The Truth

This is the first time I have ever blogged or written anything personal for others to see. So, bear with me while I work on telling you the TRUTH. I don't always like what I see in myself if I'm being honest. I can be very stubborn, selfish, and self-centered. But, then again, I don't always see the positive either.

I have some truths, physically, that are often hard to face, also. This might take a while, but I'm going to tell it all in one sitting. LOL

In May of 2000 I was diagnosed with Primary Pulmonary Hypertension. This is a rare lung disease for which there is know known cure YET. It is terminal. I'm on a medication called Flolan that helps me stay ahead of the disease's progression, but it doesn't cure it.

 Next, in 2001 I was diagnosed with a bone marrow disorder called Myelofibrosis.  The only cure is a bone marrow transplant. I've had many transfusions because of this disease. I have trouble making blood, therefore, my white count doesn't raise when I have an infection.

Third, the Flolan medication gave me Grave's disease, a thyroid disease. Because of this I took radioactive iodine.  It didn't do any good.  I still had thyroid problems.  I think I was diagnosed with this in 2002.  It plays a big role in my health later on.

My doctors did not think I would live but 3 to 5 years depending on which doc you talked to. The day I was diagnosed with pph, the doctor said that he wished he was here to tell me that I have cancer. Then he told me what it was and it sounded just like ordinary hypertension. Big deal, I thought. So I'll take a pill and be fine. I can be that responsible. Then he says "I can put you on this new medication. It's a continuous IV of medicine. It's called Flolan. If you decide to use this medication, you could live up to 5 years. If you do not wish to try it, you could die in 3 months".  Whoa! 3 months? I'll take the Flolan. That was 11, ELEVEN YEARS AGO next month!!  Go me! LOL  Actually, it's Go God!! 

In 2009 I was going through testing to get on the list for lung transplant.  I did really well, except they found something in my heart they called a Myxoma.  I'd never heard of it.  Mom looked it up, and it said it's a gelatenous tumor shaped like broccoli.  It grows slowly and can break off easy.  This sucks!   So my Pulmonologist talked to the "Board".   They agreed that the best way to deal with this ugly piece of broccoli is to do open heart surgery when they do the lung transplant. The doctors are afraid I wouldn't make it through open heart surgery in my condition.  By the way, I always forget that I have Congestive Heart Failure because of the PPH.

So the plan at this point is to get me on that transplant list.  I went to see my doc to find out if I was ok'd, and he said I needed to take a medicine for 3 months and then they will put me on the List. I was so excited. Because of all my junk, I never thought they would approve me. This is something I had dreamed about for so long. So, on to my next appt., just a yearly check-up with my thyroid doctor. No problemo.

Remember the radioactive iodine? 

So I go to my next appointment. Everything seems to be going well until he wants my mom to come back to the room. He never wants that. He always makes her stay in the waiting room. That's why I like him. (Mom knows how I feel) He precede's to tell us that this little bump on the front of my neck has grown considerably since last year. I never even noticed. He did a biopsy right there in the office, and one day later I found out I had Thyroid Cancer.  Ugh!  That meant that I couldn't get on the lung transplant list for at least 3 years.  I was so close.  I really felt defeated.

Now, I only have one more year of waiting. I can be tested again in 2012.

I, also, have asthma. I forgot to mention it. Actually, I'm sick right now because of it.

I feel strange telling all this.  I wanted to get all my physical 'stuff' out of the way today.   I don't want sympathy.  I hate that!  I don't like it when people tell me their sorry that I'm sick. But, I understand why they say it.  They don't know what they can do to help me. 

This is what you can do. Read my blog and tell me the truth.  I want to be the best person I can be physically, spiritually, and emotionally.  There are a lot of things I should be doing to improve myself physically and spiritually that I'm not doing.  I don't want to face the consequences.  I need accountability. We all do.

From now on I guess I'll just write like I do in my journal.  I'll figure it out as I go.  I look forward to hearing from ya'll.  It's important to me also that this could help some one else.  I know I'm not alone with illness or the only one who needs help spiritually. 

Thanks, Michelle

P.S. I think I have all my facts correct.  There is so much to remember, I sometimes get confused.