The past few weeks have been filled with doctor's appointments and errands. I was in the Emergency Room about three weeks ago because my skin ulcers were so bad that the doctor's were worried about cellulitis and sepsis, which are serious infections. Sepsis is an infection of the blood. I was given an injection of 40mg of steroids and some pain meds. I was sent home with oral steroids to take for the next two weeks....I may have mentioned some of this in a previous post.
I just finished the steroids a few days ago. I had lost approximately 9 lbs from being on steroids the previous time. In just one week, I had gained all that back. 9 lbs. I was feeling so good and now I feel awful. When you get off steroids, you feel even worse because they mask everything and make you feel great. Now, I am getting a bad flare up, I am exhausted, have severe anxiety, and pain.....Most of this from the steroids. I am STARVING all the time, which is another side effect of the steroids. It's awful!!! I am psychologically dealing with the issues associated with my fluctuating weight. To say that is difficult, especially being a woman, is an understatement.
I also got a flu shot a couple weeks ago. I started Imuran, which is an immunosuppressant. The main side effect of this medication is an increased susceptibility to infection. So that makes it difficult because I have to limit the places I go or the people I come into contact with. My doctors stress how important it is that my family and close friends get a flu shot so I can limit the potential for infection. If I were to get sick with something, I would undoubtedly be hospitalized.
I have been sleeping more during the night, which is great! Typically I sleep during the day and am awake all day. The stress associated with an abnormal sleep cycle causes a propesity for an exacerbation of symptoms. Additionally, while I am asleep during the day, people are functioning out in the world. Working, running errands, engaging in social activities with friends and family, etc. My maladaptive sleep cycle creates not only physical symptoms, but it also limits me from engaging in appropriate social interactions with others. This isolation prevents me from coping adequately with the myriad stressors associated with chronic illness and chronic pain. Social support is important for anyone, but especially individuals suffering from medical and psychological diagnoses.
Despite the ongoing pain and medical issues, I am staying strong and positive psychologically. I have been in a good mood for the majority of past few weeks. I have been reaching out to others and talking with friends on the phone. I have been trying to keep busy and helping my mother with things. I am attempting to remain hopeful that the medication I am on will be effective and will send me into remission. I will be keeping you all updated!
Thanks for reading. Please feel free to comment on any of my posts. Also, if you are suffering from any kind of illness, whether it be medical/physical or a psychological diagnosis, please PLEASE feel comfortable sharing your story. I think it is important to speak out and create connections. This is one of the main reasons I created this blog. Speaking out opens doors and creates the opportunity to be heard. Being heard validates one's feelings and experiences, allowing the individual to internalize feelings of self worth.
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