Trying To Stay Positive

Having a chronic illness that is as life changing as Myasthenia Gravis has given me a new perspective on life. When I first was diagnosed with it five years ago, I went from having a drooping eyelid to being pretty much bed bound within a matter of months. I had major surgery called a Thymectomy, where my Thymus gland was removed. It is like open heart surgery because the Thymus gland is in your chest area. The recovery was long and hard and I had complications during the surgery and recovery.

But within 3 1/2 years I was so much better that I was able to walk without a cane, stay awake and alert for about 8 – 10 hours, do more around the house and get back to taking care of my daughter again. I still had flares but they were short lived. I was diagnosed with other chronic illnesses but again but I kept a positive outlook and tried to remain as active as possible.

With this flare now I’ve been getting not only frustrated and angry but sad too. I feel like I’m going into a depression. I realized it when my PCP told me to just admit that I needed more medicine for the Myasthenia Gravis instead of fighting it. I realized that I didn’t want to accept that I might be going down the road of a bad flare and that I can’t say any longer that the MG is under control.

I found out yesterday that after my diet changes and my new medicine for the low potassium, that my blood test showed that the potassium level was even lower than before. I’m still in shock but feeling sorry for myself. I’m starting another new med tomorrow. I’ll need a blood test in two weeks to see if this works. I keep thinking the worst. I can’t stop feeling let down.

I know that this isn’t helping my health. But how do I get out of this funk? A nurse from my health insurance called me today. She’s my caseworker and calls every 3 months to check on me. She could tell that I was sounding depressed. She then asked me some questions. I was then told that a letter would be sent to my PCP because she was concerned about me. I guess I’ll have to go see the Psychiatrist.

Tomorrow is Peanut’s last day of school. I’m happy to have her home with me but I’m so afraid that I’ll be still sick and she’ll be fending for herself and bored because of it. We had so many plans to have fun. I know that we have the rest of the summer to do so.

Lady Ali got a job! I’m happy for her. Her phone calls have been keeping me cheered up. I try to not sound down when I talk to her. She calls me more now that when she was living in Florida. I love it. She asks me advice on things like her job interviews, what to do about car insurance and how to start planning her wedding.

I’m trying my best to keep focused on the positives. Thanks for letting me vent. I hope that I don’t bore you all to tears with my woes.

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Connie Roberts

Professional Blogger
Living in the Tampa Bay area, I'm lucky enough to see beautiful sunsets almost every day. Although life can be difficult at times, focusing on the positive and being with my family is what gets me through.

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  1. I’m so sorry you’re having so much difficulty right now. With my chronic illness, I seem to go through phases of denial, saddness, grief, and acceptance. I think I’m in the grief stage – grief from loosing the life I once had.

    What you’re feeling is totally normal. But I do agree with your case worker – see your PCP – you may need an antidepressant.

    Good luck to you and I’ll keep track of your progress through Twitter.


  2. I was diagnosed with MG in Feb 08. That was after having had respiratory difficulty that hospitalized me in Dec. 07. I am being attended by the VA. I don’t feel they have much concern for my condition. I had an exacerbation last week and systematically dismissed with antibiotics. It seems my thymus gland was normal on the CT scan, but my spleen and pancreas are enlarged and I have a “fatty liver.” Three days after that visit I was sent in to see the neurologist, a funny looking little Italian guy with a very thick accent whom I could barely understand. He was just as dismissive to me as the GP. All I could gather from him was something about a consult at the Mayo Clinic. Worse than that, the only question his nurse had for me was, “How much alcohol have you consumed in the past three days?” Anyone with half a brain knows a person with MG cannot drink alcohol. No medication changes were ordered and I’m getting weaker by the day. I did receive a letter in the mail stating they had set up a PFT in September. I hope I don’t stop breathing before then as they won’t have anything to test. Anyone else have such unconcerned “professionals” overseeing your care?