Tag Archives: fibro

Forgetting

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Today I forgot how to make a paper crane.

That might sound like no big deal, but it’s actually a huge deal. When I was in elementary school, we did a fundraiser based on the book Sadako and the 1000 Paper Cranes. We had a big session in the gym the day it was announced, where every one of us learned how to make an origami crane. We made more than the thousand that was our goal, and they hung all over the school, in a ranbow of colors.

I can’t remember what we were fundraising for anymore, or what our prize was for reaching our goal of 1000 paper cranes, but ever since then, I’ve always made paper cranes when I get bored. I make them out of napkin wrappers in restaurants, scraps of notebook paper in class, wrappers from candies. The steps to making a crane have been ingrained in my memory for 16 years; I can pretty much make a crane with my eyes closed and completely preoccupied with something else.

Or at least, I used to be able to. I’m taking a paper batik and bookmaking class for studio art credits for graduate school. Today I finished my book early and was bored, so I picked up a square of bright magenta paper and started the first steps to making a crane. Fold diagonally in half, fold again the other way. Fold in half to make a rectangle and fold the other way. Push all of the corners up to form a point, the flatten to form a square. Then…

I totally blanked out. I had no idea what to do next. I sat there and stared at the square of paper, turning it this way and that, trying to figure out what the next step was. I pushed the flaps in and out, without any idea of how to fold the paper to make the wings and legs. It took me about a minute of playing around before it finally kind of came back to me. I was incredibly relieved, but also upset.

I wasn’t this upset after leaving my car keys in the freezer, nor was I this upset when I forgot how to roll down my car windows. Troubled, yes, but upset, no. Those were just little things that didn’t really matter (or at least the car keys were, but forgetting how to roll down the window was pretty bad). But this — this is huge. I feel like I lost a part of myself that I’ve had for more than a decade and a half. When we go to restaurants and such, my family members always pass me their napkin wrappers for me to make cranes out of. It’s what they know me for, and what I do in my down time and for relaxation, or when I just have nothing else to do and there’s paper handy. And today I feel like that little part of me that I’m known for disappeared.

I don’t know what to do. I could go back to my doctor and ask to have my medication reduced again, but my pain levels would probably increase, and I don’t want to start next semester being in pain all the time. Or I could reduce and go on a pain medication, but that’s not something I really want right now — I’ve resisted going on pain meds so far, and don’t want to start now. I could also switch medications, but that would mean months of figuring out the dosage, if it even works. And then there are the side effects to contend with. Who knows what those might be? Medication is about balance, and I’m at a point now where I need to decide what’s important and what needs and wants outweigh the others. I was willing to deal with a bit of memory loss when it came to small things like where I left my keys, but this is much, much bigger than that. This is part of my identity.

I dunno. I should probably go back and see what she says. My next actual appointment isn’t until September (about the longest I’ve going without seeing her since she became my PCP), but I know I could get in within the week if I wanted to. She’ll probably blow me off and tell me what I’ve already said: “Medication is about finding balance between the pros and cons.” But is a little more pain control worth the continuing degeneration of my memory? I just don’t know. I need to think on this more before I make a decision.

#feelingelderly

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I don’t use Twitter — I think it’s stupid — but I feel like a hashtag is appropriate here for this post.

So it’s been more than a week now since I had my cortisone injections in my hips done. I thought I would feel better, but I’ve been feeling a lot worse. Before, I got pain in my hips (mostly left) after sitting for long periods of time, and some with activity. It was uncomfortable, but not horrible. Now, however, I’m getting a lot more pain in my hips while sitting, including groin pain on my left side. And it’s definitely worse the longer I stand and am active. And it’s interfering with my sleep. Last night was pretty horrible, and I had pain running all down my left leg. Miserable.

I still haven’t received the radiologist report about my hip x-rays, so I called my doctor’s office yesterday. They’re going to mail them to me, and she was able to briefly tell me the results over the phone. Yes, it’s hip impingement. I don’t know how bad, where, or what might be done about it, but hopefully I’ll know more when I get and review the results next week. I’ll probably also take them to my chiropractor for her to look at, since she might be able to help me figure out what the heck they mean. I just feel like, I’m only 22. I shouldn’t be having these problems that most older adults have, not at my age. I’m feeling pretty elderly today.

To make me more miserable health-wise, my mom and I were joking with my dad last night about how every allergy med makes him sleepy, even when they’re non-drowsy and have absolutely nothing in them that would make someone fall asleep. We’ve decided that it’s a psychological thing, and that even if we were to give him a placebo pill and tell him it was an allergy med, he would still fall asleep. For some reason, he thought we were calling him a hypochondriac. He laughed, and was like “I can’t believe that Jane, you of all people, are calling me a hypochondriac.” He said it jokingly, but it still really hurt.

I feel like this is how they think of me — that I’m always thinking I’m sick and looking for new problems for no reason. They just don’t get it. Fibromyalgia is a condition that has literally hundreds of symptoms associated with it, and a ridiculous amount of other diseases and syndromes associated with it as well. I’m always having to pay close attention to what’s going on in my body, and every day my pain is different and my symptoms manifest themselves in new ways. I just never know what it’s going to be like on a day-to-day basis. And it doesn’t help that there’s no actual test for fibro, so it’s all based on ruling out other conditions. All it takes is one single symptom to change my diagnosis to something else, for better or worse. I need to always be on the lookout and alert for any changes in my condition. Having someone say, even jokingly, that I’m a hypochondriac is incredibly hurtful, and makes me doubt myself. It makes me wonder if I am, and if it’s all actually in my head. It makes me feel ashamed and not want to get help for new symptoms and issues, and I know that that could be dangerous. But it doesn’t change that doubt and hesitancy.

I dunno. I was kind of down yesterday, between the pain and the hypochondriac issue. And my jaw has suddenly flared up on my left side again,and has been painful and clicking, which makes it difficult to eat or talk. And the stress of not knowing what could happen with my hip, and the threat of surgery hanging over me. It’s just not what I want to deal with at 22 at the beginning of what might be my last real summer. I wish I could just have a week where I didn’t have to worry about any of this, and could just be a normal 22 year old. Meh. Maybe tomorrow will be better.

Oh hai thar

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Oh hey guys, it’s been a while. The last few weeks have been insane — finishing classes and doing finals, finalizing my schedule for next year (finally done!) graduating, moving home…I’m pretty much exhausted. Thank goodness I’m done, though! Now to just find a job and work on some art projects this summer! It’s going to be so chill!

Oh wait, that’s not really true. Yes, I’m looking for a job, and yes I have a lot of projects to work on, but, as always, my poor health is rearing its ugly head, this time in a new way.

I went back to my sports med doctor for a follow up on the snapping hip. The good news is that the physical therapy (which I did rather sparingly, shame on me) really cut down on the snapping, clicking, and instability. It barely happens at all now. The bad news is that, even though the popping has stopped, my hip pain has gone up. Which is weird, because I didn’t really have much hip pain before all this, and now I do. Or maybe I just never really paid attention to it, since I’m dealing with pain in various places on a daily basis for year. But whatever the reason, whether it’s worse or I’m noticing it more, I decided I should probably bring it up with my doctor. She was concerned by that, and ordered x-rays. She also poked around my hips and they were SUPER sensitive around the trochanters. I was pretty much jumping and flinching with even the slightest pressure. And so that’s how it was decided that I would get cortisone shots in each hips. Yay me. I’m just glad she wasn’t in on the day my appointment was originally scheduled for, and that we had to move it back two days, because all of this would have made my birthday pretty crappy.

So we did the hip x-rays and she administered the shots (not fun). Afterwards, she went to look at the scans before the radiologist examined them. She told me that it looks like I have hip impingement, which I had never heard of. Basically it means that there’s too much friction in the hip, due to growths on the femoral head or the edge of the socket. It really increases the risk of arthritis and the need for hip replacement later in life (but earlier than average). It’s usually treated with PT, injections, and rest (all of which actually don’t really do anything except pain relief), but surgery (arthroscopy) is often needed. The surgery is minimally invasive, but still requires like six weeks on crutches and about four months to heal fully.

Hip impingement — the two types of growth.

Ain’t nobody got time for that.

Seriously, though. I’m only (barely) 22. I should not be having hip problems at my age. And I really don’t want to have surgery again — my lap wasn’t terrible, but it wasn’t fun. And hip surgery would be far, far worse. I mean, I guess I actually would have time, because I’m taking one semester and then I would have January — August for whatever. I was hoping to travel and work before graduate school, but if I absolutely had to have surgery, that would be a good time to do it. It would just be really not fun.

Ugh. Here I was thinking, “Hey, things haven’t been too bad health-wise lately. Fibro’s decently under control, my hip’s not popping anymore, I’m going to work on getting fitter this summer…what could go wrong?” and then bam, the universe was like “No.” How rude.

Still waiting for the radiologist report, though. That should hopefully come in the mail today. I guess I’ll wait and see what it says and then try to figure out what to do. Fingers crossed that my doctor read it wrong and that my hips or normal, or that the impingement is mild and surgery wouldn’t be needed now. Bright side, though: I’m pretty much covered for furniture for my apartment. I’ve got a table, five chairs, and a couch. I just need to touch up the stain on the chairs and redo the seats with new fabric and they should be looking pretty good! I’ll post a DIY post and pictures at some point!

Is anyone else sweating to death? …No?

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Oh my goodness, the weather. So it’s finally nice out. This past weekend was great — 60’s to high 70’s, breezy, clear. In short, amazing. And then the actual week started, with the temperature getting up to around 80. Okay, I would prefer the 70’s, but I’ll take anything over snow…And then the storms came, and with them: humidity.

The humidity. Holy crap. In the past year or two, I’ve thought that I might be more sensitive to humidity than most people, but it’s never been a huge problem. But now my medication has been reduced for my memory, and I’m becoming more aware of all sorts of symptoms. The symptom today is my sensitivity to temperature and humidity. I can tell you how humid it is before setting a foot outside. I will lay in bed all night sweating to death if the temperature is higher than about 65 and there’s any sort of humidity. I’m dreading this summer. I don’t know why I’m looking at schools out west — I would never survive it.

It’s really frustrating because my roommate just doesn’t get it. I talk about how miserable I was all night and she’s like “It was perfectly fine in here last night.” Well, for you it was. You don’t have a disorder that’s wreaking havoc on your body all the time. For someone like me with fibromyalgia, a single degree in temperature can be the difference between being comfortable and being miserable. A tiny bit of humidity can make trying to sleep a hell. (In general, I think my roommate might also just be very insensitive to a lot of different things — sounds, smells, temperature, sight etc. I’ll hear things that she never notices, and I’ll smell things she never will. Or, it could be that I’m way more sensitive to stuff like that because of the fibro. Or it could be both. It’s probably both. We’ve also been a bit rocky this week because she likes to be very neat, and I’m not so neat when there are a lot of things going on and I’m stressed out. I came back from class the other day with all of the stuff I had in the living room piled on the floor outside my door, even though it wasn’t that much, but it included my laptop and camera. I was pissed. I understand she likes to be neat, and I try to respect that, but she also needs to try to understand that I’m not a neat freak. The way for her to deal with needing things clean is to just ask me to put things away, not pile it up. It’s not like I would ignore her — I would do it because I would know it was bothering her. And I was about to clean that stuff up anyway because my parents are coming tomorrow. She just couldn’t wait. Ugh. Anyway, back to humidity…).

I really hate when I bring up an issue like this and get an incredulous, unbelieving look from her and others. They just don’t get it. Just because they’re unaffected by something, they can’t understand that for others that same something might be a huge issue. This has been a problem between my roommate and I for a while. She tends to time her laundry poorly, so she’ll be running the washer and dryer past midnight some nights. It doesn’t bother her at all. For me, it’s torture. I can’t sleep because of the sound of it. She just doesn’t get it, even when I explain it to her, and she still does it even though she knows it bothers me. Same with smells. There have been times where she’s made the most rancid-smelling salmon. I’m pretty much vomiting from the fishy smell, and she doesn’t smell anything at all. I’ve tried to ask her not to make such smelly things, but she just doesn’t understand. She can’t smell it, so she thinks I’m just throwing a fit over nothing.

Blah. I just need to live by myself. I’m at that point. I love my roommate to death, but especially with all of these unique fibro symptoms, it would be a lot easier if I just lived on my own and dealt with them on my own. That way I’m not inconveniencing anyone, and I can take care of myself. Just a few more weeks until graduation, then I get my own apartment in the fall! Thank goodness!

Is this week over yet?

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Good lord. This has been the longest week of the semester, I think. It just never ends. I’ve been trying to figure out my schedule for next semester, which has been a bit of a nightmare. I need 15 credit hours for graduate school, all art credits. My first schedule I had seven different classes on my schedule — drawing (3 credits), painting (3), ceramics (1), sculpture (3), woodworking (1), metals (1), and printmaking (3). Wut. Yeah, that wasn’t going to work. Also because it would interfere with my volunteer work. So I tried again — drawing (3), painting (3), ceramics (3), and sculpture (3), with three credits during the summer with a special program that my university offers. Much better. But now the problem is actually getting all that scheduled, since I don’t have a registration time ticket (since they think I’m graduating and leaving) and because I haven’t taken some of the pre-req courses for a few of them. So I’ve been running around all week trying to figure out who to talk to to get all of this resolved. It’s been crazy, and I’m still working on it.

I’ve also been running myself ragged trying to get everything done this week. I managed to get my one exam that I forgot resolved (I can take it and get half credit, and then extra credit, so it’ll be fine), but I still have a million other things to do. I’ve been trying to finish drawings, working on schedules, writing papers, figuring out group projects and meetings, attending a plagiarism hearing as a witness for my roommate (she got off, basically only because of my testimony), picking up my cap and gown for graduation, and trying to figure out what project I’m doing for my volunteer work. I have to go work on stuff tonight for that volunteer work project (playtime, we call it!), figure out what we’re going to do, and then test it a few times. And, just to add to the stress, I’ve barely had time to eat the past few days. I tried to make barbacoa in my crock pot, but for some reason it totally messed up and was burnt black. I have no idea what went wrong, as I followed instructions to the letter. So last night I ended up eating a corn dog for dinner at like nine o’clock. Ew.

To make everything worse, I haven’t been sleeping well all week. They installed a new light on the apartment building across the way, but it’s not a normal flood light. It’s like a prison yard spot light. Even with my shades closed and my curtains (which are supposed to be light-blocking) pulled, it’s like trying to sleep during the day. I’ve been sleeping with a blanket over my curtains. It’s ridiculous. And because that makes my room so dark, I have a lot of trouble waking up in the moment without at least some natural light. I don’t know what to do, short of getting a ladder and punching out that light.

This lack of sleep is really running me down. I’ve been having more flare-ups than usual, and my hips are killing me. We had to stand all class for my drawing course (but we’re finally doing color — yay! Side note, I love color and I love pastels because I can layer color. We had to draw two fruits, a banana and an orange for me, and use only four colors to draw it, which I chose orange, yellow, green, and purple. My instructor thought I was cheating and using more than four colors. Sorry that I just know how to blend and pick colors? I’m just really good at it. Anyway…). All that standing has just been killing my hips. And then I got to the building where my next course was, after running all around campus trying to get answers for my schedule while exhausted from lack of sleep and fibro-fog, and the elevator up to the third floor was out. I was in the basement. So I had to drag myself up all of those stairs. Ugh. Now my hips hurt even more, even while just sitting here. At least we’re watching a movie in my class, so don’t have to actually think or pay attention. Instead I can write this post!

Anyway, sorry for the rant. It’s been a long week and I just want it to be over. Playtime tonight, then one class in the morning and I can go home for the weekend and see family. It can’t come soon enough! Cheers!

Ever feel like you want to cut your arms off?

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Ho. Lee. Crap. So today I decided to sand my six apple crates. I got them at an antique mall cheap, and I’m going to make this:

Coffee table! :’D

The other two crates will be used to make an end table. None of them will be permanently fastened, that way I can rearrange them if I want, as well as use them for storage and transport during moving. My crates will be stained darker, and the insides are going to be painted in greens, yellows, and turquoise. Let me tell you, I’m excited about this project. There will be a whole post about it once I finish!

But, so, the sanding. I decided to get working on them so that I can at least stain before going back to school, even if I don’t get to painting. I dragged them outside (in the 40ish degree, but sunny, weather) and got to work. It took me about two hours, but I get them done! They look great, and I decided to hold off on staining since it was getting late. I went in, sat around for a bit, ate dinner, and then realized…my arms hurt.

Holy. Crap. Do they hurt. Not, like, nomal post-exercise hurt, but like I-want-to-rip-my-arms-off-to-stop-the-agony hurt. This has only happened to me once before, my sophomore year after I had worked out on the bike. That time it was my legs, and I spent several hours in my dorm room crying (I almost never cry from pain) and alternating between laying down and limping around, unable to keep my legs still. My roommates were out studying, and I ended up calling my doctor at like one in the morning, trying to figure out what to do. This time it’s just as bad.

I realized, though, that this is the first time that I’ve done any sort of strenuous exercise since my doctor cut my Lyrica back. I’m already seeing the impossible dilemma — memory or pain? Do I decrease my meds and get my memory back, but have increased pain levels, or to I go back up and have more memory problems, but less pain? Or do I try a different medication entirely?  This is what I was afraid of what she first reduced it, and now I’m seeing my fears come to life.

An extremely hot bath didn’t do anything for the pain, really (although it was nice — especially once I realized that if I just put my Nook in a bag, I could still read in the tub, even with my arms pretty much submerged. Score!), and I know I’m not going to be able to sleep tonight with it like this. I’m strongly considering taking some Lortab that my sister got from when she had tonsillitis (which, okay, can we talk about this for a minute? I’m in pain pretty much 24/7, and I get almost unbearable flare-ups, and I can’t get anything stronger than ibuprofen, and she has a bit of tonsillitis, goes to the ER, and they give her narcotics. Wut.). I did that once before, after a pelvic floor PT session when all of my muscles were spasming and I could barely move. It sure zaps the pain, but it makes me feel a bit loopy, and then ill a few hours later. But even that seems like a good trade-off right now. Ugh.

Oh, and quick update on my sports medicine/PT visit. Went today for PT. It was kind of odd. He did some stuff with me, had me do a few things to assess range of motion, and then gave me some exercises and was like “Make another appointment if you think you’ll need it!” What? I mean, I guess I’ve never had limb-related physical therapy before, but aren’t you supposed to meet more than…once? I’m going to do all the exercises, but I’m not sure how much good they’ll do, especially when I’m not getting at least some feedback about if I’m doing them right, etc. I guess we’ll see, though.

Anyway, hopefully I’ll be able to get this pain under control so that I can get to sleep tonight!

PT again (yay :| )

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Well, I went to my sports medicine appointment today. The verdict: more physical therapy. Not sure how I’m going to swing it this time — last time I had appointments on Fridays, so I was able to come back home (a two hour drive) without missing any class. This time, however, it’ll probably be twice a week. That’ll be interesting to figure out…

My doctor found that I have snapping hip syndrome and patellofemoral pain syndrome (also called Runner’s Knee, which I find funny since I avoid running at pretty much all costs). So basically that means that the tendons/ligaments of my hip are snapping over the femoral head of my hip, making the snapping sound and feeling. With the knee, there’s probably inflammation behind the patella, causing pain and popping. So I get to go to PT and work on strengthening my leg muscles and core. It’ll be nice to get my hips under control and stop feeling like a little old lady whenever I have to walk an sort of a distance, but getting this all scheduled without missing an absurd amount of class is going to be difficult.

Patellofemoral Pain Syndrome

The appointment highlighted again, though, the problems with my right hip. When I was having my pelvic floor physical therapy, that side was really sore and spasmy. And now it’s like that again. The doctor had me lay on my left side as she pressed around the joint. It hurt like CRAP — really sharp and piercing. Normally I can take most pain and be able to hold still and get through it. Not this time. I was actually flinching away. And she kept pressing. Now, I know she needs to check around to see what’s sore, but that was ridiculous. It hurt so bad. I would probably put it around a 7 or an 8 — really high for me for something like that. Now, hours later, I’m still all sore. Pondering a hot bath later (which we just got a new water heater, so it will be a hot bath!)

Also super tired today. Last night was a bit long, as my cat (who has digestive issues and is on special food) was throwing up after being shut it in the room with all of the other cats’ food while the water heater was being delivered and installed. Of course, he stuffed himself. So then he was getting sick, which wasn’t too bad until he started vomiting blood. We ended up at an animal emergency 24-hour care clinic to get it checked out. It turns out it was probably just a blood vessel burst in his stomach from the force of the vomiting, and nothing serious. And once he was there, he was much more perky and apparently being a lovable ham with all of the vet techs. So he got some nausea meds and we were able to go home. But at this point it was already two in the morning. And I can’t sleep unless I read a bit, so I probably didn’t get to sleep until three or so. And then my cat was up at seven because he wanted food/out of my room. So I was up every hour or two taking care of him and such.

My handome guy :D

My handome guy :’D

I ended up not getting up until almost noon, and then I had to get ready for my appointment. Came back from that, ate a bit of a late lunch, and promptly passed out on the couch for two hours. That was kind of nice, but we’ll see how that impacts tonight’s attempts to sleep. Also super sore from all of this.

Not a horrible day, all in all. We’ll try to get these hips under control and go from there. Hopefully I’ll be walking a bit better soon!