I am 43 years old and it is believed that I was born with hydro, but sadly it wasn't diagnosed until I was 5. I spent my early years with terrible seizures, jaw and mouth issues, medication allergies and countless emergency room visits and hospitalizations. It wasn't until I was 5 years old when I had my first bought with cerebral meningitis (I've had it 3 times!) that doctors finally discovered why I had been so sick.
Since then I have had 20 shunt replacements or revisions and had my gall bladder, appendix and right kidney removed plus a full hysterectomy. I have also had multiple surgeries on my feet, mouth and several other exploratory surgeries.
All of that, believe it or not is not the worst of my battles.
Approximately 7 years ago I began developing strange thickness and curving of my fingernails. They didn't hurt right away but as time went on it didn't matter what I bought over the counter, nothing worked. About a year after that started, my scalp began to itch, and as I scratched it I had flakes fall like it was dandruff. I tried dandruff shampoos but it made it worse. I couldn't wear dark clothing, wear hats of any kind or use most shampoos. That was it, I gave in and asked my doctor. She looked at my fingernails and my scalp and just said it was an allergy.
It has been said often by those of us who battle hydro or any long term illness that we know our bodies better than most doctors. I knew this wasn't an allergy but my doctor wouldn't look into it further. That was when I surprisingly gave up too. I let it go for another year, didn't talk to anymore doctors and fell into a depression as my fingernails kept swelling and my hair began to fall out.
Then one day I woke up after only a couple of hours sleep because I was itching so much and I decided I HAD to do something. I had spent a lot of time reading about skin conditions and remembered that sunlight could help. I was a guard at the pool at my apartment so I thought it would be perfect! I had nothing to compare myself to all those photos I saw online except for my nails because I had no idea what my scalp looked like! So I asked my neighbor's husband if he could shave all my hair off. He looked at me funny but I told him it wouldn't be a big deal because when I was little, neurosurgeons would shave off all of my hair instead of just the area they were operating on like they do now!
The day Mike shaved off all of my hair, his wife, Justine invited a bunch of our neighbors and we grilled some burgers, had a few beers and made a party of it!
But...once my hair was all gone, I saw Justine crying. When I asked her what was wrong, she handed me a hand mirror. Before I even looked, I took a deep breath. I knew I was going to see something bad, but little did I know what I'd see!
It's called plaque psoriasis. Those little white things raise and sometimes fall off on their own. I eventually developed a habit of picking them off because they would pull my hair and really hurt! Plus notice how it's very close to my shunt scar? Well, this was 3 years ago. Not long after this photo was taken it did creep onto my scar and down my neck. I just assumed I would have to live like this forever.
That was until I met my boyfriend, Aric 7 months later. When we met I barely had any hair. He said it didn't bother him, but what did was the fact that I was so miserable. He called around and found a different general doctor for me and insisted that I make an appointment. I had already spent 2 years not seeing any doctor so I didn't have any interest, but he told me I already had enough going on that I didn't need this too. So I made the appointment and joked that the poor doctor will kick me out because I had so many health problems!
Dr. Coombs was shocked that one person could have as many health problems as me and still be alive or not in some mental institution from major depression! She immediately sent me to a dermatologist but after a few months there and only receiving a few injections, I wasn't happy. By this time I could barely walk, lift, bend over or anything and she knew it had to be something more than just psoriasis. She decided to send me to a rheumatologist because they deal in both skin and bone conditions. After a couple of blood tests Dr. Dinning confirmed psoriatic arthritis. I cried because finally someone believed me and confirmed what I had known for 7 years!
Basically, psoriatic arthritis is psoriasis and arthritis together. It's much like other forms of arthritis but it can often be worse because of the skin irritations. It's an autoimmune disease. That happens when the immune system mistakes some part of the body as an organism and attacks it's own cells. Anyone at any time and any age can get an autoimmune disease, but usually people who have had surgeries (even just one!) or some other disease (trauma) will develop an autoimmune disease. Psoriatic arthritis is just one, there are other more common ones such as celiac disease, eczema, lupus and multiple sclerosis.
Unfortunately since my official diagnosis last year I've gotten worse. It's harder to walk, I can't stand for long periods and my sleeping patterns are worse. In March, my doctor decided it was best that I try infusions. As soon as he said that word I cringed. Not because the idea of infusions bothered me, but the needle did. I'm not scared of needles, but when you've had as many surgeries and hospitalizations as I (and many of us) have, your veins begin to fight back!
This tatt gets a lot of attention. When in an emergency room I've had people come from all over the hospital to see it or people take photos with their cell phones!
The first two times I did an infusion it took 6 tries each to get a needle in a vein. Since I had to have them regularly (and will have to for the rest of my life!), my doc sent me in for an infusaport. It's like a PICC line but it's under the skin and can stay forever.
Now all it takes is a poke into a small little port under my skin and I don't feel a thing!
The infusions don't completely take the disease away. In fact, after I began them, I developed raised spots on my legs.
Plus I have wonderful friends like Tim who allowed me to tell my story and spread the word that things could be so much worse!