I am twenty-one, and a full time student. I was doing really well, but now I am so far behind in my classes I do not know how I am going to catch up. I spend so much time trying to find the point of continuing to study to be a geologist when I cannot go out into the field because of the Raynaud's. But I know I cannot give up, because if I do, this will beat me.
I was diagnosed with systemic sclerosis, CREST (Raynaud's, esophageal dysfunction) just over a month ago, but I do not know if it is the limited or diffuse type yet. I am so scared that it will be diffuse. I do not want to die. It is not fair. I used to get upset when I had to leave class because I was so cold and needed to warm myself up. I used to get upset when I could not go to class because I had a migraine that no pain killers could relieve. Now I just get angry. Really Angry! Angry because it reminds me I have this stupid disease and I do not think it is fair. I am not a bad person; I did not do anything to deserve this.
I suffer with Raynaud's, which also causes me to have intense migraines (according to the neurologist I recently saw) as my brain is not getting enough blood. My body aches, my joints hurt. My kidneys and urinary tract have been constantly infected for the past two years, even though I am careful to do everything I can to avoid infection. I have been on antibiotics every day for the past two years to keep the infection at bay so I can lead a 'normal' life.
Two years ago a urologist told me that my body just cannot seem to kick the infection. I suppose that was a bit odd considering it is not a particularly bad infection, and I would think this should have been a bit of a sign to any doctor, but apparently not. My gums have started to bleed a lot and I suffer bad breath. But I have no cavities and practice good oral hygiene. I brush two times a day, floss daily and use mouthwash. Kids can be so cruel. When I was thirteen, someone said to me, "Your skin looks like leather," and at least that makes sense now.
I am frustrated at the specialist. He just said, "You have scleroderma. We will run some more tests." As if I was meant to know what scleroderma was. I have done my research and I do not like what I see.
I have so many questions that I need answers for. I want to know if the discolored patches on my thigh and hips are related. I want to know if the fact that I get urinary tract infections all the time is related. I want to know what this means. I want some damn answers because it is doing my head in at the moment. I want to know what type I have. I want someone to understand my frustration.
I am so frustrated and it really feels like no one understands me. My boyfriend recently said to me, "There is more to life than thinking you are sick all the time." Thinking! Thinking! I have just been diagnosed with systemic sclerosis and CREST and he still acts as if this is all in my head. So much for his "no matter what happens I'll be here every step of the way." He does not even acknowledge that this is REAL.
My mom said I cannot let this get me down. Well, I am doing my best. I am still attempting to finish my degree. I have been accepted into Honors next year so I am really trying. I know a lot of people would have dropped out if they found themselves in this position. I am still trying to be an aunty to my nephew. I am still trying to be a girlfriend. I AM STILL TRYING. But it is so hard some days. Like today. Just so hard.
And so scary. And I feel so alone.
~ Update 09-29-05 ~
Wow, that was a bad day! Now that I am thinking more clearly, I feel the need to update my last post, although every word I've written above is true. That's exactly how I felt and still sometimes do feel. I know scleroderma attacks our physical beings, but more importantly, it has such a bearing on our emotions. And I think it's those emotions that make us have the good and bad days. This is a lot to deal with. But that's okay—having a bad day is okay.
I have come to the conclusion that this can only beat me if I let it. If I have a positive attitude. I can and will pull through this and lead a relatively normal life. I know it will be okay, and if it isn't, I know I will have the strength to get through it at the time. As will you.
About three months ago I made a decision that has affected every aspect of my life: I chose to live. Prior to making this decision, I had been having a particularly bad time in dealing with the scleroderma diagnosis and what it could mean for my life. I was so confused and caught up in the battle that raged inside my head; to continue to fight or to give up. I was emotionally exhausted, physically drained and almost ready to surrender, when I heard a song on the radio, Be Strong by Delta Goodrem. The song reduced me to tears; I felt she was singing just to me as it was just what I needed to hear at the time.
It was not at that moment that I decided to live, but that was the turning point for me. I decided to continue the fight. Not long after, I made a conscious decision to live. This disease may eventually cripple my body, but it cannot and will not take my heart, mind and spirit. I decided to live my life as I had previously planned because at the moment, I am not that sick and I will deal with the sickness if and when it comes.
Scleroderma does affect me everyday with Raynaud's, fatigue and general joint pain. I have had to wear a wrist splint for the past three months. But scleroderma has not stopped me and I will not let it.
When I first posted on sclero.org, I did not know whether to continue my studies or not. Well, I did it! I pushed myself through it, and I fought for what I wanted in life. I got my BSc in Geology and I managed to finish as one of the top students in my class. I am currently completing my Honors. As for working on a mine site as a geologist, I just finished a five week stint of fieldwork (for my research) on a mine site. At first I was worried about how scleroderma (especially Raynaud's) would affect me in such harsh environments, but I was okay! It was hard. Working for twelve hours a day really took its toll on my body and when I needed to, I took half a day off to recuperate. But the main thing is, I did it. And I am very proud of myself for that.
I have decided to give myself praise for the little achievements I make along the way to ultimately reaching my final goals. It is so important for us to do that. I try to break the situation down and realize what I have done instead of focusing on what I cannot do. It is amazign the strength it gives me in dealing with rough situations.
I know I do not know any of you personally, but I do have some idea of what you are going through. For waking up everyday, and fighting for answers, and pushing through the activities of daily life, despite the pain and suffering you may be feeling, for that, and everything else you do, I am proud of you! And I am proud to be able to share my thoughts, feelings and experiences with people of such courage, bravery and hope.
I wanted to post this update to let you know we do have a choice. Chosing to live is the best decision we can make.
It has been only a month since I last put in an update and my situation has drastically changed. I am in the midst of a flare. I am so scared of having to wake up everyday feeling like I have been hit by a bus. I am so scared of being in this much pain all the time. I am so scared and upset and angry. I hate that it got this bad just from doing my field work for my honours. It came out of remission just from field work. I did not think I was pushing it that hard, I knew I was pushing myself a bit, but not this bad.
I have been feeling sore for a while so I went to discuss the possibility of a short extension for my honours with the honours coordinator at my university. He implied that I was making excuses to "cop out" and not have to work as hard on my honours. A few days later I had an appointment with my rheumatologist who said I already overdid it, and need a two to three month extension as it is. If I do not slow down I will hurt myself permanently.
I hate that I cannot be like other people. If the university does not grant me the extension, I will have to withdraw from the course. What choice do I have? I cannot push myself this hard anymore. I have to slow down; if I do not slow down, I will end up doing permanent damage. I did not think it was this bad. I thought maybe a two week extension, not two to three months.
I feel like such a failure. I feel like I cannot even get through my honours' year like every other normal person.
They do not understand the pain and debilitating fatigue. They do not understand the emotions. They do not understand the fear of knowing it is going to hurt for a while. They do not understand the fear of not knowing when or if it will go away. They do not understand the fear that this will get worse. They do not understand the fear of being alone because no one else understands either. They do not understand, yet they judge me and say I am going through nothing and act like this is nothing. To them, this is nothing. To me, this is real.
I cannot stop crying right now. This is such a shock. I knew I had the disease sitting there, and I knew it could flare up, but it is so much different when it actually happens. I have been feeling worn out and exhausted for a while now, and the little voice in my head began to listen to my body saying "slow down". So I started to organise this by seeing the honours coordinator about an extension, and went to see my specialists for doctors' notes. But I guess I did not listen to my body soon enough and along comes the startling realization; I did this to myself.
But I still choose to live. I am going to slow down. University will give me the extension, in such circumstances what other choice do they have? Although I am really angry and upset at the moment, I am still choosing to live. I just have to change the way I am living. Please, everyone, listen to your body when it is trying to tell you something. Do not ignore the pain because then it gets worse. I choose to live. I want to live. As much as I am hurting right now, I think I can live with scleroderma.
Email: Withheld by Request
Story edited 09-24-05 JTD
Story posted 09-28-05 SLE
Story updated 09-29-05 SLE
Story updated 08-22-06 SLE
Story updated 08-23-06 SLE
Story Artist: Ione Bridgman
Story Editor: Judith Devlin
Types of Scleroderma
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ISN Artist Ione Bridgman created original artwork to illustrate this page. She is 90 years old, and lives in New Zealand. Her lovely paintings illustrate many of our pages and the covers of our Voices of Scleroderma Book Series.
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