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You may remember the Kickstarter I spotlighted here a couple weeks back. Well, it’s going forward and Jenni needs some help! If you or someone you know might be interested in participating then please pass along the link and the invitation.  :}

Howdy, friends!

As I work on finishing my first draft, I keep running into the same issues, chapter after chapter: Not enough caregiver perspectives.

Caregivers include anyone who cares for a ChronicBabe: Spouses, partners, girlfriends, boyfriends, lovers, parents, children, grandparents, friends, co-workers, neighbors and many more.

These people experience the impacts and consequences of chronic illness alongside us ChronicBabes, and in my experience, their voices aren’t heard nearly enough. So I’ve decided to include some perspectives from caregivers, sprinkled throughout the book.

If you’re someone who loves a ChronicBabe, please consider participating. I’m gathering volunteers here, with a very simple form (it takes 2-3 minutes to complete). I hope to use folks’ full names, but if you prefer more anonymity, I can use just a first name.

If you’re a ChronicBabe yourself and know someone who might be interested, send them a link to this update — and a sentence or two about why it’s important that their voice be heard. Don’t fill out the form on their behalf. 

Questions? Concerns? Leave a comment and I’ll get back to you ASAP, or shoot me an email.

I’m excited to include such a diversity of perspectives in my upcoming book, and thankful to have such a supportive community.

XOXO, Jenni

Last night was our first meeting, and I barely made it. Friday I was in terrible pain at work. I slogged through what absolutely had to be done (classes started today, so I was publishing courses), then rescheduled or reassigned everything else. I went home and huddled in bed with a heating pad and slept for a few hours. Saturday was better but still heating-pad-centric. Sunday I picked up a low-grade fever. I can’t say for sure, but I think my cramps actually triggered a flare. One way or the other, I was run down, blah, and despite napping almost every day super tired.

I felt somewhat better Monday so I dragged myself into work. Thankfully, it wasn’t a bad start-of-term, and I was feeling better in the afternoon. We started the group by filling out a batch of paperwork, and then my rheumatologist gave some medical background on RA for the group. We all introduced ourselves and the group leaders explained the format. This all lasted about an hour and a half (they had snacks, which I appreciated- I nibbled on fruit) and then we were assigned our FitBits.

The group is small but a nice mix- I’ve considered group therapy before but usually the schedule didn’t work with mine. I admit to being a bit of an emotional wreck afterwards; it was a really long day. I charged my FitBit and installed the software, and will do the same at work so I can sync it during the day. It will take me a while to work out all the settings, but our goal for this week is just to wear it. I am very interested in the sleep tracking feature (we have the Flex) but was kind of glad I wasn’t wearing it last night since I was up every two hours.

I am really hoping for some positive gains from the group, if only to keep me focused and mindful. Exercise is my weak area right now, and I’ve been pretty dispirited with the GI issues. I will see my GI the first week in June, so I have a couple weeks to adjust to the new programme. I also have a bank holiday coming up, and it will be nice to have a long weekend with the hubby.

Mischief Managed

Today’s to-do list:

  • Forget to put on deodorant. Twice. (check)
  • Forget to bring in the empty water bottle from my car to refill it. Twice. (check)
  • Wander aimlessly up and down the aisles of my regular pharmacy long enough for the clerks to ask if I’m alright. (check)
  • Fail to find my missing backpack for the second day in a row. (check)
  • Know that I was going to do something and completely forgot what for a solid twenty minutes before I finally remember. (check)
  • Almost get distracted by something else that needs to be done, stay on track, AND remember to go back and do the other thing after. (check) Victory!!
  • Take two tries to correctly align the fresh batteries I bought at the pharmacy. Inordinately rejoice over success and inadvertently blind myself with the flashlight. (check)
  • Pat self on back for remembering to feed the animals and take all my meds, then realize I have not yet had dinner. (check)
  • Seriously question whether driving today was really such a good idea. (check)

(You need to register to vote, and you have to agree to some advertising but I thought it was for a good cause. I am not affiliated with the businesses or website in any way.)

National Mobility Awareness Month is dedicated to showing the world how people with disabilities can live active, mobile lifestyles.

The National Mobility Equipment Dealers Association and our over 600 members are committed to bringing people living with disabilities the mobility solutions they need to live Life Moving Forward. Each year, we enlist the help of our extensive NMEDA Dealer network and our industry partners and spokespeople to celebrate National Mobility Awareness Month. Together, we reach out to communities across the United States and Canada to raise awareness of handicap vans, trucks and specialty vehicles, hand controls and steering aids, transfer seats and seating solutions, wheelchair tie downs and other adaptive mobility equipment available and give Local Heroes the chance to win their very own Wheelchair Accessible Vehicle.

Visit NMEDA’s site for more information on our organization and the work we do to benefit the disability community.

Did you know?

  • Over 18 million people in the U.S. and Canada have mobility issues
  • People with disabilities constitute the largest minority group in the United States and the only group anyone can become a member of at anytime
  • One in five elderly have mobility issues
  • There are mobility equipment manufacturers, dealers and certified driver rehabilitation specialists in your community dedicated to improving the lives of people with disabilities
  • Automotive mobility solutions are available for people with disabilities, enabling them to enjoy active, mobile lifestyles

My new glasses were ready last week and I’ve been wearing them for a few days now. They’re progressives, so there’s no line in the lenses- if I don’t say that they’re bifocals there’s no way to tell. I’m adjusting to them pretty quickly- I had one day of headaches that may have been my eyes adjusting. I do have to get used to moving my head until I get the right focus; if I look at something out of the corner of my eye it appears blurry. I did catch myself peeking under the edge of my glasses, but I think it’s just a habit I’ll eventually break.

I am still smarting from the cost, though. My prescription isn’t cheap on a good day. Add in scratch-resistant lenses, anti-glare coating (necessary since I spend a lot of time staring at a computer screen), transitions for eye protection when I’m in direct sunlight (a nice feature since I live in a sunny clime and am light-sensitive), and now with the progressive prescription… it looks like my MRA card will cover it, but it means that I will max my card and the year isn’t half over yet. I’m also still waiting for test results, which is never fun. It feels like all my free time is dealing with medical paperwork lately.

I have to say I am SO happy to have these glasses, though. Wearing my old glasses for a week (I recycled my frames, which saved me a little) I forgot how bad they were. The prescription isn’t that far off, but both lenses were scratched and they aren’t transitions. They’ll go back to living in my car for emergencies, but hopefully I’ll never need to wear them again. The optometrist was really nice and set me up with a coupon (that I didn’t actually qualify for), and small rebate that I’ll put in the post tomorrow (less than 5% of the total cost). It is SO NICE to be able to read again, though!

I’ve been doing a lot of waiting lately.

Waiting for my medical reimbursement card to be reinstated. At least once a year there’s some sort of SNAFU that requires they put a hold on my card until it is sorted out. Since I have to FAX in my paperwork, occasionally it doesn’t go through. Once I knew what happened I re-faxed my paperwork, only for them to decline my claim. I then had to snail-mail a check to cover the balance. Of course, this happens just before a medical procedure and refilling my quarterly prescriptions, so I had to pay out-of-pocket and submit paperwork after the fact hoping that they’ll reimburse me. Thankfully, my card went live again in time for my prescriptions, but I’ll spend some time this afternoon filing the rest of the medical paperwork. *sigh*

Waiting for my new glasses. It’s really hard for me to read print right now, so I’ve been re-watching old M*A*S*H episodes in my down time. Hopefully I should get my bifocals this week. *crosses fingers*

Waiting for test results. See above medical procedure. A diagnosis is hanging on this, and I’d really like to have some idea where I’m going from here. Other prescriptions also hang on this dx. I’ll run out in two days and need to know if I need to request a refill or if they’re putting me on something else.

In good news, I successfully completed my online course and resulting in a certificate that will look good on my resume. I worked my butt off on this and I’m really proud of the results. I also feel more confident about continuing my education online and may look for another course in the fall.

I interviewed and have been accepted into a medical study for patients with Rheumatoid Arthritis to assess how physical therapy can help address chronic pain. It starts in May and I’ll meet with a support group weekly. I’ll post when I have more details- there are some things I might not be able to share due to confidentiality.

Now that the course is over I have some creative writing on the back burner I’d like to catch up on, although most of my creative juices have gone into making a fun character for the role-playing game running at our house on Saturdays. Still, it’s a fun goal.  :}

Signal-boosting for a good cause…

The Malawi Project was created in the year 2000 after two of its founders,Richard (Dick) and Diana (Suzi) Stephens of Indianapolis, Indiana had been serving in Malawi, Africa since 1993. During those years they experienced the intense need of its people. A vision was formed to create a conduit through which humanitarian aid could be funneled to a number of associate programs. This would not be a project that would imitate aid program endeavors of the past. It would be based on a different set of principles. In a practical sense the Malawi Project would be an incubator where new programs could be birthed, established programs could be nourished, then both given independence to grow and prosper. Today the Malawi Project serves the people of Malawi in every region of the nation.

Malawi Needs Medicine Bottles

We throw them away. They go to a landfill. After all, what can we use them for after the medicine is gone? It’s those empty medicine bottles. Still clean and new like the day they were born there should be something they can be used for.

There is! You can boil water and clean off the labels and glue and send them to Malawi. So often in the small rural hospitals medicine is dispensed into small torn pieces of newspaper for transportation to village homes. Then where to put them? Where will they be safe? Where will they be out of reach of children? Where will they stay clean?

Send your clean medicine bottles to:

Malawi Project
3314 Van Tassel Drive
Indianapolis, IN 46240

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