Better day today!

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!

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

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...

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

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!

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!

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

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

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.


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Just stinkin' thinkin' again

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!