Sunday, May 2, 2010

More about me


Six months after the birth of my son, I began experiencing overwhelming fatigue.  I literally would fall asleep in the middle of conversations and wake up thinking I was still having the conversation.  My family doctor couldn't figure out what was wrong.  It took weeks of tests and more tests.  He was finally at the point where he said I needed to see a therapist because he felt I was severely depressed.  I remember sitting in his office telling him that someone doesn't go from being active to suddenly feeling like this without something being really wrong.  I looked at him in tears and said, is there any test you haven't run that could be a long shot?  He said there was one he hadn't done because I didn't fit the profile...an arthritis panel.   The next week, on the day he called to tell me I had tested positive, I woke up with golf ball sized joints on my hands and soft balls for elbows and cantaloupes for knees...and a lot of pain and stiffness.  He apologized for not finding it sooner.  But since I only presented with fatigue, he really didn't have much to go on.  I was 29-years old.  

So, in mid-1995 with rheumatoid arthritis because of parallel joint swelling and a positive RF antibody. No one could explain the pink to magenta colored rash on my face.  The rheumatologist I was sent to tried gold therapy first.  I didn't tolerate the medication and so she started high dose aspirin therapy.  I developed intrinsic asthma and wound up being allergic to all non-steroidal anti-inflammatory  medications.  And believe me...she tried nearly all of them to see. >.<

In a little over one year, my kidneys had become involved with something called glomerule nephritis.  The rheumatologist felt that even though my labs didn't show a positive ANA titer that I had lupus.  She treated me aggressively with high doses of steroids and a weekly course of methotrexate which I stayed on for nearly a year.  It took another year to be weaned off the steroids.  While the steroids helped to save my life, it also triggered a massive weight gain.  The rheumatologist declared me in remission in late1999.  Yippee!!

Life went back to near normal for me.  The things that had changed still caused issues.  My weight wouldn't come off.  The doctor's told me that losing steroid weight gain was extremely difficult.  I was photosensitive...meaning being in the sun too long made my magenta rash come out.  I didn't pay too much attention to this as I loved gardening and had the roses to prove it!

By 2003, I was starting to show signs that the lupus was waking up.  Joint pain...the rash taking the shape of a butterfly...fatigue...headaches....feeling like I was thinking through molasses...chest pain.  In September 2003, I went to the hospital with severe, positional chest pain.  I was 37.  They ruled out heart attack and pulmonary embolism.  I had pericarditis.  I stopped breathing when they ran the CT-scan with iodinated contrast to rule out the embolism.  Apparently, I was allergic..and the allergies really began at this time...but that will be for another blog topic.

So with the diagnosis of pericarditis, my rheumatologist, a wonderful man...whom I am still alive because of...put me on Cellcept and steroids.  We had to fight the insurance company because Cellcept was not approved to treat lupus.  It is a medication used to suppress the immune system for organ transplant patients.  The combination was working beautifully.  After nine month, we were talking about remission again.  Until I had shingles develop along with Bell's Palsy...a combo referred to as Ramsey Hunts.  My immune system had been suppressed too much.  I had to stop the Cellcept completely to allow my immune system to take over.  AND that is when all sorts of badness started.  Once the shingles went away, I started having other issues...leg swelling, wheezing, hives.  I developed food allergies.  I had also become resistant to the Cellcept.  We had to increase the steroids again and start over with another immune suppressing medication - Imuran.  

It took about a year before we got me to levels that were controlling things...this was 2005...the worst year of my life.  Just as we started talking remission again, my parents called a family meeting.  My dad had just been diagnosed with stage four melanoma.  He was dying...we had maybe six months left.  My world had just been turned upside down and ripped out from under me.  My dad was my hero. I helped my parents while working full-time and trying to take care of my family.  We moved to be closer to my parents so the near two hour drive to them became only 1 hour and the drive to work increased by only 25 minutes.  During the last six weeks of his life, my mom and I did the home hospice for him.  I will cherish those memories forever.  My dad and I would sit and talk until the wee hours.  I was never closer to him than I was during that time.  He died the week before Thanksgiving...I miss him every day.  

Unfortunately, the stress of doing everything that I was, took its toll on me.  My lupus became unmanageable and we were forced to increase the steroids yet again and add plaquenil and methotrexate to the mix...as well as paxil.  By Fall of 2006, I was starting to get better and was even promoted at work.  Things were settling down into a routine.  As long as I stayed unstressed, things were good.  If I got stressed, one of the kids getting sick...my hubby getting sick...my mom, then I would flare.  But this was the status quo for almost two years.  THEN, M-PLAN screwed things up...they stopped being health insurance and my work didn't have a plan that carried my rheumatologist in any of their networks.  

So, beginning of 2008, I had to use a “new” rheumatologist that was in the network...he didn't know how to or want to treat me.  He had the files from my other doctor and felt that he didn't need to monitor me that all I had to do was see him once every six months for refills.  During this time, I started having abdominal pain…in June of 2008 we found out I had a mass…but this is a topic for another blog post. 

My second-rate rheumatologist didn't do any labs or change my meds when flares occurred. This went on for nearly 18 months...and in May of 2009, I developed optic neuritis.  My rheumatologist said it wasn't his problem.  The ophthalmologist said it wasn't his problem.  My neurologist came back from vacation early when he found out that no one was treating it and that I had gone over a week without anything.  He started me on five days of IV solumedrol…AND started testing me to neurological issues.  He felt certain that it was related to the lupus but since the rheumatologist I was stuck with refused to do anything, my neurologist did everything.  Needless to say, I had a second bout of optic neuritis by the end of July and another round of IV solumedrol.  I was also unable to eat without vomiting.  

Finally, by October of 2009, we ruled out all things neurological and were able to prove that it was the lupus.  Unfortunately, my lupus had been running rampant and unchecked…taking its toll on my body. BUT great news, my work’s insurance was changing and my wonderful rheumatologist was in network!  So since January 2010, I have been seeing him.  Because the second-rate rheumatologist didn’t do anything, my kidneys were attacked and we didn’t know it.  I am now taking cyclosphosphamide, steroids, methotrexate and plaquenil.  I have done a few rounds of dialysis to allow the meds to calm down the inflammation in the kidneys.  The kidney biopsy showed some scarring in the glomerules.   It’s just giving my body time to respond to the medications. 

So that is kind of a short version of the journey here with lupus…

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