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Category Archives: chronic myofascial pain

I look normal

Yeah, I look normal. Fat, but normal. Short, but normal. Brown-haired, brown-eyed, but normal. Rosacea-faced, but normal.

I’m not “normal”. I have invisible illnesses. I have issues that most people wouldn’t understand. I have to do things and live in ways that most people can’t understand.

I loathe being judged for how I manage my life. It’s rude, it’s insensitive, it’s unkind. If you don’t know what someone is going through, consider giving them the benefit of the doubt. Consider that someone outside your tiny world is living their life the way they have to for their own reasons.

Once again, our air conditioning is not working right. We have an upstairs system and a downstairs system. It almost seems like our upstairs system is FINALLY working properly after years of instability due to refrigerant leaks that no one could find the source of. But now, our downstairs system is acting up. It’s been tripping our circuit breaker randomly. Seems to be at the end of long, hot days, so we assumed it was being overworked. Then it started happening more often recently. This morning, it was tripped when I went downstairs first thing this morning. So I went to the electrical panel and reset the breaker, assuming it must have tripped last night because of the humid weather. Before I could leave the room where the panel is, I heard the circuit breaker trip again, almost immediately. I went back to reset it, but again it tripped right away.

We’ve already had an electrician out to check the breaker, which is fine. Last week, we had an a/c guy out to check the system because of the repeated tripping of the breaker. He found nothing, but suggested that based on the symptoms, it was likely our compressor was going bad. It’s not even six years old. But he wasn’t confident that was the problem, so he left with the suggestion that we consider a maintenance contract, but because we’d already established a potential problem, the contract wouldn’t cover that. So WTF was the reason to get the contract? Now, today, the breaker wouldn’t stay on, it kept tripping, which meant a call to another a/c company to see what THEY had to say. Which also meant in today’s hot and humid weather, we had no a/c on our main floor.

I have incredible heat intolerance, and my body does not regulate heat/cooling very well. That means if I go outside and it’s hot and humid, when I come inside it takes me hours to cool off, even when our house is well-climatized. In addition to the heat intolerance and regulation issues, I also now have hot flashes to deal with. If you have hot flashes, you know that for some reason your body does not dissipate that heat very well. It’s like you are being boiled like a lobster without any relief. I wear sleeveless shirts every day, all year round. I overheat so easily, it’s ridiculous. And once I overheat, it can linger. I keep ice packs in the freezer to help me when I get desperate for relief. Also, parts of me get cold from being in the cold (fingers, toes, arms), while the rest of me is hot. WTF.

The a/c guy who came today did all his tests, got the system running, but couldn’t find the actual problem. Could be X or Y or Z. Potentially Z could be the compressor, which turns out to be almost $1300 to replace, not including parts as those are under warranty. The a/c guy, as he was taking my money for the visit, asked what we normally keeping the house temperature at. I told him 65 degrees (although upstairs it’s lower) and he looked like he wanted to pass out or throw up. He told me that’s probably why the compressor is giving out so soon. He told me, “you’re killing your compressor. you really need to have the house set at 70 degrees. a normal setting would be 72 degrees.”

When the house goes up ONE degree, I can tell. When it’s 2 degrees over what I’m accustomed to, I get hot. I know when the a/c has tripped the circuit almost right away. This person, who has no idea about my life, my pain, my heat intolerance…he has no right to judge how I keep my house. Of the things that I have to live with, this one I at least have some ways to help myself. I keep my house like a refrigerator because I have to. I don’t have a choice. I didn’t choose to be this way. I didn’t ask to have these issues. I am living the way I am because I have no other way to live.

I can’t even tell you how difficult it is to be this way and have to be somewhere other than home. Heat can trigger a hot flash, which exacerbates the problem. Even at my dad’s house–where he keeps his a/c at 72 degrees–I am incredibly uncomfortable. In restaurants, I am always hot, which really ruins what could be a good meal and a relaxing evening. Go to someone else’s house? The doctor’s office? A store? A movie? A concert? The library? The hair salon? Even in a cotton tank top, I overheat. It SUCKS.

I’m still feeling crappy. Almost all my joints hurt. All my muscles feel weak. I’m really tired. Next week, I have an appointment to see a neurologist because my primary has no clue what to say to me. She went through the suggestion of virus, sinus infection, allergies. She told me to move around more, to drink more, to rest more. I have trouble getting up on my feet, standing on my feet, walking, sleeping, sitting, bending, moving…I’m going to have to explain all that to the neurologist who knows nothing about me. I’m hoping for compassion and understanding and open-mindedness. I expect none of it based on previous experience with doctors.

People who look at me don’t see my pain. They don’t know from looking at me that I have a shoulder impingement so I can’t lift my arm, or pick things up, or weed my garden. That random movements of my arm sends shooting sciatica-type pain down my arm. Sometimes petting the dogs hurts. I can’t put my clasp bra on normally anymore. Pull-over bras are almost as difficult to get over my head. Pulling shirts over my head hurts. Opening doors with that arm hurts. Reaching for soap with that arm hurts. They don’t know from looking at me how much harder it is getting every day for me to wash my hair. I can’t shave my armpits because I can’t lift the bad arm and I can’t reach the other pit with the bad arm. They don’t know that standing on my feet hurts my ankles and my knees, or that bending over hurts my shoulders and my neck. They don’t know that sometimes (but not every time) turning my head can instigate imbalance. They don’t know that when I stand up (or sit down even) it feels like the muscles in my legs might not support me, and/or that I feel like I’ve run a hundred miles (but really I can’t even walk a mile). They don’t know that I can’t pick things up because my arms feel weak, and I often worry I’ll drop whatever I’m attempting to pick up. They don’t know that I worry that I can’t take care of myself during the day, let alone take care of my dogs, because of these things they can’t see.

I look normal, but realistically I am anything but. You can’t see it, but it’s true. It’s anything but easy, but this is the only life I have. I already know that I have to spend more, do more, prepare more, worry more because of how I am…you poking at me for having to do those things is cruel. You judging me for how I have to live my life is shitty. Don’t do it.

(obv this isn’t aimed at my readers, so take no offense, I just needed to rant)

 

 

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Fake (my) news

Do you listen to yourself talk? Do you have an internal editor who sifts through what you say before you say it? Do you tell people the truth when they ask you questions?

I don’t remember when this happened, but one day I remember listening to myself talk as if I were watching the conversation from outside of it. Not in a derealization kind of way, just in a way of WTF am I doing? Someone had asked me something and I was answering them, and the words coming out of my mouth were–technically speaking–lies. I wasn’t lying with malice, I was lying because I didn’t want the person to know how shitty I was feeling. I was lying because I didn’t want to have to deal with the eventual questions of why and have you seen a doctor and have you tried x. I was lying because I didn’t want the person to pity me, or to worry about me, or to think less of me for my health issues.

I’m in pain almost every day, from various parts of my body. Possibly from my mind, who knows. I feel lousy the majority of the days in recent years…not pain specifically, but sometimes it’s anxiety, sometimes it’s due to a known illness, sometimes it’s what my mind conjures, and sometimes it’s some unknown ailment. I get tired of telling people how I’m feeling when they ask. And for the most part, it’s not about them, it’s about me. I don’t want to deal with whatever the blow-back is, as I said above.

And on this particular day, I came to a realization of how often I lie (without malice) to people. Clearly I do it without forethought or planning…and in some cases it seems to be an automatic response. I try not to do it with Hub (he can often see through me anyway) and I definitely try not to do it with my therapist. Sometimes I will edit the “truth”, even though I suspect both of them know it. But with everyone else? I lie. I give fake answers. I edit the things I’m saying to meet the person I’m conversing with.

I hate how are you? I despise how are you feeling? I always feel put on the spot to answer in a manner that the person asking can understand or respond to in a manner that works for them. I absolutely abhor when Hub asks me what hurts or does something hurt? Again, no one else’s issue other than mine, but this is the truth.

I don’t remember a time when my body didn’t harbor pain. I don’t remember a time when my body didn’t report some form of illness–real or anxiety-induced. I don’t remember a time when I didn’t lie to people about those things.

How are you? Shitty.

How are you feeling? Shitty.

What hurts? Everything.

Giving those answers…what does it do for me or for the person asking? Nothing. It puts me on the spot to explain, clarify, defend, respond…and I don’t want to anymore. I would very much wish that I wouldn’t need to anymore, but in lieu of that, I lie.

How are you? Fine, thanks.

How are you feeling? Good days and bad days.

What hurts? Nothing new or different.

If you can’t beat ’em, fake ’em?

 

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March not better

I thought February was bad. March has been worse.

I’m feeling so shitty, I can’t even. Period. I spend much of my days fighting the nausea and the fatigue…I’m exhausted before I get going. And now…and now, my imbalance is back in a big way. I’m struggling to walk without falling over, and I’m back to touching walls and handrails and tables and whatever in order to keep myself stable. This is a huge slide backward for me, as I haven’t had this kind of imbalance in quite some time.

I went back to the doctor AGAIN because I’m still exhausted and I’m still nauseated. She told me I was acting better this time versus the last visit, but she’s still thinking I have a virus that I need to just “wait out”. She sent me for more blood work (ANA, rheumatoid arthritis, lyme, iron, b12), but everything came back normal. My b12 is a tad on the low side for my history but still in the normal range. I’ve ordered my b12 sublingual pills and will start them ASAP. Maybe it’s that, maybe it’s stress and grief, maybe it’s something else. I have no idea and apparently neither does my doctor. She said to drink more water and walk outside for 20-30 minutes a day. She says dehydration can cause nausea–and maybe it can–but my drinking habits haven’t altered much. Except now I feel like shit and so I don’t want to do anything, including drink. If I go walk outside my allergies will get worse and I’ll have more breathing trouble and more snot and more post-nasal drip and more nausea. The doctor didn’t care for that and told me to do it anyway, that being outside and walking will make me feel better and get rid of my fatigue. I’m not eating much because I’m so nauseated all the time. I rush through eating what I can before I feel like I can’t put anything else in my mouth at both lunch and dinner, then I leave my dishes in the sink and go back to the couch.

I spend most of my days on the couch, barely even bothering to look at my computer. I try to stay upright, but I’m so exhausted all the time that I end up stretched out and wishing that the day was just over. I don’t know why I wish for that because at this point tomorrow will be much of the same. I feel like I’m sliding into this despair of thinking that I’ll never feel better. That it will always be like this. I am trying to push past the exhaustion and do stuff–I did three loads of laundry on Sunday–in the hopes that if I ignore what’s going on it will go away. But by the time I do anything, I feel this crushing fatigue again and I end up on the couch. Or in bed.

Sleeping is a negatory. I try to sleep but it doesn’t work, and when I wake up in the morning I can hardly haul myself out of bed. I don’t feel rested or refreshed or like I even closed my eyes. I want to cry but I’m too fucking tired to cry.

I was supposed to go see my massage therapist on the 14th but our local snow canceled that appointment. I was also scheduled to go tomorrow morning, but I literally got an email at 9:30pm saying she’s sick and has to cancel. And for sure I’m grateful because I do NOT want to get sick and it sounds like she has the flu, but I’m so disappointed. For one thing, I was hoping some trigger point release would help with my imbalance and nausea (hoping, though not confident)…for another thing, getting onto her schedule is a bitch and even though I rushed I struggled to get back onto her calendar. It’ll be two weeks before I can get back in to see her, which might not be horrible because if she DOES have the flu I wouldn’t want to be back in her “hands” too soon. But it’s hard to miss appointment after appointment when I’m feeling so poorly. Hub tried to send me a link to a list of massage therapists in the area, but none of them do trigger point AND it’s hard to just find a new massage therapist. It’s like a mental therapist…you have a relationship built up. It’s not so easy to walk into someone’s space and get naked and let them rub you for an hour.

I see T on Friday, which is the day after the one year anniversary of my mother’s passing. Just happens to be how it worked out. Considering how things are going at the moment, it’s going to be a long, sobby appointment.

I can’t stand this constant nausea. Every time I swallow I feel sick. Every time I move I’m wobbly and off balance and that makes the nausea worse. If I didn’t have the dogs, I’d be in bed all day. I gave thought to going back to bed after lunch today because Butthead had peed and pooped after HER lunch so I knew she’d be okay for a while, but I didn’t want to give in. I’ve been in that place where I didn’t get out of bed for weeks (with my prilosec fever) and that’s a bad road to head down. It only makes me weaker and makes me feel worse.

Hub’s birthday dinner with his family is this coming weekend. I don’t know how I’m going to go…by 3pm, I’m so exhausted I can barely sit at our kitchen table for dinner, how am I going to get out and go to a restaurant and be “on” for his family? For hours… We didn’t go out on his birthday because I couldn’t get up the energy. We didn’t go donate the dolls and bears I crocheted to the police station because I didn’t have the energy to leave the house.

I don’t know what to do now. I don’t know what path to take. I don’t know how to do anything right now.

 

 

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On dogs and doctors and days (long)

It’s been a busy month. Today is the 18th, just FYI.

I got my eyes checked–for the first time in at least six years–only to find that my prescription has barely changed. In fact, the doctor wanted to roll back my prescription a smidge but I declined. I just picked up my new glasses about an hour ago and when I put them on, I felt weird. I think we ended up a tiny bit stronger, but the technician said it could also be the upgraded coating on the lenses that made me feel funky. I’ll have to ease into the new glasses, which is fine because I still have an old pair to use in the meantime. The new glasses have half-frames, so they should be lighter on my face. The second pair of “new” glasses I got are actually one of my old frames with new lenses. I would say it was cheaper to do it that way, but honestly by the time I picked the first set of new frames, I was so freaking tired of looking at frames that I just told her to put new lenses in my old frames. They were in fine condition and they were going to be my back-up pair anyway. Everyone I worked with at the optometrist kept repeating that I had single vision lenses (instead of bi-focals) and they all sounded surprised. Kind of annoying, but honestly the major reason I didn’t go back to get my eyes checked in the last six years is because at 39 years old, the optometrist told me at 40 I’d be needing bi-focals (because that’s “the age”) and I didn’t want bi-focals so I didn’t go back. And here I am, six years later, still no bi-focals. So poo on all of you. Meanwhile, I also hate getting my eyes dilated, but this optometrist had some new-fangled technology that let them take pictures of my eyes and I was able to put off dilation again.

Monday we took Le Moo for her annual “senior” check-up at the vet. We took Butthead, too, because we’d noticed her front two bottom teeth were disappearing. The vet assured me that it wasn’t likely to be the case when we talked in email, but we brought her anyway to make sure. Le Moo is healthy and has lost about 10% of her weight. She went from 94 pounds to 86 pounds, which we are doing on purpose because as she ages she seems to be more prone to limping after running or playing. She’s a big girl and we’ve always had trouble getting her to lose weight, so we gave up and she pretty much maintained a steady weight for all the years we had her. Then we saw the limping issue and we started getting really strict and we’ve noticed it paying off. We’ll keep up with it and try to keep her from injury. The vet looked at Butthead’s teeth and said they aren’t disappearing, the gum is growing up over them. Nothing to do unless it bothers her and so far she hasn’t complained. Unfortunately, the vet is 90 minutes away, so it kind of takes up several hours just going, doing the appointment, and coming home. So Hub’s MLK day off was pretty well used it by that. I’m glad Le Moo is doing well…she’s somewhere around eight years old, which is getting up there in big dog years. And ya’ll know I worry. We’re going to have to get her back to the vet to get her teeth cleaned (she’s got bad teeth, yo), so we’ll be making that trip again in the next month or so. Yay.

So Tuesday was my six month check-up with the gyn onc surgeon. Because of Hub’s status with his company (they got bought out and are in transition), I didn’t want him to have to take a day off to accompany me to an appointment that would likely last less than 15 minutes. So I sent him on his way to work and girded myself for the hour ride to the onc’s office. Under normal circumstances, I would have been nervous but okay to make the trip on my own. I made the appointment for after rush hour and I plotted my route to go on the mostly un-used toll road to avoid further traffic. But…it rained. I knew it was predicted to be “light showers” so I told Hub I’d be fine on my own. When I got on the road it was lightly showering. Ten minutes in, before I even reached the toll road, it was pouring. And I was sweating bullets, hands clutched on the steering wheel, talking myself into being OK. I don’t like driving in the rain and I hate driving on wet roads. I have been in a full 360 degree skid behind the wheel before and it’s not fun, so I try to avoid driving in weather. In addition, the toll road is 60mph, and the highway that I was supposed to be getting on at the other end is 60mph, with lots of traffic. So when I rolled onto the toll road, I basically planted myself three or four car lengths behind a dump truck and kept speed as comfortably as I could. Halfway along the toll road, the dump truck changed lanes and sped off. WTF. But I stayed steady and with the few cars on the road flying around me, I made it along the toll road. At the other end, I decided to exit early onto a main road that cuts through the city that I knew would have lots of traffic lights and lots of cars, but also slower moving. And I splashed my way along for half an hour until I got to my destination. It was a good thing I left early, and I made it with ten minutes to spare at the doctor’s office. The doctor was “only” 45 minutes late (we’ve actually waited for 2 hours for prior appointments!), he spent less than 10 minutes with me…several of those minutes were taken up when I told him my mother had passed and we talked about that. He said everything looked good for me and without any concerning symptoms he had no reason to run any tests. In July I’ll repeat a CT scan as part of my follow-up at my two year mark.

Luckily for the trip home it had stopped raining but the roads were all wet. Even so, I made my way along the major highway back to the toll road, and then meandered along the toll road toward my exit. Unfortunately again, the exit ramp I have to take from the toll road to the highway home is a HUGE flyover, which I don’t even like to drive on DRY pavement. Instead I took the exit for the opposite direction which is a normal exit and I turned around at the first traffic light. And I headed home on more regularly traveled roads, which meant I was more comfortable even though the streets were still wet.

In March I will go for my mammogram. It’s still hard for me to go to these appointments and to know when I get home that I don’t have my mother to talk to about what happened. I thought it would get easier, but so far it hasn’t.

Tomorrow I go for a “consultation” to get my hair did. The salon I selected (different from the one I used last year…partly because the stylist never answered my queries and now because I find out this new salon has more “organic” hair dye) wants me to come in to meet the stylist and to let the stylist see my hair and confirm what I want done. If all is well, I go in early on Saturday to get all the colors. ALL THE COLORS. When I was younger I used to box dye my hair all the time, mostly variations on reds because I didn’t like my plain brown hair. At some point I became too ill physically to dye my hair so I stopped. Then I did it a few more times when I was feeling better, but it was a pain in the ass and everything got all stained (including ME) and I didn’t really love the results, so I stopped again. One year I went and got my hair all chopped off and then I had the salon dye my hair but… well, I wasn’t really keen on how it looked and it seemed like the color washed out pretty quickly and I didn’t want to waste my money.

Only last year did I decide to get something done again and I wanted it to be a little funky to make my mother smile. I got a combo of auburn and violet done, but Mom never noticed and the final look wasn’t as pronounced as I had hoped. Over the past year I haven’t bothered to do anything except let my hair grow out. But after my breast MRI and my colonoscopy and my eye exam, and now my onc follow-up, I knew I wanted to do something fun to celebrate the positive news I’ve been getting. I’ve been stalking Instagram (which I don’t use) for different pictures of what I wanted and I am vacillating between something oil-slick color looking and something more jewel-toned, but there’s definitely gonna be blues and purples and maybe some teal and pink. We’ll see what the stylist says tomorrow. If I can get a picture of before and after, I’ll come back and post them.

I’ve also gone past my birthday. My father asked me three or four times if I wanted to go out to dinner for my birthday (he called around lunchtime) but I kept saying no. I felt bad because I know he likes to go out to dinner and I am sure he felt it was what he could do for me, but I didn’t want to go out. I stood my ground and I thanked him, but said I wanted to chill at home. Hub acquiesced and didn’t do anything special for dinner, but we were together so that was fine. The weather outside was crappy and icy so I was just as happy to stay inside and just BE. My aunt–who doesn’t do so good with the whole grief support thing–called and kept me on the phone for 45 minutes talking about stuff. Two of my three brothers emailed me to wish me happy birthday, and my very old dear friend did the same. But no call from my mom, which was the hardest part. Just knowing the whole day that she wouldn’t be calling and we wouldn’t be talking. It sucked. And now it’s over for another year.

Friday I will literally be in therapy while the inauguration is going on. Like I had planned it that way. The rest of the day I will be avoiding all manner of television and radio and social media. Bleh.

I am still in a pretty good amount of physical pain. The nausea is still around but it feels like less often, so that’s good. Sleep is still sucky. The imbalance is so-so. My jaw pain is still bad, though. Headaches are not quite as bad. I broke down and saw my massage therapist last week so she could work on the TMJ pain, which worked pretty well for about a day. Next week I go back to her for my regular body-work session. One day I’m going to schedule a woo-woo relaxing massage with her because she’s damn good at it (I had one shortly after my mother died as a gift to myself) and I really want it. I wish my insurance covered that shit because it is physically helpfully to me just like physical therapy was, but it’s not covered. And it’s pretty expensive for an appointment…not that I think it’s overpriced. My massage therapist is a boss and hella good at her job…and she works fucking hard to help me. I can’t even imagine how hard it is on HER body to do the work she does! I have no idea if she’s in line with other massage therapists, but I know she earns every damn dollar during our appointments.

I just realized how long this was. I’m gonna end it now. I should have broken this up into separate posts, but in my head it all felt related. Thanks for sticking with me.

 

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Birthdays and grief

My mother’s birthday was a few days before the holidays. As one of my brothers said to me, “I’m sure it’s not creeping up on you, either…” And it wasn’t. T thinks that a lot of my pain and anxiety were around the colonoscopy without my mother being there, and because of my mother’s birthday, and because of the holidays without her.

Yeah, I knew her birthday was coming. I knew it was going to be bad. I also knew I had somewhat of a plan for the day. Before Mom got sick, when she was still crocheting, she hooked up a bunch of preemie hats for our local hospital’s NICU. At the time, it wasn’t a lot of hats, so we kept saying we were holding off before taking them in. After Mom passed, I took all of the small amounts of yarn I had and crocheted more tiny hats. Then I put them all into a bag and left them in my library. Because I knew what I wanted to do.

On Mom’s birthday, I woke up and got dressed. And I called my father to see how he was. He said he was just going to call me because he was going to the cemetery and he wanted to know if I wanted to go. I didn’t really, but I didn’t want him to go alone. So instead of answering him directly, I said if he would take me up to the hospital to drop off the preemie hats, I would go with him to the cemetery. He said okay, so we left about ten minutes later.

At the hospital–where my father’s sister (my aunt) was admitted and stayed for several days, and where my mother went for her lymphedema wraps–I left Dad in the parking lot and I went inside. At the main desk, they checked me in and directed me to the NICU. As I made my way down the hall, I saw someone walk into the elevator, so I hurried to join her so I could save some time waiting for another elevator. Inside, the woman standing across from me smiled, then looked at the bag in my arms and her smile got wider. She asked me if I was bringing hats to the NICU. I said yes, and her eyes seemed to sparkle. She was heading for the NICU herself…she had twin girls who had been born before Thanksgiving–when they were due after Christmas. I said congratulations and I hoped they were doing well, which she said they were. And she told me, “They brought me to see the girls for the first time, and there they were in hand-knitted hats, and it just made my heart skip a beat. That someone out there did that for me and for them, complete strangers!” Her smile was so big.

When the elevator doors opened, I walked with her down the hall and into the NICU waiting area. I wished her luck and she disappeared behind a door that the nurse unlocked for her. I approached the nurse, who was behind a glass windowed reception area, and I put my bag of 40 hats on the counter in between us. And I announced that I was there to drop off crocheted hats for the babies. In all sizes, all colors, all different types of yarns. The nurse smiled and took the bag, then started going through the hats. She oohed and ahhed over some of them, and even rubbed a few on her cheek and said how soft they were. She told me how wonderful if it was to have them, and wanted to know “how many women are there in your group that made these?” I laughed and said it was just my mom and me. The sweet woman said, “oh my goodness, please give your mom a hug for me!”

I basically nodded and smiled, gave a wave, and left the unit for the safety of the hallway. It was hard. I tried not to cry as I made my way back through the hospital and out to the car where my father was waiting. Fortunately, he was busy navigating the parking lot and trying to figure out the best way to get to the cemetery, so our conversation was pretty sparse.

When we were done and I was home, I cried. I cried because those were the last hats I had from her. I cried because I missed her. I cried because I hated where I was in my life without her.

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When my mom was going through chemo, I made her a bunch of hats for her to wear after she lost her hair. Years ago, probably six or seven years, before I was crocheting, she was supposed to crochet me an open-weave sweater to wear over a tank top. She never got to it, for various reasons. I don’t even know what happened to the yarn we picked out. She crocheted me a shawl for my brother’s wedding, and added crocheted sleeves to an evening gown for my cousin’s black-tie wedding. So I really have nothing I can wear that she made for me. I wish I did. The last thing she crocheted was a lap blanket that she was expecting to donate, but a few days after she died, I took it. I wrapped it up in tissue paper and put it into a plastic bag that a set of sheets came in, and I put it away in my guest room. It’s in a drawer in my grandparents’ dresser. It’s ugly as sin color-wise, but I can’t bear to part with it. I also have a ruffled ball that was supposed to be for a baby that was a test-project. It’s on a shelf in my bookcase hidden behind some doors with the perfume that I took from her bathroom drawers a few months after she died.

I honored my  mom as best I could on her birthday. My birthday is coming up soon. Hub usually cooks me a special dinner and he’s been asking me what I want to eat. I kept putting him off, because I honestly do not want to celebrate my birthday. I finally told him I didn’t want anything special on my birthday because I didn’t want to have my birthday. I don’t even want it to be acknowledged, because it’s just another reminder to me that she isn’t here with me. Last year she was in brain radiation on my birthday…she was just getting over the symptoms of the brain mets. We were dealing with the lawyer trying to get my parents’ trusts all finalized and stuff.

Last year, five days before my birthday, I had to call an ambulance at 11pm for Hub because he had an episode of paroxysmal supraventricular tachycardia (PSVT) where his heart rate was sustained up around 225 or 250bpm. They had to stop his heart twice with medication to get it reset. We went to his follow-up appointment with his cardiologist on my birthday.

Right now, I’m in pain. My arms and back and neck and shoulders hurt. I have headaches on an almost daily basis for multiple hours at a time. My hips hurt when I try to sleep. I still have nausea. I still have jaw pain. I still have anxiety over the jaw pain, though it’s not as persistent as it was in the past few weeks. I’m not sleeping much and I’m not crocheting because I hurt too much.

I don’t want to celebrate. Right now I just want the days to be days, so I don’t have to be so sad.

 

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These days (on God and faith)

There are days I wake up feeling mad at God. And days I go to sleep feeling mad at God.

I’m not overly religious, but I was raised with religion. I follow many of our traditions but I do not attend services every week. I did not grow up attending services every week. My life now as an adult is pretty close to my life growing up. My family’s traditions and habits stayed with me through the years to now. When my grandfather died, my mother started taking my grandmother to weekly services because my grandmother found comfort in the ritual. And I think it gave my mother special time with her mother. When my grandmother passed away, my mother continued attending weekly services because I think it became comfort to her. She generally attended the services with my father, who only went because she did. Sometimes she went alone, but that was pretty rare.

I do not find comfort in weekly services, so I never got into that tradition. I found comfort in my family. That family is in chaos without my mother.

I’m angry at God for taking my mother away. I’m angry at God for not giving me the ability to heal her. I’m angry at God for leaving me with this emptiness, this pain, this loneliness. I’m angry at God for putting my father through his own personal hell.

I’ve had previous tiffs with God. When I first got sick, I was so involved with being sick that I didn’t have time to think about God’s part in it. When I got sick again–more on top of the first illness–I was tired and I wanted to just give up. I didn’t think about why I was sick, only that I was. But as the years went on and my chronic pain and other chronic issues continued, I got mad at God. Why was He letting me be in pain all the time? Why wasn’t He helping the doctors figure out what was wrong with me and how to help me?

Why did He give my grandfather leukemia? Why did He let my grandfather suffer? And why did He let my grandfather die at only 82 years old? Why did He give my grandmother an eye disease that left her mostly blind? And then the stroke? And the dementia? Why did He let her linger year after year, lost in her own mind, needing others to care for her physical body because she was no longer able? My uncle, my aunt…on and on.

Why the cancer released on my mother’s body? Why did it have to be so aggressive? Why so fast, so hard? Why did it have to ruin her body and her mind at the end? Why did He have to take her away from us?

I know a lot of people who find comfort in their faith. Some give all their problems to God and accept whatever the answer is. I don’t know how to do that. I don’t know how to get past the anger. I’m not saying I spend my days raging at God, because I don’t. But there are days when I sure want to rage and scream and ask WHY WHY WHY. How do I have trust in God and in a universe that has stolen my mother from me?

I watch commercials and I’m angry at kids with their mothers. When I’m out in stores I silently scream at kids with their mothers, wanting them to relish their time together because it won’t last. I’m jealous of Hub, who has his mother in his life. I’m so pissed off that my brothers had my mother in their lives longer than I did. I know these are petty things and don’t change what happened, but they are more reasons why I question God and faith and religion.

So many things in life I can attribute to decisions made by human beings. Why the election results? Too many people made the wrong decision. Why are people being killed in our cities? Too many people make wrong decisions, do bad things, trust the wrong people.

Why did my mother get an aggressive and rare form of cancer that took her away from me too fast and too early? I can’t blame that on a person or a decision. I can’t point to something and say, “oh that’s it! that’s why she’s dead and I’m living my life without her and my father is barely living a life at all…” Who else is there to look to? Who else was there to make the choice to give her cancer and take her away other than God?

Is any of this rational? Is anger at God rational? Does God even care if I’m angry at Him? Does God even care at all? Am I terrible for even asking these questions or feeling these feelings?

Hub often calls himself a heathen. He grew up with religion because his mother (and then his step-father) were religious. But he was very turned off as a youngster by the religious leaders in his community and he moved away from his religion. At this point I think he considers himself to be agnostic, though he deeply respects my feelings for my religion and traditions. These days I can more clearly understand his feelings, though not because of any religious leaders, but more because of my current predicament.

Despite my mother’s faith in her religion for most of her life, I don’t really know how she came to grips with any of this during her illness. It wasn’t something we discussed, mostly because I’m not sure she wanted to think about dying. At the end, I don’t know how much of her mind was still there, so I’m not sure she had time to question her faith. Even when we were at the point that the cancer had spread and there was no other medical intervention available, I don’t really know that she knew that. None of us wanted to say that outright to her, and when she didn’t ask specifically, we kept the information to ourselves. In those final days when her mind was still with her, we didn’t talk about the fact that her death was imminent.

I don’t know how to forgive God for my mother’s illness and subsequent death. I don’t know how to let go of the anger.

 

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Don’t pigeon-hole me

I had a very very bad night last night. Even before I was ready to go to sleep, I was feeling uncomfortable. My hands and arms were tingling, or feeling like they were going to be tingling, and no amount of moving them or rubbing them or moving around made it better. Hub went off to sleep, with an early morning alarm to go to an on-site meeting that required a two hour commute (each way). I sat up for a while because my right elbow started hurting. Then my left inner arm starting hurting. The tingling was still going on in both hands. I was so unhappy. I couldn’t lie down and get comfortable, so I kept sitting up in the dark (I had turned the TV off by about midnight in the hopes that I could go to sleep). I was rubbing my hands and bending my elbow repeatedly.

And I did the worst thing I could do. I thought I remembered that pain in your elbow was a symptom of a heart attack, so I looked it up. And it was…and I knew immediately I’d made a mistake by confirming that, and I turned my phone off immediately. I tried again to go to sleep but now both arms were hurting, the elbow, all the tingling, and my body was getting weary from sitting up for so long. I hadn’t slept a wink.

At one-thirty a.m., I had a panic attack in my pitch black bedroom, with my husband snoring beside me. This panic attack in particular consisted of violent trembling of all my limbs. I knew what it was and I let it come because I had hoped it would tire me out and let me give in to sleep. Instead, all the symptoms I’d had before the attack were still there…and I still couldn’t get comfortable enough to sleep. So I sat up for another hour or so and ended up with a second panic attack. Same violent trembling and fear, with all my pain symptoms still hanging on afterward.

So I woke Hub up and told him I needed to call an ambulance, because I was feeling really poorly, I felt short of breath at that point, and all my other symptoms remained. While he got dressed and went to the bathroom, I pulled on some clothes and tried to get downstairs to wait for him. He called 911, requested the ambulance, then called my father so he could take care of our dogs. It was about three thirty in the morning.

I wish I could say the EMTs were kind and compassionate when they arrived, but they weren’t. The lead guy started asking me what was going on, and I told him. He immediately asked me if I had any history of anxiety…which I said I did, but that it was well-controlled most of the time. And that my symptoms had all come about prior to any feelings of anxiety. He told me to follow him to the ambulance–Hub helped me out through the garage while the EMT just walked off–and told me to get in through the side door (again, Hub helped me up the steep steps). Inside the ambulance, the EMT hooked me up to the blood pressure cuff and oxygen finger thingy, then started asking me questions again. He kept telling me that my tingling and pain could be from anxiety, and I kept telling him the tingling and pain were PRIOR to me feeling anxiety. My vitals were pretty high, so he directed me to work on my labored breathing while he filled out some chart and told me he and his partner didn’t usually work our local area. As my vitals came down a little, he announced that maybe I wanted to just go back in the house and let them go back to the station. “We’re not in the habit of kidnapping people and taking them to the hospital if they don’t want to go…”

I just stared at him. I was giving him information on “bilateral” arm pain, shortness of breath, tingling in both arms and hands…and he was telling me to go back to my house. I told him in no uncertain terms that I was very familiar with my anxiety and that this wasn’t anxiety…and that I wanted to go to the ER to find out what was going on. He kind of sighed and said, “okay, but you need to keep working on your breathing and anxiety so once the doctor sees you, they can evaluate you without the anxiety in the way.” Then during the ride to the ER, he asked me, “how many times have you done this? gone to the ER in the ambulance?” I said, “this is the first time.” All he said was, “Oh.”

WTF.

At the ER triage, he told the nurse FIRST that I had a history of anxiety. During his recitation of my history and presenting pain, he told her at least two more times that I had a “previous history of anxiety”. They took me to a room and told me to scoot from their gurney to the hospital room bed, then said, “the nurse will see you at some point.” and they left.

Hub FINALLY found me a few minutes later, without any assistance from any of the nurses or the EMTs, who were all standing around chatting at the nurses’ desk. We sat in the room and waited for about half an hour (or 45 minutes?) before the nurse and PA came in to see me at the same time. The PA started asking me questions about how I was feeling, then looked at the computer and said, “You have anxiety issues?” I said yes, but that this was not the anxiety, that I have been managing my anxiety extremely well for quite some time–the PA looked at Hub as if she was expecting him to argue with me, but he confirmed what I was saying. So the PA said, “why don’t you let us get you started on some fluids and some anxiety medication?” I said, “no, I don’t take medication for my anxiety. I manage it without medication.” The PA looked dumbfounded, and wanted to know what she was supposed to do. I told her that I was afraid the pain was symptomatic of a heart attack, and I wanted her to check to see if that’s what was going on…or if it was something else and WHAT the something else might be. The PA asked again about giving me anxiety meds, or something for the pain in my arms. I said I didn’t want pain meds (which she told me would be anxiety medication anyway), that I had anxiety medication at home but that I didn’t take it. Again, I got a look from the PA that said she was sure I had lost my mind.

At this point, the nurse stepped in and said, “oh, I do the same thing. I carry my klonipin with me all the time, but I haven’t used it in years.” The PA looked both confused and annoyed at that point.

The PA said, “I can do a whole work-up, but your history says you had an EKG in June with a stress test and that’s the GOLD STANDARD. So if it was clean, you really don’t need to do anything here.”

I told her I wanted to know what was going on, what the pain was and why was I feeling really poorly. So she said she’d order the EKG, bloodwork, heart enzymes, and a chest and neck xray to see if there was anything going on there. She left the room, and seriously? That was the last time I saw her. We were there for another two and a half hours and she never came back into the room. Neither did a doctor. The nurse took care of us, did the EKG and told Hub about thirty minutes later that an attending said it was normal. She did the blood draw and then told us about an hour later that the results were all clean. She took me to get the xray (because their orderly was MIA) and she was the one who came back to say the xray was fine and I could go home. In the time we were there, she was in and out of our room a lot, talking with us about her history of anxiety, and how people who had never dealt with it didn’t understand. That she knew what I was saying, and how I was feeling about the meds, and how she understood that I was identifying pain not associated with my anxiety.

I felt so demoralized by the EMTs, the PA, and the other staff there (not including the good nurse). I am very open and honest about my anxiety. I feel it’s important for medical personnel to know my history in full, which includes my anxiety. I’m so disappointed that doing so in this instance gave the EMTs and the PA the reasoning (in their minds) to shove me aside, to not take me seriously, and to abandon my care.

We were released from the hospital and got home around six forty-five in the morning. Hub had to bow out of his meetings, he retrieved the dogs from my father’s house, and we both went back to bed. I slept for about two hours, then dozed fitfully for a little while after that. When I woke up and went downstairs to have some lunch, I found that I still had all the same symptoms as the night before. The tingling comes and goes–and is in my legs and feet and sometimes in my face–my back is hurting, I’ve had a headache on and off. I don’t know what’s going on.

Hub reminded me today that fall is usually when I get a pretty bad flare of my myofascial pain syndrome. So is that what this is? The pain is in different places and the tingling is new. Of course I know that my MPS symptoms have changed over the 15 years I’ve had it, but this all feels different. I don’t know why I feel that way, but I do.

Even so, I have no idea what to do now except push through and try to keep my anxiety in check. I am scheduled to go in to see my massage therapist tomorrow to try to get some trigger point work in, with the hopes that it will relieve some of the pain if it is in fact related to my MPS.

The panic attacks don’t feel like a huge setback (a small one, yes), mostly because I knew what was going on and I actually welcomed them with the hopes that just going through it would give me relief on the other side. Almost like if I gave it permission to happen, then I was okay with it happening.

Now…I’m tired. I hope I will sleep. Hub is working from home tomorrow for most of the day, I have the massage therapist, then I’ll be alone for a bit while Hub is visiting a client. Well, the dogs will be with  me and my father is nearby, but I’ll have to take care of the dogs and feed them and stuff on my own. Hopefully I’ll feel up to it.

 

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