Redefining Disability Challenge – Post 2

Hey everyone. It’s time for me to answer a couple more questions for the redfng-disblty2Redefining Disability Challenge started by Rose B. Fischer. If you click on the image to the left, you can see exactly what it’s all about and feel free to join. Answer as many of the 52 questions as you like, or the ones that pertain to you. There is no time limit. Answer them in one post, one a day, a week, or whatever fits your needs.

As I mentioned in my first post for this challenge, I’m going to try spreading the questions out through the remainder of the year. If all goes well, I should have the questions all answered before Christmas. I’m answering questions two and three for today’s post.

2.  If you have a medical diagnosis, do you see yourself as having a disability? Why or why not? If you don’t have one, how do you view the concept of disability or the people in your life who have them?    Having survived both hemorrhagic and ischemic strokes, I suffer disabilities secondary to those incidents. I still have left-sided weakness and neuropathy. My gait is uneven, my reaction times are extremely slow, and it is difficult for me to turn my body from the left position. My left shoulder is becoming partially frozen again, even though I’m doing at home exercises in an attempt to keep my arm moving freely. Per my rehabilitation doctor, I will most likely have to continue professional physical therapy again for whatever amount of time Medicare will approve me for (If anyone knows of a good secondary health provider, please comment or email me.)  I also suffer chronic pain not only from the neuropathy, but pain from the fractures in my back and from time to time when my knee acts up it’s just one big cluster.

I’ve also been diagnosed with major depression and anxiety, especially after I found out that my employer was no longer going to approve any leave for me. At most, I may have needed another year and I believe I’d have been good to go, at least part-time, but they took it away from me. God does not like ugly. But I digress.

Those are ‘the biggies’. Other than that, I have a minor cholesterol and hypothyroidism issue that I’m working on with my primary care doctor. I will be scheduling my neurologist appointment next week so we can discuss my medications. Now that I’m no longer in such a stressful environment, I’m hoping we can work towards weaning me off some of the medications. (Keeping my fingers crossed.)

3. What have your experiences been with medical treatment and/or therapy been like? Do you have positive, negative, or mixed feelings about your experiences?    Treatments and therapies have DEFINITELY been a mixed bag as far as my experiences go. When I followed up for the first time with my neurosurgeon, I hobbled into his arms crying my thanks. He saved my life. End of story. He stroked my hair and started laughing, telling me I was his miracle and I was going to do well.

The neurologist? HATED HIM! He was arrogant and didn’t give a damn about anything I had to say, even though I never went into his office alone and thought I had an ‘advocate’ with me. Apparently not.

When I initially complained about how painful my left arm was and there was no movement whatsoever, he just looked at me and said, ‘You’re lucky to be alive. It’s a residual of the stroke. You’ll get used to it.” I was so angry and hurt and of course I couldn’t go off because if you’ve read any of my earlier postings or my About Me, I stutter and cry uncontrollably when distressed. This wasn’t even a year after the bleed, so you can imagine how bad I was. I couldn’t even find my words.

I couldn’t accept that answer, nor could anyone else close to me, especially my daughter. That’s when I found my Rehabilitation doctor who took the time to run tests and found out that I had a frozen shoulder! Why look at that… He immediately started me on physical therapy and ordered a specialized machine to be brought to my home for me to work my shoulder on.  My physical therapist, my rehabilitation doctor and my NEW neurologist are amazing. They take the time to listen and they do the right thing by me. Oh, and by the way – after only six weeks of physical therapy, no more frozen shoulder.

While going through treatment for the TTP, (while it was no picnic), my hematologist was the closest thing to an angel that I’ve ever met. Of all the doctors I’ve had, and still have, she and my neuro-psychologist Dr. D are my very favorite. They are both class acts and I think a lot of doctors could learn something about patient bedside manner from these two.

Until next post everyone…

 

Advertisements

6 thoughts on “Redefining Disability Challenge – Post 2

  1. Jo Wake

    I had a doctor like that a few years ago. He thought he was God. I thought he was a pig. A friend went to see him round about the same time and ended up in tears. Glad you found better people.

    Like

    1. My Miracle Life Post author

      I never really liked him Jo, but that visit was the last straw for me. I finally started taking my own health decisions into my own hands, even through the moments when I’d get confused, I knew that I wasn’t feeling that way just because of the stroke. We’re both glad I found better people. 😀 Thanks so much for stopping by. Hugs, Jo!!

      Like

  2. Jo Murphey

    Most doctors have a God complex until they come crashing down the Earth by me. Remember you pay these folks. They are your employees. You have the right to fire them and rehire somebody you like better. I never let them push me to the point of severe frustration or anger. There is an ideal fit out there , but you just have to find them.

    The fact that you lose some or all sensation due to a stroke doesn’t mean you don’t feel pain. Nerve pain is the worse. Whether it’s a toothache or post stroke, pain and discomfort are pain and discomfort. I have a standing prescription for Tramadol (Ultram) ordered as needed. I rarely take it but when I need it it’s there.

    Like

    1. My Miracle Life Post author

      I know Jo. I have Tramadol for breakthrough pain also. As soon as my old neurologist said those words, they were the final nails in his coffin. I found another, caring and genuine doctor shortly thereafter. As I’m sure you read, after PT, no more frozen shoulder. I just have to keep moving forward and continue to look for positive people in my life. Thanks so much for the visit. I always appreciate your input. Hugs. Eva

      Like

  3. Katie thecyborgmom

    Ugh! I hate doctors that treat us like lab rats! I guess they missed the “bedside manner” course in medical school. Unfortunately, at least in my experience, those doctors tend to be the best surgeons. They shouldn’t even let them speak…they should have an assistant who translates the medical jargon into common sense compassionate talk. The “you’ll get used to it” would translate to: “I’m sorry you’re in pain. This may just be a side effect that is now a part of your life. Do you have any thoughts on how to make it better? While I can’t think of anything to help with that right now, I will make a note and check up on it later…and will call you and let you know if I come up with any ideas.”. Doctors of the world…we are people! Not pieces of meat to cut into and write papers about!
    End of rant 🙂

    Liked by 1 person

    1. My Miracle Life Post author

      I can’t speak on whether he is a good surgeon or not, because thank GOD he wasn’t mine! I praise the heavens above that I had a wonderful neuro-surgeon perform my brain surgery when I was flown to Lehigh Valley. He will forever be my hero. Unfortunately, when I was ready for outpatient care, Dr. Y was the only one they were able to squeeze in a new patient for, and I got stuck with him.

      Make no mistake, I dropped him like a bad habit after the whole “lucky to be alive” and “get used to blah, blah, blah pain and side effects of your stroke” debacle. Um, no.

      One of the other bloggers I follow, Amy, is a physical therapist who also suffered a stroke doesn’t even trust western doctors anymore; I can’t even say I blame her. I’m trying her route and adding a bit of meditation to my routine whenever I can. It can only help!

      Many hugs to you my love!! Hope your pain is minimal these days. I’ve been kind of out of it the past couple of weeks, so my visits have been limited. I’ll be checking in with you soon! Xoxoxo. Eva

      Like

Comments are closed.