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!

Remember Me?

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Hey everyone! I’ve spent the last two weeks freaking out over this past weekend’s beauty convention! It went over very well, and I’m hoping to soon have a cross-post up between my two blogs about my experience.

I was very nervous about this weekend because I purchased the tickets for me and three friends in March when I felt fairly well. With the head and neck pain I’ve been having, I wasn’t certain I could endure the entire weekend.

Add to this, I had my BOTOX injections and broke a crown on my tooth and had to have dental work done. Ugh.

Oh, I missed this story, so on the day of my BOTOX injections, there is a volunteer in who isn’t the usual. She comes in the lobby and calls for Diana. I ignore her, that not being my name. She then calls Diana with my last name. I figure it out. I stagger over, followed by my husband. I apologize for not answering to the wrong name before, being the Canadian that I am, and educate her on the correct pronunciation of my name. DAH-nuh to rhyme with banana. She gets all put out. She goes to the file and starts whining “Well, it’s just that we have four names here for you!” My husband goes over and asks what they are. She’s referring to my first, middle, maiden, and last. The only one I don’t use is my middle. And there’s a short form of my first name I use. So she lightens up a bit.  Then she comes back and want to know if she needs to fill all the serum, if we use all six vials. I told her yes. As we’ve been doing this for three years now? Maybe two and a half. She then says, I don’t know, it’s kind of a lot… And then looks to my husband for validation. 😠 She comes back after with another administrator, and thusly begins calling me Dayna for a good five minutes. I won’t even mention her mocking my husband when he went to get me up when he thought the doctor was ready for me but he wasn’t. I will send a note, though, to patient relations. Yikes!

Back to the convention, so after my BOTOX, I had my tooth fixed, went home, rested up and was really anxiety and pain ridden, and I couldn’t figure out why. I was angsty and stressed and such a mess. But then, as soon as the event was over, as my friend got in her car and drove away….

My throat began to hurt….my tongue began to swell…my lymph nodes are swollen and sore. I couldn’t sleep my tongue hurt so much last night. I’m glad it waited, that was kind. I do need to have my husband book off work to take me to the doctor. I can’t go alone. I get really upset and stressed when I’m sick. Sometimes even before I know I’m sick. It started in my 30s. It’s almost as if I am afraid to be vulnerable. I remember one day being so ill I could hardly walk I had such a cold, but I had decided I had missed four days of work and that was it, I was going in. It didn’t matter it was 8:30 at night, I was needed! My husband talked some sense into me, but I get so irrational.

A couple of conclusions: last time I went out socially was last August. This isn’t acceptable. I need to get out more, as does our daughter, so we do not have this much anxiety.

The world certainly treats you differently when you are thin..ner. I’m not quite thin, but I’m thinner. I’m about 60 less than last year? Wow. Last year someone asked if I was my friends’ mother. That’s the one who spoke to me. This year? Compliments and chats and nobody speaking to my carer (pusher? 😁) first…well, mostly…. but that’s a story for later!

There were actually moments when I didn’t notice my pain. I feel miles better today, spiritually, anyway. My mouth hurts. I’m thinking strep. All that turning of my neck may have worked out some kinks. Now, I’m far from sprinting a race. Much of this is because of a good medication balance. I did have two pretty scary incidents where my knees just buckled under me. My friend who is a nurse thought that was pretty cool, I think, except one was on stairs. It’s that with no meniscus, it feels like one bone goes one way and the other, well… I also had my fingers go out yuck. But in the grand scheme, I will take it.

I will try to get that post about my experience together, and I will let you know!

😘

Progress!

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Finally, some good news! After another hellish treatment with Botox, (actually it’s not the needles that hurt, it’s feeling around for the trigger points to inject, because even gentle pressure on areas of my body really hurts). And I need to tell you the story of my day, still, because it was funny, but I’m still worn out.

My doctor gave me a cream for my head pain and said I can actually use it anywhere. It’s a bizarre mixture of ketamine, gabapentin, and other stuff. So far it’s helping to a certain degree. It may take time, though. I tried it first on Wednesday, and was immediately sick. But then the pain subsided slowly.

I tried it on my stomach last night and this morning. This morning, I was immediately ill. I may need to ramp up even slower. I don’t know quite how, except one part at a time. You only use a half a pea size amount per small area. My entire abdomen takes 1.5 pea sized amounts.

So, I guess this stuff is pretty strong? Or I’m just sick by coincidence, which is possible, because I hurt to be touched and my husband was rubbing some of the sorest spots on my body. Gently, but, sore nonetheless.

Just a bit about my doctor appointment from Tuesday: after we did the treatment, we had a chance to talk, and my doctor is concerned about my head and neck pain. He is sending me to a neurologist, even though he is one himself, he doesn’t have time to deal with this, his hands are full. The neurologist will consider a nerve block, likely, but will investigate the source of the pain.

My husband asked him what we should do in future with pain like this, and he shrugged without shrugging. It very much depends on my health, the danger, circumstances, everything, really. Am I in pain? What do I need? What am I looking for? So I asked if I should have gone for my head. He told me he won’t know until they find out what’s wrong. There ya go.

Last bit of gossip is we discussed my gastroenterology problem. I am now down close to 120 lbs. There is no way at nearly 47 years old I should be bedridden and losing two lbs a week. It makes no sense, metabolically. At about 193 lbs now, I’m only 25 lbs overweight. That blows my mind. I’m glad I’m getting something out of this. Um. I hope it stops somewhere. Anyway, my doctor agreed, and said this should be another priority. I then looked at him and said, this isn’t making sense. This doesn’t sound like just EDS. Something else is going on here. He was silent. He went back to writing scripts. He then said, I think you’re right. I haven’t seen anything like this, it’s progressing too fast to be just EDS.

Sleeping is easier.

Have a stellar day, Zebras! 😘

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! 😘

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! 😘

 

Oh! No! More Fuckery!

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Remember how I said I clench my jaw when in pain? Ha! Ha! I woke up yesterday with a chunk missing from one of my crowns. It hurts like hell when I eat and misfire.

Hubby called my dentist right away (he’s on call) and we giphy9decided I could hang in until Tuesday after my shots. Combination of convenience of everyone, me getting some lidocaine in my jaw before lying there with my mouth open for hours, and the probability of me getting up the stairs. The dentist asked me if I needed pain relief. I laughed. He called me back in the afternoon to check up on me, he wanted to make certain I could make it to Tuesday, still. Also his best tech is on then. It makes things go quickly. See why I’m so reluctant to leave? He also mentioned it is a medium sized cavern, now that he’d checked the records. It’s work we had done about 10 years ago. Ten years? With my grinding? Woah.

I’m also being fitted for a mouth guard. I asked for two, fully intending to pay, because it’s worth the number of times I drop it and can’t reach it and then can’t nap until my husband gets home, or drop it and can’t rinse it. My dentist was all excited about this new tougher guard, so my husband will have to try to explain. I don’t think he even heard me.

 

Today is my son’s 13th birthday! I am the mother of teenagers now! Woah, I’m old. Ha ha! When I was young, I never imagined myself this old. I just didn’t! So weird…

I can’t wait for cake!

 

Have a wonderful day 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.