Blood test today after a month due to Lupus activity

[Iamnotmydiagnosis]

I am off to the hospital today to get another set of bloods taken as my Neutrophil were low last time as well as slight drop in C3 which means active lupus activity.

I stopped taking Prednisone almost 2 weeks ago with a go signal from my Rheuma and Im enduring the fatigue as I don’t want to be back on them again. Although if things gets worse, I wouldn’t be left with any other choice but to start taking them again.

Ive also developed some unusual physical symptoms e.g purple stretch marks around my thighs, weight gain on my stomach area, lump on the back of my neck where the spine is - could be an indicator of Cushing’s syndrome but Im awaiting for my Rheumatologist response to my email. On top of that, I have had a mucocele on my lower lip which Im awaiting appointment for over 2 years now - I couldn’t wait any longer as it was getting bigger in size so I decided to consult a maxillofacial surgeon and he said I need to get it removed as there is no way it’s going to ease our or heal. Though, it is expensive I might get it done in few weeks after my placement.

[Fighting]

I have been on some form of prednisone since I was 36. It is currently 4 milligrams of methyl Prednisolone. At this point it is difficult to know what was caused by the prednisone and what was caused by other accidents in my life. I have had both hips replaced and the left one redone a second time. My left leg is significantly shorter than the right one. I have had both shoulders replaced. The left arm has no socket. The left shoulder blade is broken. I fell on my home stairs when I was still married and I have a metal plate in my left hand. I find over and under to be very difficult as well as numbers. Discoid lupus was diagnosed when I was 23 and systemic when I was 36. My kidneys failed and destroyed a second 9 year relationship. Then I was on cytoxin which I was told was chemo. I did not know until recently there are different chemo drugs and cocktails. I'm 70 years old and presently and hanging in there. Systemic lupus is a difficult diagnosis.

[HappyVibes21 in reply to Fighting]

I'm new to here. Just sending some 💜

[Iamnotmydiagnosis in reply to Fighting]

Sending you a virtual hug! Thank you for sharing your stories. I have been diagnosed is osteopenia and doctor told me to be careful not getting fractured. I am scared of the future to be honest. Someone said to me Im a walking time bomb ready to explode anytime due to my diagnosis which made me feel as if I can die anytime but after hearing lots of similar stories to mine, I feel relieved somehow. Hang in there! Our diagnosis is indeed a difficult one but we should be stronger than our diagnosis as we are not ‘it’.