointment....that will be later this afternoon.
Wish me luck!

Deep Thoughts

2005-07-14T00:36:00.000-04:00

A friend of mine brought up some ideas that I haven't thought to bring up before here on this Blog of mine. Deep thoughts, scary thoughts.
SUICIDAL THOUGHTS! Has anyone thought that their chronic pain was a burden to your loved ones and that by going "away" would solve the problem. I know that this topic for the most part is TABOO a NO-NO! Oh don't talk about that, hushed voices go through the room. There is no need to talk about that, you have EVERYTHING to live for as they list of all the so called good things in your life. While they do that, you list off all of the good reasons to lessen their burden and to go ahead....why not....you are sitting in a house/apartment/room, alone trying to keep it together with the help of meds and doctors. Each time you think of the the things that have failed. The meds, the treatments, the appointments. Each disappointment you keep to yourself because you think no one will understand your mood/spirit or lack therof. You sit and say everything was fine, they found nothing....nothing has changed. In a way they are right, nothing has changed....on the outside. Inside you are falling apart , just one more doctor, one more appointment, one more disappointment. They won't help, they don't know how. Especially people with the "invisible" illnesses like Fibromyalgia, Crohns Disease, Colitis etc. Then there are the people who are wired for sound and the treatment or surgery have failed them and they have limited options left to them. Your thoughts churn and churn.....who do you tell? Your family? Nah, they have all heard the stories before. Your online chatboard friends? Nah, they have their own problems. All you have left is you. And you have been here before...many times. Over and over the anguish and pain just churns round and round. What do you do with it??? For me, it is this Blog. For others, it is painting , poetry, writing books and going to meetings.
Please find your outlet, these thoughts are dangerous and can lead you down a bad path. As you can see, this Blog has been my voice, a voice I could never speak out loud for fear of being shamed, yelled at, pulled away from and just walked away from.
Speaking from experience, my family has pulled away from me, I cannot speak to my husband about every little ache, pain and ouchie. Trust me I have tried and for some reason he pulls into a shell and now there is this wall between us. The wall of Chronic Pain. The wall that will in my case never go away.
I hope for all of you, the wall of Chronic Pain has not become such a burden that you cannot express yourself in whatever manner you feel comfortable. A journal may be best for some, for me I went public I guess. A Blog is a public journal in a way.
When I was first diagnosed, there was very few places for me to go for support and information. In my own way, I want to show that people are not alone there are others, millions of others who share your feelings and experiences in various ways. Please if anything you take with you from this post YOU ARE NOT ALONE!!!!!
Feel free to use this Blog to either email me using the link in my profile or use the link at the bottom of the post to make a comment. Don't worry, you won't hurt my feelings. Everyone reacts different and you have your right to feel the way you do.

Ah the joys of Chronic Pain!

2005-07-13T14:53:00.000-04:00

Afternoon all!
Sorry I haven't posted for a couple of days but I have been bed-ridden since Monday. You see, I fell in the bathtub and hurt myself pretty good on my left side. My back through to my chest hurt and still does. Luckily I have a doctor's appointment tomorrow and he will check to see if I did some serious damage to my left side. I think I may have bruised some ribs because everytime I breathe in deep my left side hurts, but not my right. My left shoulder also hurts so I think I did something but who knows what. I guess I will find out tomorrow.
I will let you all know as soon as I do!
Just wanted to let you know I am still alive.

The unspoken side of CP

2005-07-10T09:58:00.000-04:00

Well most people don't talk about this subject so if you are offended I suggest you stop reading now. This post will be about SEX! Yes....sex!
Well, it all started on Friday when let's say I was in the "mood" and my husband wanted to watch the Red Sox game.....we live in Red Sox Nation you know! Well, the last time we actually did anything was months ago and he was drunk to the 9's . So part of me feels that he doesn't want me because I gained 40 pounds because of the medication I am on and the other because he doesn't find me attractive anymore and the only time he will is when he's been drinking. Either way it hurt me immencely.
Well, anyway, I went to bed crying again and he never noticed. Not until the next morning that is when I had a slight attitude with him because I was still hurt by what happened. He accused me of playing games, which hurt even more. Then he slammed the door as he left to do an errand.
Some time apart helped but he still feels I was out of line when we talked about it later. We always talk about it later and I feel the same way, hurt. Like it is my fault. Like I did something wrong.
I guess my body at 40 pounds heavier isn't as attractive as it was when I met him in 1998, but didn't our vows say for better or worse? He didn't explain his part, I guess he didn't feel he needed to. Men, could you help me out here? I know you read my posts and can post without my knowing your name.
He seems to have no problem with online pictures.....I have caught him in the middle (not sure if he knows that I know) while going to the bathroom quite a few times so the desire is there, but not with me. I guess that is what makes me so sad. He can pardon my words "get off" to online pictures but not with me. I unfortunately I have found the day after "evidence" when cleaning up the living room, where the computer is. It hurts me greatly and he keeps saying that it is his anti-depressants but I know now that is an excuse. So I know it is physically possible but I guess not with me.
Is it my weight? My illness? Just plain me?
I need some help from the gentlemen on this one. Don't be afraid of offending me, I need the truth eventhough it may sting a little.
Thanks guys.

The day after my mental purge

2005-07-07T10:52:00.000-04:00

Well, I just read what I posted yesterday and boy I needed to get some things out didn't I?
Yesterday was a rough day for me. I again was taken for a ride by another con-game.....fool me once shame on you....fool me twice shame on me. This time it is for big money. I won't say how much but this time is triple digits. I have started the process for an affidavit of fraud at my bank against these people so I can get my money back but my car payment has now put me in the negative at the bank and I hope that nothing happens with the car....the loan company is very strict and I called them yesterday telling them the story but what can they do? At least they know ahead of time if something happens. I am prone to anxiety attacks as it is, but boy this does make it worse. I guess I will just have to wait and see.
Right now there are bigger things in this world that are happening. This morning as I woke up I woke to UK PM Tony Blair talking about the bombings in London. Why am I not suprised? And why am I not suprised that an underground Al-Quaeda group is taken responsibility. This war is sapping every piece of karmic energy in this world. The good has to be somewhere. Doesn't it?

The Loneliness of Chronic Pain

2005-07-06T09:15:00.000-04:00

You never seem to think that CP would be lonely but sadly it is. While I am NOT the only one who has CP or even my type of CP (Fibromyalgia) I am the only one (well my age anyway) that I know take 6 meds a day just so that I can function almost normally each day. Yes, most CP patients are above the ages of 40 or 50 but there are many of us who are in our 30's and younger. It seems most times we are forgotten in the mix when it comes to CP meds. For example, the whole COX-2 inhibitor (Bextra, Celebrex etc) debacle. They seemed to talk to older people who are on these meds, well there are tons of people who aren't considered a senior citizen on these (or were on) meds. Just recently, Nexium has a commercial campaign about taking the COX-2 meds with Nexium and who are the actors? Why an elderly couple of course. We are the forgotten face of CP.
So there are two ways that I am lonely. I am forgotten when it comes to the age factor and forgotten when it comes to me personally.
Not to seem soap-boxy or anything but this is a topic that really burns my toast. Doctors don't know what to do with me because of my illness. It is so elusive at times that they aren't even sure what meds to give me for my pain. Then I know quietly the age factor comes in. I am looking at least another 40 years of this rotation of okay days followed by agonizingly painful days. They don't know what to do with me. Most meds they would give CP patients are for short time only. So again, what do they do with me? Do they risk my stomach lining, my liver, my kidneys with meds I will be on for years to ease my pain? Or do they give me the minimal they can so that I am "comfortable" but not pain free.
Pain free days are rare now. Okay on a scale of 1-10, I hover around a 2 0r 3 each day. Not exactly morphine range type of pain, but still it does hinder me during my day. Then again, I do not work an 8 hour day, I sit on the couch and can make myself as comfortable as I need to be if a twinge comes mid-day.
I have been on disability since 2002 and on SSDI since 2003. Working 8 hour days became so painful I was eating Vicodin HP (the highest level you can go) like they were baby aspirin just to get through my day. Eventually I graduated to Duragesic patches, which never really helped my pain, just made me not care as much. After about 18 months of the Duragesic patches I had enough, I was still in pain and spending $50 a month co-pay for something that sort of helped. Now I am on a little of this, a little of that, nothing that helps much to be honest. But doctors aren't sure what exactly to give me anymore. Yes, there are other pain killers out there but most doctors are so opioid-phobic that they really don't want to even give codeine cough syrup anymore without fear of the DEA coming to their office and arresting them.
What does a CP patient do? Some of us use every bit of energy we have left to fight for our right to live not pain free....that will never happen but have a better quality of life with the meds we need. I fight that fight at every doctor's appointment, every day that I fight the urge to go to the ER when the pain is really bad when the doctor's offices are closed.
I have a husband who is terrified of me going back on pain killers. He feels I have become a changed person because of my CP. Well yes! DUH!!!! Of course, I have changed. When you are living with a small beast inside, that some days asks for more attention, that fights with my insides. Ergo the loneliness, no one around me understands that pain controls my life. Differently everyday, but it does control my life down to every single pill I take 3 times a day. It challenges me to do the "everyday" things that people take for granted like making meals or errands. Then there is "but you don't look sick" behavior that exists. For those of you who don't know Fibromyalgia is considered an "invisible" illness because you can't tell who has it and who doesn't. Nothing on the outside shows us as disabled or in pain. Either we hide the pain really well or we are "too young" to be living like this. Basic incredulty of someone my age dealing with pain that someone twice my age deals with.
I'm not asking for answers here or recommendations, but this needed to be said. Not just for me, but for anyone who deals with CP everyday quietly because we have no other choice anymore because we are too tired to fight anymore.

HAPPY 4TH OF JULY!!!!

2005-07-04T08:49:00.000-04:00

Happy 4th everyone!
Wish it was for me.....I find myself being very crabby or crochety....however you want to say it. Physically I feel fine, but emotionally I am just scrapping for a fight, especially with my husband. I just want to be left alone to be honest. Its not like its constant either, just things set me off that normally wouldn't bother me the least. But since the middle of last week this is what I want to do to my husband every once in a while . Unpleasant feeling I know, but I think I am holding it together okay. I get snippy but nothing too blatantly angry. Mostly I just feel like crying. So obviously something is up and luckily I am due to see my therapist next week so we can talk about it.
I know this is just another part of chronic pain, thus forth otherwise known as CP. SIGH!
Well, when I started this Blog, I knew that it would show the good, the bad and the ugly. So, here is a little of the ugly.
So not to bring the entry to an end on a down note.......Happy 4th!

Feeling much better today

2005-07-01T14:20:00.000-04:00

Well, today I feel much better today than I have in a month. Now that that humid nasty weather is gone, so is my nasty pain.
Right now, I am listening to my new audiobook so I must make this short.
I hope everyone is well. I may write more later.

At the end of the rainbow

2005-06-30T16:58:00.000-04:00

Well, today is a better day than it has been for quite a few. I just have had more mental stuff to deal with than physical. All bank crap that I won't go into here. Needless to say its a he said, she said deal. UGH! The BIG MACHINE is at it again!!!!!
I am going to deal with it tomorrow and act like Scarlett O'Hara. Right now I have had enough of being on the phone and fighting with my bank which is ironic instead of the company who caused the problem. They could do no more to help than they have. I just gotta get up the "bad Wendy" together and be mean and ugly to get this fixed. I hate doing that.
Being home alone with all this pain and dealing with the MACHINE is rough, but I am a big girl and I can do it myself.
Hopefully I will have a good night tonight and not want to pull hair out of my head.
Wish me luck everyone.

The Truth of Pain

2005-06-29T04:11:00.000-04:00

Well, here I am again in the early morning hours because of my pain. Right now I am stitting on a bag of Blue Ice to take the pain away somehow. Nothing seems to be working but sleeping and I only do that at a 2-3 hour stint. I can barely walk, roll out of bed, and use the bathroom. I don't think I could drive at this point to the ER if I had to. I don't want to wake Todd because this is his new job and I don't want to jepordize anything at that angle right now. I guess I could call my father in law if it gets really bad but his driving is horrid I am afraid he would hit a cow , which are on the way to the hosptial. I don't take pain killers because this type of pain it is useless on. The strongest I get is Soma. That isn't even working anymore.
UGH! What am I do to do. I called my rheumy and he said take advil to help the inflammation. Well, without a car and living in the boonies there isn't a 24 hour store for miles.
Well that is the truth of pain.....it really is well, a pain.

A short post for today

2005-06-28T10:08:00.000-04:00

Pain is the story of my life for the last oh week or so. The last three days have been the worst. I have been bedridden and good thing there is a TV in there or I would go nutty.
Pain in my sciatic has spread to my hips on both sides and I walk like an 80 year old when I am 33.
Since I can't sit too long, this will be very short but to let you know I am alive. If you are all still reading that is.

So back to bed I am going. I hope you all have a great day.

Waxing on Chronic Pain

2005-06-27T02:56:00.000-04:00

I am in so much pain I can't almost stand myself. My hips are killing me and my meds have not kicked in yet, so I thought I would write a little until they work.
Chronic pain is something that is so fleeting yet so close to people who have it. It is a wonder people don't understand it like acute pain. You know you stub your toe or a sprained ankle. Chronic is forever and chooses when to make an appearance. Only a few people who know me understand that when we make plans and I back out at the last minute that it is from pain. Only they know that I have a bedstand full of pill bottles for this and that. Only they know I spend my days watching TV or online because I can't do anything that people take for granted like washing dishes or cleaning the bathroom. To walk into my apartment would look like a tornado hit it or that we are big pigs. I just don't have the energy to do any of those "normal" things anymore. I wish I did, then I would be working again.
Another thing on my mind is those darn blood tests I talked about previously. They mean something but I don't know what to who. But I feel that something beyond what I have now is lurking in my body and causing me more pain than I should be feeling. Everyonce in while I wonder "Why me?" Why am I so darn special? Why can't I be "normal"?
The thing of it is, I tried normal and it put me here, in this disabled position where I can't work or do anything, it seems. The best thing I do is lay around. Is there an award for that? I would probably be up for it along with the many others I know who are in wheelchairs and use other walking devices. Sometimes I feel bad that others can't see what I feel, then maybe they would understand. An invisible illness is something that no one seems to grasp the idea of. I have heard all the old standards about their boo-boos and they walk it off, but that just makes me more frustrated. I want to be like that too. Walk it off. But I just can't seem to. Three years now I have been useless according to the world and sucking off the "system". I wish I didn't have to but I am lucky I have it to fall back on. Or else Todd and I would be in big financial trouble and on the streets.
Okay enough with the pity party....I am off to bed. I hope everyone has a better night than I have had.

Happy Sunday Morning everyone!

2005-06-26T09:02:00.000-04:00

Well, I had a rough night. Watch it gents you may need to block your eyes! Its a little embarrasing woman thing that I will be writing about.
I was coughing up a storm like crazy last night and three times I had to change my undies. Has anyone had an incontience problem that bad at my age? (I'm 33) I need to know if I need to tell my doctors or not. Not only was embarrassing but concerning. I keep seeing things for illnesses when you loose the ability to stop peeing. Sorry for the candor for the Blog!
I hope everyone has a great day!

Another day....another post

2005-06-24T10:42:00.000-04:00

Good morning everyone!
My state of mind is much better but I am still worried about all my abnormal blood tests. Everyone says not to worry but I can't help it. I research things to the bone...that is my nature.
Maybe in this vast world of the internet someone can help me.
Here are all my abnormal tests:
SED rate 52
C-Reactive Protein 8.5 down from 13
Alkaline Phosphotate 152 (normal range 20-140)
WBC 9.2
Every other blood and urine test is normal.
Now how can I not worry about tests like these when until only recently I have only heard of a couple of them.

I just wish I had my answers now. I hate waiting it is not my strong suit.

The latest update

2005-06-23T15:04:00.000-04:00

Well, here are the latest results.....
White Blood Cell count is up (9.2).
Alkaline phosphatase - a liver enzyme - is also elevated 152. Normal levels are anywhere from 20-140.
So it looks like more testing. My GP is out until Monday so they want him to see the results before anything happens. We will see next week how things go.
Not thrilled about the results but at least my kidneys are not involved.
I feel like I am sinking into this hole with no bottom with all these tests.

Update from Rheumy

2005-06-23T09:34:00.000-04:00

Hi all. Sorry for not updating the Blog yesterday. It was a very hectic and rough day for me. Well, the good news about the appointment is that the blood tests is that I don't have Lupus. The bad news is that I may have something that is just as bad, something called vasculitis. Basically, vasculitis is an illness that causes an inflammation of the vascular system. Now depending on the type of blood vessels that are affected, is the name that is given to the illness. Now the rheumy stated in specific two illnesses Takayasu's Arteritis and Wegener's Granulomatosis.
Takayasu's Arteritis is a type of vasculitis that affects the aorta, its major branches to the extremeties and sometimes internal organs. It is also called the "pulseless illness" because people with this illness have a hard time getting their pulses taken because of the swelling of the blood vessels in their arms.
Wegener's Granulomatosis is a systemic disease that invloves the lungs, kidneys, upper respiratory tract and other organs. Symptoms include stuffy noses, sinus infections and other illnesses.
These are just quick definitions, they go on for pages and I won't subject you all to that unless you want to look these illnesses up for yourselves. I had more blood taken for tests for these illnesses and also had to give urine to see how much my kidneys are or are not involved with the inflammation. So basically it is more waiting, something I didn't want to do, but I guess I have to.
That is the latest. I just hope that the tests don't make me wait too much longer.

The cycle of Fibromyalgia Returns

2005-06-21T13:00:00.000-04:00

Unfortunately I am still not feeling well. So this is going to be a very short entry. I have been sleeping for most of the day and eating is not one of my top ten things of doing, but I ate a cup of yougurt anyway. Blah!
Tomorrow is my Rheumy's appointment anyway, so maybe he can help me.
Anywho, it is back to bed for me.....I will update you all when I get back from my appointment.

OH! I almost forgot! I got my refund! I fought the BIG MACHINE and won! I just got the fee back not the NSF fee but some of a victory is better than none right?

The cycle of Fibromyalgia

2005-06-20T03:27:00.000-04:00

I haven't been in this much pain in so long I forgot what it feels like. Even going to the bathroom is a chore. I am very tired because of my Dalmane but the pain is keeping me awake. It is all in my hips and going down my legs. I know it is my sciatica acting up but with my SED rate of 50 according to my tests last week who knows now. Walking and sitting is just agony. I have an appointment with my rheumy on Wednesday but I don't know how long the pain will last. I don't want to wake Todd because his first day of work is tomorrow and I want him to be fresh and rested. We only have one car and live in the boonies so no public transportation. I haven't felt this way in so long I forgot what it feels like. I can deal with the insomnia but the pain is just unbearable. I just want to cry I feel so bad. I am hurting so much I am shaking as well. I was hoping someone would be awake to chat with but it doesn't look that way.I just wanted to gripe about it to someone and since Todd is sleeping I didn't want to wake him up. As you can see I am on NO pain killers so I am doing it with what the docs will give me. This happens so rarely now that I forget how the pain feels. UGH.
I hope you all are getting a good night's sleep.

Happy Father's Day everyone!

2005-06-19T11:43:00.000-04:00

Well, I should have taken a Soma with me to the movies yesterday. My sciatica is acting up so this will be a very short and sweet post. The movie was great by the way!!!! I highly recommend!
I also did something that I haven't done in almost a year now....talked to my dad. On another message board I belong to, a post made me feel the need to call my dad to wish him a Happy Father's Day. It was a short call because he was driving and on his cell, but the message got across and I think he appriciated it. Maybe I will call him another time when he isn't moving about, which isn't often. He's a busy guy!
Anyway, I got to get myself back to bed before my sciatica goes up through my spine again.
Happy Dad's Day to all you dads out there!

Star Wars Day!!!!!!

2005-06-18T11:27:00.000-04:00

Today is the day I FINALLY get to see the final Star Wars movie. My husband won't go so I am taking the boy I watch in the morning for an hour before he goes to school, who wants to go really bad. So this will be a quick post until later this afternoon.
I will give a review but no spoilers!!!!!!
So I must go....see you in a few hours!!!!

The Morning After

2005-06-17T09:58:00.000-04:00

I am feeling much better today. I am still in pain and I need a day in bed but I can move around much better than I have before since 6/6.
I am not saying I am ready to start working out yet, but I am getting around without holding furnature and walls.
Hopefully I can catch up on all my rest that I have missed because of pain and my normal sleep patterns as well as fighting the BIG MACHINE. So far I have gotten two emails saying I will be getting my money back within 3-21 days. That could mean anything as you all well know. So I will update you all on that as soon as I get the deposit in my account or a nice check in my hands.
Thanks for listening to the babble about it and supporting me in my frustration on it. I know that it wasn't an active support but being able to write it here helped.
Again thank you.
Now it is off to bed before my hips and back start to protest again!

What a little Soma will do ya!

2005-06-17T02:36:00.000-04:00

Well, I got the Soma and what chore that was. I haven't taken it since March because I didn't think it was working for me. Well, it just seems I needed a break from taking so much of it.
The pain was so bad for me today it was going up my spine and giving me a headache and down through my hips. I was in the car with Todd (who you all know now is my husband) and I said I need to go to the pharmacy right now. I can't take the pain anymore. Each bump in the road was agony and ibuprofen wasn't cutting it anymore.
So at first I was all confident and talked to the Pharmacist and said I don't have my bottle but I would like to refill my Soma. Well, he pulls up an old rx(AKA for those not in CPland for perscription) for the med and said I had no more refills. I told him I am sure I did have at least 3 and he was incorrect. Being in pain and having someone argue with you when you know you are right doesn't exactly hit the right heart strings. . So I asked him to check again and print out my whole rx history. So when he did that, sure enough my new rx was sitting right there at the bottom of the page and I pointed it out to him because I told him that the last time I filled it was in March, which also proved to be correct.
He apologized profusely and said that he would get right on it and it would be done in 5-10 minutes. Well, he kept his promise and I went home will a new refill of my Soma. For those of you who don't know what Soma is, it is a powerful muscle relaxant and it knocks you silly too. Driving on this stuff is a big no-no.
Well, anyway, I am feeling much better but the pain is still there. At least I can bend to use the toilet now without too much pain.....sorry too much information.
With my new refill I am finally getting sleep...okay fine not at the moment.
Well, I am off to some restful sleep and a little less pain.
Again, thanks for the good karma for Todd and I hope that tomorrow brings less pain. I gotta see Star Wars Saturday and I am not gonna miss that! I know, I know a Star Wars geek like me seeing it weeks after the opening, but I promised a little boy that if he was good for his teachers and his mom, at the end of the school year, today in fact, I would bring him to see Star Wars on the following Saturday. So at 1PM Saturday I got a date with a hyper 8 year old, a big bag(or is it still a bowl) of popcorn and a Diet Coke to watch what everyone says is George Lucas' final masterpiece. Boy I am truly excited. Really. Todd won't see it with me so I found my own solution to see the spectacle on the big screen!
Okay everyone.....no spoilers!!!!!

At times posititve thinking does work

2005-06-16T16:25:00.000-04:00

Thanks for all your good karma sent to Todd for his interview today. He got the job!!!!!!
He starts on Monday and just in time too.
It makes me feel better to know that money woes won't be weighing on us so much and we can get a better apartment and finally get back on our feet after the bankruptcy we went through earlier this year.
I just wanted to thank you all for thinking of us and sending good vibes to Todd. He truly appriciates them.
As for my pain, I still hurt. I broke down and refilled my Soma so that the muscles could relax finally and MAYBE get some sleep tonight that isn't too bad.
You know....sometimes life does make lemonade out of lemons. (okay its an orange but close enough)

When Positive Thinking Doesn't Work

2005-06-15T17:04:00.000-04:00

I just got some not so good news. My Rheumy's office called about 30 minutes ago and one of my test results came back. I thought it was fast so I was all set to write them down. Well, she said only one came back...the SED rate. Well, ladies (and gents) it looks like my niggle was right something is going on. My SED rate is 50! The highest it has been before was 27. So his office immediately made an appointment for me in a week when all the test results from the Lupus panel will be back. I'm not sure how I feel about this.

The Day After

2005-06-15T10:55:00.000-04:00

Well, today I am feeling better after a day of bed rest and ice on the places that needed it.
I have pain in my left trap muscle toward the middle of my back. Feels like a big lump right next to my spine but I know that the muscle is all knotted up. My sciatic nerve is a little better but if I move just wrong, I get that twinge, reminding me that I did something wrong.
Unfortunately I gotta go out and help Todd (my husband) find a new pair of dress shoes for a job interview tomorrow (cross your fingers everyone send good karma) so I will be walking around unfortunately. I am gonna deserve a McDonald's Diet Coke for this one! You see, one of my true vices is fountain soda Diet Coke. So, when we can afford it I like to get a big one. This time I deserve one for wandering around a store getting tired by the second. I won't complain but I will be a hurting unit. Oh yeah, I will probably be driving too. With the wet roads and my back hurting, it will definitely be an adventure since we will be going into the "big city". We live in a small rural town so the "big city" is really a medium size city. It's not Boston, but it feels that way now that we have lived out here for so long.
Well, I must go.....

The downside of Chiropractic and Rheumatology

2005-06-14T17:53:00.000-04:00

Well I went to the Rheumy yesterday and I told you all about what happened, well a nasty side effect has occurred. All of that moving and twisting of my leg to figure out of if the pain was in my hip or out of my hip has thrown my sciatica into a tailspin!!!
I went to the chiro today as well and told him about the appointment yesterday and how I was twisted about. As he did my adjustment he said that the rheumy really did a number on me. Well, I am in pain and icing it off and on. In other words, I hurt!
Hopefully I will get some sleep tonight.......here's wishing for a comfortable position to sleep in.

Explanation of the change in title

2005-06-14T08:48:00.000-04:00

Since Fibromyalgia is my major diagnosis and a major effect of this illness is what is called "fibrofog", the tendency for those with FM to forget the simplest things or they simply just float in a fog of their own just walking through life. It is similar to that feeling when you are on too much cold medicine (medicinehead). So, I thought that I would give the "FOG" its due by putting it in the title of my Blog.
Just thought I would just share my thoughts.

A Post of Interest for those with FM

2005-06-14T07:42:00.000-04:00

Patients may benefit from cough remedy
Source: NewsRx.com
Dextromethorphan, an over-the-counter medication that silences coughs, may help fibromyalgia patients quiet over-reacting nerves that amplify ordinary touches into agony. A University of Florida (UF) study documents, for the first time, that dextromethorphan temporarily reduces the intensity of fibromyalgia "wind-up", a snowballing pain response to minor, repetitive physical contact. The discovery, described in the May 2005 issue of The Journal of Pain, also enables researchers to rule out one suspected cause of the phenomenon. Fibromyalgia is an incurable illness that causes widespread muscle aches, stiffness, fatigue, and sleep disturbances, according to the National Fibromyalgia Association in the U.S. An estimated 10 million Americans suffer from the condition, most of them women. Current treatment strategies include pain medication, exercise, stretching, sleep management, and psychological support. Though the UF study did not establish guidelines for using dextromethorphan clinically, it suggests the drug may eventually be an option for treating fibromyalgia and other conditions involving heightened pain sensitivity, said rheumatology expert Roland Staud, MD, a UF associate professor of medicine and the study's principal author. "I think it's one piece of the mosaic," Staud said. "We currently have no single therapy in chronic pain that has a big effect. So what this really means for chronic pain patients is that they need to use a whole host of different interventions to decrease the pain they have. And in this, dextromethorphan may have a role in the future." Dextromethorphan is popular in cold remedies because it elevates the threshold for the coughing reflex but does not cause physical addiction, according to the U.S. Drug Enforcement Administration. "But fibromyalgia patients should not resort to self-medicating by taking cough syrups for pain," Staud cautioned. "Like every medication, dextromethorphan has side effects. At high doses, patients can have problems related to memory and confusion." The underlying cause of fibromyalgia remains unknown, but in the past 25 years substantial progress has been made toward understanding the mechanisms behind specific features of fibromyalgia, Staud said. One is central sensitization, a feature of many chronic pain conditions in which the central nervous system - the brain and spinal cord - somehow magnifies pain signals to abnormally high levels. Central sensitization is associated with wind-up, a phenomenon in which repeated touches - even handshakes or pats on the back - generate lingering pain that increases with each new contact, he said. A normal form of achy, lingering pain known as secondary pain affects anyone who suffers an injury. The UF researchers - Staud, neuroscientist Charles Vierck, PhD, psychologist Michael Robinson, PhD, and Donald Price, PhD - were surprised to learn that dextromethorphan eased fibromyalgia patients' wind-up pain to the same degree it soothed secondary pain induced in healthy volunteers, Staud said. The results indicate a long-suspected cause of wind-up may not exist. Previous studies at other institutions had shown that dextromethorphan blocks the action of a chemical messenger called N-methyl-D-aspartate, or NMDA, which relays pain impulses in the spinal cord. Many fibromyalgia researchers have theorized that wind-up is caused by abnormalities in the spinal-cord structures that process NMDA. The UF results suggest those structures function normally but that pain impulses are more amplified in fibromyalgia than in healthy participants, Staud said. "This has refocused much of our research now," he said. Future UF studies will attempt to pinpoint where the pain impulses are originating. In the current study, researchers worked with 14 women with fibromyalgia and 10 women who did not have the disease, using mechanical devices that tapped the participants' hands repeatedly. One part of the study involved contact with a heated probe, the other used a small rubber-tipped peg. The intensity of the heat or pressure of the stimulation was individually adjusted so that all participants reported feeling the same degree of pain. Researchers then gave each participant a capsule containing 60 mg of dextromethorphan, 90 mg of dextromethorphan or a placebo containing none of the drug, and asked them to rate the amount of pain they experienced when the stimulation was repeated. With the heat stimulus, 90 mg of dextromethorphan reduced wind-up pain, but 60 mg was no more effective than the placebo. With the pressure stimulus, 90-mg and 60-mg doses were equally effective, reducing wind-up pain. The UF study indicates the need for further research on dextromethorphan, said fibromyalgia expert Laurence Bradley, PhD, a professor of medicine with the University of Alabama at Birmingham's division of clinical rheumatology and immunology. "This is a topic that's actually received very little attention so far in the literature," Bradley said. "It would be a disservice to start to recommend that either patients or physicians begin experimenting right away with dextromethorphan, because I think there are some important questions about how to minimize the side effects with this agent." This article was prepared by Women's Health Weekly editors from staff and other reports. Copyright 2005, Women's Health Weekly via NewsRx.com. ---- To see more of the NewsRx.com, or to subscribe, go to http://www.newsrx.com.

Rheumy day is over...the good news and the bad news!

2005-06-14T03:12:00.000-04:00

Well, I am happy to say that my hip is not a bone issue but a muscle/ligament issue. Yah? I am not really sure how to feel about it yet. It hasn't sunk in.
Okay here is the bad news, I told the doctor that I still didn't feel right, that a part of me was telling me that there is something else going on. Again, the guy read my mind and he asked me if I was thinking of Lupus. I said yes. I told him since we found by chance that I have the Parvo B19 anti-virus, maybe we would find something else that has been missed all this time. So, he ordered the normal CBC panel as well as the Lupus panel of bloodwork to be done.
I don't know how long it takes for the results to come back, but I am already edgy about them. Part of me wants to have a negative reading and I don't have Lupus. But there is a small part of me that wants an answer and if that answer if Lupus then that is the answer. I am tired of having all this physical stuff happening to me and doctor's just chalking it up to the Fibromyalgia, when inside I know it must be something more.
A long time ago, someone told me to listen to that little voice inside me if you felt like something wasn't quite right and that is what I feel. I hear that little voice saying there is more to this than just the Fibromyalgia, they just haven't run the right test or asked the right questions yet. I have trusted this voice many times in my life and that is how I found the diagnosis of Fibromyalgia and my husband to boot! So now I am listening again and Lupus seems to keep knawing at my insides and won't let go. That little niggle, I call it, keeps tickling my insides and not letting me rest until I find the absolutes of all this. I may never find the final answer to all my problems, but I trust my instincts on this one. I have to.....I have no one else to trust when it comes to stuff like this. My husband will say I worry too much and no one else around me understands. Only you out there in cyber world understands what it means to have that unfinished feeling.
Well, that is the update for today. I hope I didn't depress to many of you.

Finally my Rheumy Day!!!

2005-06-13T08:35:00.000-04:00

Tah-dah! Its my day to finally see the Rheumy. I just hope his office doesn't cancel two hours before I see him again! Wish me luck everyone!
Well, it was a rough night for sleeping. The AC just wasn't cool enough for me, I wanted it igloo style, but Todd is not an eskimo so I gotta keep it at a reasonable level.
Let me see if I can create a vision for you all who aren't familiar with just standing and sweating. I hope that gives you an idea what it feels like around here.
Well that is all for now, I will update you all as soon as I can later.

Yup I ate....

2005-06-12T19:02:00.000-04:00

a whole quart of Brigham's Chocolate Chip Ice Cream.
Just thought I would share the update with you.

Yet another Fibro kind of day!

2005-06-12T11:20:00.000-04:00

Well, I am still feeling crappy. Yesterday, while looking in the fridge trying to figure out what I wanted for lunch, I started crying for no reason. Just out of frustration as to what I wanted to eat. Todd (my husband) just looked at me and asked what was wrong. When I told him, he said it was okay and just gave me a hug. Talk about MOODY!!! I was in bed for the rest of the day and slept off and on. I did the same thing through the night and I still feel crappy today. The weather is really setting off my Fibro and I feel just ducky . Something tells me after lunch, I will be back in bed again trying to fight this melancholy, if I can call it that of the Fibro. On top of that EVERYTHING is irritating the daylights out of me. For those who read Dr. Devin Starlanyl's books, I've got "Irritable Everthing Syndrome" right now. Clothes bug me, people bug me, TV bugs me, life bugs me, the idea I am female bugs me. If I could take off my own skin to feel better I would. Probably the only thing that would make me feel better is a big old quart (because they don't make them in pints) of Brigham's Chocolate Chip ice cream.
My hip is still bothering me but there is nothing I can do until tomorrow, when I see my Rheumy. As I said before, I want him to take a good look at it and I want some bloodwork done because I think something else is wrong with me. Well, besides the obvious.
Well, I guess that is it for me today. I hope I feel better soon, this moodiness is driving me crazy along with this hot, sticky yuck weather we are having here.

Good Morning Everyone!

2005-06-11T09:34:00.000-04:00

For the first day since I started this Blog, I can honestly say that beyond my computer wanting to fight me this morning, not much is going on.
My hip, is still bugging me but I can keep movement at a minimum until Monday when I see my Rheumy finally after he so RUDELY cancelled my appointment 2 hours before I was supposed to have it on Thursday.
Well, beyond that, I got a letter from the AG's office in Ohio stating that I should be receiving a refund from that company I have been fighting, but I will believe that when I see it. The woman who was handling my case emailed me and asked me to let her know when I get my refund. Why do I have this funny feeling that it won't be as easy as that and I will be going back to fighting them.
Life today is as a Saturday should be....free from stressors and just to have the ability to do whatever you may need to do. Then again, the mail hasn't shown up yet and the phone hasn't rung yet today so who knows could happen.
After the week I have had, don't blame me for being a little pessimistic.
I am feeling a little fibro-foggy today and in my own little world. Not quite feeling good but not quite feeling bad either. Does that make sense?
Sounds like a bed day or a couch day to me!

An end to the fight with the BIG MACHINE???

2005-06-10T18:44:00.000-04:00

Well, I got a letter from the AG's office in Ohio and they said I should be receiving a refund. My thinking is that I will believe it when I see it.
What do you all think?
Well it is a humid 80 degrees in good old Massachusetts. As usual, we skipped spring and went on into summer. After 5 weekends of dank, raw weather, we are now into warm, sticky gross weather. Ah the joys of living in New England.

Enough with the fight with one machine I have to fight with another.....CVS! According to them I owe them money....over $300 to be exact. For some reason they seem to think I stopped payment on checks from 2003. I am in the process of getting it investigated by my old bank. A place I haven't used in years and it will cost me $20 to have it done. Will the fight ever end? I swear, eventhough I am on disability, fighting one piece of paperwork or another is a full-time job. Anyone else get that feeling?
Doesn't anyone understand that all this stress will cause me to have a fibro-flare??? Do they care? I guess it won't matter until I die, then my life insurance will kick in and my husband will be a wealthy man.
In my next post of my blog I will try and promise to be more upbeat and have a sense of humor, like I usually am in life. But lately this place is the only place I can vent about the trials and tribulations of all the crap a Chronic Painer (AKA CPer from now on) has to deal with just to survive day today.
I guess this is what it is all about my life in blog form.

Just as I write this there is a trial of a new drug to help Fibromyalgia. It is supposed to help with sleep and overall feeling.....all I can say is yeah right another new "wonder" drug. I roll my eyes until I see it happen. Cymbalta was supposed to be that drug, but it's not.
Okay enough.....I am going to stop writing now before I get too depressed about this.
See ya'll tomorrow!

The worth of a good chiro!

2005-06-09T16:59:00.000-04:00

After getting my appointment for my rheumy cancelled, I immediated called my chiro, who I haven't seen in years to see what he could do for me. It seems that while working out on the stair climber, my S-I joint slipped causing pain. Once he made some quick and small adjustments, my hip feels much better. I walk much better and the pain is almost non-existent.
Funny part is when I got home, I went right to bed and slept about 2 or 3 hours cold! It suprised the daylights out of me! That is for sure. As for the rheumy, I have an appointment with him on Monday....I just hope that my Cymbalta (which I can't afford to buy and need samples) will be available. I just hope that the adjustment doesn't cause me much pain overnight. I will be seeing him again tomorow so we will see if my body held the adjustment. Luckily I am on Medicare and Medex (supplimental insurance) so I don't have to pay a dime for the appointments, so I can go as much as I need to.
Okay on to what you all have been waiting for.....the daily update on my fight with the BIG MACHINE! Well, my rep at the AG's office emailed me today letting me know that she got my message about being unable to contact the offices of this company and the email that I posted last night. It seems that she is also unable to contact these people as well. Hmmmm, interesting. I don't think that avoiding the AG's office is such a hot idea, do you all?
Well, considering the last few days, life has been uneventful today. I am sure something will get me up in the middle of the night and I will be writing by my bare lightbulb again!

A mighty good morning to you all!

2005-06-09T09:45:00.000-04:00

Well, after a little more rest and a dose of reality.....an 8 year old boy can really do that to you. I have to focus on my Rheumy appointment today. My hip really is concerning me and I need to get this figured out. So at 11 today I will try and get this looked at.
I am worried that arthritis is setting in, which is common in my family. If it is , I want to see the progression and how bad it will end up being.
So, now I have a new worry to add to the list.
Ah, the price to be a Chronic Painer!

The one who wants to take over the world will be back to her regularly scheduled perch later today!

Well afterending such a nice post, I get a call from my Rheumy's office suddenly cancelling my appointment along with all other morning appointments.....its an "emergency" or so the NP said. Now I am really upset. I was supposed to get new Cymbalta samples and signatures on paperwork today. I am so disappointed. I just want to cry.

The Midnight Blogger is at it again!

2005-06-09T03:46:00.000-04:00

Well, all of those people who have been keeping up on my fight with Pangea Investments AKA usamedsonline.com, here is the lastest kink the in the armor. I was checking my email tonight and I got the following:

From: "Customer Care" [Add to Address Book] [View Source]
To:
Subject: PangeaProcessing.com Charges
Date: Wed, 8 Jun 2005 22:05:18 +0000
Mrs. Hamm,

We are the processing company for multiple sites around the net. We were recently forwarded your inquiry and wanted to fill you in on the situation. It appears as if you signed up for two sites we process for:

1) LegalMedsOnline.com
2) USAMedsOnline.com

With your usamedsonline.com account, you were billed $37.85 on March 24th, and then billed again for your 30-day recurring charge for $37.85. It appears as though the $37.85 rebill has been refunded. Because you are well beyond the 30 day window to initiate a refund, the initial $37.85 for this account cannot be refunded.

WIth your legalmedsonline.com account, you were charged $29.95 on February 22nd. However, the bank that conducted your charge is no longer in a banking relationship with us. They are not willing to refund any of our customers. To obtain your $29.95 refund, please contact your credit card company to file a dispute / chargeback.

If you have any other questions, just let us know.

Thanks,
Customer Care
Notice I have been disputing since May 7 and they asked me to wait 5-12 business days for a refund. Then on May 27 I contacted the BBB of Ohio as well as the Attorney General of Ohio on this issue. I have emailed both my contacts this email and I don't know what will fly but it ain't gonna be pretty!
I also contacted a television station in Dayton called WKEF asking for their help with this.
Well if this company wanted a war over $55 they got a war!

Thank you for reading. Anybody got any infuential people they know over in the Dayton, Ohio area who could help me? Thanks I would appriciate it!
Now I gotta get to bed....gotta wake up to watch the neighbor kid again! I think I will need Jolt instead of Diet Coke today!

A day and three 20 oz diet cokes later

2005-06-08T14:52:00.000-04:00

Well, I am feeling much better now, my manic period is over and boy am I tired. I better sleep tonight or else!
I have a rheumy appointment tomorrow and I want him to take a look at my right hip that has been bothering me for days now ever since I went for 15 minutes on the Stairclimber. I just hope it acts up so that he can see how much bothers me. Don't you hate it when you have a problem and just as the appointment to see the doctor comes up, the issue seems to go away? Is there a name for it?
All I know is I walk like Robert Duvall in the movie Open Range. Like I just got off a horse. If I put too much pressure on my right leg just so, pain radiates up my to my right hip into my back.
Hopefully it kicks around until tomorrow morning. Wish me luck.

After a few hours sleep....

2005-06-08T10:54:00.000-04:00

Well, I am up and about again. I am feeling a little bit better but no phone call yet from the guy I called in the middle of the night. Which may be a good thing....I was a little crazed. While there is nothing wrong with that normally, random phone calls to people that are heads of companies probably won't get the resuults I need, which is my money back.
Yes I am going a little crazy with these smilies but they are sure fun and express how I feel, which is completely off the wall and angry. And no I will not get off my soapbox!!!
Anywho that is enough for the day unless something strange happens.
I need to get out of this apartment for a while, I think I am driving myself crazy between this whole getting my money back and trying to find a price for a Phantom of the Opera music box I have so I can sell it on eBay and not get screwed. So ugh!
I hope that everyone is having less of a manic day than I am......I feel a nap coming on with me expending all this energy

Okay I promise....the last one tonight!

2005-06-08T03:31:00.000-04:00

Well, I am madder than a wet hen and it is 3:31 AM where I am right now and I have to be up at seven to see an 8 year old boy off to school tomorrow. Which you all know what that means, high energy and all your wits about you. I think I may be short on the wits tomorrow.
The energy can come from your friend and mine Diet Coke, the drink of champions!
Well, the last email I sent to the people actually came back saying that yes they were humans and people were there. So I sent a nice email thanking them for lettting me know and to let them know they didn't need to respond since I was so rude to assume they were automotons.
So, now that I have figured out how to put pictures and smilies in my blog and that I am all out of piss and vinegar, I am off to bed.
'Night everyone.

Well, it is official I am going off the deep end!!!

2005-06-08T02:46:00.000-04:00

I just called the Head of Customer Care at this company and left a scathing message (now I didn't swear) I just felt like swearing a lot. But I did use a very forceful and angry voice telling him about how I am getting nowhere with the customer service department and so I am going to go higher up! His name is Greg Parson and if you want his number.....it is more than available if you all want it!
Yes, I realize that it is very late at night but this stuff just gets me so angry that I can't get my money back that I am spitting nails and I have to aim it at someone.
You know, I think I will call tomorrow at normal hours and see what comes up too. Maybe I can actually talk to a human being! Amazing what technology can do, erase the human denomination of any conversation!
I am off for my take over of the world.........Yes I know Pinky has already tried!

Why do I feel like I am a....

2005-06-08T02:31:00.000-04:00

subversive writing mad letters to the government underneath a bare lightbulb???
It seems that at night is when I am at my most "perky" when it comes to these commie bastards who won't give me my money back!
Luckily I have one who is refunding me my $27, but the other, it seems like I get the same message from the same two "customer service" people, like it is a script or something. Maybe it is one big robot who answers emails and has limited capacity for thinking outside the box.
Speaking of outside the box......I think I may give this company a call. I do have their phone numbers and give them a piece of what is left of my mind.
Ugh! Why didn't I think of this before!!!!!
I will update you as soon as I get some type of a response. (Add evil doctor laugh here!)

I have had enough of stupid companies.....

2005-06-07T17:22:00.000-04:00

that take advantage of people who need medications. Right now, I am having problems trying get money refunded by two companies who are refusing to do so even after I give the all the information they required.
One company charged me money I didn't authorize and caused me to have an insufficient funds fee, which I am trying to get back. They gave me the $9 with no problem but geeez, to ask them to fix a problem them made they want the name of your first born child.
The second company is the real winner. It is called usamedsonline.com(AKA Pangea Processing/Investments and ACE ONLINE LLC)....STAY AWAY FROM THEM!!!! They tried to withdraw almost $40 after I cancelled my membership, which at the same time as this was happening, the other company did the same thing. So I incurred another $27 insufficient funds fee. So now I am battling this company to get the whole amount back plus my $27. Because they refused to give back just even the $40 after the time they alotted to me, I got in contact with the BBB in Ohio and the Attorney General in Ohio since their headquarters is in Ohio. I also contacted a couple of TV stations' consumer alert areas to let them know about this place.
I am just so angry about these two companies trying to get one over on someone who is on a limited budget peeves me so bad!
I honestly don't care if I get my money back, but I don't want this to happen to anyone else. I am on a mission and I refuse to give up!
So, please be careful of online companies that sound too good to be true!

Well back to the drawing board!

2005-06-07T14:53:00.000-04:00

Yet, again I tried to be "normal" and ended up hurting myself in the process. Yesterday I went to the gym like normal and decided to try the stairclimbing machine. I did it for 5 minutes the day before so yesterday since I did so well, I thought 15 wouldn't hurt. Well, was I wrong!!!!!!
My right hip is killing me and from what I understand, the pressure of moving the stairs down the machine has caused the pain in my hip. The question is how exactly.
I have an appointment with my rheumy on Thursday and I am going to tell him about how pressing down is causing pain in my hip. Not a nerve pain, or a muscle pain, but a bone on bone pain. Does that make sense?
Now, I want to have X-Rays on this hip and new bloodwork done. Something just feels wrong with me and I want to know what exactly it is! This is what happens when you pay attention to your body too much.
Well, that is my update for now.....I can't wait until my appointment to figure out what the deal is.