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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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Shock and OW!

I know that I said previously that I wouldn’t be seeing the neurologist for my EMG until September, but that changed.

I had such a terrible weekend. Saturday I basically did nothing because I felt so weak and tired. We went to bed at our regular time that evening, but at 12:30am Sunday morning, Hub and I were awakened by SCREAMING smoke alarms. In our house, all our smoke alarms are interconnected, so if one of them detects something every single alarm goes off. Not only does it make that horrendous alarm noise, but it also yells “FIRE! FIRE! FIRE!” I literally sat straight up in bed and hit Hub in the chest to wake him, then I turned the overhead light on. The dogs were freaking out, I was trying to get dressed, and Hub was trying to unhook himself from his CPAP machine, all while the alarms are screaming and yelling, and the dogs are running around the bedroom (we keep them closed in with us at night). We finally are semi-dressed and have shoes on and we open the door to the hallway and the screaming gets louder because there are more alarms in the hallway and in each of the bedrooms. I tried to get the dogs downstairs to give them treats (they always get treats when there are loud noises) while Hub tried to silence the smoke alarms (the dogs are still freaking out and Butthead races into her crate and won’t come out even though there’s an alarm nearly over her head still screaming). We don’t see or smell fire anyway, but Hub goes to investigate the whole house while I retrieve Butthead and rush the dogs outside and away from the noise. When Hub comes outside he tells me he has ripped down several of the detectors and the noise has stopped. I’m not happy, I’m afraid that there’s a fire in the attic or in the walls or there’s CO2 somewhere and that’s why the alarms went off. So at about 12:45, I find and call the non-emergency number for the fire department, and I explain what is going on. They take my address and say they’ll be out to the house shortly…and while we’re waiting the alarms go off again, so Hub rips MORE detectors off the ceiling and when the silence reigns again he takes the dogs into the basement so they can’t get out of the house and I go outside to wait for the fire department. To try to shorten this story–which really has nothing to do with this post–the firefighters come out to the house in the middle of the night, and after inspecting the entire house, they figure out that ONE of the smoke detectors has malfunctioned. And because it was wired into the “system”, it sets off all the other detectors in the house. Bless them, the firefighters were pretty awesome, and by 1:30am, they were walking back down our driveway in the darkness to load back up onto the firetruck they had left in the street. We were awake, trying to re-settle the dogs and ourselves, until about 2am.

Okay, so Sunday night I pretty much had a bad breakdown. I was just sobbing over how bad I was feeling and how tired I was and how afraid I was. I felt like I was getting worse, that my weakness was worse, my fatigue was worse, my imbalance was worse, and that now I was having trouble with my hands/arms and not just my legs.

For only the second time in the four and a half years I’ve been seeing T, I actually contacted her to seek guidance and help after-hours (or out of a normal session). The only other time I’ve done that is when my mother died. I am so grateful and so lucky that she took the time to talk to me in email (which is how I contacted her). I can’t say anything got resolved or that I even felt “better” in that moment, but knowing someone was out there to reach for–and who would reach back–was enormously helpful. Yes, Hub was here and he was being supportive, but this time it took a more confident and experienced communication.

When I finally caught my breath, I was so exhausted from struggling during the day and crying for hours that I went to sleep at 9pm. When I woke up the next morning, I called to see if my primary doc could see me, even though I didn’t think it would be helpful. They were able to fit me in just before lunchtime, and Hub took time off of work to go with me. After that phone call, I called the neuro’s office to see if he had any cancellations where he could fit me in for my test. The receptionist said no right away, because she had just gotten off the phone with someone else asking the same thing. So I asked to leave a message for my doctor, and I told him I was feeling worse and that I was having trouble with my hand/arm. He called within thirty minutes and fit me in for the EMG for two days later (that’d be today).

I went to my primary, who said she didn’t know what else to do for me except to send me to see a sleep doctor to see if I was having some kind of sleep disorder, and also to an infectious disease doctor to talk about Chronic Fatigue Syndrome. We were sitting in her office and I was so damn tired and frustrated that I literally put my head down on the edge of her desk and tried not to cry. She asked me what was going on and I told her, I was exhausted, frustrated, and scared. She immediately asked me if I was depressed. I was both annoyed and frustrated with this, because ANYONE in my shoes, with this length of exhaustion and weakness, and not knowing what was wrong, would be afraid and sad and upset. I thanked her for the offer but said I wasn’t ready to do that right now. She told me to try to stop focusing on my symptoms because I would surely make them worse by doing so, and to continue with my neuro appointment.

After that, we ran off to get my blood work done for the neuro and then we went home. Fast forward (cuz this is soooooo long), I spent most of today trying not to think about the test and/or what it might or might not say. I semi-obsessively check my laptop to see if my blood work has come in while trying not to spend time searching Dr. Google. We finally head off to the neuro office and within about ten minutes we are back in the testing room. I had read a little about the test(s) and heard both that it was no big deal and that it hurt like a mo’fo. I think I ended up somewhere in the middle.

The neuro doctor is very quiet in general, so there was almost no talking. The room had to be like 85 degrees, which I assume was on purpose because some of the testing is on muscles and maybe the heat keeps them relaxed? The first part of the test was where they put some thingys on you and then send an electric shock through certain nerves. The second part they use needles, stuck into your muscle, to record some kind of feedback. I asked what the needles were like and was told they are thinner and shorter than acupuncture needles. When he started zapping me with electricity, I asked if the needles hurt more or less, and he said “there’s no electricity with the needles” and went back to his zapping. So after another few minutes of silence and him randomly saying “zap here”, I ask him if his patients say the electricity is worse or the needles, and he says “it goes both ways.” *sigh*

The zaps range from a slight sting to a full-on-stick-your-fingers-in-an-outlet zap to OH SHIT THAT HURT LIKE A MO’FO. Fortunately, they are pretty quick zaps–up and down both legs in multiple places and along one arm and hand–and within about forty minutes we are moving on to the needle part of the test. He actually started with my arm and it really wasn’t all that bad, as long as I didn’t look at what he was doing. When he moved to my first leg, it was fine until he went into the inside of my calf and then it HURT. Especially he had trouble finding the right spot to be in and he had to sort of shift it around and push harder and that was pretty bad. The same issue happened with the other leg, but then we were pretty much done. After I got dressed, I asked him if he saw anything and he only said, “nothing jumped out at me” and said he’d have to go through all the data that had been collected during the test in the computer. I asked if there was anything I should or shouldn’t be doing, and he only said to stay hydrated and to rest. He scheduled us to come back for a follow-up for next Wednesday, so I have a week to sit and wait…

Tomorrow morning I go in for my CT Scan for my cancer follow-up. My father is driving me because Hub has to be in the office and I feel so weak and off-balance that I am afraid to drive myself. Friday I have a massage therapy appointment, which I hope I can get to, and I might have to have my father drive me again. I had cancelled my PT appointment for this past Monday because I didn’t think I’d be able to do it. I hope I can return to it this coming Monday, because I need to continue to try to make progress on my shoulder.

For now, I have a headache and I think I need to go to sleep. I have to get up early to start drinking the crap for my CT Scan, so off I go.

 

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The weekend of (and a hairy tale)

I had my appointment with the psychic medium yesterday, but this post is not about that. I will post about it, but I can’t handle it right now.

This past week I had my hair color-fixed at the salon, and I ended up doing a purple-wine color, with blue underneath the major fall of my hair. It’s a little hard to see the blue because I’m wearing a blue shirt. You said “duh” but I honestly wore it in case I had any blue dye drippage, I figured you wouldn’t notice on the shirt. (the hair stylist took this photo outside of the salon)

redredwinehair2

And this is the photo I took indoors a few hours later. Sorry, I still have a thing about privacy and I couldn’t get pictures of the back of my head because my shoulder doesn’t cooperate these days.

redredwine3

 

I was surprised at how nice my hair looked considering how shitty the texture was prior to the dye-job. I asked her not to trim the “crispy” ends because I’m getting an updo for the wedding and I wanted the extra length for that. As it turns out–so far–the ends were far from crispy after I was dyed and washed. She said the demi-colors that she used were conditioning (and so is the blue, which isn’t demi), so here’s hoping. At present, I’m sitting here with a treatment on my hair prior to the first wash after the dye-job. I hope my hair isn’t in horrible shape after the wash in another half an hour.

Anyway, I like the colors, I’m just feeling a little shell-shocked at how I look with dark hair again. I’ve been living with the washed-out hair for so long that the dark color is DARK. It also drives me kinda crazy that I can’t ever make my hair look like it looks walking out of the salon. I know that’s a very common complaint for women, but shit…look at that hair on the first picture. It looks so soft and bouncy and shiny and lovely. It’s a trick, people! Stylists are witches…I’m telling you. They have some kind of voodoo magic, that’s why none of us can ever replicate it.

So yesterday, the appointment with the psychic. Last evening, I was tired. I slept really crappy last night, woke up at 6am to my father’s barking dog outside…and I never got back to sleep. I’ve been feeling crappy all day today. I basically sat in my recliner all day and tried to do nothing. My face and my head and everything felt swollen and stuffy. I don’t know how else to explain it. Like when you go through a pressure change? And then later, as the day wore on, I started feeling off-balance and that terrible exhaustion creeping up on me. When I got up to eat dinner with Hub, I really felt tired and off-balance and nauseated and I had trouble walking. I was upset after dinner because I knew I had to rinse my hair and then put the treatment on…and then wash the treatment from my hair.

And I’m worried about tomorrow. I’m supposed to go with my SIL and my nephew’s girlfriend to get updo’s done for the wedding. I don’t know if I’ll be able to do it. I’m not even sure how well I’m going to make it through the wedding. I feel so shitty…the wedding is supposed to be like five hours long… I’ll try to do nothing in the morning in the hopes I can make it to the salon and then to the wedding. I had hoped to do my nails tonight, but that’s out. Sucks more than I expected because I think my fingernails are a bit tinted blue from putting the treatment into my blue hair. I hope when I go to wash my hair that the blue tint won’t get worse. I’ll be at the wedding with blue-tinged hands…yay. Maybe I shouldn’t have waited until today to wash my hair for the first time since getting it dyed, but I was trying to keep the color fresh. Oh well…

The worst part is how bad I feel physically. Is it because of the emotions that came up yesterday with the psychic? Is it the wedding tomorrow we’ll be celebrating without Mom? Is it having family in town (and staying with us) without Mom? Or is it my physical health is just shitty? Did I eat something wrong? Is it a combination of all of the above?

Well, I hope when I get my hair done tomorrow I can get a picture of it. I wanted to have the blue peek through a little with the updo just for fun. We’ll see how it comes out. And hopefully I make it through at least the ceremony and the dinner. I’ll call it a success if I can do that…anything more than that will be gravy.

 

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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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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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What am I going to do

I’m still feeling lousy. There are days when I barely have the energy to do anything, including feed myself. I force myself to get up, do things, take care of the dogs and myself. In between, I rest. I get outside with the dogs for a 10-20 minute stroll every day around the yard as the weather allows so I am at least moving somewhat. I’ve read a couple of books and I’m trying to do some crocheting in small doses.

But I feel lousy. My imbalance, the nausea, heartburn, fatigue, pain…it’s all still here. Sleeplessness, heat intolerance…I’m hot and cold all the time. Sometimes I feel sweaty when there’s no sweat. Sometimes my hands and feet are sweaty and clammy. Today I have tingling in my fingers and face. And always the pain in various parts of my body. Both shoulders are bad, and for one of them I can’t lift my arm up above shoulder height. I’m eating small amounts of food and feeling full, then feeling hungry again later. Rinse and repeat when I eat again…small amounts of food and feeling full, then hungry again.

Our health insurance doesn’t kick in again until May 1st. Even so, the last time(s) I saw my doctor, she found nothing troubling. It could still be grief. I’m sad a lot, but I’m also exhausted a lot. Sometimes I’m not sure if I’m sad or tired. This stuff has all been going on since the beginning of February. It doesn’t seem as if it’s going away…it’s coming up on three months. I can’t imagine it’s just going to disappear anytime soon.

As if I didn’t have enough to think about, the biggest issue looming is that Hub is flying to California soon for his sister’s wedding. He’s going to be gone for five days. And I’m going to be alone, having to take care of myself and the dogs 24/7 for those days. I’m going to be in this big stupid house all by myself, day and night, for five days. I’m going to have to be up early to feed the dogs, and then I’m going to have to be up and alert late to make sure they get out at night before bed. And then I’m going to be alone overnight in the darkness. I haven’t been alone like this since before I first got sick over 17 years ago. The last time Hub traveled–maybe eight years ago–I stayed with my parents with the dog we had at that time so they could help me.

But it’s different now. My mother is gone, and she’s the one who kept everything in line in their house. My heat intolerance is bad and Dad still keeps their house too hot for me, so I’ll feel horrible all day and not sleep at night. Butthead is difficult to keep track of, and I can’t trust my father or my brother to make sure she’s not eating things in the yard late at night or early in the morning.  The friends I have who are local have their own lives, work, families, pets, I can’t ask them to come help me. I considered hiring someone, but having a stranger in the house while I’m here alone is frightening to me. I’ve considered staying up all night and sleeping all day, but the dogs go out multiple times during the day so I’d have to be awake and dressed to do that repeatedly during daylight hours. That means no sleep at night and basically no sleep during the day. I could try to sleep at night but being alone in the house overnight is scary for me and I’m not sure I’ll sleep. Not sleeping will, of course, make everything worse.

This all makes me feel like an invalid. But I’m honestly afraid to be alone 24/7 for five days. I don’t know how I’ll deal with pain and anxiety and exhaustion without any support or reprieve from taking care of the dogs and myself. There are moments when I think I will be able to handle it, and then there are moments when I am positive I won’t be able to handle it. The truth will probably live somewhere in between, in the end. I have avoided thinking about this since February, when Hub bought his tickets, but it’s coming too soon for me to keep pushing it aside.

 

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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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