Arthritis BINGO

It is still hot and humid in my home state, and I am greatly looking forward to November actually feeling like November eventually… maybe in time for Thanksgiving? There have been some weather fluctuations and one or two nights I needed an extra blanket… we even got to open the windows for a couple hours one morning! Unfortunately, as much as I’m looking forward to cool, dry weather my joints are already complaining about the changes.

My right wrist is a fairly constant issue now, and I’m wearing a splint at least three days a week. The first joint of both index fingers have been cranking up as well, and today I finally admitted my right ankle needed extra support and broke out my ankle splint as well. (In good news, I forgot how comfortable that splint is, I can wear it with my regular shoes, and my ankle feels so much better with the light pressure and support.) Add in my left hip (which is a fairly constant ache now) and I could almost win at “Arthritis BINGO”.



My sister visited last week and gave me a belated holiday gift! Mine is black (because my sister knows my preferences) and I tried it out for the first time today.download

The arthritis in my hands (both kinds) has been especially painful lately, so I brought this into work so I can heat them during typing breaks. I was a little concerned about the size since I have freakishly long fingers, but it’s just right (especially since I’m usually only heating on hand at a time). This will also come in handy for cramps or a stiff back at work, too. The cord is long enough (always a concern) and it’s easy to remove the cover for washing (a big plus!).

My only complaint so far is that it is only on/off and can get pretty hot… it would be nice if there was a “low warmth” setting, but otherwise it’s an awesome product! Overall I definitely recommend.  :}

(From someone who worked at St*rbucks.) If you have a milk/dairy allergy AT ALL. DO NOT. I repeat. DO NOT. Drink Pumpkin Spice.

It contains dairy IN the syrup that is used to make the drink. Even if you get it made with soy, you will still be getting doses of dairy in there.

Depending on the severity and intolerance it can and will cause reactions. I found that as a barista I was constantly warning people about the dairy in the product. No one ever seemed to tell them that there was dairy in the mix. More times than I can count I heard people realize that’s why they kept having reactions, or that’s why it made them sick.

People legitimately do not know that pumpkin spice no matter what you do will always contain some amount of dairy.

The Doctor Hoedown

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*

Difficult Days

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.

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