| ok, normally my blogs are not about anything, but i do have something to vent about. i have a brother, he is 27 years old. when he was 13 he was diagnosed with a very rare neurological disorder, CIDP (Chronic Ideopathic Demylinating Polyneuropathy) Chronic = will last all his life and there is no cure, Ideopathic = they dont know what causes it, Demylinating = eats away the mylin around your tissue, and Polyneuropathy = of many nerves. Basically his own immune system attacks his body. Over the years i've realized that thats a simpler way to describe it, although it is so much more complex. A more common version of this illness is Guillain-Barre, for those of you who might watch the news, a couple weeks ago it was televised that the Auditor of the State, Betty Montgomery had this illness. Guillain-Barre and CIDP are very similar, although Guillain-Barre is temporary, is last from a couple months to a couple years, but you will recover. There is no cure for CIDP. Until recently my brother has been able to lead a normal life. He was homecoming and prom king in high school, graduated from the University of Toledo, and pledged Phi Kappa Psi. See to help 'control' his illness there are various treatments, some work for certain people and some dont. The only medicines that worked for my brother was cyclosporine and prednisone, two steriods. My brother was on these daily for 12 years. See my brother would appear perfectly healthy, sometimes he would go a year without a relapse, and eventually he was able to realize when he was headed for a relapse so they would up his medication to prevent one. If he did relapse that meant that he would go into the hospital for a few days and recieve an assortment of treatments, they would start higher doses of meds (which would make him gain alot of wieght; my brother's best friend described it as "he would go from not being able to eat a whole big mac to eating two or three") and then he would appear to go into remission. The doctor warned him that after continuous use your body gets addicted to the drugs and they could have severe side-effects. But what could you do really? Every single time the doctor's tried to wean my brother off the meds he'd relapse. So he kept taking them. And he kept appearing healthy. Now realize that there is eight years between me and my brother and it was not until a couple years ago that i fully understood his illness myself, i was in the fourth grade when he moved to toledo (4 hours away) for school and then he stayed up there after he graduated. He married his high-school sweetheart in 2001. She graduated from the University of Toledo as well. My brother majored in Business and Financing. His dream was to own his business. He got a job working at Oak Express and he made big money. He was a good salesman because he's a wonderful people person. Week after week he would be top salesman, many times bringing home $1000/wk. Well they offered him a job as a Manager of his own store in Tennesee. (In the mean time his wife was pregnant). This being part of his dream, him and his pregnant wife agreed to move to Tennessee. Well, what Oak Express did not tell my brother was that the store was not bringing in as much money as it should to begin with. Also, and i am not saying this to be racist, neither me nor my family are racist, but i believe that there is such a thing as reverse-racism and that is what i am going to talk about. All of my brother's staff was black and they discriminated against him. He hated his new job. And he was not bringing in the money that he previously was, and his insurance policy was not very good. The birth of his baby cost him a $2500 deductible, but that was ok, they had the money. Well soon after his daughter was born, he started feeling sick. He was depressed about his job and hated being in Tennessee, him and wife both felt this way. She was very home sick because her and her mom were really close. So when their baby was three months old they packed up and moved back to Ohio. That meant breaking their apartment lease, which was costly, and paying for uHaul. It took most of all of their money to make the move. This was early 2004. The plan was for them to move in with her parents, just until he found a job and saved up some money so they could get a place of their own. My brother got a job with an insurance company. While driving one day he turned to look in his blind spot and he popped a disk in his back. This caused him excruciating pain and he was no longer able to drive. His health suffered a severe decline from there and the insurance company had to fire him for not being able to come to work. The doctors realized that the long-term use of prednisone had caused his spine to deteorate and in turn caused osteoporosis of the spine. His choices were: continue taking prednisone and end up in a wheelchair or stop taking it and see what happens. (He is 25 at this point). My brother does not like to appear weak, it took him a long time to even come to terms with the fact that he was and would always be 'sick', sometimes during relapses he would not even want his friends to know, so the idea of being confined to a wheelchair was not an option for him. He went off all of his meds. For months he could only lay in bed because he was in so much pain. Most of it, at that time, was due to the disk in his back. My brother is my hero, he is my all-time favorite person in this whole entire world, he has a Superman tattoo and that is what i think of him as, my superman, and to watch someone that you look up to and someone that used to take care of you, hardley be able to walk to the bathroom without falling is the hardest thing i've ever went through. the illness severely affects his balance; when he was in the eighth grade he had to walk on crutches for a period of time and then some time later he used a quad-cane for a short time. my mom got back out the quad-cane and my brother still uses it today. my brother went through severe depression during the time he was confined to a bed, in addition to that he could not even pick up his little baby girl, and he could only stand his living at his in-laws for so long. They could not afford their own place because he had only recieved one paycheck from the insurance company he worked for before he got sick. his wife can not obtain a job in the state of ohio with only a bachelor's degree, her degree is in speech pathology and she had intensions of getting her master's at toledo but then she got pregnant. So she managed to find a job as a filing aide at the hospital working second shift. that was their only income. my mom could hardly bare seeing her son like this, so my brother and his wife and their baby came a stayed with us. they moved in the summer before my senior year. my brother became a little more happy by staying at our house, and slowly the pain of his back eased. my brother filed for disability in june 2004. he was denied. he applied again. denied. so he hired an attorney and filed again. they are still waiting. every time he calls to get an idea of when the court hearing will be they tell him its still over a year. and its due to his age. he was denied because of his age and they are putting of his court date because of his age and it is fucking bullshit. just because you are in your twenties doesn't mean that you cant be physically disabled. my brother's wonderful friends held a benefit for him in march 2005. i have never seen the support of soo many people. it was absolutely fantastic. with that money and the kindness of friends who rented a house to them for cheap, they were able to move into a house of their own. his wife got a better job as secretary at a vocational school nearby and so that put her on day shift. my brother's health has improved, however he now has to adjust to his new way of life. he still uses a quad-cane, has to wear braces on his lower legs, and he still suffers from back pain. there is no way that he is able to work. he tries to keep busy, he helped coach little league and he plays in poker tournaments alot. and even those 'normal' things wear him out. say that he has a poker game one night, well before he goes he puts pain patches all the way across his back so he can sit for a long period of time without hurting too much and then all the next day he has to rest because his body cant do that much. he still cant drive. he hasnt driven in over a year. but their financial situation is better and his wife just had another baby. and once he wins his court case he will be owed backpay from june 2004.
now to the point of my blog. why does God feel the need to do such things to people. sure we all have our 'problems', but what about those that really do. like all the people who are ill that dont deserve to be. im not just talking about my brother. what about all the children that have leukemia?? all the children that die that dont deserve to? what is God's point? im all about what doesnt kill you makes you stronger, but why do you have to suffer all your life?? i believe in God, i really do, there used to be a time when i never missed a sunday at church. and that time ended when my brother and his family moved in with us. it is soo hard to believe in something when you pray and you pray that the one that you love wont hurt anymore, and it doesnt make one bit of difference. i guess that i am just bitter. i have never had the same faith nor belief in God that i used to. i just have issues with him. i wish that i could get pass them and i hope that one day i am able to, but honestly, and please forgive me, but He pisses me off. how can he hurt someone and keep doing it?? it is just so hard. i know that everything happens for a reason, but what could be the purpose of this? granted the situation with my brother has made me realize to be very grateful for what i have and when i am having a bad day and 'hate my life' i do think about my brother's and realize that i dont have it so bad, and i am glad that i realize that. but still, what about my brother?? why does he have to suffer??
i dont know. i just felt that i needed to talk about it. and the thing is is that no one ever seems to understand. every time my brother relapses into the hospital, i cant help but think, is this it? is this the time he doesn't come back?? because the doctors dont know what this is capable of... they dont even know what causes it and until they figure that out they cant make a cure. sigh.
i think that that is enough now.
thanks for listening... i love you guys so much and miss you like crazy!! |
if you want a piece of it... .leave me comments... 
.
. cheers!