My name is Tina. I am 38 years old and this is my story. I was always sick as a child catching just about every virus or illness that passed by me though the doctors basically just said my immune system is low. As I became a young woman I found myself usually turning in early at night due to being tired. It seemed I was ALWAYS tired.
I should mention at the age of 14 my mother passed away. She had non alcoholic cirrhosis of the liver, holes in her cornea and a hump on her back. She may have had more but she wasn’t very open about her medical issues. She had passed of pneumonia at the age of 44. ok back to me now. I put up for years with my then husband always telling me I was lazy and never did anything. I did all I could exhausting myself most times just to clean a little and make dinner. I did work though I was in alot of pain it was thankfully a desk job. Most doctors just said lose weight you will get more energy blah blah blah. Bet you see a pattern here 🙂 I remarried after a nasty divorce and had a still born in 2005.
That’s when alot of things took a large downhill fall. At this time I was going to the gym I lost 60 pounds and was running here and there and going going going. Once the life settled I got pregnant again with a beautiful baby girl. After her delivery I found myself more tired than usual and in a lot of pain. Then I started having dizzy spells and black outs. My joints would swell up my muscles would feel like they were on fire. Due to not having insurance after my husband and I both lost our jobs going to the doctor was not something I could do. Once we found stable employment I started going to see a specialist. I was told I had fibromyalgia and depression (that was put on me when I lost my son and never removed..I do not suffer from Major Depressive Disorder) I was told accept it.
Yeah that didn’t bod so well with me (laughing) I went to the Cleveland Clinic and was put through rigorous testing. They diagnosed me with sjogren’s and severe fibromyalgia. Once I got back home I made an appointment with a rheumatologist. He put me on Elavil which caused my bowels to shut down landing me in the hospital. I found a new doctor and he began his own testing. Due to symptoms, reporting, bloodwork, and pictures I was diagnosed with raynaud’s, systemic lupus, and low and behold Mixed Connective Tissue Disease. My doctor states I am not a text book patient since my bloodwork is stable yet my symptoms are out of control. I get rashes, swelling, pain, fatigue, swollen glands, dry mouth, mouth sores, dry eyes, confusion, and then it was off to the neurologist. He diagnosed me with Migraines, sensory neuropathy, and myoclonus Disorder.
With this disease it seems that no matter what is going on there is always either something new being added or the symptoms seem to be difficult to manage. I have been tried on a host of medications and am still looking for the right cocktail. I will tell you that diet helps tremendously with me. I follow the AIP diet. I have had to go down to part time and file for disability. At this time it has been almost two years since I have first filed and I am still fighting. I started Zordia’s Creations on facebook and etsy making spoon jewelry to honor chronic illness awareness and to provide a unique way of showing support for any chronic illness since even one is to many.
Remember never ever judge a book by it’s cover..just because someone doesn’t look sick doesn’t mean that they are not.