The Appointment

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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.

💜

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…

💜

 

 

Mercury in Retrograde

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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.

💜

Netflix and Nausea

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My Zebra Strong tee arrived! Booster.com helps charities with fundraising, so they are a cool place to check out.

The past couple of days have been interesting. Yesterday morning I accomplished quite a bit. I cleaned a bit of my bed area and my outstanding computer files. I’m transitioning from a Yahoo address to a gmail, so I did some of that.

I napped all afternoon.

I’ve been watching a lot of Netflix. Mostly Documentaries, interspersed with Embarrassing Bodies, which mostly involves sexually harassing the male doctor, but I’m alone in my room, he can’t hear. ☺

My head hurts. I couldn’t keep down breakfast. I’m almost used to this pain now.

My memory gets really lousy as the day goes on. It’s awful. I did go on a journal spending spree and got some nice ones!

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There are some dotted pens. They are cute! I bought a proper Address Book. I won’t have to fire up the computer every time I need an address! There were three plain journals, and two holographic/iridescent journals. I’m in love with holographic or iridescent products. ❤

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Pretty! And, of course, you can see the reflection of the ring light.

It’s been thunderstorms like crazy here! 😮

I’m incredibly bored, so I’ve made Amazon my bitch, and it’s giving my husband heart palpitations. I’m terrible, I can never do just one thing at a time. The tv is on, but I have to be futzing on my tablet or organizing a drawer or writing a list… I need to Zen more. I should slow it down.

Although I felt awful today, I’m feeling better than I was this morning. My back doesn’t hurt as much, my head is okay. I might try a quick look.

It’s amazing how your pain can change. I know I’m delicate today, though. My abdomen is threatening cramps if I’m not careful. Is that the Endometriosis acting up?

Today will be quiet, with some masking, skincare, Netflix, naps, photos, and maybe a makeup look if I can.

Moving slowly, though. No need to rush!

Hope you have a great weekend!

 

 

Friday Evening, Before the Long Weekend

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My tee from the Ehlers Danlos Society Fundraiser is here! I think there is another one on now. Go to Booster.com. There is also a Zebra Strong campaign that looks interesting. I’m waiting for my shirt from that one.

There have been thunderstorms all week here, and the humidity has been awful. My bedroom is hot as hell.

My head pain has been bad this week. Still haven’t heard from this neurologist. I’m three weeks away from my Botox injections, so I will follow up with my pain guy. Unless I end up in the hospital, first. I’m having terrible abdominal pain. It feels cyst-like. I’m curled up in a ball again. Glad we have the new tv. Netflix is easier to watch. They also have True Stories of the ER, which I love. The acting is awful.

Eating is awful again. My digestive system is super slow. I have lunch, and now it’s 7:15 and I’m still not hungry. Another hour maybe. Really, my neck hurts so much, I can’t think about it at all. The nausea comes and goes. I’d rather go back to sleep. But that’s no life.

20170804_185439Please ignore the clutter, but that’s my makeup stash in the background. I bought this awesome gadget from Kikkerland. (Kikkerland.com) it’s a tablet holder, and I currently have my timer on it. It attaches with a clip, and has an adjustable arm. It’s only about $20. I bought this after video messaging with my cousin and finding it so difficult to hold my tablet. Now I can watch tv shows, Netflix, listen to podcasts, and it also takes fantastic photos.

Another neat gadget I found, also at Kikkerland, is a 20170804_185357phone holder. I was forever losing my phone, and this way I always know where it is, I can find it easily, read and reply easily, and it was only $15! I’m delighted. This also attaches with a clip and has an adjustable arm.  Don’t laugh at my BlackBerry. Husband is in IT security and insisted on BlackBerry. Also, mess. As you can see, I use the IKEA metal rolly cart for a bedside table, and it’s amazing!

This weekend I plan to do some serious rest and relaxation. My XL elbow brace arrived, I need to do some serious skincare, my skin is in need of masking, I need some extra rest, and I have extra correspondence I need to catch up on.

I’m trying to get organized in many aspects of my life, however I need some assistance. Getting this assistance is almost as tough as doing it on my own.  Sigh.

 

Onwards. ❤