Follow Up Phone Call

Well, the phone did not ring again, so I slept well!!! However I did receive a phone call on Tuesday September 29th from my actual rheumatologist, the first thing he asked me is if I was ok, have I been feeling faint, or like I have a fever, or anxious. I told him that my only symptom has been that I have been feeling exhausted, he told me that my white blood count was at 1.4 & that my immune system was basically shot. He also informed me that he would like for me to go back up to 5mg of prednisone & I immediately started to cry, & kept saying to myself, how could I be feeling so good & my blood levels be so low. He also told me to come back in Thursday October 1st for more blood work so he could see how my levels were, so he could make a decision on what the next steps for my treatment should be. I agreed :~(

I still felt tired for the next two days & could barely keep anything down, I didn't think that going from 1mg of prednisone back up to only 5mgs would make a difference. I was wrong I lost my appetite & could not keep anything down, to make my stomach feel better I drank beef broth & 7up. I went for blood work on October 1st that took 7 sticks & 3 phlebotomist to get 1 tube of blood (that was so frustrating) but hey I have horrible veins due to being on prednisone for so long, many lupus patients suffer from this. I received a phone call from my nurse Linda on Friday October 2nd letting me know that since the prednisone was increased my white blood count (wbc) went up to 2.8 & that my rheumatologist wanted me to come back in for more blood work on Monday October 5th & again for me to stay in the house & try to avoid sick people & if I went out to wear a mask (how do you know someone is sick enough for you to stay away from them?). I went for labs & am glad it only took 1 person & 1 stick this time. I received a call from my rheumatologist later that night informing me that my wbc wet up to 3.8. That was some great news to hear!!! he told me that he wanted me to come back again for labs on Thursday October 8th & after he seen what my wbc was, that we would discuss if I should be back on imuran/azathioprine or not but to stay on the maintenance dose of 5mg prednisone.

I at this point want to know why if I have been off of imuran/azathioprine for almost a month, why I would have to restart it now. Imuran is an immunosuppresive medication that obviously did not suppress my immune system. Once again I question why when I feel good does my blood levels go so low & when I feel bad why are my blood levels high again. Am I starting to feel bad........Yes, I'm feeling weak & exhausted........this is soo hard.

I went for blood work on Thursday October 8th & am thankful that again it only took 1 stick to get blood & I have not heard from my rheumy yet. Today is a holiday & yes he could have called on Friday, but to me no news is good news & the fact that I am starting to feel miserable again shows to me that my blood levels went up, if he does not call me by noon tomorrow then I will call him. I have been having things to do for Purple Healers & Lupie Hugs, but I have not had the strength to do much, all my body wants to do is be still.

Through all of this I have still found a way to "Smile Everyday" it has not been easy, but I am thankful for every breath that I take. I can only take this day by day & know that many other lupus patients go through worse then this sometimes. I just wish there was a way for it to be better for us more then a few days at a time, lupus along with regular life realities can take a toll on you.