Chronic Diseases: Worries and Dreams

I have two chronic diseases, both of them autoimmune diseases, which I have previously spoken about here on my blog: ulcerative colitis and psoriasis. I try to stay positive, especially since I am a young person and still have my whole life ahead of me, but there are still worries. Even though my treatments for both diseases are going well and keeping them under control, the diseases are still there in my body since cures for them do not exist yet and this of course causes concerns. There are both good sides and bad sides to these diseases and I have been thinking about them a lot recently and thought that I would share them here. I have split them up into the categories of "worries" and "dreams" since the bad parts that I have been thinking of lately are more like worries due to the fact that my diseases are under control right now and I have my personal dreams of what I can do as a person with these diseases.

Worries:
Having two autoimmune diseases makes me worry about what comes next. I worry about my future health. I worry about my future body. What will my body be like as I grow older and eventually reach an old age when people normally start getting a lot of health problems if I already have chronic diseases as a young person? What will my diseases that I already have be like? What other issues will these diseases possibly cause in the future? I already got a second autoimmune disease, possibly from already having one. What other autoimmune diseases might I get? Also, what about my mental health? My diseases that I already have have affected my anxiety a lot. How will they further affect my anxiety and how else might they affect other aspects of my mental health? Then, of course, there is the fact that I am stressing out about all of this and stress can make my health worse and that causes me to stress out about the fact that I am stressing out too much. I just have to take things one step at a time and not worry about what has not happened yet.

Dreams:
I was not raised with religion and do not really follow a sole religion, although I do consider myself to be spiritual, but I believe that things happen for a reason, not necessarily caused by a higher being,  and so I must have these diseases for a reason. That sounds mean since awful things that people do not deserve happen to them and it sounds terrible to say that those things happened for  reason but it is one way that I personally cope with having chronic diseases. Maybe I have them so that they can teach me something. These diseases have definitely made me more accepting of others who have health issues. I have also learned a lot more about health and wellness, medical issues, medications, the health system, etc. because of these diseases. They have also made me rethink my life, focusing on my health a lot more and turning me into a more positive person. I am more aware of my body now and try to pay more attention to my mental health. Maybe I have them so that I can help others with diseases, educate people about chronic diseases or raise awareness about them, or so that I can inspire other people by showing them that you can have a great life even if you have chronic diseases. Maybe I was needed in order to do one of these things and the best way for me to accomplish this was by having these diseases. Having these diseases has made me stronger and they have pushed me even more when it comes to wanting to achieve my hopes and dreams. When you feel like you have hit a low point, you have to just think that now there is nowhere to go but up. Even though I continue to go through health issues and have not necessarily hit the bottom, I keep the "nowhere to go but up" mentality and use all of the bad stuff that has happened as fuel for accomplishing my goals. As someone with Finnish ancestry, I also keep sisu in mind. Sisu is a Finnish word that us Finns live by and it is basically the act of continuing on even when you feel like you have come to the end. My dreams are of using these diseases to help me and other people rather than bring me down.

It is unfortunate that I have these diseases, especially as a young person, but they are a part of me rather than being who I am. I am not the diseases. I am me. I just have these diseases and have to deal with them and everything that they bring with them. They are a part of my life and they can be a part of why I accomplish my dreams. I just have to deal with them right and let them take me on the journey that they have been "given" to me for.

Cheers,
Kaylie

Psoriasis: My Second Autoimmune Disease

Last year, something weird started happening to my scalp. It was as though dry skin was layering up and it was peeling and eventually started getting gooey. It was gross and uncomfortable. My mom said it was probably something called cradle cap. It kept getting worse and then I started getting more skin issues. The skin behind my ear was getting similar to my scalp and the skin on my face was getting really dry and flaky. I remember one point where it was so uncomfortable that keeping my eyes open was exhausting. It did not look good.

In the Fall, when it just seemed to be getting worse and worse, I finally went to my family doctor and she thought that it was a fungal infection. I had several doctor's appointments over the Fall and Winter months, trying several different topicals (medicated creams and ointments), a few different oral medications, and a fungal shampoo. Some of the topicals seemed to help a bit, especially on my face, but my skin was still getting worse. I was getting red itchy spots on my arms and chest and my back was getting red and dry. At first I thought that the spots were just hives since they kind of looked like them at first but then they would change to bigger spots of layered, flaky red skin. They looked terrible, especially after getting wet. My skin issues seemed to just be continuing to spread.

My family doctor decided that it was time to refer me to a dermatologist since it was getting worse and there wasn't much more that she could do for me. We had to figure out what was going on and, for that, we needed a specialist. I ended up getting referred to a very nice dermatologist and she thought that it was also a fungal infection. She said that several things could cause a fungal infection and that we needed to figure out what was causing it in order to prescribe the right medication. She took a biopsy of my scalp since that was the worst skin and the origin of the skin issues. I was a bit nervous for the biopsy but it wasn't so bad. The dermatologist applied freezing to the area with a needle and then cut out a small chunk of my scalp down to just the fat tissue. She then stitched up the skin with a single stitch. This was my first time ever getting stitches.

When the results of the biopsy came back, it showed something different than a fungal infection. The result was psoriasis. Psoriasis is an autoimmune disease that causes the skin cells to not stop growing, resulting in dry layered patches of skin. I was disappointed but not surprised. A great-aunt on my dad's side of the family and a great-grandmother on my mom's side of the family both had psoriasis. Also, I already have another autoimmune disease: ulcerative colitis. The biologic drug that I am on for my ulcerative colitis, Remicade, is used to treat psoriasis as well but, in some cases, it can make it worse. I seem to be one of those cases since I had several of my regular doses of Remicade during my psoriasis flare up and it didn't seem to help at all. Since I have severe ulcerative colitis and the Remicade works so well for it, the dermatologist didn't want me to have to switch to another biologic drug but it became an option for if the topicals that she would prescribe for my psoriasis didn't work. The topicals that she prescribed included a medicated gel for my scalp twice a day, an anti-inflammatory cream for my face twice a day, a medicated cream for my infected scalp and skin behind my ear twice a day, and a medicated foam for my body once a day. Now that my face and infected scalp and ear are better, I am only using the gel for my scalp and foam for my body. Thankfully the topicals have been working great so it looks like I don't have to switch to another biologic drug.

Other than that scare of possibly having to switch biologic drugs, since there would be no guarantee that other biologic drugs would work for me like Remicade does, psoriasis is really more annoying than anything. The skin becomes itchy and uncomfortable and makes you want to cover it all up so that no one sees it but at least psoriasis doesn't affect an internal organ like my ulcerative colitis does. However, the fact that psoriasis is an autoimmune disease concerns me since it is my second autoimmune disease and I just keep thinking "What next?" I need to stay positive though. Having chronic disease as a young person can really make a person feel down but I need to just keep going. I can't let it all stop me from achieving my dreams.

Cheers,
Kaylie