Botox Shots

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I had my needles for my migraines on Monday, and it was an experience. My appointment was scheduled for 9:30, but we weren’t seen until 11. Around 10:15 is when I put my head down in my lap, and 10:30 is when I burst into tears.  I just can’t sit up that long. So they let me into a room to lie down, but it only had a dental chair. So I sat in it and dangled my head over the edge.

The doctor came in and he remembered me, but couldn’t place me, which is understandable. He believes anything over 200 iu of Botox in the body at any time is wasted, so my 600 of body iu was a total waste. At this point, I’m coping well without it. My back hurts like a demon, my pubic bone is not bothering me as much, though. I am better at taking my medicine.

I had some relief from head pain, as they also inject you with lidocaine, but the back of my head still aches. It’s really tough to stay cheery.

I have confirmed I have a referral to both a gastroenterologist and a neurologist. So there will be investigation. I am hoping for some relief with the Botox. I need to relax. My husband called on the cell this morning and I had to yell to be heard. It made my head hurt.

It seems as if this doctor will be running the clinic for the time being. I am to book for my regular interval, 9 weeks, but they aren’t set up that far yet.

I have purchased a bunch of new clothes, as my weight has stabilized, it seems. I have day pajamas and night pajamas. The Gap has some super soft knits if you know or are some people with SPD.  I’ve only seen the women’s clothes, as that’s all I’ve looked for. I had my nice pajamas on, as I’m walking up to the door, my husband comments that my pants are saggy in the butt again. Dammit!  They are too big, meaning everything is too big. On the bottom anyway. Maybe my stomach just isn’t bloated. 🤣

At the moment, I need to ensure I lie down often. Rest. Things take hours. But I can avoid these headaches. Neckaches. Which is from being tense from the pain, i think. My face usually hurts regardless.

I’m still sleeping a lot. I’m trying to reach out more to people. This is a rough week. Husband is working on year end. The kids are restless. Anxiety is up.

So, I wait.

💜

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.

💜

Upsetting News

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Ugh. My husband called the pain clinic to harass them about my not getting callbacks. When he listened to the Clinics outgoing message, he learned that my doctor, the head of the clinic, is away indefinitely.

I’m frightened.

Firstly, he did not look at all well at our last appointment. He is quite overweight, and looked pale and well, grey.

Secondly, he is not a young man. Going by his graduation dates, he is in his late seventies to early eighties. He has been pushing himself hard, working at least five days a week at the clinic, and travelling all over the world lecturing on pain management. I do hope he is able to recover.

The clinic has assured us it is still running, but, selfishly, I have my shots in two? Weeks. Nobody is as talented as he is. I’m going to get some hesitating ass. Nightmare.

Currently I have referrals out to:

  • Neurologist
  • Gastroenterologist
  • The hand and knee specialists retired so I’m waiting for the EDS clinic.

My heart test came back, it was ‘grossly normal’. Now the EDS clinic has everything they need, and the Manager said we should hear from her within a month, if not to contact her to find out what is going on. I don’t expect an actual appointment, but a date gives me hope. ❤

My good friend is moving an hour and a half out of the city. I dont get to see him much anyway, but he was offred a great spot in a retirement home and he can’t pass it up. We talked for an hour last night and damn it cheered me up!

It’s just so hard to get together with people when you feel lousy, and your kids take over the house, it’s not that big to begin with, and you can’t even serve tea. You don’t want to treat your family as staff, but you want friends to yourself, but as adults, do they come over and hang out in your bedroom? What the hell, sure! 😂

I don’t like this change nonsense.

If you can pray for my doc, I’d appreciate it. I hope he just needs rest.

Healing Sleep

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My husband took yesterday and today off to take me to appointments.

I had to go to the doctor on Tuesday, as I didn’t sleep at all on Monday because my tongue hurt too much. It feels like I burned it on hot coffee now, but there were blisters before. Ugh.

Thursday I couldn’t stand I was too weak. I have been pretty much sleeping on and off ever since.

It is pouring rain and thunderstorms, and the dentist is this morning. Let’s see if I can do it.

Cheers!

In Pain and Grouchy.

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All right. I’m done. I am bloody well ready to shut it down and move to the furthest edges of where Sephora delivers. I’m over this friendship business. It’s overrated.

I had a person ask me to join a group she started, because it was a mutual interest, so I did. The members seem to devote a lot of time to this group, and it happened around the time all my major nonsense started this year. I haven’t posted much to the group, nor to this person much, except to explain my situation. She deleted me today, as a friend! (Yes, I have spyware) Now, I don’t hate her or think she’s a bitch or anything, but I think it’s pretty much a pattern of how abled-disabled friendships go. Tons of assumptions are made, three months go by, well – they must be feeling better by now! They must not be interested. Where do three months go? It took me four months to see my regular pain management doctor! So much can be solved by talking. But when you have an invisible illness, who has the spoons? How hard is it to check Facebook, really? You’d be surprised.

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This is a pretty nice picture. Notice my top from Old Navy with the Zebra print. This makeup took over three hours to accomplish. I had to keep lying down to quell the nausea and pressure in my head, increasing my headache. I also was dealing with a broken crown because my medical examination last week was so painful, I grit my teeth in pain, and… well. We do need to wait until after my Botox treatment shots tomorrow, because I get lidocaine and Botox in my jaw and it helps a lot. If I need to sit with my mouth open while they tinker, it just makes sense. I mean, my jaw aches, but it’s only really bad when I bite wrong. So, we don’t need to wait, but it makes sense. In this photo I have that headache, rapping the back of my head, jaw pain, my hands are achy from fumbling for stuff, shoulders are cranky, they don’t like holding cameras, and my abdomen/hip on the right side is doing that “you really could lie down you know, sure it bunches up your neck, but so what?” But I’m still trying to look cute and show off my makeup, because this is the Internet. Everyone has a perfect life here!

Why do I do it then? Because otherwise I just lie here bored. Some days that’s all I can do. Some days I need to get my family in order. Things take a lot longer than before. My memory is bad. It must be the pain. My neck hurts so much. I can barely keep track of what I’m doing.

I have been buying tons of makeup again. Partly because I can’t keep track of what I have. I was half-joking with my husband, saying makeup is all I have. I started listing all the things that were no longer available to me:

  • Sex
  • Watching complicated television
  • Milkshakes
  • Travel
  • Dancing
  • Beaches
  • Carbonated Beverages

I went on for a while until I felt good and sorry and it was no longer funny in the slightest.

However, I have discovered a few things that I can participate in:

  • Iced tea with aspartame (I do not care, this is keeping me alive right now)
  • Watching comedians on various corners of the cable service
  • Wearing my zebra outfits
  • Lovely Brand caramels, made with condensed milk – which isn’t FODMAP friendly, but if I only have a couple I do okay. The Sea salt ones are so good!

 

This cheered me immensely.

My son turned 13 yesterday, and my husband made a FODMAP friendly cake! Isn’t he the sweetest? Chocolate, which is the boy’s favourite. The girl likes vanilla. I can’t believe I’m Mom to two teenagers. That’s so weird. I’m just a teen myself! Well, it seems that way, in my head.

Speaking of my head, I spend most of my day in it. I deliberately stay away from people and try to stay busy. I’m always doing something. I have two blogs. My kids require as much support as I can give them, my husband needs loose ends tied up, and I need to maintain my health. All from my bed! I can get pretty foul tempered when I’m in pain. I want to save whatever good mood I can muster for those to whom I’m closest. I want to be as unstressed as possible, and that means releasing myself from as many entanglements as I could.

I even told my MOTHER I needed some space right now.

I see you people hanging on there. I appreciate the hell out of you.

Don’t think I don’t see the irony of me saying “people should really talk more” and me just dropping out of society, but if you were in my head you would totally understand. I feel like there’s a gremlin on my shoulder chopping at the back of my head. My neck is stiff, it hurts to turn right or left or look up. My jaw is stiff and sore. It’s tough to think and comprehend what people are saying. It’s quite embarrassing. It gets worse as the day goes along. It feels like I was put in a blender. My brain is spinning. It’s difficult to concentrate. I’ve been working on this post for two hours now. I’ve lost parts of it. Doing anything is like this. This is not what I am like. I am efficient and organized. It’s a nightmare for me.

I don’t remember if I said this, but the doctor said he was referring me to someone who was going to examine my neck/head and potentially do a block. I think that’s what they thought, but maybe an MRI first. Or an x-ray. Would be good. I don’t want them poking around without any idea of where anything is. I mean, even the dentist takes x-rays.

My face is killing me. I only need to make it to tomorrow.

Love to you, Zebra pals! 😘

 

…as a Kite! 😄

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The pain has not subsided in any way. I’m just lying here, taking my breakthrough meds as prescribed, and trying to hold off going to the hospital.

To answer proactively,

Why I don’t want to go to hospital:

  • It will greatly upset my kids, who are currently struggling with anxiety.
  • I do not think there is anything they can do for me there that I can’t do for me here.
  • If it is, in fact, a cyst, I am not having surgery, they will just send me home anyway.
  • Anything that is wrong with me, actually, they will drug me up and send me home.
  • I have more suitable (not better, granted) drugs here, until I really can’t take the pain.
  • I will be more comfortable here no matter what.

So, this is why I’m trying to hold out no matter what. I’ve been through this before, and it isn’t fun, but it’s definitely surviveable.

My husband is working from home today, so at least I feel protected. That’s not the right word… 🤔

Enjoy your day, Zebra friends! 😘