kitsy
"It's always hot and sticky during Carolina summers. I love walking my dog and gardening, but during the day I'm quickly overcome by fatigue. If I don't quickly get in the house for a cold drink or shower, the fatigue persists. Fatigue can lead to neuro pains during the night and sometimes I wake up with terrible leg pains. Weeds in the flowers make me sad, but they will have to wait. "
"I'm feeling very sad and somewhat misunderstood or marginalized. I used to love reading so much that as a child I read every book of interest in the school and public libraries. As an adult I started a lunch book club at work and one in the neighborhood along with a busy schedule, demanding job, family, and other interests. I can no longer read print, but I have two good sources of audio books so I started a new book club in my new neighborhood three years ago. We just selected our books for the next year, but people assumed if a book was on Audible it wouldn't be a problem for me. It is, I'm not a subscriber. I asked if we could start the year with books I have access to, but rather than accommodate me I got push back as to why not just join Audible. I feel that no one gets all of the extra work it takes to fit in as well as I do. I'm usually not a whiner, but I want to cry. I will give them a few days and if I'm not heard, I will talk to each of them. I'm confident it will work out in the end, but I hate that I have to put in extra work. The books are randomly assigned to months, We don't meet again until Sep. Why is this so hard? "
, ugh. I'm sorry. That would make me feeling pretty excluded, too. I LOVE LOVE LOVE reading and my childhood reading sounds much like yours. I also appreciate digital books and audio books, but they are not my first choice, so I get that as well. And I also don't have a subscription to Audible.
And, I think I understand your main point here. It's not so much the format of the books; it's the fact that it's just ONE MORE hoop you have to jump through to fit in. MS can make that so hard, because it's frequently an 'invisible' illness at first, so you may look fine, but on the inside, you are dealing with so many symptoms. And then, in an attempt to fit in, you have to work harder with may already be limited energy resources. And you know what? That's not fair.
I hope your fellow book club members have soft hearts and open ears when you are ready to talk to them. They probably truly didn't mean to exclude you (Heaven knows I have made similar mistakes over the years) and I hope they can take your words in the manner they intended and learn from them, without getting defensive. But, I get this is also MORE WORK for you. Having to educate people gets exhausting, doesn't it?
Well, I am so sorry for the novel I wrote here, but your post really touched a nerve with me.
I hope things turn out well!
Best, Erin, MultipleSclerosis.net Team Member.Dear Erin, After a couple of emails where my message still wasn't getting through. I called the current president of our club - as always she was in a hurry, which I believe is why she didn't understand my earlier emails. I told her I needed to talk and kept her on the phone, explained the issue and asked her to go back and read my last email. She agreed to make the changes I requested. I felt like I held a gun to her head, but if that's what it took then so be it. You're right it was exhausting and I feel drained this evening! Thanks so much for your empathy and understanding. k , I am so glad you go the issue resolved, but I understand it was yet another unnecessary drain on your energy!
Best, Erin, MultipleSclerosis.net Team Member.
"OK. I just answered the poll about lumbar puncture. I had three because I couldn't have an MRI. All were inconclusive. Thankfully Johns Hopkins developed a method is which I could have an MRI and I finally got a diagnosis."
Kitsy,
this was interesting. Would you mind sharing how they were able to give you an
MRI when they couldn't do one on you before?
It could be helpful to others. I've heard of others who for them, an MRI was out of the question for various reasons.
Thanks for posting this.
All the very best! JanusThanks for participating in the poll! I’m glad you were finally able to get some answers and a diagnosis! Best, Christina, MultipleSclerosis.net Team
I just saw this and I guess I never replied before. I received a pacemaker due to third degree bradycardia - when nerves fail to tell your heart to beat. I'd be walking and suddenly collapse. I actually even rationalized this a few times saying wow I must really be overly tired. The pacemaker prohibited the MRI. Luckily new pacemakers aren't a problem, but there must be a cardiologist on standby when I get my MRI. They also adjust the PM to a crazy fast beat, which is uncomfortable.
"I'm okay"