Tuesday was absolutely the worst day of my life. It was so horrible that by end of the day I just couldnt muster the strength to blog about it. You all are aware that I am notorious for lengthy blogs and that night I could barely put together a sentence. Therefore I waited until I rested a little and gave some thought to the events that occurred that day before posting something. My mind is clear now and I promise that this blog will not be a novel like the rest. For once, I just need to vent. Before I do so however, I feel it necessary that I comment on something that has been bothering me for a few days. This additional thing did not make the occurrences of Tuesday any easier and once I get it all out, then I am sure all of you will understand why I feel the way I do. So for a brief moment I am going to have a small rant and then I will explain what made my Tuesday so horrible. 
Editors Note: On a previous blog written a couple of days ago, I mentioned that I was not greatest thing on Earth and I did not expect many of you to be interesting in reading the incessant ramblings within my blog. Those of you who have known me during my year here on Suicide Girls are fully aware that I often make jokes about myself. That is how I deal with the boring mundane happenings in my life. Apparently, this offended a person I have befriended on the site and I am uncertain as to why. Maybe, it is because they do not know me well enough to know that I tend to poke fun at the fact that I am ordinary. Anyhow, this person wrote me and basically told me to stop talking about myself. First off, this is a free country and everyone within it is entitled to freedom of speech. Secondly, just because you do not like how I phrase something does not mean you have to comment on it. I was not attacking another individual. I was merely poking fun at myself as I always do. Until this message, no one has seemed to have a problem with my kidding nature and the fact that someone was offended truly hurt my feelings. Therefore, I am making certain that is understood that sometimes you have to joke a little to lighten the situation a bit. I knew the blog that I posted on Monday was going to be extremely long and in all honesty most people would not read the entire thing. I do not hold that against anyone, it was obvious that the blog was long and could lose the attention of the reader. I just happened to have a lot to discuss that day and I have always used Suicide Girls as a place to vent and share things with those of you or are interested in what is going on in my life. I have never been one to think that cockiness or bragging about oneself is a positive quality to possess and I by no means but myself down for sympathy. I want no pity from no one. I was simply being honest and saying that I do not feel that I am the greatest thing in the world. That is the way I feel and I hate that being honest offended someone. I try to be kind to everyone and it really hurt me to think that just because I do not think highly of myself someone became upset. Do not get me wrong, I love getting compliments just as anyone does, but I am not the best at accepting them. This is because I am not used to getting them until recently. Personally, I think I am just a boring geek with nothing special to share with the world. If someone thinks differently, then yes that makes me smile, but it still does not change how I feel about myself. I am sorry that I grew up being told I was a burden and that would never have a normal life. I am sorry that for years I was abused by not only my parents, but also a boyfriend that was supposed to love me. It was my fault that I put up with it and did not fight back. I am fully aware of this and have learned from my mistakes. I removed myself from the situation in which these things were occurring and now my life is much better because of it. One must understand however, enduring years of such occurrences in ones life tends to give you a poor self image. I will admit I have low self esteem. Being disabled does not help this either. I have had to endure teasing and ignorance my entire life. All of this is why I do not think I am great and I should be able to vocalize how I feel without someone thinking I am being too hard on myself, even if I am. I just wanted to make this clear. End of rant.
So now that that is out of the way, I can write about Tuesday. This particular day, for the first time in my life I felt as if I was actually a freak of nature.
Many of you are aware that due to my Cerebral Palsy I have been having some problems that are a direct result of the birth defect. For example, I am experiencing severe pain in both of my ankles due to not being able to bear my weight properly. Secondly, my right hip is rotating inward and in turn as turned my right leg completely inward. To give you a better description of this try to picture this. When I am standing the side of my right knew is touching my left leg. This is VERY painful and due to lack of pain medication and treatment I have lost a lot of mobility and have basically been stuck sitting on a couch day after day hurting so bad that I spend most of that time in tears. Due to recent developments with Brandon and his health, I have put my health on the back burner and now I am suffering because of it. I will do anything for my child and I do not regret my decision, but on Tuesday morning I decided to try to find a specialist near me who could treat my Cerebral Palsy and correct the problems I have been experiencing.
One would think that this would be an easy task, but I soon became aware that this was going to be the hardest thing I have done to date. Due to not having long distance at my house, I am forced to make all calls out the area with a calling card. I have poor credit due to the negligence of my parents and cannot get a cell phone on a contract due to that fact and simply cannot afford a phone to do any type of prepaid plan at the moment. So my only option was the calling card.
First, it is important to mention that Pezmaster recently bought me a new calling card with 350 minutes on it. By Tuesday afternoon, I barely have 100 minutes to use. This alone aggravates me, but what resulted in the minutes being eaten was far more frustrating. Basically, I was told that no doctors in the county I live in treats Cerebral Palsy and would be of no help to me. Then I was told that the adjacent county would offer no assistance either. I figured this would be the outcome in that particular county, since I saw a doctor there last week and he rudely told me that he would be of no use to me medically. So ultimately, I decided to call the county in which I grew up, which happens to be the capital city of the state. I was told by 7 doctors in that county that they also did not treat the condition and had no idea who would be of assistance. At this point, I was beyond frustrated I was mad. Babies sadly enough, are born with this condition every few seconds. It is by no means rare. So I was astonished that I could not find any help. I assumed it was due to me being much older, since I will be 30 in October. I am fully aware that with this disorder more problems arise with age and it is harder to treat, but I had no idea that it would be difficult to even get an initial consultation.
As a last resort since I had already been on the phone with various doctors across the state for almost four hours, I decided to use my brain and go directly to the source. I contacted the United Cerebral Palsy Foundation. I knew if anyone could help me they could. At least point, I was starting to joke around which each place I called asking them why I had not been given the magical vaccine for Cerebral Palsy and it was no longer a medical condition. Absurdly enough, one lady laughed and said, If you would have been born with a fatal birth defect such as Muscular Dystrophy, then we could definitely suggest a doctor for you. She even told me she had eight pages of such specialists in that area. Really are these people serious? I was now beginning to feel like a freak. As if I had some disease that was so rare that no one had heard of it or even knew existed. So after that conversation I immediately dialed the United Cerebral Palsy Foundation.
Finally after almost four hours on a calling card, I got some answers. There is a specialist in West Virginia that treats as well as does comprehensive research concerning Cerebral Palsy. She was accepting new patients. However, the only bad thing is, she does not have an opening until late June or early July. So not only do I have to wait months in pain, I also must travel 6+ hours from my home to Wheeling, WV. Once I see this doctor she will write me a series of orders for the treatment she feels is necessary, whether it be orthotic equipment, surgery, or physical therapy. I can then take these orders to any orthopedist I feel competent to treat me based on her findings. However, at this point this is going to be difficult for me. I am losing faith in the medical profession.
After an appointment time was established, I was informed to limit putting pressure on both the hip and my ankles as much as possible. So basically, I am going to be couch bound for quite a while and I am not happy about it. I am in severe pain and now my life is being put on hold and am forced to lay and suffer. I am just not happy. The only thing I am glad about is the fact that I have Pezmaster and his family to take good care of me and make me comfortable until then and I they will be there when I need them afterwards as well.
I am hoping that Wednesday is nothing like Tuesday has been because I have no more tears left to cry and the pain seems to not be lessening. It is going to be a long couple of months. I guess all I can do is pray for a good outcome and keep smiling.
Much Love,
Jen
Editors Note: On a previous blog written a couple of days ago, I mentioned that I was not greatest thing on Earth and I did not expect many of you to be interesting in reading the incessant ramblings within my blog. Those of you who have known me during my year here on Suicide Girls are fully aware that I often make jokes about myself. That is how I deal with the boring mundane happenings in my life. Apparently, this offended a person I have befriended on the site and I am uncertain as to why. Maybe, it is because they do not know me well enough to know that I tend to poke fun at the fact that I am ordinary. Anyhow, this person wrote me and basically told me to stop talking about myself. First off, this is a free country and everyone within it is entitled to freedom of speech. Secondly, just because you do not like how I phrase something does not mean you have to comment on it. I was not attacking another individual. I was merely poking fun at myself as I always do. Until this message, no one has seemed to have a problem with my kidding nature and the fact that someone was offended truly hurt my feelings. Therefore, I am making certain that is understood that sometimes you have to joke a little to lighten the situation a bit. I knew the blog that I posted on Monday was going to be extremely long and in all honesty most people would not read the entire thing. I do not hold that against anyone, it was obvious that the blog was long and could lose the attention of the reader. I just happened to have a lot to discuss that day and I have always used Suicide Girls as a place to vent and share things with those of you or are interested in what is going on in my life. I have never been one to think that cockiness or bragging about oneself is a positive quality to possess and I by no means but myself down for sympathy. I want no pity from no one. I was simply being honest and saying that I do not feel that I am the greatest thing in the world. That is the way I feel and I hate that being honest offended someone. I try to be kind to everyone and it really hurt me to think that just because I do not think highly of myself someone became upset. Do not get me wrong, I love getting compliments just as anyone does, but I am not the best at accepting them. This is because I am not used to getting them until recently. Personally, I think I am just a boring geek with nothing special to share with the world. If someone thinks differently, then yes that makes me smile, but it still does not change how I feel about myself. I am sorry that I grew up being told I was a burden and that would never have a normal life. I am sorry that for years I was abused by not only my parents, but also a boyfriend that was supposed to love me. It was my fault that I put up with it and did not fight back. I am fully aware of this and have learned from my mistakes. I removed myself from the situation in which these things were occurring and now my life is much better because of it. One must understand however, enduring years of such occurrences in ones life tends to give you a poor self image. I will admit I have low self esteem. Being disabled does not help this either. I have had to endure teasing and ignorance my entire life. All of this is why I do not think I am great and I should be able to vocalize how I feel without someone thinking I am being too hard on myself, even if I am. I just wanted to make this clear. End of rant.
So now that that is out of the way, I can write about Tuesday. This particular day, for the first time in my life I felt as if I was actually a freak of nature.
Many of you are aware that due to my Cerebral Palsy I have been having some problems that are a direct result of the birth defect. For example, I am experiencing severe pain in both of my ankles due to not being able to bear my weight properly. Secondly, my right hip is rotating inward and in turn as turned my right leg completely inward. To give you a better description of this try to picture this. When I am standing the side of my right knew is touching my left leg. This is VERY painful and due to lack of pain medication and treatment I have lost a lot of mobility and have basically been stuck sitting on a couch day after day hurting so bad that I spend most of that time in tears. Due to recent developments with Brandon and his health, I have put my health on the back burner and now I am suffering because of it. I will do anything for my child and I do not regret my decision, but on Tuesday morning I decided to try to find a specialist near me who could treat my Cerebral Palsy and correct the problems I have been experiencing.
One would think that this would be an easy task, but I soon became aware that this was going to be the hardest thing I have done to date. Due to not having long distance at my house, I am forced to make all calls out the area with a calling card. I have poor credit due to the negligence of my parents and cannot get a cell phone on a contract due to that fact and simply cannot afford a phone to do any type of prepaid plan at the moment. So my only option was the calling card.
First, it is important to mention that Pezmaster recently bought me a new calling card with 350 minutes on it. By Tuesday afternoon, I barely have 100 minutes to use. This alone aggravates me, but what resulted in the minutes being eaten was far more frustrating. Basically, I was told that no doctors in the county I live in treats Cerebral Palsy and would be of no help to me. Then I was told that the adjacent county would offer no assistance either. I figured this would be the outcome in that particular county, since I saw a doctor there last week and he rudely told me that he would be of no use to me medically. So ultimately, I decided to call the county in which I grew up, which happens to be the capital city of the state. I was told by 7 doctors in that county that they also did not treat the condition and had no idea who would be of assistance. At this point, I was beyond frustrated I was mad. Babies sadly enough, are born with this condition every few seconds. It is by no means rare. So I was astonished that I could not find any help. I assumed it was due to me being much older, since I will be 30 in October. I am fully aware that with this disorder more problems arise with age and it is harder to treat, but I had no idea that it would be difficult to even get an initial consultation.
As a last resort since I had already been on the phone with various doctors across the state for almost four hours, I decided to use my brain and go directly to the source. I contacted the United Cerebral Palsy Foundation. I knew if anyone could help me they could. At least point, I was starting to joke around which each place I called asking them why I had not been given the magical vaccine for Cerebral Palsy and it was no longer a medical condition. Absurdly enough, one lady laughed and said, If you would have been born with a fatal birth defect such as Muscular Dystrophy, then we could definitely suggest a doctor for you. She even told me she had eight pages of such specialists in that area. Really are these people serious? I was now beginning to feel like a freak. As if I had some disease that was so rare that no one had heard of it or even knew existed. So after that conversation I immediately dialed the United Cerebral Palsy Foundation.
Finally after almost four hours on a calling card, I got some answers. There is a specialist in West Virginia that treats as well as does comprehensive research concerning Cerebral Palsy. She was accepting new patients. However, the only bad thing is, she does not have an opening until late June or early July. So not only do I have to wait months in pain, I also must travel 6+ hours from my home to Wheeling, WV. Once I see this doctor she will write me a series of orders for the treatment she feels is necessary, whether it be orthotic equipment, surgery, or physical therapy. I can then take these orders to any orthopedist I feel competent to treat me based on her findings. However, at this point this is going to be difficult for me. I am losing faith in the medical profession.
After an appointment time was established, I was informed to limit putting pressure on both the hip and my ankles as much as possible. So basically, I am going to be couch bound for quite a while and I am not happy about it. I am in severe pain and now my life is being put on hold and am forced to lay and suffer. I am just not happy. The only thing I am glad about is the fact that I have Pezmaster and his family to take good care of me and make me comfortable until then and I they will be there when I need them afterwards as well.
I am hoping that Wednesday is nothing like Tuesday has been because I have no more tears left to cry and the pain seems to not be lessening. It is going to be a long couple of months. I guess all I can do is pray for a good outcome and keep smiling.
Much Love,
Jen
VIEW 10 of 10 COMMENTS
nerdmachine:
It might have taken a lot of effort, and it might be a long wait, but hopefully this specialist will turn out to be super helpful and it'll all have been worth it.
nickstone:
Thank you so much for each of your words; I appreciate and it touches me.