Sucks to be Me

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Actually, I’m not a loser, but my body sure is.

My head and neck pain is back with a vengeance. The Botox injections I had for my migraines and body pain definitely did alleviate some of the pain I was feeling. My shots are now three weeks past due. I have not heard from the pain clinic, but my husband is in regular contact.

In addition, my back is spasming like it’s made for it. Topping things off, I’m having menstrual-type cramps like you wouldn’t believe. I’m essentially curled up in a ball most of the day.

Just like the week before my shots, I’m exhausted and sleep a lot. It’s quite defeating. I keep reminding myself the neurologist appointment is on October 2. Just over two weeks away. At least I will have a plan. I hope.

I’ve had to put my Beauty Blog on hiatus until October 5th.  It was such a tough decision to make, but I can’t provide quality at this time. I attempt to apply a face of cosmetics and I’m exhausted part way through. Ten minutes in. Add the photography, and content. I’m so exhausted. I’m so disappointed, as I really love that blog. I’m looking forward to my energy coming back.

My kids are struggling as well. I have another blog, because I have so much information for living with people with autism. Some anecdotes, some strategies, and some catastrophic challenges. Unfortunately, it’s been too much to get that started.

My daughter has either had the flu since the beginning of school, caught the flu twice, or is suffering anxiety. There has been a nasty flu going around, and I was at the ER, a great place for germs. My son has been refusing to attend classes, and been spending time in the office.

My husband, Angel that he is, has been holding everything together. He fell asleep last night with his tablet on his lap and dental floss in his mouth. Poor guy. He tries to stay up and entertain me, but 10:00 hit him hard. I managed to slip the floss out of his mouth and put his tablet away without waking him.

I’ve been sleeping most afternoons from 1 to 6 or 7 and then am up with my husband until midnight. He usually sleeps earlier. I wake up at 6 during the week and later on weekends. I’m sleeping a lot. It may be to escape the pain. I’m focusing on being right on time with my medication so I don’t have the pain build up. It really helps.

I’ve also been nesting. Any energy I have goes into organizing or reorganizing drawers in my bedroom, which is my comfortable space. I’ve bought dimmer light switches, mood lighting, decorative boxes to contain some of the clutter, a fuzzy zebra blanket, some cute file folders, and cute pencil boxes. I’m getting organized with style! Everything is within arms reach. I feel so cozy.

Even though my body is being a real jerk right now, life isn’t so bad. I’m quite happy and content, I just wish I had more energy to enjoy things more.

Hope you’re having a good day!

💜

Standing Ovation

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I am an advice column junkie. I just adore them. Maybe I like to know there are people who have more problems than I do. Or that maybe having friends isn’t all it’s cracked up to be, anyway. Whenever I had friends, they all had crazy rules that they never told me about. I had to guess. Then people would get angry when I didn’t ‘know’. Like this one friend who was really sensitive about talking about her family. My dad had a mild stroke a few years ago, and, coincidentally, hers had one a day later. She didn’t ask about my dad, so I took this as a signal she didn’t want to discuss it. Well, you guessed it. She flew into a rage a few weeks later about how I never ask about her family. Well, she never asks about mine, either, I thought we were setting a tone? Ugh.

Then, of course, having to be informed two childhood friends aren’t speaking to me. It occurred to me the other day: Are there more? 🤣 how do you decide to no longer speak to a person you never interact with. Boggles me. I really want an explanation of the evolution of this. Because it’s so…

Anyway, reading Dear Prudence, which I pay for the Plus membership at Slate, because I love it. I saw this article and I had to share.

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And you can also see I’ve been shopping for slipper socks, they are inexplicably called reading socks now. If you are in Canada, indigo has some for $5. Last year’s sherpas! Fuzzy! We are also supposed to trade in our 2014 minivan. Wtf ? Our prior car was an 88 Caprice Classic. This trade in every 3 year garbage? No way. Plus, hubby is 6’5″ when he gets comfy, he stays put. He also only drives it on weekends to Wal-Mart and the grocery store.

He’s snoring away with dental floss in his mouth! Aww!

Goodnight all! 💜

 

Stunned.

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Things aren’t great here. I’m coping. But I’m just coping. That is all that is going on. My life has pared down a lot from even where it was before. I think that was necessary, for now. Let’s just be real about what’s up.

My back-of-head pain seems to be back as it was before. Now, I can only speculate I had a reprieve because of the BOTOX injections. I am nauseated and dizzy when I sit or stand for too long. I do see the neurologist in two and a half weeks.

I received my date for the EDS clinic. April 2, 2018. I could weep. I had somehow thought December. It doesn’t help that I am on the super-duper special accelerated list, either. I am on the cancellation list as well. They are booking for the regular plebian Ehlers-danlos patients in November, 2018. This is supposed to make me feel special. It does.

Currently searching high and low for a gynecologist. This won’t become a crisis for two weeks, yet.

My husband has been in touch with the pain clinic. They do not know what is going on, but are working on things. I can’t worry about that.

My daughter has had the flu now, recovered, and is perhaps catching it again since school started last week. My son’s autism is really not good.

I have been organizing and reorganizing everything I can get my hands on, because it soothes me.  I haven’t been able to talk to anyone lately. I just can’t stand any pity. I don’t particularly want any advice either. I mean, unless it’s really helpful.

What I would love is some support.

I posted on Facebook that the pain was so bad, I was really struggling. I took a nap. I receive some push notifications, and one person, I don’t even know who suggested I “seek help” and it sent me over. I haven’t been back. It hit me so hard just then. People don’t see me at all, do they? How many people think I’m depressed? Seek help. Yeah. I will get right on that.

I do, actually, feel quite peaceful. My husband needs to run interference for me for a while, because I can’t people, but it’s only another year of my life to waste.

Spotify, Netflix, these are my new best friends! Oh! I can listen to music again! So neat!

💜

I’m a 10 out of 10

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You know you’re gearing up for a migraine when you lecture a stranger in your dream for wearing too much perfume. I even gave her the speech on the proper distance you should be from someone before you first detect it. I was quite thorough. The proper distance, by the way, is conversational distance. That is where you should first detect someone else’s fragrance.  None of this where they walk into the establishment and you can taste it before you even see the person nonsense.

Anyway, I tried to play with makeup yesterday, but the migraine started creeping up. I continued, because it had been over a week! I played for a bit, then finally had a nap. Slept from 1 pm until 8:30 pm when my husband came to bed. I was so restless and uncomfortable.  I couldn’t settle my stomach. I didn’t have anything solid yesterday except for oatmeal for breakfast.

I couldn’t sleep last night, I was just awake, restless. I keep trying. I’d dissolve into tears every once in a while, the pain was so bad, and then it would dissipate. Then ramp up. Ugh. I would lie there, just trying to be still, trying to distract myself. Reading cat memes. Reading long form news stories.

I was supposed to have Botox injections for migraine and for pain management on August 22-ish.  Since then the migraines are back, I’ve had my first period in fourteen years, (Mirena) and I’m wracked with pain.

I have not heard back from the pain clinic. Realistically, it’s been 3 weeks? I think? It feels like an eternity. I feel like most of the pain right now is in the back of my head, whatever we are dealing with there. One month until my neurologist appointment.

It’s also been close enough to a month that I believe it is time to start harassing the EDS clinic again. I think we shall do those things, see where that leads us.

I’m interested to see if I have a period next month. The question: was the Botox contributing to my lack of menses? How? Dunno. Correlation does not equal causation yeah yeah. We will see.

Let’s tackle one thing at a time. I will certainly bring it up at the EDS clinic, I don’t know if they have a GYN on staff, but I will ask for a referral straight away, as well as for a gastroenterologist, as that doesn’t seem to be happening either.

Happily, however, my stomach seems to have settled and I no longer feel like throwing up my toenails. Yay Gravol!

Short term, I don’t seem to be sleepy. Or I am already dead. I occasionally find a comfy spot and all is happy for a while, so things aren’t terrible. I’m going to focus on medicating myself today, listening to podcasts, and maybe tv if I can. Tonight I’m definitely taking a sleeping pill, and back to that if I need to.

I was thinking of a warm bath, but moving…

I can do a month! Right?

And however long the EDS clinic takes…

💜

 

 

Why do People Gotta be so Mean?

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WARNING: MAY BE A BIT RAMBLY AND DISJOINTED. STILL NOT AT 100% MAKING SENSE. STILL FLUISH.

It’s Monday afternoon and I’m on my way to feeling human once again.  Somewhat. I am fairly sure it will take a few weeks before I am completely back and feeling whole, as it sometimes does with colds. It’s funny, it’s not always the really heavy colds, either. This one I had a light sore throat, but I was so tired, and those sores on my tongue came back. They seem to come back now the second I get run down. They are terrible. I can’t have more barriers to eating!

Yesterday was my husband’s 49th birthday. He looks much younger. He was asked last fall to join an under 30 kickboxing club. 😂 He declined.  The family finally got me to move at about 4 in the afternoon. I was still very weak, but I hung out, still in bed, because I’m always in bed, tried to be a good sport, and tried some food. My husband had made some FODMAP friendly brownies, so I had a couple. He eventually made me a smoothie, which I spilled all over myself. Yay! I’m just waiting to take a bath.

My head is really hurting today. It never ends. It’s nice my brain decided to ease up while the rest was acting up. Or I didn’t notice it.

The hospital hasn’t called back, and it’s long past 48 hours, so I assume we aren’t dealing with an infection. So, it looks like I have to face facts and will likely have to find a new GYN. I love mine, but she isn’t available enough to me, and did not return my husband’s call. Can’t work with that. I don’t have the energy.

So, I can’t remember if I mentioned this, but I’m too weak to check, as we were leaving the exam room, we walked by the patient at the nurses station on a stretcher. Obviously, I was in a room because of the examination that needed to be done. The patients partner was sitting crossways across the bed and my husband walks past, holding my hand, I’m clutching my stomach, and she stretches her legs out and tries to kick me in the knee. She just barely makes contact, though, short-legs-having-bitch. Why?

Then I get out to the waiting room, I had to make sure I didn’t hallucinate this one. This woman was sitting in the waiting room, and it was about half full. My husband found the closest chair and dumped me on it, and this woman was sitting across from me. Husband goes to get a cab, and she goes “Ha ha” and I assume she’s looking at her phone, but she’s staring me down. I just put my head in my hands. She may have taken a photo, because she had her camera out and in position, but that didn’t occur to me until later. 6 mg of morphine, remember. I did not fall asleep! But I did get somewhat stupid. I remembered what happened, but it took me a while to parse it. She looked so normal! Then this guy came out that ahe was with, and he did not look, uh, well. I appreciate a man who works with his hands, but this man looked like he worked with his face! Wow! I don’t know the relationship, but the age difference looked huge! I’m biased, because my ex was older and it was bad. Strange people everywhere.

I don’t understand deliberately trying to hurt someone. And on that note, a big shout out to twiggyjen44 whom I may have been inadvertently ornery with in my cold/pain/drug induced haze. I am very sorry if I was snarky. Thank you for your help and advice! 💜

Over this next week I’m going to work on recovering my strength before making any decisions. I seem to have had one round of bleeding that has stopped. Perhaps my lining had just built up enough that it needed to slough. We have moved my cranberry pill to the morning, so that should help with any chronic yeast problems.

Oh! Yes! When the nurse was inserting the iv into my hand, she really crammed it into the back of my hand. I heard it pop when it entered my vein. That has never happened before.  But I have the teeniest of yellow bruises. I am one Zebra who doesn’t bruise! And another thing, my body should be stretched out from being fat, but it snapped back! Reverse elasticity? 🤣 I think my skin just isn’t very involved.

Another thing at the hospital, while I had my blood drawn, this woman came in, she was in her large 60s, she approached the triage nurse. Patient explained she was at the ER and the doctor wanted her to come back for a follow up test. Triage nurse explained patient had to go to her GP. Patient claims the doctor told her to come back here. Triage nurse tried not to roll her eyes and started to ask the patient questions. Which start to go in circles. We go through this whole routine three times, at which point the patient decides she wants to come back tomorrow, and tries to book an appointment. All the nurses were listening in by the end, trying not to either laugh in sympathy or strangle the patient.

When I was still waiting in the hall, one lady jumped up because her partner was getting worse, they were worried about his heart. She bashed into my stretcher, which hurt so much, and surprised me, I felt so bad for calling out, but I couldn’t help it. She apologised, but her mind was elsewhere, of course. Goodness. I’m such a jerk when I don’t mean to be. It’s good I don’t go out much! 🙊

I must admit, though, even though I had to spell Ehlers Danlos for them, I did get treated awesomely. Adequate pain management, no drug seeking questioning (it does help to go to the hospital that does administrate my pain management), thinking ahead so I didn’t have to move too much, all in all, the staff was very considerate.

Okay, I’m going to go find someone to monitor my bath. I fell a couple of weeks ago, and I like to have someone keep an ear out for giant splashes or thuds.

💜

Hellooo Nurse!

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Finally, after being in pain all week, one of my friends on here (I don’t know if she wants recognition or not) convinced me to convince husband it was time to get me checked out.

Now we haven’t done nothing, I know my husband put in an urgent call to my regular gynecologist on Monday morning.  We still haven’t heard back. My GP is on holiday the last few weeks of August, with no cover. We would have called telehealth, but they always tell you to go to the hospital.

WARNING: I WILL GET GRAPHIC ABOUT LADYBITS 

I don’t entirely blame my husband, although he sure blames himself. If I had said the pain was bad, we need to go, we would have gone. However, I have a cold as well, with that sore throat. All I want to do is sleep. So I really minimized the pain, as I hoped it would go away.

At first, because I had spotting, I didn’t worry. Then it got heavier, and heavier, with the pain, our theory was my Mirena IUD had started burrowing its way to freedom.

I arrived at the hospital. The one I go to for pain management,  and the ER was fairly quiet. Score! I sat down with one of the nurses,  Matthew, he was a sweetie, even though he couldn’t spell Ehlers Danlos. He thought ahead and put me somewhere where I didn’t have to get up and down. My husband asked right away if there was a place I could lie down and I was able to lie on a stretcher the waiting room. It made such a difference!

I was transferred to a room, like an ER bay, because you know the pelvic exam is coming…

The doctor came in and did a preliminary outward examination of me. When he got to my back, I screamed. I didn’t know that. Well, I guess that hurts.

Apparently, on my chart, it has huge notes all over saying DO NOT DO A PELVIC EXAM UNLESS ABSOLUTELY NECESSARY! This is because pelvic exams hurt me. Very badly. The doctor, realizing this and seeing the preliminary exam, orders 6 mg? Of morphine before we go any further. What a sane and sensible man!

Later, he comes back to do the pelvic exam, and can’t find anything too dramatic. Takes swabs.

Next is a pelvic ultrasound. I have done this a billion times. The technician is awesome. It hurts much less than it has in the past. In the past, I’m not on morphine.

We arrived around 10:30, it is now around 3:30, husband decides to grab some food because we have a lull. This is where everything happens.

The doctor comes in while husband is gone and informs me that the ultrasound shows my Mirena is in the right place, no problems there.

The doc comes back 3 minutes later to tell me there is no indication this is anything but an endometriosis flare up. However, because there was discharge and bleeding there is a small chance there is an infection. They have the culture, but it takes 48 hours to grow, they will call me and we will prescribe something then. Otherwise, many women still get their period with Mirena, (all of a sudden, after 13 years?) that’s what this may be, go home. Follow up with your doctor, you need more pain medicine.

So, fine, we were getting up to go and wending our way through the maze of stretchers and some bitch sitting on her boyfriends stretcher had seen us coming out of the room and stretched her foot out to kick me as I went past. Nice. Bitches in this city.

So, anyway, I’m frustrated. I feel like I’m back at the drawing board. I thought I had this sorted, and it’s reared its ugly head. I need to meet with my doctor, but she’s near impossible to get an appointment with.  So, I’m going to need to consider another doctor. That’s first up.

I don’t think I want a hysterectomy. All advice to date has indicated I’m in pseudo-menopause now. Having my organs removed won’t make a difference to the pain, but will for other things. Will have to discuss with the doctor I end up with.

In terms of diet, I am on FODMAP, and can’t really change that. It’s been suggested I go vegetarian, or fish-based, but I’m allergic to fish, I’m allergic to legumes, which screws up vegetarianism. But I am also allergic to soy. So I’m very picky about my food. I only eat about two dozen items, and most are well vetted for proper growing technique.

Once again, spending the long weekend resting up. I suppose we tackle this new adventure on Tuesday.

I’m going to rest. So tired.

💜

Inconvenient Sleep Habits

In the first place, my body is being a big jerk. It won’t let giphy15me sleep at any time there is another person in this house asleep.  On top of that, I’ve caught my daughter’s cold. Which isn’t a horrible one, it’s just that I’m a terrible wimp when it comes to having a sore throat. I find that pretty funny, actually.  I am also suffering with yeast infections for some reason. I am having incredibly awful pelvic and back pain. If it’s not gone by morning, I’m actually going in somewhere. It’s incredible. I don’t know what is causing this. I was having terrible problems for almost eight months about two years ago. I had fungal infections all along the inside of my thighs and my under my breasts. My pharmacist recommended cranberry tablets. It was funny how I discovered this. My husband is in charge of all my medicine. He had asked the pharmacist about this problem and received this answer. I had been taking them for a while before I noticed. When I asked about them, I received an explanation, which I denounced as hogwash. Husband asked if the thrush had cleared up, to which I had to admit, yes it had. Unfortunately, I have been not so great at taking my pills, as I sleep at odd hours, missing some. I need to pay attention, get back on track.

Although, that is difficult when you’re curled in a ball whimpering.

I’ve found that around midnight, I usually start crying. It doesn’t last long, usually less than 30 seconds. I’ve never gone longer than 3 minutes. But I have had a few minutes to myself to be scared and break down before I put my face back on. The everything will be ok, face. Or maybe I sob out of self pity. I have some of those, too, I’m certain.

I can’t deny I’m stressed. My mother needs support and I can’t offer it to her. I’m likely the only one, besides her sister, she has. My husband is too overworked to give me the support I need. I ask for things, 10 minutes of his time, and it’s to the point where this is becoming problematic to schedule. Tonight, I wanted help with two rather unimportant things, I waited until bedtime at 9:00, but almost didn’t accomplish them because of all the distractions etc. He keeps telling me he answered me when he didn’t. It’s so frustrating. I know it’s not my memory, either. Sigh. 11:00. We need a better strategy.

Trouble with midnight painsomnia is I can’t vape or watch TV 🤣. Our sofa is not a place to banish people to. I can’t make it downstairs on my own, either.

I’ve been cleaning out drawers. Nesting. It’s my favourite thing to do. It’s been hard work, but I always feel better afterward.

Can I ask a question of my friends who are on the Autism Spectrum? How offensive is the term Aspie? Or Aspy? Here’s why: I have so much to talk about with my family, with three of them being on the spectrum. Daughter, diagnosed Aspergers, husband not diagnosed, but clearly on the spectrum, and my son will be diagnosed when he returns to school. I have so much to share about parenting and what living with these folks is like, I was thinking of…ugh, a third blog. Ugh. I know. But the name Three Aspies and a Zebra sounded good to me, I just didn’t want to be offensive. Open to any good name suggestions! Speaking to the blog, for example, my kids have no idea when people are joking. My daughter went to the CNE, I asked her to buy me some donuts, which are off my FODMAP plan. She’s 15, btw. She started crying because she didn’t know if I was kidding, and if she should really do it because they might hurt me, and she didn’t want to be responsible for me getting sick. She’s so sweet! 💜

My husband is snoring sweetly beside me. I want to whack him with a pillow. Nah, I know that if the kids stir or if I call out, he will be up. His beloved aquarium was acting up earlier, so he’s annoyed. He gives time to the kids, and I can’t begrudge my own kids and his source of income, as he was finishing a course for work, too.

I just can’t stop needing what I need or feeling what I feel. Here come the tears. Must be midnight. Exactly.

Ah, going to go find some cat memes. I always get melancholy when I’m sick. Boo.

💜