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Category Archives: self-critical

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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Hairy tale (follow-up)

Because I need validation. I NEED VALIDATION.
(origin story post)

Inspiration photo:

 

The pic that Hub took of my hair:

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VALIDATE ME!

Makes me so mad that I paid for the above mess ($50 with tip). And see how in the above picture the side is sort of softly swooped away from the face in sections? I got none of that. He just pulled my hair back in a flat comb-back (don’t have a good picture of that part). And I got no soft curls, no romantic fall of hair…I got a bird’s nest. I wanted it up off my back because my dress had a kind of low back and I wanted it to show, but I didn’t get that either. And for the record, I told him all of this…and showed him the damn picture.

I know, I should have said something, but I couldn’t see ANY of my hair until we were done (he had me facing away from the mirror)…and by then we were already running so late that when we got home, I had thirty minutes to dress and do my make-up. I couldn’t stop to have him re-do, and I honestly was so freaking exhausted at that point that I didn’t care. But the more I think about it the angrier I get. I spent my time and energy not only finding someplace to go with my SIL and nephew’s girlfriend, but then I spent my waning energy by going there and having my hair done.

We had appointments for two of us at 1pm and the third person at 2pm. When they called to confirm on Saturday, they only had the first two appointments, and my appointment at 2pm was suspiciously canceled (they couldn’t figure out why or how it got canceled). The person on the phone re-added me, said they had plenty of time for me in the schedule, and that all was well. When we arrived at Ulta at 12:45, they had two stylists on duty and one of them was knee-deep in a wedding updo and makeup job. So they started with the SIL (who had to leave earlier than we did), and when the other stylist freed up (over an hour late), he started on my hair. He saw my inspiration picture, asked to see it again after a few minutes, then seemed to just go and do whatever he wanted. I suspect he has ONE style, that he then either puts UP or leaves half down, because I watched him do basically the same thing he did to me to the other person in my party, but he put her hair up instead of “curly”. HER hair looked pretty good, my SIL’s hair (done by the first stylist) was nice enough. I got a mess of a blobbly, sloppy pony tail with my hair wrapped around the base of it. WTF.

I kind of just want to go somewhere else with the pretty inspiration picture and ask them to do my damn hair so I can enjoy it. Boo.

I guess on the positive side, I had a lot of people compliment my dress and how I looked. I don’t handle compliments very well, so I felt awkward every time someone said something, but oh well. Amusingly enough, my SIL said she had picked out the same exact dress for her daughter’s wedding several years ago, but ended up wearing one of the other options she’d bought.

I’m in a bad mood. I shouldn’t post this blog but I’m gonna anyway. I wrote a review about the Ulta salon on Yelp, because I feel like the stylist just didn’t give a shit about what I wanted and people should know that.

I had a whole list of things I needed to do today, but other than PT this morning and packing up some purses to go back to Amazon (I ordered a “sampling” to go with my dress and kept one), I did none of it. Bleh.

Bleh bleh bleh.

Oh lordie I think he burnt my hair. I thought it was the smell of the product he used in my hair, but I have just washed and conditioned my hair and it STILL smells bad/burnt. OMG what the hell did he do??

 

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I need a minute

I had my hair colored yesterday (more in another blog), which took about two hours. This morning I had to get up early to go to PT (her first appointment of the day) so that I could get to my neurology appointment on time.

This was my second PT appointment, the first with full treatment since initial appointments include lots of time for evaluation and pre-treatment measurements. I’d been doing the stretching exercises she assigned me since Friday, so I have been doing some work. Today, though, she did some more stretching…and it hurt. The physical therapist is a very nice, very low-key woman, who spends most of the appointments so far reassuring me that I will make progress and I will feel better. I’ve told her that I am VERY familiar with PT, as I’ve been multiple times over the years. Even so, she seems intent on keeping up with the reassurances…I guess she thinks she is being encouraging, I’m not sure. Anyway, the appointment was painful and I left feeling sore and tired.

When I got home, Hub told me he couldn’t go with me to the neurologist because he had a big meeting come up at work. My father offered to go, but I really didn’t want to have to deal with my dad’s pushiness, especially with a new-to-me doctor. So I said I’d be okay, and when the time came I headed off to the doctor’s office.

The doctor was on time, which was shocking to me, and his space in the suite was a combo office and exam room. It was a little odd, I’ve never seen anything like that. Normally you are in an exam room or you meet with the doctor in a separate office space. We sat down and he asked me what was happening. I gave him my history as best I could–including the recent bloodwork done that had all come back normal–and told him the issues I was having recently. He asked me a ton of questions, most of which I gave negatory answers to…it almost looked like he was reading from a list on his laptop! He then went through the litany of physical neuro tests–most of which I’ve been through before. When that was done, we sat back down at his desk and he stared at his laptop for a minute. Then he started saying that I didn’t fit in this category (ALS) or that category (Myasthenia gravis) or even that category (Guillain-Barré)…and each time he described WHY I didn’t fit. Having been alone, I tried to remember every reason why I didn’t match those categories, but I was busy thinking “oh, but I do have trouble swallowing!” (but I don’t REALLY) and “oh, my upper body IS weak” (but not REALLY) and “oh, I do have tingling!” (but probably that’s when I overdo or my limb falls asleep). It’s like he was giving symptoms (more than I just described) and I was latching onto them, worrying that maybe I really did have those symptoms and they were just on the mild side and what if I had missed the symptoms??

It was hard. I don’t remember which disease was ruled out by which missing symptom(s). I know he didn’t specifically rule out MS (multiple sclerosis) and I don’t know why.  I was afraid to ask. The final result was the he wanted to start with bloodwork for some muscle thing, and that he wanted to do an EMG (electromyogram). He said he had time to do it later that afternoon or tomorrow because of cancellations, but I didn’t want to do something unknown when I had the wedding this weekend. I said I wasn’t available and at that point the best they could do was schedule for the end of August. So I put it on my calendar and left the office.

I drove home, feeling weak and tired…and so disappointed, even though I really had no hopes for the appointment. I guess some part of me thought something would come of it, but it had to be pretty far buried in my subconscious. When I got home, Hub was still on the phone for his meeting, so he slipped over to greet me briefly. I said I was going upstairs to change my clothes, then decided I wanted to lie down for a while. I called my father to update him, had to listen to him talk about the time HE had some sort of muscle electricity test thingy twenty-plus years ago for a possible pinched nerve, then I stripped and got into bed. I barely settled in when Hub came in to check on me…he wanted to know if something happened that I hadn’t told him.

I cried. I don’t want to be sick again…or more than I already am. I’m tired of being sick. I’m tired of being tired. I’m tired of not knowing. I’m tired of having to change my life because I’m sick again, or more. I’m tired of having to grieve for the life I had, or the one I’ll never have, because I’m sick again, or more.

Hub hugged me, and even though I knew he wanted to hover and smother because that’s his M.O., he left me to rest. I just wanted a minute to mourn, you know? I needed a minute to come to terms with the disappointment, with the fatigue of it all. No one ever knows what is wrong with me. I’m always a syndrome…a catch-all that I’m dumped in because I don’t match any known disease or medical terminology.  I’m tired. So fucking tired.

I laid in bed for several hours–though I got up briefly to eat some soup because I hadn’t eaten or drunk anything prior to that–and just did nothing. I just couldn’t get up the energy to participate in life. My body and my soul didn’t want to body or soul.

I got up and had dinner later, and I talked with Hub like I was “normal”, but inside I’m hurting and I’m disappointed and I’m lost. Again. And writing these things has me crying again…

 

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Teaching them

One of my brothers lives with my father. He has always lived with my parents, though I have no idea why he decided to do so. He’s fifty-three and was born profoundly deaf due to my mother getting German Measles when she was pregnant with him. He’s been wearing hearing aides since he was a baby, and my parents made sure he went to a regular public school so he could learn to live with hearing people. The school system he was enrolled in offered individual assistance for him so he didn’t fall behind in his classes. He’s lived a pretty normal life, went to college, worked retail jobs, got his degree, and has been working in the government for many many years. He maintains relationships with lots of friends–hearing and deaf–and participates in all kinds of activities. He helps arrange and run racquetball tournaments for both deaf leagues and hearing leagues. He travels, stays in hotels alone, drives daily to work, works among his colleagues, goes to a gym, sees his doctors…etc etc. He’s a pretty smart person, though sometimes his communication skills lag a bit. Most people deal with it pretty well, and so does he.

But he’s never had a romantic relationship that we’re aware of, though he has tons of friends. He’s never wanted to go away for any long period of time, never wanted to move out, and often relied on my mother to do things for him. Things he could do–though they might take some extra effort from him–but for whatever reason he chose not to do them. My mother did the things for him out of love, I’m sure. My brother helped (and still helps) take care of their current house and the property it sits on. He would cook occasionally and would stop at the grocery store to pick up a few things when my mother asked. He’s terrible at cleaning, but he takes good care of their dog. Now that Mom is gone, he handles the majority of the bills at the house, does all the taxes for him and my father, and he helps my father with most of the technology in the house.

There are times that he lets things slide that normally my mother would have handled. He and my father, living together like bachelors in their house now, often overlook things because they don’t want to deal with them. I have tried very hard to stay out of my mother’s role, because I do not want to be her. I don’t want to follow them around and make sure things get done, or be called upon when they don’t want to handle things. When things fall by the wayside, they scramble to handle them but it seems to be okay the majority of the time. One of the last issues I have struggled to step out of is their dog. I hate to see their dog suffer because they aren’t staying on top of things, or because they aren’t paying her enough attention. She was really my mother’s dog, her companion and her shadow, especially during Mom’s cancer. My father doesn’t pay the dog too much mind, and his memory is pretty shitty. I often worry that he lets her out into the yard and then forgets about her. It has only happened once or twice since my mother’s death, and neither time did she suffer too much discomfort before I discovered the lapse. Fortunately, their dog barks hysterically if she wants to get back in the house, so there have been times when I hear her barking and I call my dad to remind him she’s outside.

We are all heading to the wedding next weekend. It’s being held less than 30 minutes from our home(s), but it’s an evening wedding. It starts right before dinnertime and we need to be there early enough to get parking and walk to the venue. That means our dogs will all need to have someone come in to feed them and let them out after dinner. Hub and I have been talking about this for weeks, and we finally interviewed a couple of dog-sitters from Rover.com. We’ve used dog-sitters before, but we didn’t really like their service as they were ONLY drop-in and they would only promise to stop in on the dogs in a two hour window. So we interviewed a couple of people and found someone who will come in and stay with our dogs for the whole evening. They have a pretty active evening routine (including dinner), so we figured we’d pay the person to stay the whole evening. It’s not terribly expensive and we’re over-protective owners, so we went ahead and hired someone.

I said nothing to my brother or my father about their dog. They’re grown men, they take care of their dog, they knew the wedding was coming up for six months. If they were concerned about their dog, they should have done something. And I didn’t want to put my nose into their life and ask or suggest they make arrangements. It sounds petty, but I don’t want to be their mother or their wife. GROWN ADULTS.

Hub and I decided to have the dog-sitter come in once before the wedding so the dogs would have a chance to get to know the sitter. We hired her for a drop-in visit (30 minutes) to let the dogs out and play with them while we were out for a longer-than-normal dinner with my family. We all drove together to the restaurant, so when we got home, the sitter was still at our house (dinner didn’t take as long as we expected). Immediately my brother wanted to know who was at our house when he saw the car parked in front of our garage. So I told him we were trying out a dog-sitter in advance of the wedding. He sort of frowned and started to ask me questions, but I only said we’d met her a few weeks prior and then we went home.

Two days later–this is now ten days before the wedding–my brother sends me a message via googletalk to ask me how the dog-sitter had worked out. I said she was good, the dogs seemed to like her (but they like everyone!), so we were set for the wedding. His next question was, “Can she handle three dogs?” Because he hadn’t made any arrangements and he figured he would just leave his dog at my house and so he’d be all set without having to do anything! Again, I felt petty, but I don’t want him thinking that he’ll just let us always handle things and he’ll tag on. I told him that it wasn’t appropriate for our sitter to take care of his dog when she hadn’t met the dog. This was exactly why we had interviewed people in our house to see them with our dogs, and then did a trial-run before the wedding. Also, his dog is not the easiest to handle, especially when she’s in OUR house versus their house. And I told him all of that. I said he needed to find his own sitter, who would come to his house and take care of his dog. So he said there was no time left (TEN DAYS), and so he’d just have to come home early from the wedding to take care of his dog. Guilt and manipulation…because he hadn’t bothered to do the responsible thing for his dog and his plans. Six  months they’ve known about the exact time and date for the wedding.

I felt badly. I had guilt so built up that I didn’t sleep that night thinking about it. I knew he was mad at me, but I didn’t want to teach him that if he didn’t do what he was supposed to, I would clean up after him. I didn’t want him to think that he could let things slide because he figured I would step in. Teaching people how to treat you is important, and I was teaching him to treat me like his sister, not his mother.

TWO DAYS LATER he asked me to help him get a dog-sitter. I had already given him the Rover.com website, so I didn’t understand why he needed my help. He opened the app on his iPad and through every step he asked for my input. HE’S A COMPUTER PERSON. He’s been in IT in the government for probably 25 years…why the hell did he need me to stand over him to help him with an app that I’ve NEVER EVEN USED. Hub and I were using the Rover.com website, not the app, so I’d never seen the app before. *sigh* We contacted several people, set up two for interviews, then he wanted me to be there at the interviews. As it turns out, the first person who came the very next night was the person he hired because the second person flaked out on us.

So he’s got his dog-sitter. We’ve got our dog-sitter. I persist in teaching him and my father that I am not their mother or wife, and that I am not going to step in and take care of things for them. I persist in reminding myself that I am teaching them to be independent human beings, capable of handling their lives. Obviously, if they seriously need me, I am there for them. But these simple, every-day things? They need to learn to handle their business like adults. And if they don’t handle their business, they are going to have to deal with their consequences.

Still, I feel petty and mean. And guilty. And I resent my brother’s attempt at manipulating and guilting me into doing what he wanted. The sooner he learns that he needs to handle things on his own, the better our sibling relationship will be. I hope.

In preparation for the wedding, I am getting my hair color fixed on Tuesday. I have my fingers crossed it goes well, because I’m not sure I could get it fixed again in between now and the wedding. I also have PT for my impinged (and frozen!) shoulder along with a neurology appointment this week.

And then I see a psychic medium on Friday. Should be an interesting experience and I’m not entirely sure I believe in them. I hope to report back on all the goings-on next week.

 
 

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Fake (my) news

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

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

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

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

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

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

How are you? Shitty.

How are you feeling? Shitty.

What hurts? Everything.

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

How are you? Fine, thanks.

How are you feeling? Good days and bad days.

What hurts? Nothing new or different.

If you can’t beat ’em, fake ’em?

 

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Purpose and control

I was watching television and a character said he became a doctor because it was always his way to try to control things. Being a doctor made him feel he was in control of his life and his patients’ lives.

I was sitting there watching and it was like one of those AHA! moments. I started wondering if my fiction writing (which I’d been doing since I was a pre-teen) was my way of controlling things in my life. Or finding a way to have control in a world where I really had no control, especially when I first became sick…which is when I started intensely on my writing career and when I was first published.

When I talked about this with T, it also made sense as to why I haven’t been able to write very much in the last few years. I’ve worked so hard to release my idea of controlling everything, and so my default way of writing–and seeing my writing–is no longer the same. T said she could see exactly what I was dealing with, and she felt the discovery was a very interesting and insightful one. I’m not sure how I will be able to write again, but T thinks I’ll find a way. I certainly don’t want to go backward in order to find my ability to write again, but as I am now, I feel like my solace in writing is gone. I used to be able to disappear into my books and create lives and worlds where everything was the way I wanted it to be. But now, where I see that control really is an illusion–even though I’m still working on that in my own life–I’m not sure how to create stories the way I used to.

At the moment, I even feel like I’m struggling to get my ideas across in this post. I feel jumbled and like the words I want are not here. It’s sad and disappointing right now. The thing that I always went to feels like it’s well and truly gone. I mean, I know I haven’t worked on any of my books in recent years, nor have I really started anything new of note, but I guess I thought it would still be there to save me.

It sounds dramatic, but really my writing did save me when I got sick. There were days I never made it out of bed except to go to the bathroom, and yet those were the days where I wrote my books. Those were the most productive days of my writing career. Through pain and vertigo and fatigue…I wrote my books. I wrote deep into the night, hours and hours at a time, and slept through until noon. I would eat lunch and then go back to my writing. It kept me sane, it gave me a life to live when I couldn’t live my own life. My hands would cramp, my arms would ache (I wrote my books in longhand), my neck would hurt…but I kept writing. That was the first time I ever wrote a full-length book, and it was the first time I persisted in finding a publisher for that book.

And here I am, in need of that solace, and unable to find it.

I’m not the same person I was, no question about it. I just don’t know how to be the person I am and still have the purpose I had then.

 

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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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