Back in Black: I’m Blogging Again

Hey everyone! First, I want to take a moment to apologize if you receive a ton of emails from me (as a blog subscriber) in the next few weeks. Apparently, every time I update an old blog post, it goes out again as a new blog post. I don’t manage the subscription service, so I have no idea how to prevent all of you from getting a ton of emails in the next few weeks. I will look into this, and see if there is anything I can do, since I don’t want to flood anyone’s inbox. In the meantime, I’ll keep my old blog post editing down to under 20 a day.

Also, I wanted to tell you that after a long absence in the blog world, I am back to blogging. I can’t explain publically why I was gone, and why my blog was so weird-looking, but just know there was a good reason for it, and I return with a heavy heart. I’m ok–not dying or anything, lol. Just know that life has been hard for me lately, as it is for so many people.

And, for those folks who are into reading about my health, I have been officially diagnosed (by an optic neurologist and a MG specialist) with another rare autoimmune disease, called MG, or Myasthenia Gravis. It affects everything from my vision, the use of my hands, arms and legs, to my breathing–as it interferes with the use of my voluntary muscles. I’ve been experiencing muscular weakness for so long, it makes me sad that I wasn’t diagnosed with this earlier, even though I kept hinting the disease to my physical therapists all summer long.

The funny thing about this diagnosis is that I figured out I had it two years ago, but I was scared to ask a doctor to check for me for it, because I didn’t want to sound nuts. Last fall, I asked my doctor to send me to a psychiatrist, just in case I was actually mentally ill, and didn’t have the disease. I had to beg my doctor to send me to a shrink, because he didn’t think I needed to go–and thankfully, the psychiatrist didn’t think I was mentally ill, either (well, he diagnosed me with ADHD, which is technically a mental illness, but you know what I mean), leaving me with the courage to share my suspicion about MG with my eye doctor.

I had been having double vision for nine months straight this time, and my eye has been drooping off and on for several years, so I mentioned my symptoms and brought up the possibility of MG. The great thing was that my eye doctor said Myasthenia Gravis at the same time as I did, and he told me that he never believed what the U-M eye specialist said–which really made my day, as I appreciated his honesty. That doctor, who barely examined me, thought the problem was just caused by stress, and since I had just lost a job, I believed him. My regular eye doctor, who is a great doctor, took me very seriously when I told him I thought I was actually crazy and even got a psych evaluation to make sure stress wasn’t just causing my visual symptoms. He sent me to a great optic neurologist this time, who did four hours of vision tests on me, many of which no one has ever done on me. My eye doctor also sent me to a MG specialist, who is a regular neurologist, and she did a number of tests I’ve never had done on me, either, including the darn blood work that proves I have the disease. I can’t tell you what a huge relief this diagnosis is–especially when I read that 70% of people die during the first three years they have it, since it generally takes years to get diagnosed. I went two and a half years–so, if I had not spoke up, the next time I got pneumonia could have been the time that I died from it.

All of this medical drama makes me sad, because it makes me think about all of the other people out there who have something wrong with them, yet they have doctors who don’t believe anything is actually wrong with them. I’ve heard stories by people who were basically verbally abused by their doctors, just because their doctor couldn’t figure out what was wrong with them, so they blamed mental illness, rather than working harder and running more tests. I’ve had people confide in me that even their own parents thought they were crazy, rather than sick, and it is breaks my heart.

If you have went through a medical drama, my advice to you is this: ask to see a psychiatrist, even if you can’t afford it. Tell that psychiatrist why you are there–that you think you are nuts because you are ill and no one can figure out why. When they find nothing wrong, you can go back to your doctor and prove nothing is wrong with you mentally, forcing them to finally help you get the diagnosis you need, so you can start feeling better.