Sunday, March 10, 2013

Health Update #4

Have you ever felt like you are juggling eggs and one is bound to fall? Unfortunately, there is no way to stop one from falling so life is like that, too. You can't keep it all going all by yourself and that is what I have tried to do lately, but in doing so, I think I put my mental state in grave danger.

They say Fibromyaglia gives a person what they call "Fibro Fog", which means we forget alot of things and yes, I do, and unfortunately, it's true. I have notes everywhere on my notebook that I have made for myself so that I can keep up with when book reviews or giveaways are due. I even have to keep  tabs for Tomoson, Mom Central, BzzAgent, etc. so that I know where they come from when they come in (the products to review and/or giveaway).

It's been a tough 2 months and I knew things were not quite right but I was still in denial, but finally, I had to make the calls to start things rolling and now the first week of tests are done and we will be doing more next week and the week after. It is the beginning all over again. This is how my life started in 2003 and I have come full circle. That doesn't happen often and when it does, it is one of those uh, huh! moments that remind me that I am not the person I was before 2003.

The only difference this time is that back in 2003, I was going from doctor to doctor trying to figure out why I was having problems breathing, why my chest hurt, why did I feel like I was choking all the time, etc, etc.  Finally, after 5 months of tests and waiting for me to get down to 92 pounds, I found the right doctor who installed me in a hospital until they figured it all out.

I was not anorexia and I was not refusing to eat, I COULD NOT EAT! My stomach felt like it had a rock in it and I could not even sip water or it would blow up my stomach and I would look 9 months pregnant. I was in and out of the hospital so many times for dehydration and I think they thought I was nuts. Finally, one ER doctor told me I needed to get my act together because my kidneys were showing signs of malnutrition. Well, duh, I guess so! I had went that night because the headaches were so severe I could not see and I thought that my head was fixing to blow up. CT Scan said no problems so they sent me home. What a waste.

Anyhow, guess what brought all of that on? My thyroid had stopped working and had shut my stomach down and when I ate these radioactive eggs and sat in a machine for 2 hours while they watched these eggs travel, the minute they hit the stomach, it settled in and stayed. Next thing I know, people are pushing massive quantities of synthroid thru my IV to jump start everything, I don't have any idea how they jump started my stomach but the headaches would persist for months.

I had a nuclear scan done of my whole body and my doctor wanted to know if someone was beating me up.  He had a security guard with him and I thought, what the heck is he talking about? Well, my scan showed blunt trauma to my ribs, especially the right side, where I hurt the worst, my neck had a disc bulging, I had one in my lower back and my legs had cracks and so did my hands. My knee's were swollen to the size of honeydew melons. 

I have never ever been hit. Let me get that straight right now, I said. My poor husband did not know what to think but the minute he got home, he screamed at my daughter who was living with us at the time, Did you beat your Mother up?  Everyone was accusing everyone and it was a mess! I finally got thru to everyone to calm down, no one has ever touched me in my whole life.

I even kicked my own father one time when I was twenty something because of God knows what but he had been drinking and thought I did something I guess. I was on my bed and when he came in I took both of my feet and kicked his ass right out of my room! So, NO! I am not that kind of woman. I don't take no crap from no one, not even my father.

Anyway, from that moment on, the reports just kept getting worse and worse. I am in the pre stages of osteoporosis, have RA & OA, Fibromyalgia, IBS, IC (chronic bladder pain), Diverticulitis, Acid Reflux and Hypothyroidism.

The point is, I got sorta back on a normal cycle and now, it is starting all over again. Difference is this time I realized it within 4 weeks, not 5 months. So, sure enough, when they went in to check the stomach, he said there was still undigested food in there, it was red and irritated, upper colon was red and irritated so he took all kinds of biopsies.

The worst thing though is that he found a pouch off to the side of the stomach and thankfully it did not have any food that had set up in there and started no kind of infection, but they need to know what it is so I will have more tests done next week.  He thinks it might be a stomach hernia and I did not ask how those are fixed because I am not ready to hear it right now. 

They also took my thyroid levels and a bunch of other bloodwork so I don't have those back either.  The lab did not have the right codes for the Celiac Panel so I will have that done next week. Won't that be something! To have IBS and Celiac together! What in the heck have I done to manage to turn my body against itself?

The RA doctor also took alot of bloodwork because my swelling in the knees and hands and ankles have not gone down so I think this new Cimzia injections that I have to give myself are not working. Gosh, this is about the 8th RA medicine I have tried. They work for a few months then stop. My body is building up antibodies against the meds faster than the meds can repair anything.

I stay so darn hungry all the time but know I can't eat much until they figure out what the heck is going on. I do eat a little more than I did the first time because I know if I don't have a little something all the meds I am on will make me sick in a heartbeat.  But, as soon as the food settles in the stomach I start getting cramps, so here we go with more pain meds, more muscle relaxers to keep the muscles relaxed and not bunched up. I also have nausea meds and I have meds for my nerves.

I wonder all the time, which combo is gonna kill me? I never really understood how all these celebrities could accidently overdose but now I see how.  No food in the stomach much to absorb some of it to flush out with the food and taking all this stuff to make yourself quit hurting, is all a gamble. I am living right now on a gamble and who is gonna win? I don't know but it has got to change soon.

They say all of these things I have are autoimmune disorders and it's my body basically rejecting me! Bad thing is, once you get one, you get them all, because they come like dominoes and one makes the next one fall and so on and so on. The knee replacements had to be done because the RA had weakened my knee muscles so much that they kept tearing my ligaments and menicus. For 3 years straight they repaired it and then the last time, they said no more repairs, it will have to be replaced.

So, there you have it!  I am a quandry, awaiting word of either good or bad and what to do or not do. My doctor wants me to go to the Mayo Clinic but the insurance refuses to pay for that, so I don't guess I will be going there.

Who would have thought at 49 someone could suddenly get so sick so fast it makes your head spin?  I have no answers, only questions but no one knows what to say. Bad luck, got the short end of the stick, all of those apply, but why?  I guess when I meet God, he will tell me why. That is the only thing I am sure of at this moment.  No one down here has a clue.

When I get any results, I will post another update. For now, I need to get back to my sponsor spotlights so you guys can have an awesome event to start entering on March 1st called March Into Spring. Very fitting, don't you think?
Okay, I get the message. Break time is over. Will see you when I post the next update.


Gala said...

Dear Mary! I'm so sorry hear that. I don't know can I be any help ( I really want to). May be you can drink some chicken broth as a meal (homemade, preferably from farmers market chicken), it will be easy on your stomack. Also you may want to check this web site I read some report about people with some of your condition who helped themselves by changing diet (Paleo or WestonPrice foundation ). I hope I didn't offend you in any way, please be strong for yourself, your family and Charlie. You are in my prayers