Wednesday, May 27, 2009

Hanging in There

Well tomorrow is the next follow up with the pain management doctor in an attempt to get my life back on track. In the meantime all sorts of other illnesses have been exacerbated by this wonderful pain flare. My immune system is simply not working, so that is wrecking havoc all over my body. Add the extremely high pollen count we have had and a whopper of a sinus infection to systemic thrush and you can imagine what a lovely time I am having.

My mother is suffering with the shingles at the moment, her sixth bout with them! We are both trying to find some kind of "normal" which has escaped us completely for the past few months. I know life with chronic illness is a delicate balancing act, but I had forgotten had terrible it can be when everything goes at once. My house of cards has fallen and I feel lost. I don't usually get down and stay there, but the medications have also played a number on my emotions as well as my body. For instance, I have always been underweight, couldn't really put weight on if I tried. I know that probably elicited moans from many of you who battle their weight constantly. Well, I can honestly say I understand now. I have put on over 30lbs. in three months. I went from a size zero or 2 to an 8! NOTHING, not even my shoes fit anymore! We are still trying to find the cause, which may be the steroids I take for adrenal insufficiency, although I have been on them for almost 2 years so it seems odd they would suddenly pack the pounds on. Compared to most I still pass for a reasonable weight, but I feel awful and look awful to me. When you are used to being thin, it is very strange to suddenly be heavy. I know it isn't the end of the world, but it is one more thing that is out of my control at the moment and unknown.

I am do to start going back to immunologist, and perhaps getting gamma globulin infusions. I have infections that won't go away and fevers all the time, which is odd when you are on steroids, which should lower your fever.

I am sick and tired and broke. I feel like I will scream if I have to see another specialist or get another diagnosis! I'm tired of being moody from medications, lack of sleep, pain and life in general. I feel badly that I am short with my mom so much of the time simply because she is here.

All that said, I have been so touched by the many kind comments I have received from so many of you, it helps so much to know that others out there"get it" and care and send their support and love so freely. When mom and I moved to NY almost 2 years ago, it was so I could finally get help from a pain management doctor. We had tried all over NC and got no where. I am grateful to have found my doctor here, and despite the past few months (which were caused by insurance company greed not doctor error!), I know my life is better. But we still have a house in NC that hasn't sold, and in this economy it could be awhile longer before that happens. The financial strain is tremendous and it isn't just myself I have taken down, but my mom with we. I have a lot of guilt about it.

Please keep praying and sending support. And if you happen to know someone looking for a lovely 3 bedroom house in NC, please put em touch with me!! LOL!!

4 comments:

One Mom said...

There just is no sense to the suffering sometimes, is there? We are dealing with some heart irregularities right now...not the pain that you have but dangerous for a heart/stroke patient. Thinking he can avoid going to the doctor will make the symptoms/illness go away just doesn't help matters for the person trying to advocate for good health care! Hopefully when you get your meds straightened out you can normalize (is that a word?) your life again. I say that knowing that there really is no normal! Prayers go out to you and your Mom.

Maureen Hayes said...

Thank for understanding and supporting me. I hope things get straightened out with your husband as well. It is hard when you have to advocate for someone else when you aren't well yourself, especially if they are fighting you on it. I will pray for you as well. Let me know how things turn out, I care!

Hugs,
Maureen

Tiglizzyclone said...

I am sorry for what you are having to go through. I will pray for you, and I truly hope your daily sufferings improve. I believe the economy is going down for a reason.

Monica said...

Not looking for a house but I'm in western NC. Just wondering what part to keep your house in mind.