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!

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.

Nesting

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I’m deep into Nesting mode today. My ex husband used to call me hamster girl, because I love organizing and reorganizing all the things. Whenever I’m “sitting still” you can usually soon hear the rustle of paper. Today I went through all of my makeup and reorganized it. It was already sort of organized, but I redid it. Tomorrow I will tackle skincare. Unfortunately, I tried a look after I did the organisation and when I took the photos, my eyes are wonky. My eye pulls in when I get tired, and it doesn’t take much these days. I’m seeing the eye doctor in a couple of weeks. It might even be next week. I’m going to have to show him these photos.

I had a great time watching South Park while doing this. I love this show. It’s so obnoxious.  It makes such good points. My son’s friends watch it, so if he wants to watch it, I’m glad we do it together so we can discuss what he sees. I don’t know if, at almost 13 he quite grasps sarcasm and irony, and I’m happy he will discuss things with me enough to let me talk with him and ask me questions. I love the one where Kanye is making sure Kim isn’t a hobbit, and the one where Stan and Kyle try to beat a million on Guitar Hero. The music is great! Kansas, The Ramones, and I find it okay! Yay!

I’m still having abdominal cramping, but it’s more muscular than digestive, although digestive problems are happening because I’ve been on a chocolate binge lately. It doesn’t take much to upset my system, but it does take a certain amount to satisfy me! Oh well. Gotta live.

A friend asked me an interesting question the other day. I mentioned the cramps, and she misunderstood them for digestive cramps, understandably, and asked if I was going off FODMAP. No, because it was different pain and we sorted that, but I thought, what is after FODMAP? What do I do after that? I can’t seem to tolerate anything forbidden, and many things allowed on that diet and am still mostly nauseated and having heartburn. I am better in terms of bloating and gas, most of the time I know why I am suffering.

I was going to post yesterday, but I decided to nap instead. So selfish. 😁

My head and neck hurts so much. I’m trying to be cheerful, but it’s tough. I feel like my laughter is a little loud and hysterical.

I can vape again, right? I’ve been teaching people in the house how to help with my apparatus (age appropriately, no kids touch drugs, but they can find my discard bin and get my tubing) so I actually will instead of just lying here.

Have a fab day, Zebras! 😙

I Need a Reboot

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I was feeling pretty okay today, considering it’s just less than a week before my Botox, and traditionally I’m feeling rough the week to ten days before that appointment. Usually I’m as I was at the beginning of the week, exhausted, unable to move much, napping a lot. Just generally miserable and in pain. It seems the mmj adjustment is helping. I felt a lot better today, and was able to distract myself with the makeup blog and some looks. I didn’t even exhaust myself. My neck was very sore, and my head hurt, but I didn’t think about it.

One thing that disturbs me is in took some photos for Instagram the other day, and I was very tired. When I looked at the photos, my eyes were the aligned. I looked at more photos and you can see the more tired I am, the worker my eyes are. These were bad, though. I will bring it up to my eye doctor when I see him in a couple of weeks.

After I relaxed for today, my husband took our son to therapy. I had dinner, daughter is downstairs at her homework, when all of a sudden I had a cramp in my lower right quadrant that took my breath away. And then another. It’s like some invisible toddler is stabbing me. I have no idea what is happening, but it’s painful. Since my pot doctor said to vape, I’m vaping. The intensity of the pain might actually send me to the hospital if I thought they would know what to do with me. It’s not my appendix. I don’t have a fever, chances are good it’s not something acute, most likely something ripping. An adhesion? But things can change, so husband is aware.

Of course, since my husband had the winter tires taken off the car yesterday, we are in the midst of a spring blizzard. He was going to pick up the car tonight, but he may just come home. I want to snuggle.

I’m just going to flake for the evening and watch garbage TV.

I want to finish vaping, take my medication and go to sleep. Thank goodness my body likes sleeping. I’m very lucky.

Have a lovely day Zebra pals! 😘

 

PS. My predictive text is super aggressive and I just can’t fight with it today. Sometimes, yes. I do mean i, not in. Or it. Or I do mean the word I actually say. 🖕 I have been using this emotional and lot this week. Again. Emoji.  Yes, I know, I can choose the word in the bar above. My Lenovo never did this…

 

Gobsmacked!

giphy2OK! First off, let me start by saying the weather here is icky pants. It is +10C today and will be -5C tomorrow, so I am very achy and very medicated. I’m a bit jumbled in my wording, but not inaccurate, if that makes sense. My husband warned me about the weather this morning and told me even his hips were aching. 😔

OK. So, the other day I had mentioned how I was disappointed with the treatment I had received from the customer service at my marijuana distributor. Just to be absolutely clear, I wasn’t so much upset with the delay in getting the paperwork done, because I happened to peek online, and it was finished on Sunday night. But by the time I remembered to check, I’d had my sleeping pill, and it was kicking in. The issue I was upset with was the seeming lack of care the person had when I was speaking with her. What became a problem is I didn’t receive an email letting me know my order was ready to go, because if it was there Sunday evening, it was likely there since sometime Saturday, and I would have been further up the queue, however… I didn’t get to order until Monday evening because I needed my husband’s help, since I have trouble remembering what I am supposed to buy. This really is probably moot since they are pretty fast, though.

Anyway 😄 the impressive part is that one of the customer service team at Cannimed reached out to me after seeing my complaint on my blog and asked me about my experience, and I explained how I understand how professionals sometimes need to detach when dealing with chronic pain patients, but when we get that every day it feels like we are being blown off. That not receiving my email was a problem, I counted on that. He then returned my email and said he would follow up with the rep in a non disciplinary way (good!) and find out what their perspective is, which I think is awesome.

The reason this may sound innocuous as a customer service experience that I’m complaining about is because it’s not the standard I’m used to from them. Last week my husband needed the receipts for my expenditure for 2016, he didn’t even know if we could get them. I was sick, so he called. Boom! Less than 10 minutes, I had the email and a follow up call.

What other company Googles themselves so they can provide customer service? I received this email at 10 pm. EST. Maybe 7 or 8 their time? I can’t remember if they are…oh wait 9? They are in Saskatchewan, they shouldn’t have been in the office, anyway. I’m impressed all to heck. They have been super, so this, what seems normal from Walmart, is an aberration from them.

I think, if I can get it by Friday? I should have enough. But my doctor is saying vape at will! I don’t know how this will work.

Yesterday’s nap ended up being all that happened, but it was gorgeous and I loved it. Naps are only for very lucky people who deserve them very much. 😄😄😄

My husband has arranged with work to start at 9:00 instead of 7:30 so he can walk our son to school. At least he is getting there. Prayers welcome.

Let’s see what today brings…

Have a gorgeous day, Zebras! 😘

Happy Surprise!

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What kind of portal have I entered? I think I will stay here! Or, alternatively, deal only with female doctors. No, that’s unnecessarily sexist. However, the past couple of days have borne some evidence this may bear some thought. Let me start at the beginning and tell you what happened.

You may remember yesterday I had to beg off my doctor appointment because I was in too much pain. My husband had a piggybacking appointment and spoke with her “for” me, strictly off the record, and let her know how I was doing. She assured him that my visit wasn’t a priority and to come in when I was able. My doctors trust my pain management doctor, Allan Gordon, a great deal.

Today I was to see my cannabis doctor. My husband has taken days off to make these appointments. This is how he uses his vacation days. My previous cannabis doctor has just retired, he wanted to research addiction. I am assigned a new doctor. My old doctor is very focused on goals. He wants me to go outside and go for a walk. I don’t think he can wrap his head around the concept that my knees have zero meniscus. Doctors won’t operate on me because of the complications involved. He wanted to lower my dosage, but my disease kept progressing. I think he was a caring doctor, who maybe couldn’t see the reality of chronic pain without it really affecting him. I don’t think he would accept it as being fact. He was also obsessed with what I did all day, where I spent my time. If I was in bed, I had to be asleep. No other choice. It took a year to convince him otherwise. Finally, my husband got through to him.

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Look! I’m wearing people clothes! 😃

When the new doctor walked in, I was hopeful. First of all, she has many Ehlers-Danlos patients. Second, she is on board with the idea of using marijuana in all its forms, oils, pills, green, instead of my other medication. Which conflicts with what the old doc’s priorities were. In fact, he said once he ‘didn’t want to give me anything stronger so I could sit around and play video games all day’. 🙄 I expressed to this doctor that I was still having a lot of pain, and I wished there was something I could take that would help. She reviewed my strain, we talked, she asked me some questions, she asked me if I needed to be alert for work, nope. I do not, so I have some things to try. All without being treated like a drug seeking non-person. One who could lie in bed if it’s more comfortable if she wants to!

This conversation led down an interesting path. She asked about my diagnosis of EDS. I was diagnosed by a geneticist. Asked about endometriosis.  Confirmed and diagnosed in 1989. Do I have a fibromyalgia diagnosis? Well…sort of. I was told they thought I had fibromyalgia, but I really have Ehlers-Danlos Syndrome. Once a massage therapist told me I had fibromyalgia. Then my husband pipes up that Fibromyalgia is in my chart as my official diagnosis. The doctor mentioned I could have both. This is news to me. I will have to investigate this more. Maybe not Lupus, maybe fibromyalgia! Will definitely ask at my appointment in June.

We had to walk a bit to get a cab. This place is badly situated, as we approached the taxi lineup, the first taxi in line is a company we don’t use, and was a minivan I have trouble getting into. As we started walking closer to the second cab, the first cab in line started freaking out (we approached from the back, so we didn’t pass him) it’s freezing and icy, the other cab is closer, and I’m hobbling, very obviously. The cabbie is blasting his horn and yelling. As the cab we’re in drives past him, he’s flipping us off and yelling. So glad I’m not in that cab. Road rage? That’s a major reason we don’t use that company.

It was nice to get out. It’s always nice to be home. I don’t have an appointment for a few weeks now, I can relax.

I need to say before I close, I have had a fair share of uncaring and rude female doctors and nurses, too. Female staffers are the ones responsible for demanding to know what drug I was detoxing from, when she found out I was taking methadone. To telling me to lose weight and I’ll feel better (plenty of men have told me this, I don’t feel better). Telling me I MUST be diabetic because I’m SO FAT, I was 260 lbs at 5’8.5″ and had put on 20 lbs due to being sick and bedridden for 6 months waiting for surgery. The nurse who told me I better not have a c-section after I needed help getting up after having my side sliced open for an emergency appendectomy, which turned out to be my period starting. No grudges, just a long memory.

Hope you’re having a good day, Zebra amix! 😘