I am climbing the walls.
Well, I WOULD if I could.
I have been so sick for the past several days that it has gotten crazy making.
I usually can put up with things much better than I did when first diagnosed, but this latest bout of Mabels is making me screwy.
Today was so bad, I literally had to sit down plunk on the floor in front of Little Bear because I just could not move.
I couldn't stand, and I couldn't manage to walk, crawl, whatever into another room where he couldn't see me like that.
I shook and tremored all over the place because my body just decided to shut down for a moment... going "Enough pain for now...I'm done."
Thank God I didn't faint.
I have done that before when the pain gets intolerable.
Poor Little Bear.
Hubby stepped out of the house for an hour on an errand for me. He bought me an electric bicycle. He was thinking Vespa, but we both concur that with me as loopy as I have been... an electric bike might do the trick. I can't drive anymore and sometimes I can not even manage to walk to the market around the corner.
After feeding and medicating me, Hubby took Little Bear outside for some fresh air. He told me that Bear sat in the backyard blowing dandelion seeds wishing me well and that I would never need medicine again.
I'm trying Little Bear... I sure am trying.
After the meds knocked the worst of the lupus Mabel out... I sat with Little Bear and let him stay up later than usual so he could have some Mommy time. He is into race cars this weekend, so I watched him play Speed Racer and was grateful for that.
I do not recall if I ever mentioned this, but last year I had signed up for a clinical study using chemotherapy (big time) to beat lupus into submission. This treatment has been reported to put people into full remission for up to a year thus far.
I got through the paperwork and then the phone interview only to discover that I would not be a good candidate for this clinical trial because I am in that itty bitty 5% segment of systemic lupus patients who are ANA negative.
Don't know if it's really ANA negative... just never comes out that way when I get lab work done.
I have a positive skin biopsy, though... so that counts for something I guess.
Emily Cushing is the contact person for the above mentioned clinical trial. A VERY nice lady and so easy to deal with.
The testing is done out of the University of Rochester Medical Center.
Even though I pooped out as a good research candidate, I did ask Emily to keep me posted on other clinical trials to keep everyone here up to speed.
They are currently seeking candidates for THREE separate trials:
#1.
*Diagnosis of SLE per the American College of Rheumatology
* "Active" disease
* Patients must be taking immunosuppressive medication such as Cellcept, Imuran, or Methotrexate
* Patients must also be taking an antimalarial drug such as Hydroxychloroquine (plaquenil), chloroquine, or quinacrine.
* Renal disease and CNS lupus (ex: seizures or stroke) are excluded
* Chronic infection such as Hepatitis B/C or HIV is excluded
* Treatment with Cytotoxan within 3 months of screening is excluded
#2
*Disagnosis of SLE as per the American College of Rheumatology
* "Active" disease
* Renal Biopsy in the last 12 months
* Patients must be able to tolerate MMF (Cellcept)
* History of renal transplant excluded
* Chronic infection such as Hepatitis B/C or HIV is excluded
* Treatment with Cytotoxan within 3 months of screening is excluded
#3.
*Diagnosis of SLE as per the American College of Rheumatology
* Mild to Moderate disease activity (stable disease) (Lupus flares are excluded).
* Patients can not be on Cytoxan and prednisone dose cannot be greater than 10mg/day for 2 months before start of the study.
* Chronic infections such as Hepatitis B/C or HIV is excluded.
* Renal disease is excluded.
If these are of interest to you call Emily at (585) 275-7167 or e-mail her at:
Emily_Cushing@urmc.rochester.edu
In regards to my miserable status lately, I am going to my rheumy soon for a regular check-up. I go every three months. Hubby and I are going to talk to him about this new chemo infusion that has recently been made available. This is the treatment that I had been trying to get into clinical trials for... so we'll see if I am a good candidate, yet.
I have not been able to tolerate some of the "traditional" treatments, and I don't seem to be pulling up out of this nose dive that keeps on going and going.
I am participating in a genetic research study.
Some of my sisters and I have volunteered a blood draw for research purposes.
You can learn more about that study here:
Clinical Trial: Genetic Study of Lupus Patients and Their Families
Deciding to participate in any clinical research is something that should NEVER be taken lightly. There are risks, and it is definitely not for everyone.
My former career... good heavens! I am actually calling it former... well, social work professionals depend heavily on the results of clinical research. I know that's important and I feel like I am able to doing something pro-active to participate in looking for a lupus cure.
That's it.
The pain is raging through this body.
Writing gives me the respite from thinking only about pain.
Ladeeda... but, now I have nothing interesting to say!
LOL!
Have a Blessed weekend, folks!
:)
Loretta
P.S. I do have some background about researching so please feel free to leave comments with general questions. I'll do my best with that...okiedokie?
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