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

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

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....

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!

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!

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

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!

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!

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?

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!

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!

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.

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?