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?
Lately there has been so much going on in my life that I do not know how to feel anymore. Lost, Alone, Crowded, Loved, Mistreated, Unhealthy along with so many other feelings. Does anyone else go through the same things? It is hard for people to understand how you feel when you try to pretend everything will be okay and hide all the pain. I want my life to have meaning and I want to move forward so badly that I am confused about what path to take. When my mind feels like it goes at a hundred miles a minute it is hard to process everything and set goals to have a better life.
It is like I know other people suffer from the same things but yet I feel so alone. My boyfriend does not understand because he has never suffered from anything like this. He has lost loved ones and friends but never had something happen to himself that made his life change dramatically. I want us to have fun but yet grow up and be adults. We are both in our late twenties yet still live with his parents. I do not mind because we help them out but yet and still he need to realize I want a future not just a companionship.
On top of all the health issues I deal with on a daily basis I deal with all the stress from home and being an adult. It begins to overwhelm me and all my emotions begin to run together. I try to take care of myself but I have no energy or initiative to want to get up and change the things that I can change. Some times I wish that I could trade shoes so he can see how I am feeling and how all of these mixed emotions take over my life and becomes stressful.
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.
Everyone makes bad choices growing up; sometimes even when we are adults we seem to make bad choices. I am sure I can make excuses for some of my choices I made but sitting here looking at social media and reading different things it became clear to me that I no longer want to make those wrong choices any longer. Some people will never learn from all of their mistakes so they do not always see the path they should go down. I wish I could take back some of the things I did and said to people; I would probably have a totally different life by now. However, it is those same wrong choices that led me to where I am today. That I would not change at all.
Yes I may not be exactly where I want to be in life but I can’t complain either. I have a great family and friends who are very supportive and loving. Plus an amazing man who drives me absolutely crazy at times but takes very good care of me. It is ok if you make mistakes as long as you learn from them. I use to hang out with not such a great crowed and didn’t treat people with very much respect at all, today I sit here and wonder how the hell I didn’t beat my own ass. I would never want my child to treat people the way I treated others but when you get mixed up in a bad crowed you seem to become a follower not a leader.
I lied to my parents about where I was or who I was going places with, however I am sure they knew some of what I was doing was a lie. I do live in a pretty small down but I should of never done that. My parents were pretty understanding people and let me do almost anything I wanted but I still seemed to make bad choices. After I graduated I quit my job, lost my car, started partying and drinking more than I ever did before. I got married at a young age and divorced a year later. No one’s fault but my own and I am starting to take responsibility for all my actions even if I really do not want to.
I have set a few new goals for myself and my life. I am the only one who can achieve them and force myself to become a better person. It takes making a lot of bad choices to be set on the right path.
Some people think they deserve a pitty party all the time. It gets very aggravating and makes you not want to be around that person. Do you feel sorry for that person? Maybe, with particular situations yes but at the same time if it is a situation they put themselves into no. It is sometimes hard to judge what you should really do but it is best sometimes to walk away from the situation so you do not explode; so to say.
I have a best friend who I love. We have been friends over 20 years and we are always there for each other but she got herself in a position that is no bodies fault but hers. Her mother and I helped her out of situations over and over to the point she would just use us whenever she was mad at her boyfriend. She continued to go back to him over and over; honestly I do not have time for all of that. I have been out of high school for years now and I have plenty of other prioritizes in my life to deal with. We both agreed that if she wants to continue on that same path then why do we continue to pitty her and give her sympathy.
She is a person who thrives off of it and it seems to be like a record on repeat. We can tell her “Everything is ok. Just stay positive.” over and over along with other encouraging statements. You can only talk until you are blue in the face. I will always be there for her but why do people seem to think that the world should revolve around them? Why do they think they have get attention by people feeling sorry for them? It is really hard to want to be around them, unless maybe it is just me being selfish. I have no clue why sometimes it makes me mad when she continues to do this.
Sometimes it is best to try to turn the conversation around to something totally different that way you stay calm along with the other person. I have been doing that lately and it seems to help me calm down and not get angry with the situation.
I do not talk about my grandmother very often because it is hard to think about all the good times without remembering she is no longer here with me. She was the most incredible women; loved all of her grandchildren and spoiled us to the core. My whole life changed on August 11 2007 and I will never forget that day. I felt like my world was over, my heart had been ripped out of my chest, I could not breathe nor could I move. She was suppose to come home that day but never made it off the opp-orating table.
Every time I look at her picture I smiling knowing she is looking down on us from heaven but it also brings tears remembering her. It only seems like yesterday that we were sitting in the living room watching our favorite movie Seven Brides for Seven Brothers. She would be laying on the couch combing her salt and pepper color hair, cigarette lite in the ashtray, while I am in the recliner eating popcorn. We would always watch movies and catch each other staring at the fish tanks sometimes. She would keep zebra cakes or other sweets in the kitchen and every night we would eat one before we went to lay down.
Every year on my birthday I still wish she would call me. Every birthday around 6 am she would call and sing happy birthday to all of us I can still hear her singing it that one last time. She had the most beautiful voice and smile ever. I miss her more and more every day. I especially miss talking to her because no matter how many times we done things wrong she would never judge us and love us no matter what. We would make her mad at times but that’s what grandchildren do.
Her house always smelled like smoke because she was a chain smoker but now I find myself missing that smell and when I do smell smoke I think of her sometimes. It still hurts today as much as it did the day she left us. I know she is in a much better place looking down on us but I miss her hugs everything about her. I have talked to her while looking in the sky; I know she can hear me and I know she misses us also but nothing seems to ease the pain of her being gone. I loved her so much and never thought I would be without her. I wish I could go to heaven and talk to her and be with her all the time but I understand it is not my time to see her and one day I will. I just want to be able to tell her I love her and do things that we use to do together. I do not understand why God had to take her when he did. Why did it have to be her that day? Why couldn’t I have had more time with her?
I am sorry to my readers that I have been unavailable for a little while. As I previously wrote about my experience with my medical conditions; things have taken a turn so I have been unable to write. Now I find myself full of things on my mind but when I speak of them all I can do is shed tear after tear. No one understands what I am going through however my boyfriend is honestly the most incredible man who will hold me and help me through this long journey. I have another appointment next week so we will see what the Doctor has to say after this but it is hard to look at the bright side of things when all I have is disappointment when I look in the mirror.
I have been in so much pain and the swelling has gotten worse over the past few weeks. I now have a rather large spot on my leg that looks like someone burnt me and beat me. It showed up about a week ago but at that time it only looked like a rash then it kept getting worse. I know my condition causes my skin to do some rather weird things so to say but when I look down at my legs, my arms, or even in the mirror I just want to cry. Sometimes I feel running away would solve everything or never waking up but I know I would hurt many people so I could never do either of those things.
My hands hurt so bad that even picking up a pen to write a short letter or cut my boyfriends finger nails have become a challenge. My hands shake so bad that holding anything has even become a challenge. I drop smaller objects that I try to hold on to and larger objects are even more difficult. I am to the point that my life feels like it is over. Why? Why did all of this happen to me? I could never be mad at God because I know he gives us the path he knows we can handle but sometimes I wish he could lead me down another path to help figure out this one I am on now.
A child is a blessing from God that should be loved and protected. Some people are unable to be blessed with having a child and others continue to have them even if they do not want them. Thankfully many people adopt or foster them to give them a loving home and family they deserve. No one should ever take being able to have a child for granted.
My boyfriend and I are one of the only ones of our friends who do not have children. Right now it is not in the cards for us due to health reasons and we have other goals to accomplish before we bring another human being into the world. We believe in planning and trying to make sure we are able to care for this child and give him/her everything they need. It hurts us sometimes when we see others enjoying their children and having someone call you mom and dad. We know one day we will be blessed even if we can not physically have one of our own we have decided we will adopt. There are always children who need a home.
However, on the other hand we also see people every day who continue to have children and never take care of them, pawn them off on family and friends, or give them up for adoption because they want to have their freedom. Really? You should think about all of that before you have children. Yes they change your life but that does not mean your life has to end. To me if upsets me when I see people who have them just to have them but never spend time with their children.
I have a friend who is having a children with a younger guy and she believed if she had a child with him that he would stay forever; well he did not do that. She hasn’t even had the baby yet but through the whole relationship they were on and off; she would leave or he would kick her out. Not a stable home at all for a child. She did not plan for this baby, has nothing for her not even a pack of diapers and is only two weeks away from being due. She can not even take care of herself let alone a baby; guys and her body are more important then making sure she takes care of this baby. Why? How can people honestly think it is ok to be like this?
Remember just because you have a child with someone does not mean they will stay with you. Also do not have children if you do not want them or are willing to put them before anything and anyone in your life. I can honestly say my boyfriend is very understanding and supportive when it comes to our views on having a family. One day God will bless us with the best gift of all.
P.S. For now my boyfriend agreed to get me a fur baby!!! Can’t wait to show everyone.
I have to force myself to get up everyday, motivate myself to take one more breathe. Every day I see people who run, jump, live a normal life, have a family and children; me, I am waking up everyday thankful the Lord gave me another day. Unless you have been in my shoes you do not understand how living with a chronic illness can effect you. Fighting each day for pain to ease, being able to have a normal life. I was diagnosed with Scleroderma, Fibermyalgia, and R.A. when I was 21 years old. Just when your life should begin mine was taken from me.
I had the perfect figure, did sports in school, always going and doing with my friends; then I graduated started becoming an adult when all of a sudden my world turned upside down. I started gaining weight and the pain was something I had never felt before. No one understood, no one could figure it out. Doctor after doctor, test after test, nothing until one day a doctor walked in and saved my life. Unfortunately when he verified what illness I had he let me know it was nothing to take lightly to. It was an autoimmune that could not be cured. We could slow symptoms down as best we could but I would have flares and this would be my life.
For five years I have been in chronic pain swelling daily and not being able to work or function to have a normal or even half way normal life. I found someone who loves me for me and that was the best feeling but even though he supports me he never understands how it changed me. I have had to take chemo injections and I am continuously on pain medication just to get through the day. The past few months things have gotten really bad and it makes it hard to even get out of bed or want to wake up. I became very depressed and confused.
However sometimes all of that does not hurt nearly as bad at the looks people give me and the judgement. Unless you are willing to research to even try to understand you have no right to do any of that. You do not realize how a small glance at someone can hurt so bad or how a few words can feel like a knife. I live every day with this, I have to think twice about being outside because it burns and hurt extremely bad, I have to think twice before I can go anywhere or be around people because I get sick easily. So before you judge walk a mile in my shoes then your picture perfect life will no longer be; you will have a picture of pain with an understanding.
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.