Tuesday, January 8, 2013

My Health Update


  As everyone is aware I have ITP (Idiopathic thrombocytopenic purpura). It is a bleeding disorder in which my immune system destroys platelets, which are necessary for normal blood clotting. This was figured out while I was pregnant with Joseph. After Joseph was born I was weaned off of the necessary evil drug Prednisone. I finally got the victory of being all the way off of it. As of today it would have been three whole months but, I was put back on the necessary evil drug on Sunday after a visit to the InstaCare in Ogden. 

 Friday the 28th of December I decided to start exercising again. I exercised that Saturday the following Monday, Wednesday and Friday. I started out small and by Wed & Friday I did a lot more. I was feeling normal again it was amazing. I didn't want to jinx myself so I waited to tell anyone how good I was feeling. I finally told Jason how well I was doing on Friday the 4th. Things were going well. We had an offer in on a really good home in Washington Terrace. I felt like I was on top of the world. It has been since I have felt this good.

  Right after telling Jason about how good I was doing I noticing a couple of red circles appearing on my legs. They hurt to touch as if I was touching a bruise. I didn't think anything about it; it really wasn't a big deal. I woke up in the middle of the night in a ton of pain through my mid-section (a little above my waist to almost my knees). I was difficult to turn over; I got up and took IBU (Ibuprofen). The next day I was telling Jason how much it hurt but that the IBU worked and I was able to sleep. I couldn't believe how out of shape I was. On Saturday the 5th I spent a lot of time in the car and figured it was a recovery day from exercising. That night we got home from my dad’s around 8 and realized I was getting a fever. My whole body ached, I was freezing and the pain in my mid-section was at a level 10. It hurt to move and especially lay down. The red circles were turning into welts and not only were they on my legs, hips and back they were on my upper arms as well. I looked at it online and it appears that I could have boils. I really didn't sleep and the IBU was not helping with the pain or even the fever, it started helping with the fever in the morning around 10 am. 

I realized I was not going to try and attempted to put nylons on or even a skirt for church and plus I had a bad fever so I decided to stay home. Jason's mom suggested calling a nurse that was associated with my insurance. We did that and the lady was adamant that I had hives. I tried to tell her that they didn't itch and they were extremely painful but she is the nurse. So I did what she asked and I took Benadryl (antihistamine). Jason went to church and I finally got a couple of hours of sleep. I woke up with the welts still multiplying and in a ton of pain. 

Jason's mom had talked to a doctor that lived up the street from her and he suggested going to the doctor that day. He predicted what it could be (without even knowing me, my history or even seeing me) which is what the doctor at the InstaCare said it was. After a two hour wait we say the doctor and at first she wanted to tell me it was hives as well but I told her that I had a fever of 101, before taking IBU, and that I am in a ton of pain even where the welts are not. She then asked to see them; she felt them and then stated that it sounds like they are Polyarteritis Nodosum. What? It is an inflammation of the vascular system. It can be a side effect of Lupus. I told the doctor that about a month ago I had a test to see if I had Lupus and it came back negative. She then told us that it is possible that it came up negative then and could be positive now. She said that with Lupus there are flare ups, when it presents itself, and times when it doesn't. These blood tests won't come back until later today maybe tomorrow. She did to a CBC (complete blood count) and found out that my platelets are at 66,000 (I have not been this low since early summer). A really good platelet count for me is 100,000 (which were what I was at a month ago) but for "normal people" there counts are between 150,000-400,000. So she started me on Prednisone for two reasons 1- my platelets were too low and 2- it will help with the welts and pain go away. She was right! The necessary evil drug is BACK!

I got a night’s sleep, my fever went away and the welts were disappearing quickly. I was in some pain on Monday but very little. I woke up today in a little more pain than yesterday but according to a friend I live by this is the story of it all Up and down Up and down. I am thankful for the 5-6 days I had to feel normal; it really was wonderful to have them. It was difficult to crash as hard as I did but there is always Hope for those “Normal" days to return.
Thank you to everyone who is there supporting me and hoping for the best. I think the best thing that could happen is to be diagnosed with something so the treatment and healing process can begin. Then I can set realistic goals that can be achieved. 

1 comment:

  1. Dear Amanda,

    This is the first complete information on what happened to you I have had. I remember writing on your birthday card that for the coming year I wished for you that you would be able to pinpoint the problem so you could get better. At that time, someone in the family told me you were given a test for Lupus and that it was negative. I know a lot about Lupus because my sister Dot had Lupus and it took about 10 years before the diagnosis was finally confirmed.

    But I just thought it was many years since Dot had it, so probably new diagnostic procedures had been developed where they could tell right away if you had Lupus. I'm very glad you do not have Lupus, but the auto immune disease you do have will require a lot of vigilance and care. I am so sorry you went thru all that with Joseph to also attend to and provide therapy for.

    It's interesting and also disturbing to me that with all the knowledge the medical profession has, they put you 'through the mill' with all the mis-diagnoses. I love you Amanda. G. Lewis

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