Sunshiny Day! 😄

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I have a feeling today is going to be interesting. I’ve noticed several people haven’t been posting, so I hope it means they are feeling better with the weather and are enjoying themselves. I know I have a way different experience in the summer months. My joints tend to be looser, making it harder to walk, but my pain tends to be less intense overall.

I was supposed to see my eye doctor today, but I’m in too much pain. I know I’m usually in less pain, but I saw my Cannabis doc this week, and well, actually I saw a different doctor, this being the third doctor, since my original doctor left the clinic at the end of last year. This new doctor actually gave me instruction, as opposed to the original doctor, who suggested I get all info from my friends. Since I had no friends that vaped, I was pretty much on my own. Of course he treated me like a drug seeker! This new doctor actually sat with me and suggested I break down my vaping times. Change is tough, though. My body is adjusting. I keep forgetting, so I get really sore.

My in-laws called and announced they were dropping over today. My husband won’t be home. My daughter and I aren’t sure where to hide. We are sure we’ll be embarrassing.

The good stuff:

  • I have clear skin, no acne today!
  • I bought these really cool stands from kikkerland, a phone stand and a tablet stand that hold my stuff perfectly. Now I always know where my phone is, and I can have my tablet on while I do other stuff. I will post photos, if interested. $15 and $20 USD.
  • I bought the Pat McGrath Lipstick collection launched this week. I’m lucky I can do this. 😊
  • My kids have been lazy as hell, but very loving lately. I have great kids.
  • I have some really great friends. They really understand me. That is a blessing.
  • I am slowly getting organized. It feels really good. I have to get my blog check-in in sync, but I will get better.

 

I may be hurting, but I’m feeling positive. There are many loose ends that need to be tidied. I need to find out what is happening with my doctor, the EDS clinic, etc. I need to follow up on the neurologist to find out what’s happening with this head pain. But I’m doing well otherwise. There’s lots of napping going on.

😊

If it’s Good Enough For Drake…

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I had to hobble to my Cannabis doctor yesterday. My husband came with me, naturally, because I don’t get around so well, but this was a nightmare.

At this point, I can walk maybe 50 feet comfortably, without struggling. My knees pop out like nobody’s business, and I’m having a hell of a time right now. I’m not certain what to do. We’re debating buying the damn wheelchair, as it’s not like I’m going to suddenly be able to walk long distances. However, should I be investing in a walker, as I’m hoping the EDS clinic can come up with some sort of bracing or physio to help strengthen things.

We caught a cab to my doctor, which is at one of the busiest intersections in the city, and if you know anything about Toronto,  that old joke about the city having two seasons: winter and construction is not far off. The cab couldn’t drop us off in front of the building, because the front was walled off for construction! We had to drive two blocks to get to the end of the wall. Guess who had to walk two blocks to her doctor? Yes! Me!

Of course, my knee subluxed, and I was hitch-sobbing in the elevator, limping into the office, crying most of the way through the appointment. The doctor didn’t seem to mind. He has a reputation for being a real jerk, but by the comments, it seems maybe he doesn’t like fakers. The appointment went well, considering, and I even learned I have been vaping wrong for the past 5 years.

My original doc gave me a prescription and told me to ask my friends for help. It’s so absurd, he kept treating me like a drug-seeker, but I so was not. Of all people! I’ve learned so much from my last two appointments with new doctors!

After the appointment, we usually walk out to the taxi stand, but that was gone, so I found a place to sit, while this guy followed my husband around telling him the lead singer of the Verve died, and since he looks like him, he can have a new job! Ugh. My head is killing me, my knee is killing me, I feel like I’m going to hurl… please let me go home.

So husband is trying to find a cab, but the curb lanes are blocked and no one will pull in, so he walks the half block to the line and promises to pay the fine if the guy gets caught. It works, and the cab has a.c.!

I have to get used to the idea of a wheelchair.

I haven’t even considered if I can handle something motorized or not.

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.

Still Flu-ish

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Still not feeling quite so amazing this morning. I’m feeling weak, like everything takes effort. I’m kind of hungry, so I tried some crackers, but they tasted like ashes, and upset my stomach. Why would a few crackers give me gas pains? I have no idea.

So I lay around this morning and looked at catmemes. I am downloadfiletrying to convince myself to go back to sleep, but I am pretty bored with that idea. I’m pretty bored with doing nothing but sleeping. There are a ton of books I have lined up here. I have new makeup on its way, and gorgeous lashes to try. I have my Beauty Blog post to do for tomorrow. But… I can barely move. I think the only solution, since I’ve been trying to get it together enough to turn the TV on for an hour and a half now is, to give in. Sleep, and when I wake up it will be time then to reevaluate.  I know I’m bored as hell, but what else can I do now?

Hope you are having more fun, Zebra friends! 😷

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! 😘

 

 

Slightly Brighter Day Dawns

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You know how it is when you make a big deal about something, it always resolves itself immediately.  I woke up this morning feeling not quite so desperate. It’s an awfully good way to feel. The pain is still very much there, and my back is screaming at me even as I’m lying here, but I don’t feel quite as nauseated, and I haven’t even vaped yet this morning as the kids have just got off to school (I like to wait until they are out of the house if they are going). I feel that may take care of things, but I do have my breakthrough if not.

After I get my meds in, I expect to be somewhat comfortable as long as I don’t move too much. Stay loose, just maybe I can slip in the tub later if I’m good? Maybe?

I will be lying very still and calmly today. Trying to get some good rest in. I don’t want to exacerbate things again. Not to that level.

If the pain doesn’t subside enough we are aiming for an emergency room visit if we have to on Monday. I’m Canadian, so we had our holiday last week. The kids would be in school, less chance of upset. Husband wants to be with me, he’s expressed this, there is a major crisis at work, so this would be optimal. I have time to see if it resolves, and time to rest. Naturally, if it becomes too unbearable, we go, but even though my kids are aged appropriately, I am not certain leaving them alone is possible, and bringing them is also problematic. So my husband would have to drop me off, and that isn’t ideal, either. I’ve had some poor treatment in hospital, including the doctor who told me that I was “just constipated”. I grabbed his notes and threw them down the hall I was so insulted. I hope I’ve matured beyond this.

Time for rest. And vape! 😎

I’m expecting comfort. Not miracles!

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! 😘