Today was another doctor visit, which I should be use to by now, but for the past few weeks I have been so stressed out about this visit. I knew the doctor and I were going over the test results from my function test. Every thought possible has been running through my head and I have been so confused. Well I lost over 63% function in my upper extremities and my lower extremities are not as bad. All I wanted to do was cry when I left the office to head home but I had so many thoughts an emotions rush over me at once I couldn’t do anything or feel anything.
Once I got home I began to feel anger, not understanding why this has happened and how other people have managed to live a life with this horrible disease. Of course my boyfriend does not understand one bit about all the emotions and feelings I have to manage daily. I was being short with him and it wasn’t out of anger towards him but with my whole situation and all he could say was, “You need to watch your attitude it is getting old.” How is that suppose to make me feel? So from anger to then hurt it was like a light switch.
Why can he not understand? How can he not put himself in my shoes? It makes it so hard to control all the thoughts rushing through me and how to deal with each one. I take “happy pills” or depression medication but nothing seems to be helping. I know I should go talk to someone but how can someone who doesn’t have to go through what I have to go through clearly understand? Sometimes I feel like these million emotions that I try to deal with every day makes it so difficult to function and live my life the way I wish I could live. How many other people feel this way? How do they manage it?
I am 26 years old and I was diagnosed with a rare connective tissue disease. I wrote about some of my experience in life in a previous blog but I wanted to start spreading the word about scleroderma and how it can affect many people. Most people have never heard of the disease.
Scleroderma is a chronic hardening and tightening of the skin and connective tissues disease that has affected an estimated 300,000 Americans. Most of my information came from either my doctor; whom has been treating me for the past 5 years, and the scleroderma foundation. They do have a website that anyone is more than welcome to visit. WWW.scleroderma.org Unfortunately at this time there is no cure but everyday there are researchers who are working hard to help people like me. There are treatments and medications that can help manage the symptoms.
Every person who is diagnosed with scleroderma is effected in a different way. However, anyone who was told they had this rare condition at some point asked “Why ME?” there is no one answer because at this point no one knows what causes the disease. It is hard not only physically but emotionally. Many people become depressed and you begin to feel you have to put a smile on and pretend to be ok from the outside. If you have been diagnosed with any kind of connective tissue disease you are not alone. There are support groups in almost every state any plenty of resources to help you live with any disease.
I know every couple has ups and downs. Everyone fights or argues but what is so important that no one can come to an understanding? When I got with my boyfriend I had known him for years but we lost touch after we graduated. I know people change; I had definitely changed from when we were in school. I knew he had flaws just like I did but no matter what we agreed to work through anything.
In the beginning of our relationship things were perfect. He had time with his friends and we both worked during the day, then we at nights that were our nights with no one else. It was great because he had his own time and so did I. Of course we both spoiled the other one in the beginning because that’s just how things work but as the relationship went on we began to argue a lot. He felt he didn’t have enough time with his friends but when he did go out all I did was bitch and complain, according to him.
However, I felt like I never got time with just him and I and he was never home. When he came home from work he would either leave with his friends, be on the phone the whole night with them, or they would be coming over to the house. How were we ever suppose to have him and I time? To him because we live together and he came home every night, we slept in the same bed, that he was spending time with me. That was not how I saw it at all. I would try to explain my feels but I felt he never understood or would get aggravated and walk away.Later I realized he is just not a confrontational person at all. He was so use to his ways for years before I came along and was not use to a serious relationship that he did not know how to handle the situation.
We sat down and tried to work things out where we would have our nights, with no one around, and we would have nights apart. That way we both compromised, however I still feel I am giving for than receiving. I do anything and everything for him, do not get me wrong he does things for me all the time also, however when it comes to bills, being an adults, or responsibility he will avoid it or begin an argument until I give up. Why is it so hard for him to understand and try to work things out? Why can he not see how bad it hurts me when he talks to me in ways that hurt? I am confused every day and I feel like it is an ongoing fight that will never be resolved.
Most women believe they are not beautiful but you are. For the past six years I have be insecure and hated my body. I wore baggy clothes, didn’t do my hair and makeup all the time, and hated to be around people. Everyone who past me would stare or make faces and I was sick of being asked on a daily basis if I was pregnant. No one knows what battles you face and no one has ever walked a mile in my shoes. I was diagnosed with health issues but I didn’t post them all over social media or tell everyone I knew because if I couldn’t handle my emotions I did not want to feel worse about them. Even after all this time I still sit back and wonder why this all happen. The feelings that hurt deep down because no one understands or believes your pain. A health issue, heartbreak, lose of someone, there are many things in life that affect us all differently. And in the end we all feel alone like no one cares or no one will listen. I am not the kind of person who enjoys speaking to a therapist, first off they are paid to listen and say their opinion but have they ever went through the things you have? When I began to blog and express my emotions even through quotes on facebook, when people became to like and comment I realized I am not alone. There are others who feel the same way I do. There are others who feel alone. But now, you are not.