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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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Ice in pictures

We had a mild ice storm here. I say mild because it was mostly overnight and by the time most people had to be on the roads, they were passable. But it made for pretty pictures. So here are a few I took. You have to click on the pictures to make them bigger to really appreciate the sparkling-ness of these icy trees.

These are from four o’clock in the afternoon when it was around 34 degrees and the ice was melting and the skies were blue.

Blue skies ice

Blue skies ice 2

Blue skies ice 3

Also, some from some really iced over trees earlier in the day.

Icy branches

And also a baby deer!

La la la la la la la lah! Who's that baby deer on the laaawn there!

La la la la la la la lah! Who’s that baby deer on the laaawn there!

Meanwhile, in anxiety news…I drove to PT today. Even though our driveway was icy, the roads were wet and somewhat slippery, and ice was dripping all around. I had to scrape every window on my SUV before I left for PT, but I did it. This is a big one for me, because I HATE driving on wet roads and I was never comfortable driving with potentially icy roads out there, even when I was well. So I’m really proud that I got out there and did it.

 
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Posted by on February 7, 2014 in anxiety, driving

 

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A year ago

A year ago at this time, I was on the down-slide of my “Prilosec-fever.” I was at the beginning stages of lethargy, I had already cut out all carbs and sugar–cold turkey–and I was falling deeply into depression. I ate very little and was barely leaving my bed. I was paranoid and having panic attacks. I had no idea what was happening to me, but it was both physical and psychological. I thought I was going crazy…I thought my brain was broken, along with my body.

Today, I’m driving and taking care of a lot of things due to my husband’s ankle problem (poor boy is in a walking cast now). I’m cooking for a get-together on Saturday, I’m grocery shopping without Hub (something I hadn’t done in years), and running errands on my own. I’m going to PT twice a week and seeing T every other week…driving myself to nearly all appointments. I’m doing laundry and taking care of the dogs, traveling out of state with family, and a few weekends ago I helped my parents setup for, run, and breakdown a yard sale.

And I’m still afraid. I’m afraid that this is all temporary and any day I will fall backwards into the pit I was in a year ago. I’m SO much more mindful of things today, of where I am physically and mentally, but I’m still afraid. I let these thoughts drift through my consciousness, but I don’t linger on them. I don’t want to dwell, I want to live in the moment and move forward in the state I am in now. I try very hard. I often wonder if other people have to try this hard to be “normal.” (whatever “normal”  means.)

I still struggle with fatigue and anxiety, don’t get me wrong. But when I look back to where I was a year ago this time, I am grateful for the progress I’ve made. Last year on Christmas eve I was in the ER, in tears, sure I was about to be committed. No one knew what was going on with me, even there. They sent me home saying I was dehydrated and needed to eat more. They sent me home thinking I had a horrible tumor growing in my brain that they would do nothing for unless it began to impact me significantly (a diagnosis that was later redacted…after I spent weeks and weeks freaking out). I still struggle with pain from my chronic illnesses, and I still get down more than I’d like.

And Hub has pointed out–and I see it myself now–that I do get short with people sometimes. I feel like I have reasons for getting exasperated with people, but Hub disagrees with me. He says I get that way without any reason he can see, but a lot of times I don’t tell him why I’m annoyed because it’s him or something he has done. But I am at the point where I pick my battles and the rest of the time I don’t want to start anything with him. It isn’t worth the energy or the aggravation, but apparently I’m still letting my annoyance show. I’m trying to work on that. I know I have this issue with my mom sometimes, too, but with the same explanation. I really really dislike (see “hate”) when she asks me three or four times in one conversation if I’m OK. Just because I’m not ebullient (fucking cheerful) all the time, she worries…and so she asks repeatedly if I’m okay. If I say YES the first time, don’t ask me again. It really aggravates me to no end. And I have told her this, but she doesn’t seem to get it. I don’t want to fight with her, but again the annoyance comes through, and i hear it, too. It is something I will continue to work through.

So I’m a work in progress. No shock there. But I am far forward from where I was last year. Thankfully.

 

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Day down the drain

This has been a crappy crappy day.

It rained. It was raining when I woke up, it was raining when I had to go to PT, it was raining when I got home. I was going to drive myself to PT in the rain, but by the time I had to leave, it was pouring so bad that I chickened out and had to ask my mom to take me. She didn’t mind, but it made me feel like a failure for not driving myself. I hate driving in the rain–I worry so much about spinning out or sliding, both of which I’ve done in the past–even back before I got sick. I had a car that was notoriously bad in rain and snow and one time just on wet pavement, I did a 360 degree spinout…with cars rushing by me. I hit my head on the doorframe of the car and freaked myself out. So although I’ve driven in the rain a few times, today it was coming down really hard and I just couldn’t do it. PT was okay, but by the time I was done, stuff hurt. And it was still raining when I got home and my poor dogs didn’t want to be outside. Le Moo hadn’t peed since dinner time the night before and I just kept begging her to go out and pee already. (She finally did at about 7pm today…that’s 24 hours!)

So when I get home from PT, Butthead is acting funky. And two days ago she puked all over my freshly cleaned family room carpet, so I was worried about her. And Hub and I are trying to figure out why the hell the stairs going down to our basement smell musty and gross. I’m worried we have a leak behind the drywall or something and that mold is growing in hidden areas. And I’m worried what it’s doing to my health and what repairs are going to do to our wallets. So Hub makes an appointment for someone to come inspect tomorrow (when I’m home alone btw), and 2nd appointment for Monday evening. So I get to deal with the dogs and some stranger tromping through the house tomorrow.

Then Hub gets home and he tells me that if the government shutdown isn’t over by Tuesday, he’s going to have to take paid time off…and he can only go in the hole for 40 hours (he has 2 days saved up). After that, it’s no pay. And even after the shutdown is over? They only have 30 days of work left for him. They’re looking “really hard” to find him more work, but at this point I don’t see that as likely. So I’m scared shitless he’ll be out of work and we won’t be able to pay our bills. He’s only been with this company since June and already they’re letting him down. I’m so pissed and angry and scared. His foot is still bad and not getting better…and if he loses his job we’ll be without health insurance. We can’t afford to be without health insurance between his issues, his medications, and all my issues? Fuck, I want to curl up in a ball and cry. And you know what Hub says to me? Don’t worry. I’m worrying enough for both of us. To which I tell him to stuff it, that there’s no way I can’t worry about this stuff. And he tells me it makes him feel worse to know that I’m worrying, which makes ME feel worse. ARG.

So then Hub goes down to the basement and tries to come back up on our elevator. And gee, guess what? The elevator ain’t working. So he tries to reset it, but that doesn’t work. So I go downstairs to reset it (because I’ve done it before and he hasn’t) and that doesn’t work either. I climb the stairs (on unhappy knees) back to the bedroom to find the paperwork on the elevator and I make the after-hours phone call. I left a long, rambling, sad message for those poor people, finally just asking them to call me the next day. I’m so fucking tired and feel such a heaviness, I have no idea what I said on the freaking voicemail. But the bad news is, we have no repair contract on the elevator, so whatever needs to be repaired is going to be out-of-pocket. A hit to the wallet we don’t need right now with Hub’s job hanging on the way it is.

Bad day. Bad, bad, fucking day.

 
 

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More pride

So you may have seen that we bought a new car. I haven’t really been driving it–the Hub gets that privilege–rather I’ve been driving our SUV to PT and on whatever errands I’ve done along the way. But yesterday my mom asked if I wanted to go over to my brother’s house to see the work he was doing on his kitchen (new tile, new cabinets, new paint)…and I said yes. I’m always up to see home renovations. And because I felt like I could, I offered to drive us both in our new vehicle so my mom could see how it drives and rides.

So although I’ve only test driven it twice, I buckled myself in and fixed my mirrors, and off we went! My brother lives about twenty minutes away, past my PT and T’s office. As we were driving, my mom and I were talking that we didn’t remember the last time I drove her somewhere. And we discussed how well I did through the High Holy Days, although she said she held her breath through all the services since she, too, remembered what happened last year. Anyway, I drove us to my brother’s house, we got to see the work he was doing and he got to see my new car, and I drove us home. Through neighborhoods and streets I’m not familiar with, in and out of a tight driveway, things like that. And it went fine, I had no problems and pretty much no anxiety other than what I would consider to be normal driving caution. I didn’t even have any weird thoughts about having odd accidents or anything.

I’m still getting familiar with the new car. I enjoyed driving it, but the gas pedal is touchy, so every time I adjusted my foot the car seemed to leap forward. Our SUV is not that touchy on the pedal. I’d like to get to drive it more often, but I hate to take it away from Hub because it has all the new fun bluetooth and radio technology that he loves. So we’ll see.

Anyway, proud of myself for driving me and Mom around without incident. Hope that I can continue that trend because I’d like to relieve my mom of doing so much driving whenever we go out anywhere. She IS getting older, and I’m sure it’d be nice to be chauffeured once in a while.

 
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Posted by on September 26, 2013 in anxiety, driving, family, pride, strength

 

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Pride

Yesterday I had PT. I took the SUV to my appointment as usual, went through the work with the Physical Therapist, then did my exercises with the therapist assistant. They had me doing some more intense work, trying to get the muscle really strengthened. We tried this set of exercises before, but it inflamed the muscle too much and had to put it off. Now we’re trying again. I hope we can continue with it.

After PT, I went to Wegman’s. Those of you with anxiety will understand. Wegman’s is large and overwhelming to those who don’t have anxiety…for those of us who do it’s like sensory overload. So I went to PT, driving myself, then drove to the Wegman’s and parked (anxiety-inducing as it is a parking garage with tight lanes and tight spacing!), then went in to pick up a couple of items. Here’s the thing…I don’t shop alone. I’m barely getting back into driving alone, and a few times I’ve stopped at a clothing store on the way home, but it was small and familiar. Wegman’s is large and we’ve only been 4 times since it opened. So I grabbed a small cart and headed for the gluten free section to find my bread, which was the main reason I was stopping there. After that, I started heading around to other areas to pick up some stuff for my mom and a couple of things that we can only get at Wegman’s. I didn’t rush through, I didn’t panic, I didn’t even get the flubadubas (which I generally get even when I go there with Hub). I made my way around the store to get what I needed and headed for the checkout.

It was busier than I had anticipated and the one checkout where there was only one person in line? The woman was wearing a surgical mask. Of course that could mean she was sick and trying not to pass her germs…or she was immune-compromised…or a germaphobe. No way to know. But despite a moment of health anxiety cropping up, I pushed my cart up behind her and started loading items onto the belt. She finished with her checkout and I got up to the counter and did my thing…and pushed the basket out to the parking garage. I loaded up the SUV and squeezed my way back out of the parking spot (next to a huge post and I was able to avoid taking off my side view mirror) and headed home. I made it home unscathed, brought the packages in and unpacked everything.

And I was done. I went to Wegman’s alone. Drove there, parked there, shopped there, drove home. Alone. By myself. Without even a ripple of anxiety. I can’t tell you the last time I did something like that…and I’m so fucking proud of myself.

 
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Posted by on September 17, 2013 in anxiety, driving, pride, strength

 

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California Dreamin’

Okay, so I’m nowhere near California, but the dream thing is relevant.

I’ve talked before about the snake dreams I have all the time. The other dream I have repeatedly is of being unable to find the path where I need to go. Usually it’s in a car and I’m driving and I pick a direction and it turns out to be wrong. Like, the road goes in the complete opposite direction even though I think I’m going in the right direction, and said road has no exit for miles and hours and getting back to where I started is a long trip. Sometimes there are toll booths involved and I have no money. Sometimes the roads are familiar and sometimes not. Sometimes it’s the same road and “wrong” path that I’ve seen in previous dreams. Sometimes it’s at a mall parking lot and I find my car, but can’t find my way out of the lot.

Had one of those last night/this morning. Driving a car and I couldn’t decide which exit to take so I panicked and took the one I thought was correct but it turned out to be wrong, of course. And there was no exit to turn around, no place to turn around, just an endless stretch of the wrong direction.

It makes me feel like no matter what I’ve done or what I’m doing, I’m still going in the wrong direction. I’ve had these dreams for probably close to 10 years, though I don’t recall having it in this current house so that’s been about 2 years. So why now? What am I suddenly doing wrong that I’m taking the wrong path?

Does anyone else pay this close of attention to their dreams? Looking for meaning where there might not be any? Or is it just me?

 
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Posted by on July 7, 2013 in anxiety, dreams, driving

 

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