SLE & ME

 

 

 

 

Hi Everyone!

 

Sorry I've been MIA lately.  I've been so very tired an achey.    A couple of people have asked me what my disability is &  I don't think I've ever explained the whole thing...

 

I was diagnosed with having Arthritic Lupus in 1983.  In my case, Systemic Lupus has caused Rheumatoid Arthritis of my hands, feet, and degenerative disc disease of my lower back.  I've got bursitis around various joints, wrists, knees, ankles.  Other big problems are Fibromyalgia, Raynauds' Phenomenon with peripheral neuropathy (both hands & feet).  The Pain Management doctor gave me Neurontin (Gabapentin), which is an anti-seizure medication they found helps control pain, but I found that it also controls the Migraines and Raynauds' a bit.  What I son't have is the tell tale butterfly rash on my face like some SLE patients do. 

 

Also, I have a heart problem where my heart was only beating at 30 beats a minute, even less when I slept.  So have a pacemaker was inserted 1997.  Then a few yrs my Rheumatolgist was screening me for  a drug trial study and  found I was in Atrial Fibrillation.  He called the Cardiologist and got me in to see him the next day.  Cardio guy told me not to worry that other doctors don't always know what they are talking about.  SURPRISE!  Rheumy did.  As a lowly R.N. I could tell it was A-fib. from the EKG.  Medicine to corrects it.

 

I've also have Chronic Migraines and Cluster Headaches for 25 years.  And actually the headaches is what drove me to bed for 6 months back in 1998 when it looked like I may have to go on disability.  At that time the Dr thought I may have had some TIA's (Mini strokes).  I'd get disorientated driving to work.   I get photophobic (very sensitive to light).  And have a hard time remembering and comprehending instructions.  Sometimes I'd have to pull to the side of the road and wait for police because I couldn't talk to call 911.  

 

 

I've had Irritable Bowel Syndrome since I was a teenager. With the Colonscopy and endoscopy I had May 1st, three ulcers & chronic gastritis were found.  My stomach has been particularly uncomfortable and bloated this year and has gotten worse since the EGD & Colonascopy despite taking Prilesac and Lactobacillus as recommended by the Gastro Dr.  

 

Even though I've probably had the above problems for many yrs, it was the Migraine/Cluster Headaches.

 

 

I am on Chemo meds to decrease the number of antibodies in my blood, but then I am susceptible to infection, don't heal.  I've got cateracts & optical nerve damage from the drugs that are suppose to help me and can't have eye surgery because of the possibility of infection and poor healing. 

 

In 2000 I was down to 100 lbs (I'm 5'4") and when shopping for clothes I took a girl's size 12!   I've gained the wight back now plus an extra 20.  Oh well!  Around 1999 or 2000 my general Practioner put me on Fentanyl patches to control pain.  Even though he hadme sign a waiver saying I realized that it was an addictive substance I had no idea what it would lead to. 

 

By 2006 I had gradually worked up to a tremendously high dose of the narcotic.  A dose that people with cancer take.  It didn't make me high, I just needed higher and higher doses to control my back pain.  A couple of times I was unable to get the patches and ended up with flu like symptoms which landed me in the ER.  In 2006 I knew I had to get off of them and Medicaid suddenly stopped covering the cost of $550/month.  I called several dlcotors and rehab hospitals to try to get some help transitioning off them.  I knew I would need something for vomiting, diarrhea, the chills and hot flashes, the sleeplessness.  Would you believe none of them would take me because I had a pacemaker and "didn't want to take the chance".  I even went to the ER in Clearwater and was told they don't detox in the hospital.  I was given something for the vomiting & an IV to rehydrate me and was told to come back to the ER when I got dehydrated.  I was horribly "dope-sick" for nearly 4 months. But, I am so glad I was strong enough to do it. 

 

Now my Rheumatolgist swears he will never give me anything for pain because ei am so animated and "perky" 

LMAO!  At my age?  "perky"?!

 

So this is why you hear me talk about so many Dr visits and feeling poorly.  Every once in a while I get a burst of energy, only to pay for it later.  If I feel goo one day and go shopping and be normal...I end up in bed for 2-3 days after because of the fatique and joint pain.

 

Adult and Family services called me just now to confirm the inforomation I submitted onine.  Hopefully I'll be approved for some help.  I've never had to this before.  The social security disability was enough, but now with price of food and the rent increases, I even called a food bank today. 

 

For Mau'i, I found that I can get her spayed and a Rabies shot and license for free.  I feel really good about that.

 

Uhhhh!  I had information about Lupus, but AOL tells me it has exceeded my latter limit : P 

 

I'll put it in my other journal and post that addy ot "Moans & Groans" on my next entry.

 

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