Lupus complications and chemo treatment

It has been a rough 2 months for me...this flare is the worst since my diagnoses in 1995. Things have progressively went from bad to worse. (Read previous blogs for those details)

Recently, I have become very fatigued...and things just havent seemed "right" to me. Even with an increase in Prednisone, I was not getting better. My doctors and I became concerned when even after 3 to 4 weeks of 70-80+ mgs of Prednisone hasnt made an impact on this front.

So after half my blood was taken (yes, I know Im exaggerating) and several tests were ran, we found out what the culprit is that has been stealing my energy. First, it seems that my previously diagnosed mitral valve prolapse is...well....I dont know how to exactly explain it, but its getting worse and I now have pericarditis, which is inflammation of the heart tissue. The pericarditis is basically the real culprit of my pleurisy as well as my main energy stealer. I also have some kidney issues, but most of that is spilling of protein. Neither my doctors or myself are "too" concerned about that right now...even tho they will be keeping an eye on things.

So, I went to the doctors to explore my options, which apparently are few...I immediately got a second opinion - and well, basically my only option is to undergo low dose chemo for approximately 4 months. Without speaking to a specialist, they believe I will be on Cyclophosphamide (more than likely RevImmune)

To say that Im not angry and afraid would be a lie.
Ive also been told that if this treatment doesnt work, my only other option is a bone marrow transplant...and as much as I dont want chemo...I certainly do not want to undergo a bone marrow transplant.

All I ask, is that readers of this post say prayers for my doctors, my family and myself. We appreciate them!

People can be so rude with their comments

So, most of you may know I am smack dab in the middle of a horrid lupus flare. And while I do not want to turn my blog into a woe-is-me-I-have-lupus pity party...I feel the need to revisit the YOU DONT LOOK SICK topic.

So, last week I fought off some major brain-fog - an inability to concentrate. Most of the time, this occurs when doctors mess with my dosage on the meds.

Some of you may be aware of the heat and humidity that "finally" moved in on the Baltimore area, but its generally not a good thing for those suffering from lupus to begin with....let alone someone flaring. I went to the races and completely wore myself out, which - most likely did NOT help!

On Sunday, we went to dinner and came home-well, I did stop by one of the thundercar drivers house that I see at Lincoln...So later that night, I start to really feel the joint pain, the muscle pain and the general fatigue. By Monday morning, I completely feel like an alien has taken over my body. It is now Thursday and it has NOT gotten any better.

Truthfully and honestly, I just want to stay in bed. I just want to scream and cry.
Get the picture?


However, many people rely on me, so that is not an option. So, I go and take care of business. Im not going to complain about that.

My CHIEF complaint is still those who look at me and say..."What's wrong with you?"
(This after having to walk gingerly because of joint and muscle pain)

HELLO? Lupus flare? Its like people hear you tell them this, but forget almost instantaneously. A flare normally isnt over within a day...and mine has gone on since mid June. Thats almost 2 months that Ive been flaring.

Just because I choose to smile, be happy and say positive things (most of the time) does NOT mean my flare is over. It just means that I have chosen to think positive and try not to let my illness get me down.

So before you say something rude to someone (especially those with invisible illnesses) think. And, another thing - just because you know someone else who has lupus, dont think our illnesses act the same way, because more than likely, our symptoms might be totally opposite from each other.