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Tag Archives: trigger point therapy

Whole30 week 3 done

Blerg.

I don’t feel any differently than before I started, except today I had a weird snack-attack. I’m not sure what it stemmed from and I tried to make my way through it by sticking to the “program” and attempting to eat a “small meal” rather than an actual snack. Then I got partway through the food and I was feeling uncomfortable in my stomach. So I put the food back in the fridge for later, but at the moment I still feel kind of full and bloated. Not sure I’ll be eating dinner or not…Hub is out for most of the evening doing some work stuff, so I’m on my own.

The “program” says that by this time I should be feeling “Tiger’s blood” and be full of energy. Big N-O on that. And despite the “program” purporting otherwise, I have no reduction in my aches and pains…and in fact I’ve gotten a new foot pain that has bothered me enough that I asked my massage therapist if she can squeeze me in tomorrow for an hour to take a look…or a feel, even.

We’ve continued with our food planning, but this weekend we didn’t do a big cook like the previous two weekends. Of course we had just cooked a whole chicken Saturday night, so maybe that counts. Plus, it’s meatloaf tomorrow night, which will give us a bunch of usable leftovers.

Although we are not supposed to look, I have been keep track of my weight. Initially, I lost three pounds the first week, but I’ve since put it back on. Not really sure what that was about. Lots of people said they lost weight, even though the “program” says it isn’t really for weight loss.

I don’t sleep any better and in fact have struggled to fall asleep during these weeks. Some of that might be the excess pain I’ve been dealing with. I just can’t get comfortable these days. It sucks.

That’s pretty much it. Today’s been a crap day…PT was a bitch for my shoulder. Despite my increased functionality and range–to some extent–the pain has not reduced. It’s very frustrating. The PT keeps telling me I’m improving and doing well, but my pain is still there and so I feel kind of defeated.

Blerg.

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Test results update

I’ve completed recent tests and received all the results.

Neurology
Neurology tells me my blood work is completely normal, which tested for myasthenia gravis and muscular distrophy. My EMG was “long and thorough” and normal. My first and follow-up physical exams were normal. In our follow-up appointment last night, the doctor finally admitted that he was looking for signs of MS–which he says he didn’t mention prior because he doesn’t like to frighten patients–but found none. After he said that, he said he could suggest a brain MRI, but found no symptoms to support getting one. I told him I’d had a brain MRI five years ago at an ER visit and that they found no signs of any issues (other than a schwannoma that was then “not found” at a follow-up appointment). He said if it was five years ago, and I was 40, that if I had MS, they would have seen signs of it already in the MRI. So that was even more reason to skip the MRI. His final words? Wait it out, see if any other symptoms come up, and go out about my life. He said I could try seeing a rheumatologist, but it seemed like a half-hearted suggestion.

Allergy
I saw the allergist on Tuesday. He was very nice, listened to everything I had to say and asked questions. He told me up front he didn’t think the fatigue/exhaustion was related to allergies, but said it was worth finding out what kind of allergies I had going on. He didn’t seem to understand my wheat “allergy” and asked a lot of questions…including when I told him that I’d been gluten free for at least twelve years, he said “and you’ve never eaten just a bite of anything? not even cake or cookies?”

W.T.F.

Would he say that to someone who had a reaction to peanuts in the past and thought they might have peanut allergies? “Not even a peanut butter cup? Not even half of one?” It was a little frustrating. I’m not sure if it was because I’m fat, or because he didn’t think the “allergy” I had was important enough? Either way, I just said, “No, it makes me feel incredibly horrible and I saw no reason to do that to myself on purpose when I knew what the cause was and it could be avoided.” He accepted that and moved on, but I suspect he didn’t really believe me. He tested me with the skin test, both a needle and a “scratch” test (not at the same time or in the same spot), including tests for wheat, rye, and barley. I had no reaction to any of the needle test–including zippo response on the wheat–but the scratch test (which is more “invasive”) popped “mildly” on dust mites. He did not test me for wheat on the scratch test… However, I will note, that when they did the scratch test version, within five minutes of them doing it, their “histamine” scratch area gave me the same response as what I get to eating wheat. My face started to get red and hot, as did my ear. When we went back so the nurse could read my results on my arm, we told the doctor, and all he said was “interesting.” But for me, it shows me that THAT response IS my histamine response, and points back to the wheat giving me a histamine reaction. In the end, he noted it as an “adverse reaction” to wheat reported by the patient. WhatEVER. I read that both skin and blood tests for allergies are only 60% accurate anyway.

Gyn/Oncology
I had my CT scan last Thursday. For the first time, I had terrible stomach issues after drinking the barium, which sucked. I made it to the radiology office, had more stomach issues, then had to stand and talk to the check-in person while she figured out what needed to be done. Then I had to go wait because they wanted to call my doctor’s office to confirm they didn’t REALLY need without contrast as that causes unneeded radiation in my particular case. When they finally got through to the doctor and recalled me to the check-in station, I was then informed that I had to pay for the CT Scan because I hadn’t met my deductible and that I had been notified ahead of time that I would put down a couple of hundred dollars in advance and follow-up the remainder payment later. I had been told no such thing…and I was PISSED and tired and felt like shit and I paid the advance because I needed the test and so what was I supposed to do? The woman doing the CT was SO NICE y’all. She really took care of me, was kind, and helped me work with my impinged shoulder. When we were done, I went back out to where my father was waiting for me in the car because I haven’t been driving myself due to my leg weakness and my imbalance and fatigue. The radiologist said my doctor would have my results by the next afternoon, but I heard nothing. I spent the weekend feeling mild terror, because when I was diagnosed with the cancer, my oncologist actually called me on a Sunday  night during dinner. It was like a little bit of PTSD to get through dinner Sunday night, but no phone call came. I finally found the results online at my oncologist’s portal on Tuesday, which said the scan was clean. Oddly, I never got any notification or update directly from the doctor, which was unusual for him.

Insurance bullshit
As it turns out, apparently the radiology center was correct and I had to pay my entire deductible for the scan because I have SHITTY-ASS INSURANCE (this is new insurance for us since May b/c Hub changed jobs). I’ve never had to pay anything for CT’s or x-rays or blood work when I go to a lab/radiology center. And I also see now having inspected the insurance more deeply that they don’t even cover 3D mammograms. And not only do I pay deductibles for all this shit, but I also have to pay 10% co-insurance. Let’s not forget that I have a huge deductible for out-of-network which means they aren’t even close to covering any of my sessions with T. I seriously thought that we had the most obnoxioiusly horrendous insurance until Hub got a job offer from someplace new and we found that they were offering something called an EPO, which would cost us $50 more a month than we’re paying now and offer us waaaaaay  less coverage. Apparently EPOs are the “new” thing that are essentially HMOs without needing referrals to see specialists, plus they have higher deductibles and cover fewer things. And insurance companies are suckering people in because they think the EPO is more like a PPO (higher level of coverage and out-of-network coverage) when in fact they are more like HMOs. So insurance companies are yet again screwing customers with lies and deceptions. Woo-hoo. Hub, in fact, turned down the job because of the health insurance and was then told the next day that he was the second “high profile” candidate in recent weeks to turn down positions because of the health insurance.

Primary care doctor
My last appointment with my PCP left me with the suggestion to go see a sleep doctor and/or the infectious disease doctor for chronic fatigue syndrome. She also told me she won’t write a note to the insurance company that indicates I have myofascial pain syndrome without me coming back in for yet another appointment–which will cost me even more money–so that insurance might consider covering some small portion of my trigger point therapy. (Neither would the neurologist, despite the fact that MPS is supposedly a neurology classified syndrome AND I was IN HIS OFFICE when I asked him.)

And so, here I am, in the same place with no plan forward. I am pushing myself to do more to see if I can just IGNORE the symptoms away. My imbalance is bad and I’m struggling to keep myself upright. I DID drive myself to PT on Monday, but it is literally five minutes from my house, on two roads that see minimal traffic. When I talked to my PT person, she said she had a client who was diagnosed with a virus who had horrible fatigue for over a year…but that after that she was fine.

I am burned out on doctors. I don’t know what I’m going to do now. Wake up, step forward, keep going. Try not to let my anxiety get the better of me as much as it has. Accomplish things when I can and celebrate when I do. Rest as needed.

 

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Viral return (not)

Friday of Father’s day weekend, I was back in bed shortly after lunch. It was reminiscent of that time period starting in February and lasting through to May, when I was then diagnosed with a sinus infection. At the time I was diagnosed with the sinus infection, I began to wonder if the “down” period I’d been having–which was being blamed on a virus by my doctor, and grief by my therapist (and me)–was actually the result of the sinus infection. Shortly after the anti-biotics started kicking in, the fatigue started going away. I was not splayed out on the couch all the hours I was “awake”, and I wasn’t falling asleep in my food. So I came to the conclusion that it was the sinus infection knocking me out, and I went about my life.

But the 16th, it hit me just after lunch and I ended up going back to bed shortly after eating some soup. I had plans to go out with my brother and his new girlfriend (our first meeting with her) Saturday night, but the way I’d been feeling on Friday, I wasn’t sure I could make it. I spent most of Saturday in bed again, feeling exhausted but not sleeping. It was so frustrating. I was nauseated almost all the time, felt off-balance, weak, and just plain worn-out. I hauled myself out of bed to go out to dinner with Hub and my brother and his girlfriend, but basically felt like crap all evening. Sunday was Father’s day and we were supposed to go over to my father’s for a cookout. I stayed in bed most of the day with the hope that I would have enough energy to make it through the evening at Dad’s. I didn’t do much of anything once we were there, I ate very little (which was how I’d been eating since I started feeling shitty, because the nausea is so bad that everything looks and smells gross…), and we stayed only long enough to eat, chat a bit, and that was it.

Monday morning I made an appointment to see the doctor again, but instead of staying in bed, I tried to go back to my normal routine. All the times I’d been in bed, I wasn’t sleeping…I was just lying there thinking of how tired I was. It felt stupid, so I decided to just stay awake in my recliner and try to act as normal as possible. As the day went by, I decided that I needed to get back to my cardiologist. The extreme fatigue and nausea and weakness was enough to spur me to make an appointment with him, even though I doubted it was a heart issue. I didn’t want to wonder, and it’d been a year since I’d last seen him. I decided that there was no reason for me NOT to go see the cardio, so I made the appointment.

As it turned out, I had both appointments on the same day, one in the morning and one in the afternoon. I saw the cardio first, and even though there was a scheduling snaffu, they saw me anyway. The doctor did his regular exam, talked to me for a bit, reviewed my tests from my primary earlier in the year, and did an EKG. He said he saw nothing to suggest there was a heart issue, that my test and exam were both normal. But, he said, since I’d had the stress test last year, he suggested I go ahead and get an echo-cardiogram to round out the cardiac testing. So they set me up with an appointment for this week (tomorrow) at their other office, which had an opening sooner than the local office.

I went in to see my primary that afternoon. We talked about how I was feeling, then she did HER exam. She asked if I was getting the same *smell* as when the sinus infection was diagnosed last time and I said no. I don’t think I am, though sometimes I get the phantom idea of the smell… But since it’s not consistent like it was last time, I think I’m imagining it as the memory of what it was. Without any other options, my primary suggested it might be allergies. Her thought was to try allergy medications to see if it made me feel better, and then to consider seeing an allergist. Last time when she didn’t know what was going on, it was as virus. This time, allergies.

So I said THANKS, gathered myself and left the offices. I did make an appointment with an allergist recommended by my cousin, who is a pediatric allergist and whose husband is allergic to everything and loves his allergist. Sadly, they can’t see me until mid-August. So I have to decide what to do between now and then.

Although I am still tired, it’s not as all-consuming as it was that Fri-Sat-Sun, and I’m using a homeopathic nasal spray (with capsacin and eucalyptis) to try to keep my nasal passages open and draining. So if there is a potential for a sinus infection brewing, I’m at least keeping the sinuses draining instead of stagnant. It’s an interesting spray, with not as much burn as I’d expected. It does seem to keep my sinuses open, so that’s good.

Prior to all of this, I also saw my orthopedic doctor about my left shoulder. I can’t raise my arm above shoulder height, and moving it in certain directions is incredibly painful. He took an xray, did a physical, and pronounced me with an impingement. I gotta get in to see the physical therapist to start working on it. He said if PT doesn’t work, it’ll be a steroid shot. Ech. I haven’t made an appointment yet because I’ve been run-down with everything else.

July is going to be mobbed. I have my 2 year cancer check, which will include a CT scan after my visit with the gyn onc. I also have a trigger point appointment, I need to get my hair “fixed” for my cousin’s wedding, and…well, I’m going to see a psychic-medium about my Mom. And then my cousin’s wedding. Plus we need to find a dog-sitter for when we’re at the wedding. I’m not sure when I’m going to fit in PT. Ugh. Of course this arm-thing has been going on for several months, so it’s not like I don’t know how to deal with it…

Did I mention the wedding at the end of the month is a FORMAL wedding? At a local Four Seasons fancy-shmancy hotel. I had to find a formal gown (A GOWN), I had to find shoes (I hate shoes), and just tonight we went out so I could get the dress altered because it’s too long and I hate the sleeves. But I liked the rest of the dress and it was on sale so I bought it and just told the seamstress to hack off the sleeves.

AND I’ve been helping my father clean some stuff out of his house for donation. Which means I was also cleaning some stuff out of MY house for donation. Hub and I stopped tonight and dropped off a ton of sheets and blankets (and 2 twenty pound boxes of dog treats) at our local animal control/shelter.

I need a nap.

 

 

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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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The 1st of March

It’s the first of March. It’s the first day of the month during which I lost my mother last year to her cancer.

Yesterday I went to see my massage therapist. It was a long appointment and the therapist worked hard on my trigger points. With all the pain I’ve been in, she really had to do a lot of work on my upper body. Arms, upper chest, shoulders, neck, my entire back, my glutes. I came home feeling exhausted and so weary. I probably shouldn’t have driven home myself but I made it successfully. I had the air conditioning in the car full blast to keep me alert, but I think once I turned into my driveway my brain sort of gave up. I drove up the driveway but…when I turned my car toward the garage so I could make a K turn to park in my usual spot, I went just a little too far. And I hit the garage door. Again. I wasn’t going fast and I didn’t hit hard, but I pushed the already damaged door in just enough to break the bits on the inside that hold the panels to the rollers. I did this years ago (like 3 years?), but at that point I had backed into the garage door and the molding at the edge of the door. I broke my tail light and dented the garage door. The repair guys came out then and just repaired the stuff inside and said it’d be okay. Well, it WAS okay until I hit it again yesterday. The guys came out today and said the door parts were damaged beyond repair and we’d likely have to replace two of the panels. They are supposed to call tomorrow or Friday to let us know the cost. I don’t know what happened…and I can’t believe I hit the garage door a second time. I guess I’m thankful that this time I didn’t damage my SUV and that Hub couldn’t have cared less that I hit the garage. He was more upset that I was so upset with myself. We can’t use the garage until we get the repairs done, which doesn’t really affect me because I don’t park in the garage but it means Hub can’t put his car in the garage. Again, he’s totally not upset about the damage, but I am.

So I haven’t been sleeping much at all for the last six weeks or so because of all the pain I’ve been in. I slept about an hour or two (fitfully) Monday overnight to Tuesday because Hub went to an overnight sleep study at our local hospital. Tuesday I had my massage therapy, and Tuesday night I was in extra pain from the trigger points she worked on. Today, Hub worked from home and I spent most of the day on the couch trying to find a comfortable position. I’m not sure I’ve tried to describe this before, but when my massage therapist works on trigger points, I am often left with a feeling of horrible bruising (without any bruises) and like I am resting on golf balls that are pressing right on the bruised points. All my body weight right on those bruised spots with hard golf balls pressing right into those spots. It’s painful. Even moving is painful. The best thing I can do is not move. Find a position that doesn’t put too much pressure on any of those spots (and they are numerous and spread throughout my back, arms, shoulders, and butt) and then don’t move. So I was stretched out on the couch while Hub was working nearby and everything is hurting…and I start crying. I’m exhausted and in so much pain and I just feel overwhelmed.

And I’m sad. I miss my mother so much every single day. And I know now that March was the beginning of the end for my mother last year. And I’m thinking of the things we were trying to do with Mom last March…and how fast it went in the end. The tears just came and I let them. I feel so sad. And lost. I can’t believe it’s been almost a year. I can’t believe how much time has passed without her. How life has gone on for so long without her. It hurts. Physically and emotionally and mentally I am just exhausted and sad.

 

 

 

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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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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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