About:
Hi. My name is Marcia and welcome to my blog. I want to tell my story and the journey i have taken with all my auto-immune diseases. I am doing this to try to help myself with all the complications bu...
Tagline:
This is my blog about living with Rheumatoid Arthritis, Osteo Arthritis, Sjogrens Syndrome, Lupus, Diabetes, Thyroid Disease, Cronic Kidney Disease and Granuloma Annulare.
Bragging Rights:
I have been living with Rheumatoid Arthritis, Osteo Arthritis, Sjogrens Syndrome and Lupus for around 26 years. Diabetes came about 11 years ago. My Thyroid and Kidney disease around 4 years and the Granuloma Annulare about 3 years now. When i was first diagnosed with the RA,OA, Sjogrens and Lupus, i was on 16 medications a day. One of these meds was prednisone. I started off taking 20 mg. a day and i stayed on this regimen about 25 years During this time, the prednisone was a wonderful drug at first, with the exception of the weight gain but over the course of the years, prednisone did a big number on me. It caused prednisone cataracts and the onset of type 2 Diabetes. With all that i was diagnosed with, the only one i ever cried about was the Diabetes. I took everything else with a grain of salt. I was told by my first rheumy that once you have an auto-immune disease, you always have a primary and a secondary. But without asking, i was generously bestowed quite a few more. I also started on a low dose of chemo, which was methotrexate by injections. All my other drugs were to address the other auto-immune diseases including plaquenil for the Lupus. I have stayed on this regimen with the exception of prednisone which i gradually decreased the dosage to get off this stuff. It took me over a year but it had already done it's damage. I started going to a new rheumy when my first rheumy would not try any of the new drugs out there. With my second rheumy, i got a doctor that was really helping me. She was ready and willing to try any new protocol so in December of 1999, i started the drug Enbrel still along with methotrexate. I was very hesitant at first because this was a new drug and i was injecting freeze dried chinese hampster ovaries into my system twice a week. I did great on this combo of drugs but the first scare i got was when i received a letter from the drug company that there had been 16 deaths reported since the star of this new medication. It scared me so bad, i quit taking the Enbrel. I had just been to see my rheumy when i got this letter so it was about 2 1/2 months before i saw her again. When she found out i had stopped the Enbrel, she explained to me that this was such a small number of deaths and all had been found to have underlying conditions that they did not know they had. And in explaining to me that 25,000 people died a year of antibiotic poisoning, that was not reported, i felt more at ease going back on the Enbrel. I was in such pain with my Ra and OA that i was willing to do just about anything. My wrist had already fused to my arm and i was in so much pain with this, i told my hand doctor if he didn't hurry up and do something to help me with this pain, i was going to cut my own hand off. So, ii was given the option of them going in and cleaning all this gunk out or try a new procedure. I opted for the later, which was a wrist replacement. So, in June of 2000, i went in for the wrist replacement. Happiest day of my life so far. I was going to be out of pain with my left hand. I was the second person to have this procedure so it was quite a bit more of an advanced procedure than they thought. The procedure was supposed to only be about 3 1/2 hours but there were problems and my surgery took almost 6 hours. They literally opened me up and took off part of the bone in my arm so to add the replacement of metal, plastic, screws and bone plugs from cadavers. The reason they had to take off part of the arm bone so as to one arm not being longer than the other with the replacement. I did not know i was in the world for 8 days after the surgery. I was kept pretty doped up because of the bone removal. My mother woke up several times and i was not in the house. I was outside roaming around with nothing but a t-shirt. It was a very long recuperation time. I was out of work around 10 months. During this time, i took therapy 3 times a week. Over the course of the years with all my auto-immune diseases, i went through many different illnesses, including infections. I dealt with a time of a 1 1/2 years with ulcers on my tummy. With these infections, i had to come off my Enbrel because of the infections. Staying on this drug with active infections, can kill you. I have been off Enbrel since 2004. I have been hospitalized 3 times since 2008, all with life threatening medical issues. Once with a golf ball sized knot on my face that turned into MRSA. I almost choked to death in 2010. I had an emergency operation to stretch my esophagus. They found 3 spots that were biopsied but came back clear. I also had a pouch with fermented food in it and had that become dislodged, it would have given me bacterial pneumonia. My last bout with being hospitalized was in 2011 when i had a blood sugar of 883. I was is stroke and coma range. The doctors that were working on me in the e.r. asked me if my heart stopped, did i want to be revived. Oh, i was extremely sick but i said yes to that question. I was in ICU for 2 days, getting my blood sugar checked every hour and then a shot of insulin every hour. After my numbers came down to normal, i was put in a regular room for 5 more days. I am now on 3 shots of Novalog and 1 shot of Lantus at night. My A1C was at 9.8. Since then, i have been fighting to get my blood sugars under control. I also started Weight Watchers to loose weight and to get my numbers down. Right now, my A1C is at 6.2, which is almost normal but i am still on my 4 shots a day. My goal, since i am a type 2 diabetic, is to get my weight off and to get off these damn shots. My endo says i will never get off the shots but i am a very determined woman and i hope i succeed in this. Also, i saw on a medical tape at her office that within a year or two, they will be using artificial pancreases and i want to be on the list for this. If this is what i have to do to get off the shots, i will be waiting anxiously on this procedure. Since i had had such a time with my diabetes, i developed Cronic Kidney Disease and my kidneys are only working at 51% total. This is a great concern of mine and i am trying everything i can to keep my kidneys at this number. Going back to the Rheumatoid Arthritis, i had a hip replacement in May of 2011 at the Mayo Clinic in Jacksonville Florida. With all my diseases, plus my age, i could not find a orthopedic surgeon for 2 1/2 years so my option was to try the Mayo. They hesitated but decided to give me a quality of life and to get me off 2 1/2 years of crutches, they would do the procedure. They took all kinds of protection with me also because of my past history with MRSA. The surgery went great, with no problems and after 5 days of the Mayo, I was sent to St. Lukes in Jacksonville for my therapy. Such a wonderful place. It was almost like staying in a 5 star hotel. The nursing staff was great. The CNA's were exceptional and my Dr. there was great. I had therapy 3 times a day, an hour each session. I had such great care taken with me and i did so well, i was able to come back home in 3 weeks after the surgery. I flew to Jacksonville because i had to be there 3 days before my surgery for more testing. I picked Friday, May 13th as my surgery date. I wanted to make that a great day and thats what happened. When i got to come home, they would not let me fly so a friend drove to Jacksonville to get me. It's about a 7 1/2 hour drive from where i live. But because of the air pressure in the cabins of the plane, which can cause blood clots, is the reason i could not fly. So, i have told you a lot about me and my journey to where i am now. Still dealing with the diabetes and kidney disease but i am now working on the Granuloma Annulare, which was caused by the diabetes. I have been to several doctors about this skin condition but as of now, no cure. I am seeing another skin specialist at Emory University in Atlanta next month. I have been approved for Remicade for my arthritis and they are now using Remicade for the skin condition. But, i am waiting on my appointment with this new doctor, so the Remicade is on hold. i am glad i kept my insurance with the postal service because my first infusion of Remicade is $47,000.00. My co-pay will be $20.00. Without my insurance, i would never be able to take this new medication. So, this is where i am now. I will be back soon to let you know what happens next in my journey.
