At The Bottom, Looking Up.

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I’m trying to stay positive. I want to be positive. But my body is revolting (joke). I have never been in this much pain before. If you remember, I haven’t had any Botox injections in my body since last June. This was a treatment I had been having for 11 years, every 10 weeks. I have also only had one migraine Botox treatment since then, October. So no relief from the neck and head pain or migraine pain since then.

My sleep is terribly fractured. Pain keeps waking me up. My current doctors don’t feel qualified to prescribe what they feel I need to help with this. I did sleep for 24 hours Friday to Saturday, so that was amazing. I did have to take a bunch of medication, still within my prescribed plan, to get there.

There’s a bunch more, but it’s a bore. The meniscus in my knees have gone. I would love to watch me walk as I dash to the washroom, because they are popping in and out like crazy. It must be hilarious.

The point is that I will be incredibly fresh when I get to the EDS Clinic next month. I will have had no treatment since October, just my meds.

I’m like a goldfish right now. I try to keep thoughts in my head, watch upbeat shows, save my energy for my husband and kids. I cry much of the time. I don’t even realize it, but the tears are there. Pain. Exhaustion. I don’t want to sleep through life! My kids seem to be doing quite all right for the moment! It’s really new, so I am crossing my fingers.

I play with makeup a lot. Although it will take me 3 to 4 hours what should really take 45 minutes. Distracted by tv, Looking for stuff, what was I doing?, oh yeah, that brush…

One of the scariest things is that I’m getting pins and needles down my arms. I can’t feel my fingers that much anymore, my fingers are all cracking and cramping. They become more and more useless. I have to figure it out, but I never have the strength to. Or I never remember when I’m at that moment. Grrr! I even keep a notpad to write things down, but I haven’t captured it yet.

My husband is being wonderful, as usual. He has been baking gluten-free brownies every week so I can have them with my evening medicine. My gynecologist put me back on Visanne so maybe we can stop some of the cramping. Yay! Acne and weight gain! I’ve put on 10 and taken off 2. I had been hitting the chocolate pretty hard over Christmas.

Anyway, I’m getting pretty tired. Hugs to everyone going through same or similar. When I don’t have energy for makeup, I have been making some crappy crafts by covering old containers with duck tape. The decorative stuff they have out now.  I will try and take a photo of some projects if I can. They aren’t gorgeous, but they keep my hands moving. It’s something to focus on, other than what’s hurting now. It’s good.

I Have Two Speeds…

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My symptoms tend to subside in the summer to an amazing extent, now that I think about it. It’s surprising, considering the amount I hurt now.

I essentially have two speeds at the moment. Feeling as well as I am able, which is pretty alright! I can squeeze a good almost five hours out of a day if I rest up appropriately, three if I want to keep going.  That is amazing. My hands hurt and my back, neck, and head are often excruciating, but distraction and movement are good.

Sleep has been a problem, however. I am exhausted at 9:00, I take my sleeping pill and at 10:00 I am wide awake until 2:00 am. Without the pill, I fall asleep and am awake at 2:00. Sleeping during the day means I don’t sleep at night. I’m at a loss. I guess I keep trying until it works itself out.

My tongue isn’t swelling any more, so perhaps it is just getting the last bit of this illness.

Okay, off to tackle the day! 😁 have a good one! Sure, it’s 1:00 p.m. I’m a slow starter. Today, anyway!

 

 

I’m a Badass!

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I survived my Botox injections yesterday. My regular doctor did them and started with the migraine portion and went down my neck and down my spine and back, to my bottom, and back up thru the other side. I then flip over and we start on the front. When he reaches my abdomen is usually when my screaming starts. It hurts so much.  After, I calm down fairly easily.

My husband is always looking after me. He’s so caring.

After, we spoke with the doctor.  Cleared some things up. We made another follow-up appointment. For October.  Right before our 16th wedding anniversary.

We headed to the car, well, the lobby, hubby picked me up. The dentist was ready for me, so we headed straight there. Skipped lunch. Had my crown repaired. X-rays, no cavities! In fact, no extra work to be done. Mold for mouth guards (2) because if I drop one, and it’s inaccessible, I can’t go to sleep until someone is home to rescue me. And with my hands becoming fumblier and fumblier, it just makes sense.

I had to crawl up the stairs to bed, but I made it.

I need to return on the 30th June to fit the mouth guards and finish the cleaning he started. What a treat!

That’s the short version. I will get you the long version soon, as it’s pretty funny, but I’m really tired and the back of my head and neck are killing me!

Be well, my Zebras! 😘

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 I 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,  including myself. The doctor runs out of the room, embarrassed, leaving me to get it together.  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,  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.  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! 😘

 

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. 😁 I may slip up occasionally.  It’s not a tragedy to me. We aren’t in hiding.

I’m Gorgeous! (Not)

I had a super painful boutique of painsomnia last night. As I was u6hjv9jgygs4orolling over to my left side to go to sleep, my left knee subluxed and I was in a lot of pain. I couldn’t quite settle it into place, and lay aching from 10:30 until I gave up at 2:00 am.

At 2:00 am, I gave up and picked up my tablet, started playing on the internet. I had to dim the light way down, because my eyes really hurt. I was able to chat with my sister in Beijing around 6:00 which is a nice treat. I haven’t spoken to her in a while. She was on vacation in Indonesia recently, and didn’t even load photos up anywhere! But Saturday is her busy day, and she told me this hilarious story about one of her 4-year-old students punching her in the face. I’m pretty sure the hilarity was in the telling.

After we chatted, I fell into a restless sleep, and woke up to my alarm at 10:00 am. Damn me for deciding to be productive on weekends. I hit the snooze for an hour and got up to use the washroom. I got back into bed, and decided to survey the damage of my face.

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My left eye is quite swollen. It looks hilarious. It’s not quite as weepy, but is tender. When my husband brings our son home from therapy, I think we should call Tele health and check. My eyeball isn’t infected, or I should say affected, I’m just sore around the eye, the left one, and I sleep on that side -so it’s drained into that sinus, we figure. I have taken Benadryl allergy complete, and am sitting propped up, but it’s not draining, really.

I don’t want to go to a walk-in clinic, especially while flu-ish because I don’t want to catch something worse. If it’s not urgent and can be managed, I’d rather hang on and go see my GP on Tuesday, because of course it’s a long weekend! I’m sick just about every long weekend, it’s a running joke. Our daughter is sick, too, poor sweetie.

To add to my grotesque appearance is a large pimple where my chin used to be. It’s scabbed over now and looks like a cold sore that got lost.

I need a bath so much. I am so sore, and my hair has been two weeks without a wash, and needs detangling. It would have been so good if I could have gotten to it even a day or so ago! I just do not have the spoons. I will have to tackle it first thing tomorrow. Put the family on notice. I feel so weak.

I had a neat conversation with a friend today. She is a nurse, and gets the flu shot because of being around immune compromised people like me, but she hadn’t noticed a difference herself. I explained how normally, a flu could keep me sick and essentially unconscious, because I’m sleeping to get better for six weeks or so to gain my strength. But when I have a flu shot, and they get them right, I recover much quicker. I’ve been sick nearly a week, but I’m not sleeping the whole time, and I have been keeping food down, etc. She didn’t realize it could be that bad. She’s so lovely. I’m sure she’s a great nurse!

pg2bvxtorfh32I went on a bit of a shopping spree last night. Urban Decay was offering triple points, and I’m determined to make top-tier, for some reason; and then I bought some lipstick. If I can’t put it on, at least I can buy it! I have to stop with these sprees, especially when I’m over budget. Our tax system is such that our payroll tax, I think it is, starts in January, and when your contribution is full, they stop collection, around July. This means my husband loses $1,000 out of his cheque for six months and then we forget the rest of the year. Every January it’s a new round of belt-tightening. What? Save money for the lean times! Pshaw!

There have just been so many escalating costs, too. Especially just around the first of this year. I think I’ve whined about this plenty. I won’t bore you more. It’s tough finding things to do when your concentration isn’t great, and your hands don’t work so well. Online shopping is so much fun, but that gets old too. It’s just stuff. I am enjoying playing with it when I can. I’m enjoying blogging here, too. I’ve met lovely people. Only lovely people.

I’ve offended people talking about my spending, but they may actually do things, outside, like in public. I don’t think they even realize there are months I don’t get to leave the house, so $300 on makeup isn’t horrid. What did you spend $300 on last month able person? Lattes? Taxis? Lunches? It adds up. I didn’t have those expenses, at all. But I do realize I have privilege. Many people don’t have the means. I married a smart, hard-working guy, and we have had some really lucky breaks along the way.

I’m aware I may be babbling. I’m in that hazy, cool, fun, dreamy, tired state.

I often resent that I had to stop my career, such as it was, to tend to my broken body. What could I have done if I had gotten proper support instead of being encouraged to go on LTD? Would I have been a better employee were I not in pain all the time? I don’t know. Life is this way now, and I’ve spent so much time getting to know myself, I wouldn’t trade with anyone now.

Our son is going on a class trip for four days next week and I’m stressed.  He’s growing so fast! Ugh, these kids give me so much stress, and are my world, all at the same time. I didn’t realize parenting would be as much fun as it has been. I’ve laughed so much along the way! There have been lots of tears, too. But lots of laughs. I will be so relieved when he’s back home.

Probably should nap now. My eye hasn’t changed, but is getting tired.

Wash your hands, my zebra pals! 😘

 

My EDS Hands

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As you can maybe guess, I am kind of in a strange mood today. Positive, but strange. Twisted. Amused. I slept yesterday afternoon for a good chunk. Three hours. Until my son came running home, pounding on the door because he lost his wallet and keys. Daughter refused to open the door, as she thinks he should get his keys out and open it himself (unaware he has lost said keys). Brilliant husband figured out son’s route home, called local convenience store, and voila! Found wallet and keys.

 

My wrists are feeling better today, but I will spend some more time in

Side view of brace for right hand, my thumb goes in that pink loop.

those cast-like braces. They help so much, but there is just not much to do with them on. I really need to be evaluated by a specialist. I may need one of those fancy thumb stabilizers.

I have finger splints,  as I have swan neck deformity of the fingers. I will post a photo of that one day. It’s not too gruesome to google. I find, though, the finger splints don’t relieve that much pain. It’s equal to resting. The brace or splint does do quite a bit more.

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Top view of right hand brace.

It’s going to be a low-key weekend. I will rest, wash my hair, maybe do some makeup try-on for my blog http://www.squidgesbeautyhaul.wordpress.com, but that’s it! Fun only. I won’t be posting, I will be resting my wrist. Maybe trying out voice to text.

I’m certainly feeling better than I was last week. Still in bed, at least I’m not crying, too! Baby steps! 👣