I am trying very hard to make updating here a regular part of my schedule. It can be tough to do, especially when there is no real news. After all my GI tests came back negative I was a bit at a loss. In general, I have IBS-D (no big surprise there). I am officially on a lactose-free diet for pretty much ever. It has been an easier transition than I expected, although I really miss cheese. I’m still doing daily probiotics and metamucil and take meds for it three times a day. I’ve figured out a few of my triggers. The next step is working with a nutritionist to establish an adapted FODMAP diet but I’m dragging my feet a bit… I’ve been doing better and I’m a little overwhelmed- I may wait until after the medical study I’m participating in wraps up next week.
The study has been going well, even if I’m struggling to meet my self-established goals. The support structure is a huge help, and having more tools in my treatment repertoire is a good thing. I saw my rheumatologist today and have a script for a new TENS unit (since my old one bit the dust). I’ll be swinging by a medical supply store soon- I don’t use it often, but it is really, really helpful to have when I need it. I have also been reminded how useful icing is. I really don’t like the cold (it makes my everything ache), but it really does help certain kinds of pain. The PT for the study also lined me up with some good exercises for my knee (I twisted it two weeks ago and I’m still getting back up to speed).
I’m still using the FitBit and will write a formal review when the study is over. I haven’t been doing great with tracking my food, but being able to record and evaluate my sleep patterns is really useful (I just have to remember to turn the sleep tracker setting on and off- I sometimes have trouble getting it to switch programs). I haven’t lost much weight, but I haven’t gained any and can tighten my belt a notch and slip my wedding ring off easily again (when my hands aren’t swollen), which are both welcome progress markers. :}
Hubby and I talked it over and decided that this isn’t a good time to buy a new house and we’re putting the hunt on hold. I am disappointed but also relieved- we’ll still be buying a house and moving eventually, but the timing just isn’t right at the moment. Hubby and the cats are keeping me sane, and I’m looking forward to the Independence Day weekend (even if I know my sleep will suck thanks to fireworks every night). I am still enjoying learning how to care for my betta fish (named Fish, because, seriously, I can NOT think of a name for him). After a bumpy start he’s doing well and we love giving him bloodworm treats- he’s so FIERCE!
Back to the subject of this post- my doctor is moving to a new location. I really like working with her, but the new office is not at all convenient, so I’ll be staying with my current practice and have been assigned to their new rheumatologist. I’ll really miss working with her and I’m a little sad but completely understand (her new practice will be closer to home for her). Overall, my pain is down and while I’m still frequently tired, I’m not fatigued (which is a huge improvement). My bloodwork still isn’t where we would like it to be, but at this point I’d be going back on oral chemo and I’m really hoping to not do that. I have three months before I meet with the new doc and we’ll she how my rates are then. *fingers crossed*
Posted in Chronic Pain, Fibromyalgia, FitBit, Insomnia, Lactose Intolerance, Medical Research, Osteoarthritis, Rheumatoid Arthritis, Spoonie Life | Leave a Comment »
Sometimes even the best intentions can backfire on you.
I left work a little early for my GI appointment. Got to the building just fine only to realize that I went to the wrong doctor’s office. Called to let them know I was on the way and got on the right road… going in the wrong direction. Add in rain, schools getting out, and a budding panic attack and I finally got to the right office. They had already written me off as a loss. Thankfully, I can see the doc after the other patients who were on time. I’m so grateful and waiting is the least penance as far as I’m concerned. I just didn’t want to have to reschedule- I’m really hoping for a diagnosis or at least a med/diet change to get things under better control. If they said no I’d probably have found a restroom and just cried.
It has not been one of my better days.
We also had a family member rushed to the hospital Saturday. He is home as of last night, but things have been very anxious all-around. It is not shaping up to be a great week. I’ll update when I have news from the GI.
Posted in Uncategorized | 1 Comment »
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. :}
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.
Posted in Activism, Smart Ideas, Spoonie Life | 1 Comment »
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.
Posted in Chronic Pain, Rheumatoid Arthritis | Leave a Comment »
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)
Posted in Brain Fog, Spoonie Life | 4 Comments »
(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.)
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Posted in Spoonie Life | Leave a Comment »
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!
Posted in Glasses | 1 Comment »