hospital again

I am once again admitted to the hospital. it is because of the swallowing problem. i feel really frustrated because im so hungry and cant swallow. i really hope they can help me. my  family and friends are the most amazing people ever. they are helping me keep my spirits up.its so nice to have a good support network.

Still not swallowing

Four days after my reaction and I still cant swallow. It  is so obnoxious because im friggin starving. I havent eaten much more than a little bit of baby food and soggy mashed potatoes. Im obviously dehydrated because Im ¨pale and dry¨ according to the pediatrician I saw. She recommends I go back to the hospital so I can be treated there. I am unsure whether I want to go or not. Everytime I go to the hospital its so aggravating.
 Despite this I attended a physical therapy session today. It was a good session, I worked hard leaving my muscles sore. We did e stim (electrical stimulation) today on my right leg to see if we could get the muscle to react a bit. It will take a while before we know if anything improves from the e stim.

Long day

Yesterday started like every other friday. Fridays are when I get my IVIG treatment. I was upset about it because treatments take a huge toll on my body but I wasnt worried. The treatment began as usual. Start with a dose of anti nausea medication, then a shot of steroid and then the IVIG starts to be infused. This is when things were not so normal. My nurse asked me if I was feeling ok. I looked at him and told him I felt kinda funny in my throat and my face. He told me to tell him if I feel anything else unusual. The treatment continued on and moments later my face swelled up and my throat was more swollen. The treatment was stopped and I was administered IV benadryl. Next thing I knew I could barely breathe at all. I was really scared. The nurse then gave me an epi shot and 911 was called. My body was beginning to turn blue. When the Emergency squad arrived they put on an oxygen face mask and I was off to the hospital.
I was in the hospital about 10 hours. While at the hospital I kept getting shots of benadryl and a steroid drip trying to keep my airway open. The doctors diagnosed it as Anaphylaxis.

Physical Therapy ...first day back

Today I went back to physical therapy for the first time since I ended school. We did an evaluation today to assess what kind of shape my muscles are in. The good news is, my left leg gained some strength. The bad news is my right leg is worse.The contraction that was there, is now barely there. There is no voluntary movement of it, only palpable contractions and spazms. My therapist says its too early to give a prognosis so Id have to wait to see if I have a chance at regaining movement completely.

5/30/12

Today has been a pretty rough day for me.  The hot humid rainy weather makes it awful on my joints. Last night was a patch change night. The pain was horrible. It felt as if my limbs were being torn off my body. Distractions are always good. It helps to help you not think about the pain. Although the pain is physically killing you, if you dont put all your attention on it, it makes it easier to cope. Thats how I get through the really hard days. I am getting really tired of my illness already. Especially the pain. I want to be able to enjoy being a young adult. I cant believe that five years of my life are just gone. That is time that I can never get back. Time I have spent being tortured like I never thought was possible. I can not wait until I am better and can regain my freedom.Until then, I will keep on fighting.

Skepticism

Living with lyme is so hard. Besides the physical hardships of the illness, many of us lyme patients have to deal with skeptics. Not just skeptics of you but skeptics of the illness itself existing. How are you supposed to get help if when you go to the hospital, the doctors there dont believe your illness even exists. Its the worst position to be in ever. Instead of getting help like any other patient would, we are stuck trying to convince medical professionals that we need help. It is extremely frustrating. I think it is time that the infectious disease society come up with better guidelines on lyme disease. So physicians can actually have a way of helping lyme patients. News flash, the three weeks of doxy is not sufficient. Maybe if Lyme was caught really early, but since the testing for the disease is not reliable, many  cases are caught too late. Its about time for a change.

May

I am finally done with school.  It gives me mixed feelings. I like being home but, its hard because the distraction school gave me is gone. I have visited the ER only once this month. It was a pain issue as usual. I plan on spending the majority of this summer working on my health. I really hope I can find something to help ease the pain. I also hope to become more mobile. I have a goal to study in Sweden Spring semester and I want to be mobile by then so I can go.