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Monthly Archives: July 2017

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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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)

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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.

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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 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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Two year cancer update

This past week I went to see my gyn oncologist for my annual cancer check-up. Oddly, the office was very quiet and they took me back on time. Normally the place is mobbed and we wait forty-five minutes to an hour to see the doctor. I’m not complaining, it was just so weird. As it was, my original appointment was at 2pm, but the Thursday before my appointment the office called to say the doctor was going to be out of the office at that time and could we move the appointment to an earlier time. We, of course, got there about twenty minutes early, and during that time we saw my doctor wandering around casually like he had nothing much going on. Normally he’s running from one exam room to another and never comes out to the front the entire hour or so we’re waiting.

I wasn’t sure if all this was a good omen or a bad one.

My blood pressure is always good in their office. This time, though, the wrist cuff they normally use wouldn’t stay velcro’d on, which was a bit upsetting because it made me feel like my wrist was too fat. I had to stop myself and change my inner monologue, because every other time we’ve been there the wrist pressure cuff has worked. I assume this particular one was losing it’s velcro power. So the nurse did an old-fashioned manual check and again my BP was pretty awesome. Normally I get white-coat syndrome and my BP is kind of high, but at the gyn/onc’s office it’s in the normal range…and I have no idea why.

Le Dottore came into the exam room wearing an awesome royal purple tie with white polka dots. Purple is mine and my mother’s favorite color, so I took that as a good sign. I even told him how much I loved his tie and he said purple was his favorite color. We did the exam–which took no time at all–and he pronounced everything “awesome.” I asked about my yearly CT Scan, because the original plan in 2015 had been yearly ct scans every July, and yearly paps every January. This last January he said paps every TWO years…and this week he said he saw no reason for a CT. I said I thought it was yearly CT’s and paps every 2 years. He said “no reason to do paps unless there are symptoms” and basically the same for the CT scan. He said my exams have been perfect and without symptoms, he didn’t see a reason to do the scan. I don’t know if their policies have changed due to new information or what, but it was kind of stressful to hear that they wouldn’t be following me as closely as I had been told. I said I was a little concerned about not doing a CT, but that I understood getting a CT subjected me to radiation (which can actually cause cancer), so the choice wasn’t cut and dry. He said it was my choice, we could do one now or talk again next year. He said recurrences happen most often in the first two years, but even that was a low number (he said 10% but I’d read 15%). But again, he was happy to give me a referral if I wanted the CT. I asked for the referral but said I’d think about my options.

I discussed this with Hub and with T, and in the end I think I’m going to get the CT scan. I’m too worried about all the bits inside that he can’t see or touch, where cancer could be growing without any symptoms or pain. (My mother had cancer recurrence and she had no physical symptoms that she spoke of.) If I didn’t do the CT when I could have and then something happened, I’d beat myself up something fierce. And since “ct scan radiation causes cancer” is actually NOT something they can prove scientifically–it’s a guessing game because they can’t subject people to CT’s to see if they get cancer–I’ll be taking what is an unknown risk versus the actual risk of missing something growing.

I’ll be waiting until after the wedding to do the scan so it doesn’t make me feel lousy or sick this week when I have so much to do. And I’ll have the relief of knowing there was nothing to be seen that could have been seen.

Two year cancer check achievement unlocked.

 
 

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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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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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