Update on ME!

Update on ME!
Current mood: PAIN!
Category: PAIN! Blogging

This was supposed to be a way to update you guys on my boys and keep up with everyone. Then I found those special people that understand my life, as they live it themselves. I guess I should say you all found me

I never update about myself as I always feel weird. I usually just vent to my shrink (my friend), Tricia, on the phone haha. I am blogging for you guys though as so many of you have taken the time to wonder whats going on with me, ask how I am , think of me, leave me comments and even notice when I havent logged in. I will shoot my usual email to the family but will update you guys too

I have suffered FMS as long as I can remember, very clearly since at least age 11. I was officiatlly diagnosed with it in 1994 I think. I have had also signs of colitis as long as I can recall. I was diagnosed with that in 1992. I have always complained that my heart feels as though it would exploded and I was diagnosed with some sort of tactacardia in 1996. I have other regular stuff like asthma and what not also.

ALL of these things had gotten worse, my doctors believe, because I was always told nothing was wrong with me and that I was a hypocondriac. I was making it all up. Somehow I was causing myself to throw up, sticking things up my rectum to cause the bloody stools and just flat out lying about the pain and fatigue. So not until I was 18 was I able to go to the doctor on my own and seek treatment. I went from the age of 18 - 27 until I had an actual name of something. I will not tell you the thousands of dollars that I paid, the many thousands that sent me into bankruptcy and the hundreds of painful tests I endured. With no one by my side other then the man I would later marry. No parent, no relative and very very few friends. So my physical and emotional well being was very very bad after years of neglect and no treatment

No doctor ever disputed that something was wrong, just at that time FMS had no real name and colitis was just dumped into IBS in general and not really took seriously in young people AT THAT TIME. After finally being diagnosed, i was told there was no treatment for FMS other then pain pills and very few available for colitis. My heart condition was just the bodys reaction from pain and as soon as my illnesses were controlled, it would be ok

So now today...I have yet to find any treatment at all that helps my fibromyalgia even short term. I have had some relief from imuran for my colitis but I have never been able to take that alone. I have always had to go back to steroids. I had an ablasion done for my heart aftter being rushed so many times to the hospital for what they thought, was a stroke or heart attack. Since then my heartrate remains high. It was a known complication of the surgery but it was very new when I got it and its nothing they can do now. My resting heartrate can get up to 130 even while sleeping. Its usually about 110 but the pain makes it higher

Over 6 months ago I went and tried some herbal treatments, I blogged about it I think. At first it made me very ill but we thought it was because I was so ill to start, I couldnt digest the herbs. We took the 3 months program slower and after 6 months I was still no better. I have to admit I had weeks of feeling good but I alwas had. My trouble is after those few and far between 2 or 3 weeks, I am right back to hell.

After 6 months of not leaving my house, I went to the doctor last week. My blood pressure was so high that they were tempted to keep me over night. This explained my migraines, nosebleeds, dizziness, falling and some other things. I was put back on steroids for the colitis and imuran. I was offered oxycoten or something for pain, but I am just so afraid I talked the doctor down to just nocor. Although I am still just as afraid. It seems that if I cant get my pain level down, and rest, my heartrate will not reduce and I am setting myself up for flares in both fms and colitis and maybe even a stroke or heart attack

Now, I have 4 kids of which the youngest is only 2 years old. I have a husband I actually love and enjoy being with. I have no friends or family near me and the few I do have, I probably have one person that would help me with myself or the kids. I refuse help from people I dont know as I have experienced sexual abuse more then once and I know now for certainty that I will kill any man, woman or child (maybe not the child) that abuses me or my kids ever again. I know this for a fact

So I am stuck. My hubby works long hard hours. AT&T has now fired me completely stating that 1 if i can care for my baby, I can care for myself and 2 there is no cure in site for me therefor I am unemployable. Our money is spread very thin as everyone else in the world is. So I can not hire daycare for my baby, I cant hire anyone to come to my house to help me, I cant pay for the monthly YMCA fee even, for the boys to do anything other then sit in this house.

Me being the person I am, I might not kill myself over cleaning the tub but I will kill myself each and every time to spend time with my kids. They have no one in this world but me and their dad. My illness will not litterally kill me, as long as I dont take my own life, but I willingly give up anything I could possibly have for myself for my kids. Even if thats giving up one pain free hour for myself or be with them, I will always chose my kids.

Either I cant rest from pain or the kids so my heatrate continues to be high. I have had a migraine now for 5 days and I so bad before that I littlerally could not see. I am bleeding out of everywhre that blood can come from other then my ears. Things just get more gross but I think you get the idea. This is BETTER if you can believe that

SO TO SUM IT UP IF YOU MADE IT THIS FAR hahaha...

I am back to living day to day, trying not to take other peoples problems and downfalls as my own. Trying to do as much as I can for my kids while still being able to have enough energy to shower and brush teeth. (yeah i mention that a lot, you dont want me to cry about how I miss taking a bath!) I am going to listen to the doctors but STILL make up my own mind.

I am waiting for a phone call about an fms study my doc trying to get me into. He doesnt think I am depressed, just in pain and mad at others for not understanding. Which I guess he is right haha. I am on steroids again, and going to take a bone density test to see how many more teeth and what not I will lose. I can hardly use my right knee now and my hip I just wish I could trade in for a new one.

I am usually very happy, very content, I can still always keep myself busy. I love life and cant wait for the next day now EVEN if it means it will be with lots of pain. At least I understand that if thats all the life I am going to have, then I am going to make the best of it. Well ok, I alays understood that but now I think I 100% will believe it. I put all my eggs into the remicade basket, then the herbal basket then the prayer basket and I know I cant do that. I just have to trust my doctor is right

My doctor believes every illness always has a cure, we just have to find it and we will when its Gods time. Til then we just have to use what He gave us so that we will be around when the cure comes. That is what I will do. Hopefully the cure will come in my lifetime, but if not, at least I will have lived my life. MY LIFE! It may not be yours, it might be different from yours, you might not can even phucking understand it. I dont care. I will live my life now

(will insert some great, cute inspiring pics of kids here soon as I find the camera) hahaha

EDIT!!!!

My bad, guess I didnt truly explain why I am not here but thought it was self explanatory LOL!!!

My pain is just so incredably bad, usually I can not think. The colitis often leaves me unable to move more then 5ft from the toilet. Even when its being "good" today, my fear of accidents keeps me physcologically tied to it still. My hands ache so badly, when i do get on, I can hardly type. Which isnt so bad since most days I can barely walk, let alone sit for that long.

I was using my aunts laptop for awhile but it died. So I cant even just keep up to date reading everyones site as I used to. I have to decide waht to do with the few hours a week that I have here. Which includes paying my bills, kids school and pretty much everything else since I refuse to venture outside my house in diapers.

When I am on, I try to answer all personal email, myspace etc first after all financial business is done. I have some friens that still talk to me on msn and ircd chat. I have some online commitments for over 15 years that I try to keep as much as I can

If I have any other time at all, I do the one thing which brings me pure peace and joy, and that is to dj at pumpupthebass.com. Music is the only thing that seems to calm me since I can no longer read. I can still escape with the music, dance with the music, talk to the kids about the latest music, watch the latest music videos, cry to the music...live to the music

There ya go, the actual update hahahaha