Bad to Worse

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I suppose it makes sense I didn’t see this coming. It would be logical my brain would block out the natural next step, wouldn’t it?

My BOTOX injections have been cancelled.

I was due on August 22, so I’m about two weeks away. This means my migraines are slowly ramping up again. For me, this means my headaches that I usually have at the front of my head are slowly coming back. They are almost constant once they are fully ramped up, which they usually are by the time my appointment rolls around.

The person who called said they would reschedule once they had things sorted. But it would be after August, for certain. My back is at a state right now where I can barely move. My neck… It’s in bad shape. By evening I’m incoherent. I was hoping within the two weeks I would be able to touch base with him and at least ask him.

We still have no idea what is going on, however, husband dug around and found a couple of complaints at the College of Physicians and Surgeons of Canada. One is about him improperly examining a woman’s breasts, and another is about improper procedure. Both within 2015-2017. Now, this doctor is 74 (we figured it out). I have been his patient for eleven years. I am very sorry if he made someone uncomfortable, but I have trouble understanding the first charge. I do know what it is like to be in pain, however, and I have seen the looney-toons that walk into that clinic. I can understand a misunderstanding happening. I am completely certain she believes she was violated. There’s a reason I bring my husband along, however. He often sees things without the haze of pain and remembers things I don’t. Also: witnesses.

However, yes, often the staff would forget to have him or us sign consent forms until after the procedure, and that is bad. As head of the clinic, he needs to be responsible for that.

Now, I don’t know if this is why he is off, or the stress has gotten to him. But I understand the first complaint. If the second complaint caused a stoppage of business, I am enraged. Complaining about something like this to the College and denying thousands treatment, especially after losing another pain doctor recently (He murdered his wife, but still)

Not only that, but my pain doc prescribes a bunch of my meds that no other doc can prescribe.

Having said that, the office manager at the EDS clinic at General said we should hear within a month, and if not to call and find out what’s going on,

Husband will call and update her and my pot doc to advise them of the situation and let them know things may be changing going forward.

I am shopping my blues away. Thank goodness it’s cheap crap on Amazon. I will show you some of the cute stuff I acquire.

All we can do is wait and see. I may just give up and go to the hospital. I have enough medication to keep me semi-conscious and get me through. Actually, it’s not that bad. I make myself zone out so I can be in that hazy semi-sleep state. I am going to be much better at taking my medication on time.

I’m even going to work on vaping. I’ve stopped because it hurt, but I’m going to start again. It shouldn’t hurt after a while!

Ugh.

Misery Inventory 😭

giphy1Please laugh at my misery. 😁 I am having a pretty lousy day.

It actually started last night. I did my makeup for a friend’s birthday, (once again, just ask) and I was just tuckered. I fell asleep at 5? And asked husband to wake me at 8-ish. He claims he couldn’t wake me. This could be true, as once I was in hospital, and the doctor actually picked me up and shook me, I could feel her do that, I felt myself trying to wake up, but I couldn’t. So I sleep deeply. I have CPAP, don’t worry.

So I woke up this morning, just barely, and my head hurrrrrts. My neck is just aching. I can’t follow a thing. I’ve tried four documentaries and they make no sense. I have to write everything down or it’s gone. I did buy a bunch of journals over the weekend this was so much fun, though.

My stomach is killing me too, though. I have heartburn, unusual. I’m so careful, and have been not cheating. I guess the chips are out. Lightly salted, too spicy. 😐 I am so very nauseated and yet am hungry. Plus my stomach hurts. Just the actual physical area of my stomach hurts. I was wearing a bralettes and it hurt, so I had to take it off. Another day where I can’t wear clothes, they are too much pressure. Physical pressure. My nightgowns are too close around my throat, though I know they aren’t. Any seam hurts. My fuzzy blanket is all I can handle. We’ve had honest discussions with the kids why mommy doesn’t wear clothes sometimes, and why that is a problem in society and we have to give her privacy.

Anyway, my stomach is acting up, but I did have a BM today, which is fantastic! 😀 I used to have to have shots that would reverse the opioids I was on so I could go. It was not a fun time.

But in addition to this, I’m having endometriosis-related cramps, and I can’t figure out why. I don’t know if my body is adjusting to the weight loss, which seems to be stable for now, around 195. Everything hurts for now, and I can never remember what I’m supposed to do.

I finally got it straight with husband. I’m supposed to take marijuana oil and then vape, but I don’t have the strength to vape. I don’t know if I’m just being lazy? Oh, hell no. I am not a lazy person. I really can’t. I don’t think it will do what I need it to do for my neck, anyway. I would really love a bath, but I can’t muster myself to get in there.

The kids are well amused. Daughter is downstairs doing whatever it is she does, and boy is playing the new Nintendo Switch we bought for Husband’s birthday next month. We thought we should get it early and have some time to play it. It arrived Friday, so the boys rushed through their chores, and husband and I had a long discussion about whether he really did ask me to order Zelda or not. I swear he didn’t. I am clear as day on this, but is it just my memory? But I would have no memory of the incident altogether, right? And he forgets to give me the phone every morning so I have to go crawl for it and hurt myself.

So, husband is calling the hospital every couple of days with no response. This is what you get with top doctors. Arrogance.

I have a ton of shopping due to arrive today. At least that should distract. And once I get that bath!

Heart Test

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I had a heart test this morning. I needed to have one before they would let me into the EDS clinic. So there should be about a weeks wait before I see the results of that. They expect a six month wait for the clinic, so I just need to hang on. I hope they can do something, because I feel like crap. I don’t have much of a life going on, and even the cab ride was pretty tough.

The test itself was fairly intense. I’m used to the quick EKGs where they clip you on and monitor for about 5 minutes, but she did a full ultrasound. I brought husband along, as he’s good at Intel, he’s my sherpa, and I am not too steady at the moment. He helped me change, I just had to get naked from the waist up. I lay on my left side and then my back while she spent at least 20 minutes with the ultrasound on my chest.

My husband couldn’t figure anything out. He said some of the notes said my heart was of normal size, which sounds good. I’m curious as I’m now sleeping up to two 24 hour periods a week. That isn’t normal. It could be pain, though. My head still hurts a lot. My neck hurts. I just try and do things despite the pain. If I don’t, I will just sleep all the time. That’s no life at all.

Still waiting on the neurologist.

I did get a rubdown in Voltaren before we left, and it really helped. I need a cabana boy. Someone to bring me drinks and rub me down and act as eye candy. 😀 I wonder if my husband would quit his day job… nah, I want new blood! Ha ha ha! Okay, I’ve lost my mind! I do need someone to rub lotion on me and make certain I take my medicine. That’s what I need.

All right. I need to go look up some braces on the net. My knees and elbows have revolted enough.

Be good. 😊

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.

Wonderful Things

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My family has been treating me so wonderfully the past couple of weeks. Let’s enumerate the wonderful things they’ve done for me:

My husband:

  • Has gone to the post office to retrieve numerous packages for me
  • Has found the money to allow me to shop my brains out, since it’s just about the only thing I have time and patience for. Plus Zebra outfits!
  • He brought home French Fries for me even though they were out of his way and it was late at night and he was tired
  • He got out of the warm shower to grab me a barf bucket
  • He watched an episode of South Park just because I asked
  • He has run so many errands for me, I can’t even count them!

 

My Daughter, 15

  • She has been filling my water bottles regularly
  • Listening to my exciting stories even when she’s bored
  • Checking up on me to make sure I have everything
  • Bringing me breakfast during the week

 

My Son, 13 in 6 days!

  • He has been keeping my water bottles full
  • He has been spending time with me, like the two hours last night where he snuggled and watched TV and chatted
  • Remembering not to hug me without asking, because I’m so sore
  • Bringing my coffee in the morning on weekends

 

My family has been awesome. Except for:

 

Husband:

  • Forgetting about me in the bathtub and nobody hearing me yelling about getting the shower head down, so I had to wash my hair under the tap. It was a bit uncomfortable, but not the end of the world. I did have fun teasing him about it, though! 😄

I prefer to get help in and out of the tub as I’ve been so shaky lately.  I don’t need that much assistance, just someone to ‘catch’ me, really, if I start to go over. Or call 9-1-1 if I pass out. I’m still so weak from whatever is going on with me.

I hope you enjoyed my glimpse into my family. Are you interested in my Sephora Haul? I can either show a photo here, or link my Beauty Blog post. Let me know.

 

Stay healthy Zebras! 😘

 

 

Self-care, it’s Tough!

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I was chatting with my friend Tina who blogs at Avon365blog, (go check her out!) And I had mentioned how hard I find self-care. I grew up with the attitude that self-care was for the weak, and we can sleep when we’re dead.

Beginning at age 12, my parents gave me a meager allowance, considering, I think it was $25 per month for clothing, and then maybe another $20 a week for everything else. They paid for my food and shelter, and I paid for everything else. EVERYTHING. Although I usually snagged my mom’s menstrual supplies. Now this sounds like a lot of money, especially in the 80s, but I lived in Canada. I had to buy winter boots and coats. I had to buy birthday gifts for friends. I had to pay school fees for yearbooks, etc. So….I worked. I also had endometriosis, and would collapse in pain each month. And I had EDS. My aches and pains were just growing pains. But I kept on. I stayed in school and worked two nights a week and weekends. Kept my A grades. I ignored the pain. I never thought about it. I couldn’t.

This isn’t “oh! I had a terrible life!” This is just how it was.

I’m used to being busy. Sitting still is tough. Watching TV? Why not organize a drawer? Tidy up? Fold laundry?

Sometimes  wonder if that’s why the Universe/God/Flying Spaghetti Monster finally made me slow down and listen. I’m learning how to do this. When I saw the physiotherapist a year and a half ago, while he was talking to me, he was drawing letters on my leg. I had no idea. I was really out of touch with my body. I’m slightly better now. Losing weight has helped. I want to be more in touch now, I’m not in self loathing mode.

Today, my back is really sore. I had fun playing makeup yesterday! It’s fun and relaxing. I’m glad I still can do something. The back of my head is quite sore today, and rain is in the forecast. The weather definitely has something to do with this. Cluster migraines?

My mom asked me a strange question the other day. She asked me if (I presume she was talking about EDS) was progressive. I hadn’t thought about that perception. Whether I just have a series of flares or if my health actually deteriorates. I had thought it was obvious, as I was formerly ‘normal’ (average), but upon further reflection, really it isn’t.  I have gone from working my ass off to bedridden, but there is also the consideration of breakdown of collagen and tissue. For example, my knees – particularly the right, has a breakdown of the meniscus so dramatic that it is ‘gone’. When I walk it is bone on bone and the patella is so loose I walk like a cowboy. My left is also on its way. My wrists and fingers are sore and achy, likely insane carpal tunnel. I’m trying to get in with specialists to actually treat this, but the doctors retire, someone screws something up, this is three years of nonsense. My 100 lbs weight loss has not relieved any pain, in fact, overall, my pain has increased. I finally found a gastroenterologist who had a clue what was wrong with me, and he retired.

So, yeah, I feel it is progressive, in that as structures break down in your body – the collagen containing ones… I guess that’s most of them. Your body is going to start to deteriorate. My elbows are going the way of my knees. My fingers ache all the time. My tablet isn’t always my happy place.

Okay, going to try to play! Have a fun day, Zebra friends! 😘