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Archive for the ‘Chronic Pain’ Category

Lots has been going on health-wise but I’ve had a hard time writing about it (or about anything). I am working on giving myself permission to not feel guilty about my lack of posts, but it’s a work in progress. However, since I have some good news to share, I thought I would finally write something.  :}

About six weeks ago I started Enbrel. It’s been a challenge (mostly, a challenge to deal with my fear of needles so I can self-inject once a week). It’s not getting easier, but I’m more confident that I’m not going to do myself serious injury in the process. It’s hard to say how much impact it’s having- it’s still pretty early in treatment, but my energy is better and the arthritis in my feet and toes is hugely improved, which helps me get on the treadmill and is always a good thing. I do find myself getting fatigued more easily and sleeping more/taking naps on weekends, but hopefully that’s just part of the adjustment process (whether to the medicine, the exercise, or both).

The biggest positive outcome is that I am now off the sulfsalazine (which didn’t seem to have any effect on my RA whatsoever). That means four less huge pills a day and they’re not turning my hands and other pills yellow any more. Yay! If all continues to go well in the next couple of weeks I can taper off of Prednisone (which would make me SO happy).

It’s hard to think that I have been trying to treat my RA for nine years now and we’re only just starting on biologics. I track when I stop medications, and it’s a long list of trying different things with only partial success. It’s not a magic cure (if only!), but the rate of temporary remission is fairly high and I have hopes. It’s not likely that I’ll ever be 100% pain-free, but any reduction is welcome.

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I haven’t updated in a bit and there’s quite a lot going on. For one, I am doing a fair job of keeping up with exercising a minimum of 30 minutes a day at least four times a week. I’ve been able to walk longer (up to 40 minutes) but I’m not always able to make it five times. I’m allowing myself some flexibility so I don’t push too hard. I had a turned ankle that slowed me down for a couple days, and my knees are occasionally cranking up, especially with the cold turn the weather has taken. I need to work some of my PT for my knee and shoulders back into my schedule but haven’t quite sorted that yet.

I had a terrible pain flare yesterday, mostly in my thighs and knees. It took me most of the day to figure out what triggered it- I had topped off the air in my tires Monday after work and squatting and bending must have done it. I am still stiff and sore today, but not nearly as bad as yesterday. It might not have been such an issue, except my rheumatologist has put me on a 15 day taper-down of prednisone, so I’m not taking my daily naproxen until that’s done with. I had fresh x-rays of my hands yesterday, as well as feet to see what’s going on with my toes. The increased exercise could be aggravating the arthritis there and there is some swelling. I have bloodwork scheduled this week as well, so all that will hopefully tell us something.

Despite all that I’m really doing well- just trying to manage stress with the start of term. We had some technical issues that made the last few days particularly harrowing, but we’ve gotten through it all and are caught up with the work load. I really have an amazing team and am grateful for them every day. Home is wonderful, and with the cold weather three snuggly cats on the bed is the best thing ever! I have my good days and my bad, but I feel like I’m pacing myself well. Hubby and I are tentatively planning holiday in Scotland this year, although we won’t really know for sure until February which is also when my online course starts. If all goes well we may start house-hunting again instead.  :}

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A bit belated, but here are things that I am grateful for in no particular order:

My hubby. We’ve both been going through some health challenges lately, plus he moved to a new job, but he remains amazing and able to make me laugh when I’m getting too stressed out. I couldn’t do any of this without him.

Purring kittens, even when they wake you up too early by licking your face and sleeping on your head. (Yes, we adopted two kittens, Recon and Scout, which brings us up to four cats total. It’s crazy, but we love it!)

10,000 steps! I’ve had my FitBit since May and yesterday was the first time I walked a full 10,000 steps in one day. I’ve been working on exercising more and can do 30 minutes on the treadmill 3-4 times a week now. My goal is to be able to do it 5x a week, and then maybe move up to longer walks (but fewer of them). Staying on a regular schedule seems to be helping my metabolism and I’ve lost 5 lbs. The hardest part is getting on the treadmill even when I’m tired (and I haven’t had a pain-free session yet). The second hardest is maintaining a steady pace when I’m feeling good and want to push it.

A hubby who humors my whims. Using the sales I picked up a larger tank for Fish (my blue, half-moon betta). Hopefully he can move into his new home today or tomorrow. Once he gets settled, he will probably get a snail-friend to keep him company. Hopefully I can think up a better name for the snail than I did for Fish.

Smooth doctor transitions. Both my endo and my rheumatologist moved at almost the same time. I was a bit panicked, but the advantage of having my specialists in the same practice meant that all my files transferred to my new docs smoothly and I didn’t have to go anywhere else. Things are doing pretty well on that end, and it certainly makes managing my prescriptions a lot easier. I’ve seen both docs once already and I’m comfortable with the transition.

A good job. I’m still maintaining a full-time job, and despite frustration over technical issues making my job harder (trying to keep it positive here), I work with amazing, supportive people. I also just found out that I am getting a 2% raise in the new year, which is happy news!

Family. Thanksgiving with my in-laws was lovely, as was chatting with my mom on the phone. It is tough being apart at the holidays, but technology helps to keep us close. Thanks to family generosity, we now have my in-laws old set of livingroom furniture and our two oldest, most beat-up couches are off to couch heaven. (We’re in our 40s, so it was probably time to give up the sofa with the duct-taped corners.)

Warm weather. Okay, so maybe we’ve had a bit too much warm, wet weather: we had a bumper-crop of mushrooms coming up everywhere and mildew growing on the outside of our windows. As much as I enjoy the cooler, drier weather in winter, I don’t like the aches and pains from the cold, so I’ll make the most of it while it lasts. It’s nice to be able to open the windows on the weekends and air out the house. And despite how much I love looking at everyone’s pictures of the snow, I am grateful to be at a balmy latitude and not have to worry about walking/driving on ice!

The Internet. Being able to keep in touch with distant friends and meeting new ones through Tumblr and Spoonie groups is just amazing. Even if it’s just laughing at silly Vimes and cat pictures, it really helps me keep my sanity. It is also when fanfiction lives, so it has that going for it, too! (And computer games, of course.)  ;}

Cozy sweaters and blankets. I think this one is pretty self-explanatory.

Soy chai and sugar-free cider mix. My dietary restrictions are tough at times, but finding good substitutions helps me keep from feeling deprived. (And related to this- having a Keurig. It’s so convenient when I need a quick hot cup of tea or hot water for my oatmeal!)

Being able to help others. Whether it’s Toys for Tots, drives for the homeless, clipping baby coupons for friends or providing a place to escape relatives at the holidays, being able to help even in little ways really makes me feel better and helps me focus on what I can do, rather than stewing over what I can’t.

Financial stability. Also pretty self-explanatory. Job transitions are always tough, but hopefully in the spring we can start house-hunting again!

Decorating for the holidays. I don’t approve of Christmas stuff appearing in October in the stores, but now that it’s December I can enjoy other people’s lights and decorating the office. We may or may not do a tree this year due to the kittens. Even if we put one up it will be bare until they get over the newness and I won’t use any glass ornaments, at which point we’re debating if we should bother at all. I will put the wreath on the door and plan to do at a least a few cards and am slowly working through our gift-list. I also want to make felt ornaments for the new kittens, even if they don’t go on the tree this year.

Alternative Baking Company for making double-chocolate cookies without dairy so I can get my chocolate fix! I am being pretty strict on the no-dairy thing, but I feel so much better without it that it’s totally worth it. Chocolate is the only area where I’m tempted to “cheat”, and with so many holiday goodies around the office it’s been very tempting.

Health insurance. I am so, so grateful for health insurance. It’s been a tough year since I blew through my MRA so early in the year (May) thanks to needing bifocals. I’m starting to get my end-of-the-year statements and can see how much insurance covers and it staggers my mind (and that doesn’t even factor in my prescriptions, which if I paid full price would be hundred of dollars a month). I wish I could have waited to replace my TENS unit, but with insurance covering most of it I’m relieved to have it working when I need it.

Splints. I would much rather not need as often (or at all), but when I do need them they are such a big help!

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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*

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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.

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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.  :}

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…but Jenni’s ChronicBabe community has gotten me through some tough times over the years, so I’m thrilled to support this project! If you’d like to chip in, please read below:

hi friend! i hope you’re having a great day.

i hope you’re familiar with my passion project: chronicbabe.com. it grew out of my own experience of learning to craft an exceptional life in spite of illness. (it’s part of why i went into business for myself 13 years ago.)
this month, i’m running a kickstarter for my chronicbabe 101 book, a project that will put valuable lessons in the hands of thousands of folks. with 24 hours left, we are fully funded and made all our stretch goals, which means i will give a digital copy of the book to EVERY backer, regardless of their pledge amount – as low as $1. (a big portion of my audience is unable to work, so this is a big deal for them.) the book will be published in july.
 
here’s a quick link to the page – packed with details: http://kck.st/1MREwha (it ends friday, march 27 at 10:30am central time.)
 
in these final hours of the project, i’m hoping to create a big swell of support that ensures tons of people who could benefit get the chance to participate – and i could really use your help. i teach my chronicbabes to ask for help when they need it, so today i’m walking the talk once again: please consider spending five minutes in the next two days doing one of these things. it will make a meaningful impact:
– make a pledge to the project (even $1 helps!)
– post a link to the project on your facebook profile or page, with a sentence about why it’s important to you
– tweet a link to the project
– post a link to the project on your linkedin page
– email someone you think might be interested
– posting a link at a forum you frequent
– tell someone you know face-to-face (weird, i know!) about the project
 
thank you so much! your support means the world. and as always – if i can be of any assistance to you, please say the word.

Be AWAP (As Well As Possible) – Jenni

FINAL HOURS: Back my Kickstarter for a ChronicBabe book. It’s going to be a blast!
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