The Migraine Dance

giphy2

I don’t really know what is going on with the back of my head, but it might be a migraine thing, so let’s call it an offshoot of my migraines for now.

I’m learning to dance with them. They are leading. I need to lie down when it’s time to lie down. Sleep when it’s time to sleep. It’s rather like having a newborn in the house, only I’m the newborn! Although I do like the idea of rebirthing myself. That may be too deep for my brain at the moment.

This does mean I’m keeping irregular hours. I did see my

20171012_222509

If we ever have competitive napping, though… I nap hard!

husband for a few minutes this evening, as I woke up to use the washroom as he was going to sleep. So much for my 4 hour nap. More like 10. I will sleep more. It’s 1 am now. By 2 I should be ready again. I need 18 hours every 2nd day.

I’m almost ready to plant myself at the ER.

My neck and back cracked loudly today, but the pain ended up intensifying in my neck. My back feels better. My toe feels like it’s healing, too.

I am supposed to be getting the Botox shots for migraine on the 24th of October, I think. The clinic can at least do that. I’m hoping that helps, because it did help a bit in June. I do tend to sleep more before my shots, as the pain gets worse and I’m 2 months without now, so I guess it isn’t abnormal for me, but geez, I would like to see my family.

Five minutes should be enough. 🤣 they’re teens!

I know this sounds like exactly the opposite of what I just said, but it isn’t. Those times I am awake, I am pushing myself just a bit to accomplish things. Blogging, putting on makeup, organizing this or that. At least when I’m sleeping I don’t feel like I’m not accomplishing anything, either. I’m trying to be awake between 6 am and noon, at least. It seems to be my best time, and I am happy I’m getting a few small things done.

Life. Still good. Bitchy as hell, but I have some great companions! 😁

The Appointment

giphy

I haven’t posted in a bit because my head and neck pain has been really bad. I have been trying to cope as best I can with frequent resting and making sure I take my medication on time. The pain has still been so overwhelming, the only thing I could really do was sleep. So I was sleeping up to 18 hours per day. I had also developed this weird swelling of my mouth, but I think we’ve figured that out. I didn’t have it last night, so cleaning my mouth guard seemed to help.

I was really hanging on for my doctor appointment.

Husband and I arrived well in time for our 8 am time. We waited a few minutes and were called in. He asked what we were there for, and I began describing my symptoms. He stopped me and asked if we were dealing with this before with the previous doctor. No… He referred us to you, the neurologist. Oh, but he’s not a neurologist! He’s an anaestheseologist! This appointment is to ensure I have enough medication!

My husband spoke for a while after that while I tried to compose myself. All I know for certain is we have more of the magic cream that makes my neck feel awesome for ten seconds. It’s actually not bad.

There is no neurologist on staff, but they are hiring one. So he will refer me. It will just take a long time. I also demanded a referral to a gastroenterologist, which he tried to dance away from, but I insisted. Sorry if you have to do work, doc.

I saw my GYN on Tuesday, much better appointment. She feels my period was a one-off. No cysts or anomalies on the ultrasound. Did a full exam, while uncomfortable, we determined most of my pain was likely gastrointestinal, hence the gastroenterologist. I have a very sharp pain on my lower right quadrant that is horrific. She also gave me a prescription for visanne, should things get out of hand.

My husband was brilliant and rented a wheelchair for these excursions. It made things so much easier! I didn’t feel like I was dragging myself down the hall. We have a prescription to buy one. We should get on that.

I’m not entirely certain what to do now. I can’t live like this for 6 months until they sort things out. I will get in touch with the EDS clinic and see what they have at that hospital.  My GP will refer, he just doesn’t know to whom.

The other option is ER with every flare. Not good options.

Oh, and I will be getting my migraine shots, at least. They are set up for October 24, with a doctor who is amazing, so that’s positive. He doesn’t do the rest of the body, though, and a shot in my pubic bone would go a long way to less pain. My back… I could probably do it myself after 12 years! Ha ha!

Ok, getting tired.

I’ve bought a bunch of cute things to cheer me up lately. I hope I have the spoons to show you soon! 😄

Hugs to all.

💜

Stunned.

giphy3

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

giphy2

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…

💜

 

 

Mercury in Retrograde

giphy12

Mercury is supposed to be in retrograde the last two weeks of August, which is why I’ve had this horrible feeling of dread. Or so I’m telling myself.

I was so restless last night, I just could not settle. I was tossing and turning. I had to strip off my nightclothes, as they were getting all twisted up. I tried to make myself a nice pillow fort, but it didn’t work. Mostly, I kept swallowing air and having to sit up and clear it. Very uncomfortable. Not so ladylike, either.

I did fall asleep around 2:00 PM, though, and sleep until 9:00 PM. I usually have no trouble going back to sleep. I’ve been just exhausted, especially after getting outside to see the eclipse! (I will post about that soon!) .  At one point in our history, people used to go to bed around 7:00 PM, sleep until 11, be awake from 11 until 1 and then sleep from 1 to 5 or 6. I could live like that quite happily.

I don’t know if you believe in numerology, I tend not to, but this year my age is divisible by 7, and those do tend to be big years where I re-invent myself. I feel different this year. I have a new outlook. 😊

I bought yet another elbow brace. Size XXL.  Now, I’m not that big anymore, why do I need an XXL? Otherwise I’m ripping them off in agony in the middle of the night, only after a few hours. This one lasted seven. I do feel better, but woah, it’s sore. My hands are sore, too. I’ve been trying to rest them, but you really need your hands! XXL is pretty tough to find. I’m actually using sleeves, not braces. I will save braces until I’m fitted by pros.

Yesterday was supposed to be my BOTOX injections.  I haven’t heard anything from the clinic, but I’m doing amazingly well, considering. I’m not having that much head pain at the moment, but it does ramp up quickly as the day goes on. I’m having a ton of abdominal cramps. I am wondering if my cpap is contributing to my swallowed air. I need another sleep test. I’m to have them for every 20 lbs I gain or lose and I’ve lost 115 lbs without any follow up. It’s straight up due to my mobility. And, the pain therein.

And of course, just the stress. I feel stressed. I don’t really know why. Maybe it’s the start of school again. I worry about my kids. My boy didn’t have a great year last year. Grade 7 sucks, though. I need to focus on being relaxed today. My breathing. Relaxing. Perhaps some organization if I can. I love that.

My corner of the bedroom is bringing me joy. I am organizing things so they are easily found and accessible. I have a bunch of trinkets and items to make me happy. Netflix on the television, my makeup organized and close by. Masks and makeup products. Some cool magnifying and fisheye lenses, a zebra striped cuddle blanket. Enough braces to brace an army. Iced tea and lip gloss.

Life is good.

💜

Rough Night.

giphy8

I have been having horrible abdominal cramps the past couple of weeks. I was diagnosed with Endometriosis in 1989. It was originally thought to be the source of my pain. I have been fine since I had my kids, mostly due to the Mirena. I’m on number 3, and am on year 2 I believe, so nothing should be wrong. I haven’t had any spotting. In fact, it had been working miraculously in helping me with cramps.

Over the past week, I’ve had discharge as if I was ovulating, (that’s one thing about chronic illness, being really in tune with your body. I knew exactly when I was ovulating, which made pregnancy a snap). The cramps were slightly menstrual-like, but more sustained ovulation-like. Mittelsmertz, if you will. Yesterday I was so distracted I even forgot my medication all day!

I went to bed early, I was generally uncomfortable. My head is hurting at the back. Around midnight I woke up screaming with intense abdominal cramping. Did I have a cyst burst? It was just on the right side. The pain lasted almost 20 minutes with me just babble scream-moaning for that time. It eventually subsided, but I’m aching intensely this morning. It could be that I caught my ovary or twisted it a bit. Or a bit of adhesions ripping. It could be anything. Well, not anything. I don’t think it’s actually a hedgehog on a rampage. It just feels like it.

giphy9

This was under the gifs for Endometriosis.  I thought it completely appropriate.

I had a horrible time trying to sleep last night. I just couldn’t. I took extra meds, but it didn’t help. I read some junk on my tablet.

I have my makeup in stacked bins beside my bed. At 10:51 pm. The past two nights, a whole row has fallen over. 😮 spooky! I know my family has been in rough shape because we’ve all been in bed before 9:30 both nights.

I’m curled up in a ball, trying to amuse myself. I’m focusing on taking my meds, having some fun, and taking things a bit easy. I don’t know quite how this will play out. My gynecologist is part of the pain clinic, for the endo part anyway. I don’t have one for other stuff.

The BOTOX shots help a ton with any cramping or discomfort. I had forgotten how much pain this can cause.

My husband might just swaddle me and leave me at the emergency room. 🤣 Like he was giving up a newborn. What should the note say? Tag you’re It? She’s your problem now?  😈

My husband had no idea what to do, so he did nothing. I’m not exactly thrilled. We should probably have a discussion.

Another issue with my doctor being absent is he made a lovely compound for me, well, ordered, and I’m now gingerly using it. I don’t know if I can get it again. It has gabapentin and ketamine in it, it’s a lotion, and it’s unbelievable. It fixed my abdomen earlier. I don’t have another doctor for this.

It was upsetting when I mentioned my doctor situation on Facebook, people started speculating he was ‘up on charges’ that is such dangerous speculation. I took the post down. I wasn’t strong enough at the time. I’m still worried about his health.

Anyway, I need to rest. More soon.

Oh! I’m down to 188. This was the 20 lbs I was keeping for emergencies, remember? Heh. Oh well. Eating is hard. Nausea is pervasive. Heartburn is so often. Even though I’m on the max dose of medicine for it. I just rechecked the BMI charts, and I need to lose 15 more lbs and I’m normal weight. That blows my mind. I was certain I’d never lose this weight. I suppose I like being slim. I’m not so certain I like the attention from men. Wait. I like the respectful attention. I don’t like the disrespectful attention.

Ok, bit of rest now. 😊.

Upsetting News

giphy2

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.