Thursday, October 14, 2010

About The Author

Every good blog has a good blog author. Not to say I'm a good blog author, but I will try to write about my journey with all the heart and honesty I can provide. Some days the words come, some days the brain fog, well, fogs.

I'm Jen. I'm not yet 30 and I'm blogging about living with an incurable illness. It's taken a while to get to the stage mentally and emotionally to write the words incurable illness and to decide to take the step of writing my story.

It was only after some nudging that I decided to do so, though I'm not new to blogging. I had an infertility blog in my earlier days. Infertility in your 20s? Why yes, but then we had no idea what was going to emerge.

I was always the sicker child. I missed my own birthday and party one year after getting the chicken pox. Then I got chicken pox again a few weeks later. I was always getting ear infections and had my tonsils out after 6 bouts of tonsillitis in one year. I had Mono and missed a lot of school. I had recurrent kidney and bladder infections. I've had a kidney abscess from infection.

I developed acid reflux (GERD) when I was a teen. I was always tired and suffered from depression and anxiety. Insomnia was common.

I began to get deep chest pains that at first was suspected asthma but I never had asthma symptoms and didn't really respond to the inhalers.

My legs began to ache at night and my knee would swell up madly.

Soon I had trouble walking the distance from the house to the university, 2 blocks away. The fatigue and inability to sleep were maddening. I had suspected appendicitis at least 3 times in one year. I began dropping dishes because my hands would simply 'let go' from the clasp motion. I started questioning my sanity because I was sensing so much change in my life and comparing myself to my peers. What was wrong with me?

Then I began having miscarriages. For a young girl in her 20s who was otherwise healthy, it was a bit bizarre.

My clotting panels all came back normally so...it was bad luck?

I was diagnosed with PCOS because of a high testerone level and I was found to have scar tissue in and on my uterus, similar to that of pelvic inflammatory disease.

It was after one miscarriage in August 2004 that things started getting strange. I developed horrible joint pain, my muscles ached, my body was swollen, I had a high fever but no signs of infection. My chest hurt, my lungs hurt, my stomach hurt. I saw a GP who told me she thought I had Lupus 'for sure' and when my ANA came back normal told me I had a 'monster virus' and suggested I get some form of body emotion therapy.

It was after my daughter was born that things got stranger. The very same response happened. Only this time I had an infant with reflux who was failure to thrive, was breastfeeding and had a c-section. I was told I was supposed to be feeling like hell. But it didn't explain the swollen joints or the fever, did it?

I began to experience severe symptoms of depression and anxiety because deep down I knew something MORE was wrong with my baby and my body was just not bouncing back the way other people were.

The joint pain was becoming more severe. A lactation consultant told me to go dairy free and gluten free. I lost a lot of weight and my milk almost dried up and still nothing got better.

I pushed through it all and was feeling mildly better in Feb 2007 when I lost a twin pregnancy.

I had 3 successive D&Cs from March 21 to April 11 and after that developed what we thought was a kidney infection. I was given antibiotics I was clearly marked as allergic to and I had a seizure. I saw a bright white light, felt a huge electric shock all over my body and began to seize.

I went to the hospital where I was told I was hyperventilating because I was tired and it was after that I can't remember much. I woke up to a body that was not mine. I couldn't move. Everything hurt. My head was foggy, my abdomen was stiff and every single movement felt like fire in my joints.

The hospital told me it was a gynae issue. Gynae came and saw me and told me it was a Rheumatology issue. Rheumatology told me I couldn't be seen for 4 days and to lie in the hospital bed and get better.

I checked myself out of the hospital against medical orders and saw my family GP the next day.

He broke the news to me: Jen, he said. You have Lupus. We're ordering tests now but every fibre in my body is saying Lupus.

No, I said. I can't have LUPUS! People with Lupus can die!!

He pointed out I couldn't uncurl my hands. They were frozen, turned in, to my body. I couldn't lift my arms, walk or toilet myself. I hadn't eaten for days and was drinking water from a straw. It felt like shattered glass was being crunched every time I moved, from the little trial movement to a full-on sneeze or sob.

He started me on 40mg of Prednisone and I was wheeled out of the room to the car. I went up north to stay with my MIL and daughter.

After 2 weeks I felt fantastic and so we stopped the Prednisone. Immediately every symptom came back. I have never regained that same vitality or health since. I returned home unable to walk, unable to lift a mug to my lips, and unable to cope with what was happening.

And that began the journey to diagnosis, beginning in April 2007 and ending in July 2010.

In that time I was diagnosed with Lupus, Rheumatoid Arthritis, Still's Disease, Familial Mediterranean Fever and finally Traps, or Tumour Necrosis Factor-alpha Receptor Periodic Syndrome. I have also been tested for Lyme Disease, Hyper IgD, and Porphyria.

In that time I have tried Prednisone, Hydrochloroquinine, Methotrexate, Azathioprine, Colchicine, Paracetemol, Ibuprofen, Voltaren, Codeine, Oxycodone, Morphine, Citalopram and Quetiapine. I've had 2 bowel bleeds, allergic reactions to Azathioprine and antibiotics, a 2nd degree burn from the MTX. I've lost my hair, gained weight, developed major outbreaks of acne, lost and gained muscle tone, found and lost my faith in G-d, and became a victim with serious rage and depression.

In that time I've been told I've made it all up, couldn't possibly have a rare disorder, had Lupus and was being a 'woman' about it all, to harden up, to get on with it, that arthritis doesn't really hurt all the time, that no one knows what to do with me, that I'm going to be a guinea pig and not complain about it and that men don't stay with fat women.

In that time I've had 2 incredible GPS, 3 rheumatologists, including the same one who dumped me and later took me back, 2 rounds of genetic testing, and finally 1 answer.

In that time I have experienced bouts of Pleurisy, Pericarditis, numerous kidney infections and inflammations, gallbladder inflammation and stones, migraines, abdominal pain, anxiety, depression, anger, grief, thoughts of suicide and a divorce.

I'm Jen, and this is my story.

2 comments:

Debbie said...

Jen, you are amazing! I've followed your journey for several years now. Your ability to articulate is a gift. I am glad that you have started this blog; no doubt you will help others as you travel this path. xo

Crista said...

OMG Jen, I only knew about half of this. Unreal. I am so glad you are blogging again. Sending you big, big hugs.

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