Good News! I’m alive!

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Well, I suppose that depends on your perspective, but I’m happy I’m starting to feel human again. ๐Ÿคฃ I believe sleeping so much yesterday helped a lot. Usually sleeping so much doesn’t do much to tackle the exhaustion. Things are different when we are dealing with the flu.

It’s funny to me it takes so long to figure out when I have a flu bug or something. I get to feeling worse and worse, and my brain gets less able to figure out what is going on. Being nauseated and tired all the time is nothing new. Dizziness is standard. Flare-up happen. Headaches are constant. At least now I feel like I have one flu instead of two. And why do I get sores on my tongue every time I get sick now? Do not like. (When my daughter was a baby she used to say “Do not like it -push” ๐Ÿ˜‚ she’s so funny).

Two weeks to neurologist appointment. I’m hanging in there. I’m hanging a lot on this. I know this is very dangerous, but it’s all I’ve got.

I am going to shop for some supplies. I am going to look for some aromatherapy supplies. I still have horrific menstrual cramps. Year’s ago a combination of bergamot and ylang ylang in oil massaged on my abdomen used to help. If you try this, it is not safe for pregnant women, because it can cause uterine cramping. I want to find some support pillows, and something to help me apply lotion when my husband and chief lotion-spreader isnt around. ย Or is sleeping. ๐Ÿ˜Š

I have new boxes to get organized, so I’m going to do just a tiny bit of that while I have the spoons and need to lie down again. Ten minutes? ย I love making my nest cozy. Then I’m going to watch episode 2 of AHS:Cult. I’m so afraid of clowns! ๐Ÿคก Even before it was trendy! Maybe this week I can catch up on OITNB and Kimmy Schmidt, too. I’m even thinking of picking up a book. I feel centred enough to try.

I hope you’re doing well!

๐Ÿ’œ

PS, I felt like a real Zebra the other day! I was doing something where I put my arms out or something, and my son freaked out and asked if I was turning my arm upside down because it looked freaky. My arms are pretty normal, as Zebra arms go, but it made me laugh. ๐Ÿ˜„

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. ย 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!

๐Ÿ’œ

Dizziness

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I am so freaking dizzy! I can’t close my eyes anymore, I just can’t. I should be sleeping.

I fell in the bath today. I was crouching to get in, and I saw blackness, then splash! And then my back and shoulder on the left side started hurting. Which is annoying, because my back was doing pretty all right, considering I should have my shots tomorrow, Tuesday, if this is Monday, already. It’s 2:30 am.

I actually feel as if I am getting a period. This is weird. I have a Mirena, have had no problems, just treated for a yeast infection, have incredibly sore boobs, cramps, sore back, and twinges. Definitely not pregnant. I guess I have to trek to the doc. I wonder if weight loss has something to do with it. I’ve never used Mirena at this weight. Does it need time to adjust?

This dizziness is something else. I even THINK about looking up? Makes me sick. I hate people who post photos from planes or videos of skydiving? I start shaking. I’m tearing up just thinking about it. ย Or from space? I want to vomit. I don’t know how I’m going to get through tomorrow (no, wait. We decided it was today, right?) today. Someone is going to want me to look up at something…

I just tried to roll on my back facing up and I couldn’t. It makes the room spin. It’s so weird.

I was thinking again the other day… so dangerous, ๐Ÿ˜„ a couple of appointments ago I was trying to get a concept across to my mmj doctor. I was asking her about a stronger dose or another strain, although my distributor doesn’t do that, that would help me… and I couldn’t quite put my finger on the concept.

Relax.

Relax my muscles an perhaps let some of the tension in my body go. You cannot even fathom how rigid I hold my body. Even when I’m relaxing. I can’t drink, we can’t get massages, every time I do relax I get a fucking migraine, I can’t eat anything good, hot bath? How long does that last? I’m cooking to death in this room already, no heat for me. I hate cold, I snuggle up and watch comedians on Netflix. I’m still tense as fuck.

I can’t close my eyes, it makes me dizzy.

I’ve been trying for an hour to sleep.

Anyway, now I target each part of my body starting from the top or bottom, and relax each bit. It’s an exercise. Deep breathing, all that jazz.

My little corner of the universe is becoming quite becoming. I’m finding a lot of joy here. My makeup stash to my skincare stash, (PS, if you spend more than $100 on Korean skincare and masks, it is too much, and you will spend the next six years giving it to everyone who walks by. ) it’s all becoming accessible and organized and joyful. My clothes are slowly getting organized… that’s my daughter’s project, though, and she is taking forever!

Anyway, I need to try for 3 hours, and my elbow hurts! ๐Ÿ˜ข

๐Ÿ’œ

My Super Hyped Doctor Appointment!

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As is apparent, I survived my doctor appointment yesterday. I had some mixed feelings about it, and needed time to process, but on the whole, I think I’m much better today. Emotionally. Physically, too. Let’s start at the very beginning where my happy alarm goes off at 6:00 am, my husband brings me coffee, and I start to look dazed.

First thing I grab my medication. The second thing I do in the morning when I have time is vape. I wasn’t going to have time today, so I should have used my marijuana oil. Vaping takes an hour and a half, start to finish. My therapist keeps nagging me because she thinks that’s too long for medicine to be consumed, it should go faster. Nagging me- she mentioned it twice. It still bugs me. I can’t control this. I didn’t remember my other medication – the marijuana oil – until we were partway there, but perhaps it helped with my sensitivity? Showing them how sensitive Iย truly am? I don’t know, I probably just screwed myself.

We dropped my son off at school, and proceeded to the hospital where we hung out. The doctor was only a half hour late, but we were treated to a bevy of overly perfumed women (really, don’t wear perfume in a hospital, it doesn’t matter when last you bathed) dramatically emphasizing how they were in the most pain of anybody! So Loud! I felt sorry for each woman in their own way. Each needed something they weren’t getting. And then I looked around and felt sorry for all of us, as I realized everybody had something they weren’t getting. And then the doctor called us in.

New, young, gorgeous, doctor this time. She had read all three volumes of my file and asked for update on the situation. We told her about the head pain. The neck pain, nausea, dizziness, having to lie down. The stomach pain. Just on the surface of the stomach. Did I throw a cyst recently? My pubic bone. My hands hurt, my joints hurt, my knees hurt, Things are not going well.

We discussed the effect of the pain, how it feels, quite in-depth. She wanted to examine me. This was going to be the toughest part.

I changed into my formal hospital wear, and my husband held my hands as she did a surprisingly gentle upper abdominal and lower abdominal palpitation exam. I didn’t scream, only major flinching around my lower right quadrant. It was incredibly sore. She did back off right away. It didn’t hurt so much then, but ten minutes later was …wow!

On to the pelvic. She did some sensitivity testing around my ladybits, and a modified pelvic exam. I’m usually screaming during pelvic exams, but there was no speculum involved. She said I was something that amounts to ‘not letting the horse into the barn’ (my words) and I should probably get back to pelvic therapy. I was teasing my husband that she was trying to tell me I was frigid, but he didn’t know what that meant. I had to explain. Cute.

Naturally, by this time, I’m not feeling too fantastic. We start talking about the weird headaches I was having. My husband volunteers that it was like I have these vertebrae sticking out, and she goes to touch them..

Bad idea!

This send a searing shock of pain up through my neck, up to my head and I cry out in pain. I think I scared everyone, ย including myself. The doctor runs out of the room, embarrassed, leaving me to get it together. ย I’m scream-crying, trying to hold on until the initial shock of having the top of my head blown off subsides.

I finally calm, husband helps me get dressed, and we wait.

The doctor comes back, apologizing, but saying the demonstration really helped. Even though she’s sorry.

After some back and forth with the Old doctor, where he threatens to cut my medicine down, because I’m on an awful lot, and sometimes too much isn’t good either, which feels like the new ‘lose weight’. I’m not on THAT much medication, and I adjust accordingly. I wish he’d discuss it with me. My husband is dismissive of this comment, but I am not. I feel like it’s a warning, but I’m just a paranoid girl.

I feel like he’s saying “if you bother me too much, you’re getting less medication”. Which is insulting, because hello, not a drugseeker, and we haven’t even discussed the problem yet. Fer chrissakes. It especially rankles me because I’ve been sucking it up for most of my life, pretending I’m okay, pretending I can get by, pretending it doesn’t hurt as much as it does.

After that bombshell, I just kept a straight face, and he continued his best recommendation was to continue on with the Botox treatment as planned, because it does so well for such a large part of me, we will try for a referral to a person who may do nerve blocks or x-rays of my c-spine to deal with the headaches. In the meantime, he is prescribing a compounded cream for my headaches that he said he thinks might help. I can’t remember what’s in it, but one of the things is ketamine. He said I could probably use it other places, too. Last night I was thinking about my abdomen. The pain is about an inch deep, if that. This may be perfect. Here’s hoping! It would be nice to not have to take something that has to traverse my system to work. (I know this enters my bloodstream, but it doesn’t need to go to the edges of the skin to be where it needs to be? But the brain… yeah, right, it’s been a long week)

So, we are just waiting for the magical compound to show up. I don’t know how my hair is going to like it, ย but thank God for Olaplex.

The more I think about his recommendations, the more I think he is right, and I think he made good suggestions and I see how they are beneficial and applicable. The cream may be just the thing on my abdomen, as the pain only goes about a half an inch down, I’m excited to try.

We had briefly spoken about referrals to specialists, but in light of the EDS clinic referral, which is underway, I don’t know what will come of that. Does it make more sense, if that is imminent, to see their in-house people?

My memory is improving ever so slightly. ย I feel like I’m at least over whatever cold or flu thing I had. I feel so much better than I did!

I spent the rest of the afternoon just flaking out and surfing the Internet and trying to stay comfortable. This morning was pretty much back to normal.

Have a great day, Zebras! ๐Ÿ˜˜

 

PS. Just FYI, the reason I don’t use my family’s names in my blog is simple. I thought it might be too confusing for someone coming in in the middle to figure out which one was the husband, the son, or the daughter. I thought this would be simpler. Also, it gives them some anonymity when we go viral. ๐Ÿ˜ I may slip up occasionally. ย It’s not a tragedy to me. We aren’t in hiding.

Oh, Great! *Eyeroll*

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Fantastic development. Along with the neck pain, back pain and dizziness, in there with the nausea and headache, forgetfulness and general discomfort. Alongside the inability to sleep properly and horrible concentration, it seems I’ve caught the cold the kids were passing back and forth.

Fortunately, it’s not too bad, and the CPAP machine I use tends to cut down on the amount of mucous in my nose, so I have fewer breathing issues. I just have a vague sore throat and have this mantle of exhaustion that is unusual. I’m used to being tired, but I’m achy and uncomfortable, I can’t settle. I think that tipped me off that something was off. Also, my nose is booger heaven – ugh.

Lack of quality sleep is not helping my concentration or cognition. I will be watching a show, it will cut to commercial, and I will completely forget what I was watching. I’m having trouble communicating verbally, still, most of all, and paper is only marginally better. (I could be writing my name over and over thinking I’m being brilliant right now!). There is one Simpsons commercial that comes on, and I get so excited, thinking I’m watching the Simpsons. I feel like such an idiot when the commercial ends.

My Mom seems to think my family has terrible luck and absolutely everything happens to us. I admit, it does sound shocking to listen to someone with chronic pain describe flare-ups. I had been silent for years, but I think people ought to know what my life is like. Not in a complaining way, but in a this-is-how-people-live way. People have chronic pain. This is my life. My kids have had quite a few illnesses this year, yet this is my first cold, I think, since being ill at Christmas, with the rest of the world, and it’s mild. My husband has glaucoma issues, cataracts, and arthritis. Both run in his family. My kids have Autism. Sounds like a lot of families I know. Maybe these families aren’t so open, I don’t know.

I should get that nap.

Stay stripey my Zebras! ๐Ÿ˜˜

Current Mood: Exasperated

Over the weekend, I managed to get a lot of rest in and my abdominal pain is resolving. This makes me question the cyst

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Current Mood in Action

theory, although, I did have a major bout of nausea last night, which is what I was looking for. It just sseems very short. These used to last a week or so, and this was a good two to three days shorter. Now, I haven’t had one in a few years. I am getting older, that may be a factor. My Mom was 11 years older before menopause really started, she said, so I guess it’s time for peri-menopause at the least. I should likely have my hormones checked. I’m interested in what my thyroid is doing. I’m pretty sure my GP has his eye on it. This is the major problem with having illnesses. Routine, important maintenance gets pushed to the side, often with the assumption ‘someone else’ is looking after it. I have so many things I’m chasing right now it isn’t funny!

 

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Not all, of course! Ha!

Anyway, my ovary whatever seems to have resolved itself, so I’m not being attacked from the inside, but my abdominal muscles, the whole of my abdomen feels like it was removed. Remember that doll, Skipper, that was pregnant? You could take her abdomen off? That part is burning fiercely.

It feels like someone has taken a blowtorch and actually removed that part of my stomach. I have no idea why. The surgeries I’ve had in the area are gallbladder and appendix, are they enough to cause that pain? Oh and two c-sections.

Once again, I’m back to eight days from my shots. Botox for migraines and EDS. So my back is aching. My low level

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Chris O’Dowd looks so much like my husband. Back in the day. He’s neater now. ๐Ÿ˜„

headache is ramping up, and my neck is really sore. I’m back to the nausea and headache and dizziness problems I had before. When I was in so much pain and couldn’t move, I wasn’t thinking about how ill I felt. Now that I’m on less medication and am upright and have peeled away a layer of pain I can feel it. The problem is, it’s not bad enough to be debilitating, ย but it sure is bad enough to make me grouchy. I’m trying to be kind, but I don’t like myself on days like this. ๐Ÿ˜ฆ I’m watching some comedy and staying isolated to try to help.

Almost there!

It’s supposed to rain off and on this week, and that never helps. I’m going to play with some Maybelline makeup ย #igotitfree through @chickadvisor. Pretty awesome. Then, a nap!

I am not going to have the strength to talk to people I think. I won’t be able to censor myself. I snapped at my son yesterday for no reason. It’s not fair. I’m too worn out. I’m trying to catch up on blogs, but it’s all I can do to press like sometimes. I don’t get there, some days.

No, wait. I did have a reason to snap at my son. But it still wasnt fair. I asked him not to come into my area while I was trying to fix a problem and he did anyway because he is autistic, and I am in pain but trying anyway. I made a mistake and apologized. He made a mistake and apologized. Better.

Okay. Need to conserve spoons.

Stay strong, Zebra pals! ๐Ÿ˜˜

My Wonderful Husband ๐Ÿ’™

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Things got a bit awkward? no, unfortunate last night. My darling husband and I started to snuggle, and we got about as far as Marge and Homer in the above .gif, only we were still wearing our matching pajamas (yes, every year at Christmas I buy the family matching pajamas. We are Canadian and it’s May, of course they’re on!) when suddenly I had the blinding head pain and nausea return. I was so upset. I’ve been in too much pain to be intimate for so long. Of course he understood, and just held me. He has to stop being attractive, too, though.

I was thinking if I should ask him if I could tell this story, I paused and I could almost hear him say “Why? It’s facts!” I started to cry. He’s so wonderful. Of course, just then my kids burst in with early Mother’s day gifts. They had a makeup brush I wanted and deodorant in a particular scent. They bought three sticks! My son informed me. Also, I stink. They wanted to know why I was crying, of course, so I told them it was because their dad was wonderful. They were fine with that. My husband rounded the corner shortly after and I had a chance to ask him if he would be embarrassed if I shared the story of last night. “Why, it’s facts?” He said.

Yesterday I just slept all day. I had stuff I wanted to do, but a two-hour nap turned into three, which became five… I think it was good. The pressure in my head was bad, and I needed to relax. My husband suggested I sleep in again today, but I thought if I did that I might not get up at all. When am I going to accept that he is always right? I did some makeup stuff, but the photos are awful. If I don’t feel good, the photos don’t turn out. Waste of time if I can’t show off. Or if I cringe looking at the photos.

Right now my head is throbbing and my jaw really hurts. I overdid things. My pubic bone hurts, too, likely from sitting up so long the past few days. I ache all over. I can’t remember much of any conversation. Watching TV is futile. I can only watch reruns of animated stuff I’ve seen a million times. I can’t follow other stuff. Law and Order was really bad. Archer is baffling to me. I keep calling him Bob. My husband watches sports beside me on his tablet. Or we watch together.

Ha! Husband just ran in, gave me a kiss and ran out again.

This head thing is really frustrating, but my husband really cheers me up. So glad he’s in my life. ๐Ÿ’™

For Mothers day (because my husband is such a terrible speller, we refer to it as Mothra’s day, and of course Fathead’s day. Although that may have come about as a autoreplace suggestion. ๐Ÿค” My husband is a Fathead, yes he is! Full of knowledge!)

Anyway, I haven’t really been feeling well enough to do anything for my Mother, so in appreciation, Mom, if you are reading this, I will not take you to see Snatched this weekend, that atrocious looking movie with Goldie Hawn and Amy Schumer. My Mom works so hard looking after my Dad, she deserves major snaps, because she has her own challenges, yet she cares for him tirelessly. I’ve long felt it’s easier to be the patient than the carer. I know I would have bailed long ago.

I’m feeling really frustrated with this stupid head pressure affecting things so much. I didn’t even vape yesterday because inhaling was going to hurt too much. That’s not good. I’m frustrated it’s taking from the tiny amount of leisure I was afforded. I don’t want to have to give everything up. I’ve had to give up so many hobbies already.

I’m scared it will come down to choosing between functioning and being comfortable.

Have a great evening, Zebra pals! ๐Ÿ˜˜