As It Is

Wow, I can't believe I haven't written an entry since August. So much has happened since then. In late August, I was finally put on narcotic pain medication, which always has the same result: I ended up in the hospital an unhappy camper with complications we all were hoping wouldn't happen. While in the hospital, however, something magic happened. I saw a wonderful physical therapist who worked with me on desensitization, and had a pain dr switch me over to PLO gel (this is a topical cream that has neurontin, lydocaine, and ketamine in it) and Ultram. Within a week I was no longer taking Ultram- I didn't have to. Within two weeks, I was no longer using the PLO gel, and my pain had dropped so significantly I was able to start wearing pants, even jeans, again (as opposed to the two faithful dresses I'd been alternating back and forth between).
Since that time, my RSD seems to have gone into a remission of sorts. I'm not quite sure what to make of it, so I'm just plain not thinking too hard about it. Every day is a wonderous gift to feel grateful for. I know things will go one of two ways: either this will last, or it won't. It doesn't matter- right now I am just trying to focus on today and enjoy being (almost completely) pain free -right now-. I feel confident that I'll know what to do should I ever develop hypersensitivity again, thanks to the team at the hospital.
With things going well right now, I'm starting to wonder- just wonder- what possibilities might lie ahead. Most people wouldn't be thrilled at the prospect of working an 8 hour day if they didn't have to, but what a tremendous accomplishment that would be for me. I haven't been able to do that in eight years. Or what about being able to return to school for my MPH while still working? That seems more like a possibility now than ever before. So many things I'm starting to realize might- possibly- happen for me someday. We'll see. Like I said, I don't want to get ahead of myself. I'm just trying to enjoy every day! Take care all.


I did create this blog in the name of writing about my life with RSD, so I think I'll just go for it this time and be truthful, though I will be a bit on the complain-y side (sorry!). I'm told that's okay to do every once in a while.

The high levels of anxiety I've had lately have finally kicked my RSD into high gear. Or rather, a much higher gear than before. The pain I am feeling in my legs really puts the extreme pain my feet into perspective. Going on two weeks now, my legs have been hypersensitive, raw, incredibly and overwhelmingly painful. The best way I can describe it is this: it is as though the entirety of my body is screaming from the pain, and the screaming is reverberating so that all that is filling up my body is pain and the vibration of screams from pain. ...That's not a great description, in fact. But close. The solution? We keep throwing Neurontin at it, hoping this will calm the pain down to a more manageable level. I am trying hard to be patient, but I am not holding my breath (because, see, holding your breath is a very bad thing to do if you are in pain. Deep breaths are key). So: being patient, breathing deeply, doing my best to function normally without spreading my pain funk far and wide.

I have to stick to wearing skirts, which is okay, except that I have to wear panty hose to see patients in clinic, and boy does that hurt. I can't rest things on my lap, so I feel especially rude piling up all of my things on the bus seat next to me (or trying to squeeze them between the wall and myself) while other riders walk by giving me pointed looks. I'm SORRY, but I've got a valid reason for taking up more than my fair share of room, I swear! The pain wakes me up several times a night.

Today my doctor and I talked briefly about the slim possibility of going on a narcotic temporarily. No! Not a good idea. But then again, I don't know how much more Neurontin I will be able to tolerate. Well, fingers crossed that this next increase in dosage will reduce the pain and not make me too loopy or tired. Gah. Well, at least I've got faith that this too shall pass.

My Duct Tape

Throughout the years, I've often joked that all we need to do to fix my knee/elbow/jaw (wisdom teeth)/etc is slap some duct tape on the offending body part. Going into surgery: 'Dr. Larson, don't forget to use duct tape!' ...Maybe if Dr. Boyd had just used duct tape to put my femur back together instead of surgical screws, I wouldn't be in this mess. Who knows.

Where was I going with this... ah yes. I have, in fact, discovered a duct tape that is holding me together and letting me heal. Not to get all preachy, but last February I became a practicing Unitarian Universalist again. There aren't words for the impact this has had on my life. My family has been hit hard by illness and death, impacted by the economy (which does NOT seem to be recovering, at least not around here) and stretched to the limit. I have been dealing with RSD and PTSD flare-ups and bone-deep exhaustion. So it goes. Sometimes it will rain in life. All through it, though, has been this constant support from my UU faith. Every UU I have met has been kind and the people at my church are absolutely wonderful. Taking up spiritual practice, especially such a welcoming and all-inclusive one, has held me together. Yay for duct tape!

Two weeks ago I made the choice to abandon everything I know about taking care of myself and managing my RSD and leapt into a wonderful week- I got to attend General Assembly, the annual, national business meeting of the Unitarian Universalist Association (UUA). It was amazing and energizing and I'm so grateful I had the chance to go... although my RSD would say otherwise. Eh well, some things are worth angering the beast. The inspiration and sense of spirit that I gained from GA has carried me through another difficult week.
One note about GA- we are asked to think, speak and act intentionally (or something to that extent), to treat each other with respect. Well, on Friday, my feet were really hurting, so I had Lydoderm patches on the tops of my feet and was wearing flip-flops to minimize the amount of pressure on them. I was in a food line, and a person next to me asked, "what happened to your feet?" I explained that I had a nerve disease called RSD, and that the patches were Lydocaine, which helped numb the pain. He responded with a startled look and said, "Oh! I'm so sorry. I didn't mean to- I mean, I - I thought maybe you'd sunburned your feet or something." I assured him everything was just fine and I didn't mind him asking. After 7 1/2 years, I am perfectly fine with telling people I have RSD- it's just part of my life. It was interesting to me, though, that this guy thought it was fine to ask about sunburned feet but not about disability. Any thoughts on why this is?

Now that I have regular internet access I will be updating this much more frequently. If you actually read this, thank you!

Just for Joe!

I recently got a request from a certain cousin-in-law of mine to update my blog. So, here you go!
In terms of RSD: It's been rough lately. That's really all I need to say. We've been changing my meds constantly to try to find some balance that eases the pain yet leaves me functional enough to do my job, etc. One of the main problems I'm having is that the wrong words come out of my mouth, or my thoughts get twisted. For example: I was trying to help out a student at RMH last week. She had a review question- pick which sentence is written correctly- using the words "to" "too" and "two". Well, "two" is easy enough. "Too" is also manageable to explain. But of course she asked me about "to". What came out of my mouth? "To means go!" ...wait a second. What?? At least we both had a laugh over that one. But man, did I feel dumb. I went back to cutting tissue paper into 2" squares for their Mother's Day project after that.
The meds aren't doing enough. Or they are, I suppose, but just barely. I have also gone back to relaxation/hypnosis once a week (and practice it every day myself, of course). I'm journaling. I'm going to have my flute repadded so that I can start playing again. I'm eating up spirituality right and left (if such a thing is possible). I don't know; I don't know what else to do for myself. Lots and lots of deep breaths. On the bad days? I hear screaming inside my head. Constant screaming. It amazes me that no one else hears it, just from looking at me. I can't see or hear as well, much less communicate, on those days. I haven't been able to have a good night's sleep in a few weeks now. But. I manage to push through the day. I don't mean to complain about all this. It's just that that's my reality right now. My parents are being absolutely wonderful and supportive and I couldn't do it without them!

On to more exciting things. I've signed up for a class in the fall! Health and Human Rights is a graduate level class in SPH, so I'm hoping that I don't get in trouble with them if I do apply next fall (last time I talked with an advisor, she got upset that I'd taken grad courses as an undergrad. Eh well). I am incredibly excited to take a class on this topic and to be *learning* again! Yay for being intellectually challenged.
Along the same vein, I am reading Paul Farmer's book "Pathologies of Power: Health, Human Rights, and the New War on the Poor". Holy toledo. I recommend this to EVERYONE, no matter your background or interests. I'd lend it to you when I'm done, but I don't think I'm going to be "done" with it for ... maybe ever.

I'm starting to feel like a breathing, living human being again. With that, I'm getting excited about the possible directions my life can/will take me. It feels GOOD to be thinking about this after so long of just coasting along to survive. So. The pain may be eating me up from the inside, but I've got something much more powerful than pain coming to life!

Moving week!

Well, this week will sure be a challenge! I am moving on Saturday. This is the first time I've ever hired movers: I'm guessing I will a) feel completely awkward watching somebody else move everything (sure I can't take that box out to the truck for you?) and b) be 100% relieved. At the end of the day, all I'll have to do is unpack the basics and get ready for the long, slow un-pack ahead of me. Today while I was helping unpack someone else, I stepped down on the kitchen floor wrong and about passed out. This planter fasciitis/ RSD combo, it is no good. I can barely stand to have my foot propped up in bed, after pain meds, and yet somehow I'm going to have to find a way to be going full strength all week. Well, hopefully a good night's sleep will reset things.
Packing up my bookshelves today, I found my copy of La Bete Humaine by Emile Zola. This book... I have a very strong love-hate relationship with this book. We read it in my 8 a.m. CSCL class freshman year. Hated the book, loved the class, and now I guess I'll have to keep Zola around for nostalgic reasons (that, and there are notes written all over the book!).
I walked 1,057 steps today. The goal of the program is to get up to 10,000 steps a day, but 1,057 is a great place to start in a bad flare-up.
Time for blessed sleep. Wishing you all a good Monday!

Exercise- RSD style

With Reflex Sympathetic Dystrophy Syndrome/Complex Regional Pain Syndrome (RSD/CRPS), everyday things can become overwhelming. There are so many things I am supposed to be doing to take care of my body that I sometimes panic when I think about all of the other, normal things I'm supposed to be doing, as well. Cleaning, paying bills, even making and eating meals seem to be more than I can possibly handle. ...Then I take things one step at a time, give myself permission to just do my best and let some things slip, and I can breathe again. It's quite frustrating, though. Seven years into RSD and I'm still adjusting to the person I have had to become. I miss capable Monica that chaired the board of directors for a non-profit while taking multiple AP classes, volunteering at a hospital, and serving on multiple councils, among other activities.
At the moment, I am dealing with a pain flare-up that first reared its ugly head in September. I also seem to have developed planter fasciitis. Thus the laundry list of stretches and exercises. First on the list: desensitization. This is actually a four-pronged approach; I am to 1) massage my feet to tolerence (ha!), 2) stretch the planter fascia (to tolerence), 3) soak my feet in water that I gradually increase/decrease the temperature of (to desensitize my feet to temperature, although I've pointed out that this isn't a problem for me), and 4) activate my muscles by both going up on my toes and holding it for several seconds, building up the amount of time I can stay on my toes, and then lying a towel on the ground and using my toes to gather the towel while I sit. With all of these, I am supposed to do the exercise until it becomes painful, then stop and take deep breaths to calm down my autonomic response. Once I've done that, I'm to repeat the exercises. With the exception of the hot/cold (I think), I am to do this about 10 times a day. To treat the planter fasciitis, I am to do the following: toe raises (which I will do according to the desensitization plan), both a "manual plantar fascia stretch" and a calf stretch, more towel gathering, and, after spreading marbles out on the towel, pick up each marble and put it into a cup (with my toes)- then start over with the other foot. I'm also supposed to roll a ball (textured if possible) around with the bottom of my foot (pressure to tolerence) to mimic soft tissue massage. ... That's a lot, in and of itself. Let's not forget the other stuff. I spend at least an hour a day doing deep relaxation. There are pills to be taken twice a day, with optional pills to be taken three other times a day. I sit in front of a "SAD light" (seasonal affective disorder) for 1/2hr every day. There are appointments for doctors, pain psychologists, and sometimes physical therapy (when in PT, these occur 2-3 times a week). Deep breaths and adjusting my posture constantly are just a given, at this point. Additionally, I am trying to take time to meditate, for the sake of my mental health. I *should* be doing core stabilization exercises on the balance ball, but I've let that one fall to the wayside.
...Goodness gracious. I'm getting exhausted just typing all of this out. Perhaps it makes more sense now why I sometimes panic in the morning at the thought of taking care of myself all day long. (Maybe it explains the 2008 calander sitting beside my desk that I've been meaning to throw out for an entire year now, haha.) I am fully aware that all of this is nothing compared to what many with RSD deal with, and my heart goes out to them. It is an exhausting disease, to be sure. I wish I could have some time off, to recharge. Then again, it is painfully difficult to come back to chronic pain if you've had a break- so, I suppose being bombarded constantly is actually the best route to take.
Well. I am off to embark on another fun adventure in stretching and exercising! I should comment- the entire time I've been writing this, I've been rolling my ball around with my feet, gently massaging them. I'm quite proud of myself. One thing to cross off today's list!

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