Friday, May 15, 2015

Carlos Johnson and his story of AIP. How he endures it! A must Read

To start I'm not looking for any sympathy for telling my story but this is the first time I've ever told anyone about my story except for my family they know everything. So here we go, now all my life I have had really bad belly pain & I started having seizures at the age of 2 for a long time I dealt with these ailments all my life & at the age of 16 or 17 I had a bad attack of some kind to the point where they thought it was my appendix so that was removed. Still the stomach pain continued & the seizures were coming more frequent by that time I was hospitalized because I had a bad seizure & it put me in a coma for a couple of days by this time I had already been diagnosed with this disease called AIP by Dr Vincent Lo Rae in Philadelphia PA &I was in this coma for a few days & I awoke to a tube in my neck because I wasn't eating & they had to keep fluids & nutrients going into my body. It was the most horrible moment in my young life at that time from that moment on life got worse, at this time I was 17 going on 18 & I had already been a father of 1 daughter & was getting ready to be a daddy for the second time when I ended up having another attack to where I was hospitalized for 2 months which again was a horrible experience because the Dr's didn't know how to treat this very rare disease so I was drugged up & was treated horrific in the hospital  by the nursing staff because I was in so much pain & didn't feel like they were treating my pain fairly. So finally the attack subsided & I began to eat a very little bit & started being able to stand & walk again for I had been in bed for such a long time my legs were wobbly. So I was in the hospital for 2 months & a week, then I was released & went home. So by this time the doctors, my mother & my daughters mother began to realize that I would never be able to hold a steady job again due to the disease, this was hard for me because I had been working since the age of 14 & it was my lifelong ambition to be a chef/cook like my father was, but that dream was crushed. So they decided I had to be put on disability so that I could take care of myself & my children, this made me so angry because I felt like I was a failure so I started feeling really depressed & then something new started I was throwing up & losing weight at a real fast pace & my mommy being the intelligent woman she is began to research all of the ailments of this disease and it started showing her all of the things that I was going through so we had a list of things to watch out for now to figure out when an attack was coming & all the things I would go through during these attacks. So to make a horribly long story short I have been in & out of the hospital all my life. I tried working through all of these pains I've worked in hospitals cooking, I've worked in some of the finest restaurants still while suffering from the disease then finally in 2008 I was hospitalized because I had an attack on my job & had a bad seizure & this was the worst attack I had to date this time I was only hospitalized for a month but this attack was bad because it did n something to my back & legs still I tried to go back to work when I got out but my body had , had enough so by this time I  was 31 & had 5 children & couldn't provide for them & this caused a big tension between my children's mother because she began to not be able to deal with me being sick all the time. So then I was fresh out of the hospital when this happened, I was 400 miles away from my family, I was homeless & sleeping in my car & I was still very ill from just being released from the hospital. So friends of mine I was working with took me in & took care of me until I was able to somewhat fend for myself. So now I'm living with people I don't even know really but they were kind this time it was late 2010, and I was able to make it home to Philadelphia I stayed home for about 6 months & while I was there I had another attack & was hospitalized by this time it was July of 2011 and I was in a hospital in Philly there it was a doc that knew about my illness (thank god) & he decided to give me the Panhematin & I swear by the second day of having the injection I began to feel a whole lot better, better than I had felt in years so with my pain meds, my seizure meds & vitamins I was feeling good so good,  I got a part time job & was able to provide for my family to supplement what child support was taking from my ssd check but then 11 months to the day I received the injection I began to feel the symptoms of the disease coming back, the stomach pains the pain in my back & in my legs it had all came back again & I was hospitalized again then here in VA these drs don't know or care to understand the disease because of me wanting the pain to subside again I was taking a little more pain meds than prescribed. Not because I was addicted to them but because the pain was so severe the meds made it easier to deal with.  I'm have to walk with a cane permanently because my legs are unpredictable & give out on me & the pinching pain & the pain in my back & neck are horrible so most of the time I'm in bed because of the pain. So this is my story thus far thanks for letting me share & please pray for me & my family because it's so hard on me & my fiancĂ© of 3 almost 4yrs  & our little boy who is 2 it's very hard to watch my love work herself silly to take care of the 3 of us  child support I was taking 3/4 of my check so it is getting worse I just wish that these drs were more educated about this disease so that the Panhematin can be administered as needed. Thanks so much for this it really helps to talk about this.
             Carlos Johnson, AIP  

                                "Remember....Research is the key to your cure!"

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