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Archive for the ‘Rheumatoid Arthritis’ Category

I haven’t updated here in a very long time, mostly because no news is (usually) good news.

The other option is when I’m hit by one thing after another and it takes a while to get to a place where I can actually look back and summarize what’s going on.

Sadly, recently it’s been the second option.

Let’s start with plantar fasciitis. (Yes, I know I spelled it wrong in my Categories tag- I’ll fix it… eventually.) A few months ago (? six? I honestly don’t remember how long this has been going on) I started having severe pain in my left foot that made it difficult to walk. Since starting with a podiatrist I have stretched, iced, medicated, gelled, electro-therapied, splinted, spent way too much on increasingly specialized sneakers, inserted and padded my foot. This has gotten me to be mostly mobile but with possible Achilles tendon issues and a stress fracture in my foot. (Remember the Year of Foot Fractures? Sadly, I do.) In all, I am better than I was, but not being able to walk reliably has led to weight gain that I really don’t need. I am progressing, just very slowly.

Hurricane Irma. That worked out much better than expected, with my pharmacies being very proactive in making sure I had enough meds until things were back to normal (apparently they learned some painful lessons with Harvey that they didn’t want to repeat). I am deeply grateful for this. The aftermath was hot, muggy, and I chopped off my hair. We had water but cold showers could only do so much and my hair. Just. Didn’t. Dry. A minor injury on my spouse’s part kept me very busy and I was pretty exhausted by the end of it all, despite work being closed for a week.

My rheumatoid is doing well. Sadly, my liver is acting up. My biologic medication can impact my liver. Tests are ongoing. I am already off my cholesterol meds and have blood work scheduled next week so wish me luck.

And hey! A hospital visit! I went from “Hmm- maybe that sushi I had for lunch was off” to “oh crap- is that my appendix?” within 20 minutes last Thursday. There was a LOT of throwing up, which is one of my least favorite things to do. My throat was wrecked for days from it all. I ended up with an ambulance ride to the hospital for what turned out to be a kidney stone! Fantastic! I ended up only being there around 8 hours and the stone passed on its own. I only picked up a mild respiratory cold while I was there, and was singularly unimpressed with morphine’s lack of impact on kidney stone pain. They were going to keep me in observation overnight when the pain suddenly stopped (I thought they had finally put me on The Good Drugs, but no).  I have to agree with most folks who have experienced a kidney stone- this is probably the new “10” on my pain scale. I continue to be pissed as hell at how tiny the stone actually is (3 mm. Yep- I have it. Going to see a Urologist next week. Whee!)

I… could say a lot more about my whole experience. The EMT who couldn’t get my vein because it kept rolling- I forgive you even if it meant blood running down my arm and terrible bruising, but dang I could have lived without that on top of everything else. I am wearing long sleeves while it heals- the bruising for my IV is already gone. Overall, for an unexpected admission I did pretty well. Hubby was fantastic and grabbed my medical emergency sheet and stack of prescriptions, which was useful. Mostly it was a lot of waiting. Hopefully, I just need to drink  more water *crosses fingers* because there are more stones in there and I VERY much want to never go through that again. I was just grateful that it waited until I was back from the rural mountains of New Hampshire or that would have been a much, much worse experience.

And then there’s the fact that my right knee sounds like crinkling cellophane when I walk down stairs. I don’t even have an appointment for that yet since there’s no pain and I’m pretty sure they’re just going to tell me it’s arthritis. I’m dealing with one crisis at a time here.

In good news a cold front came through so we have cool, dry weather and I got to wear one of my sweaters today- yay! And I am forever grateful for my insurance- we are still covering hubby’s medical bills from his ambulance ride and hospital visit for a sliced finger (the night before Irma hit no less. We waved at his room as we left the hospital after my stay). Overall I am- tired. And my stomach is easily made unhappy, but I am much, much better and dealing.

Oh! And no allergy shot for me this week- I picked up four fire ant bites over the weekend. Thankfully, this is my last vial- once I use it up no more allergy shots! It only took five years!

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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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My apologies for any confusion if you saw an earlier draft of this post- I’m learning how to use my phone to do posts and it’s a little… limited. (And tricky.) But yay! I got it to work and uploaded pictures from my phone! (I may need to do some editing before uploading next time though- sorry for the file sizes.)image

While buying Christmas gifts I treated myself to a coloring book and pack of 48 colored pencils. This top one is a small pattern on the frontispiece. Since it was a holiday gift to myself and the leaves looked holly-ish I gave it a Christmas theme.  :}

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It took me maybe an hour and a quarter to finish and I had a few thoughts:

  1. I totally missed an opportunity; I should have copied it and then I could do the same pattern in several different colors/patterns. I *might* get myself a second book just for masters. I might also be getting ahead of myself here.
  2. I am slightly disappointed in the color pencils- there is a serious dearth of reds. If I want a maroon or a burgundy I have to try and blend it myself. I may eventually splurge and buy a larger pack for more options (and then I’ll have duplicates of the most common colors).
  3. Colored pencils are misleading. The pencil looks green but is named “tan”. The color is neither what I think green or tan should be. I will probably make myself a color swatch guide going forward.
  4. If I’m going to do this regularly I need to invest in some pencil holders, maybe like these. I may have given myself a blister, I’m so unused to using a writing implement for long periods of time. I still have a writer’s callous, but I gave it a real workout.
  5. I need to lay a thick sheet of paper or shin cardboard in-between pages. The color may not come through, but the page beneath the one I’m drawing on gets embossed in the process.

On the plus side, it was fun and challenging and I just zoned out and colored for a hour, which was pretty much what I was aiming for. I’m also hoping that coloring will strengthen my hands a bit- my handwriting is really decaying. I managed three whole holiday cards and while I may still send cards to everyone who sent us one… even with effort my handwriting is barely legible. My fingers and elbows ache a little, and I’ve had no tremor (which happens if I get muscle fatigue in my hands), but even better I didn’t have any numbness, which usually crops up when driving, holding an eating utensil, or leaning on my forearms at my desk. Fingers crossed (hah! I did a pun) that this new, fun hobby is also maybe a little therapeutic.  ;}

Update: Yep, finger tips are tender. I made myself a swatch reference sheet to keep in my pencil box- I occasionally have trouble telling shades apart, but there are at least two pencils that I swear are the exact same color. I also added a #5 note above as well.

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Feeling a bit stiff today, but it’s for a good reason! I have been sticking to my walking schedule as best I can, pacing myself and ramping up slowly. Not only am I now walking a minimum of 30 minutes each day that I walk, but for the first time I walked three days in a row! This means that, in theory, I can finally meet my 5x a week walking plan (150 minutes a week). I have walked up to 35 minutes a few times, and usually do at least a quarter mile at a low incline to build up my thigh muscles (which helps my knees). I haven’t walked this regularly since hubby and I were doing 5ks a few years ago.

I’ve broken 10,000 steps a day a couple more times, but I am not pushing that hard (maybe eventually). I’m not walking very fast, but every time I step on the treadmill it’s a success. My left hip is doing much better for the regular exercise, and my lower back has improved somewhat. I’ve managed to avoid any blisters and am religious about stretching so I haven’t had any charley horses. I’m so grateful for the treadmill and hubby’s support (he did get in a few “I told you so”s, but they were well-deserved!)  ;}

My FitBit had an update recently and it now tracks my sleep time automatically. Before I had to toggle it on and off manually, but with my medical band that was difficult to do (and since it is controlled by tapping, my hands were often an issue). So far it seems to be tracking accurately and it’s a great feature! I do need to replace my current band which is wearing out (the metal medical band that I wear on top is probably contributing). I’m hoping for an after-holiday sale that I can take advantage of.

In January I will start tracking what I eat again- I’m focusing on maintaining my walking schedule for now and will give myself a free pass on food until after the holidays. This means I’m not losing any weight, but I’m also not stressing out over food. I have lost some inches around my waist and ordered new jeans in a smaller size- here’s hoping they fit okay! I am also keeping a close eye on my sneakers and may replace those in the new year as well- walking on the treadmill wears them smooth after a while.

I am way behind on holiday anything. I did get the door wreath up and the lights on the front bushes, and brought some ornaments to hang on my team’s tree in the office. With the kittens were are probably going to skip the tree at home entirely this year. We’ve gotten a few cards so far and I intend to send some but am still working out holiday gifts (looks like my packages will be going out after Christmas again this year). I’d like to do more, but I’m also trying to pace myself and maintain my sanity. The disadvantage to exercising is it takes a chunk out of my evenings since I then need to shower afterwards, but in the long run I know it is better for me. I am practicing allowing myself to not do things- it’s almost as challenging as walking on the treadmill.

I do think exercising regularly is helping my anxiety some- whether it’s endorphins or just physical stress relief I’m not sure. I’m not listening to music while I walk right now- I think having time to just quietly zone is probably good for me. Exercising is helping my digestive issues also, so it’s just all-around a good thing for me. In time I’d like to start using light weights again, but I think that will wait for January as well- I want to make exercising a solid habit.

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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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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.  :}

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