The Appointment

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I haven’t posted in a bit because my head and neck pain has been really bad. I have been trying to cope as best I can with frequent resting and making sure I take my medication on time. The pain has still been so overwhelming, the only thing I could really do was sleep. So I was sleeping up to 18 hours per day. I had also developed this weird swelling of my mouth, but I think we’ve figured that out. I didn’t have it last night, so cleaning my mouth guard seemed to help.

I was really hanging on for my doctor appointment.

Husband and I arrived well in time for our 8 am time. We waited a few minutes and were called in. He asked what we were there for, and I began describing my symptoms. He stopped me and asked if we were dealing with this before with the previous doctor. No… He referred us to you, the neurologist. Oh, but he’s not a neurologist! He’s an anaestheseologist! This appointment is to ensure I have enough medication!

My husband spoke for a while after that while I tried to compose myself. All I know for certain is we have more of the magic cream that makes my neck feel awesome for ten seconds. It’s actually not bad.

There is no neurologist on staff, but they are hiring one. So he will refer me. It will just take a long time. I also demanded a referral to a gastroenterologist, which he tried to dance away from, but I insisted. Sorry if you have to do work, doc.

I saw my GYN on Tuesday, much better appointment. She feels my period was a one-off. No cysts or anomalies on the ultrasound. Did a full exam, while uncomfortable, we determined most of my pain was likely gastrointestinal, hence the gastroenterologist. I have a very sharp pain on my lower right quadrant that is horrific. She also gave me a prescription for visanne, should things get out of hand.

My husband was brilliant and rented a wheelchair for these excursions. It made things so much easier! I didn’t feel like I was dragging myself down the hall. We have a prescription to buy one. We should get on that.

I’m not entirely certain what to do now. I can’t live like this for 6 months until they sort things out. I will get in touch with the EDS clinic and see what they have at that hospital.  My GP will refer, he just doesn’t know to whom.

The other option is ER with every flare. Not good options.

Oh, and I will be getting my migraine shots, at least. They are set up for October 24, with a doctor who is amazing, so that’s positive. He doesn’t do the rest of the body, though, and a shot in my pubic bone would go a long way to less pain. My back… I could probably do it myself after 12 years! Ha ha!

Ok, getting tired.

I’ve bought a bunch of cute things to cheer me up lately. I hope I have the spoons to show you soon! 😄

Hugs to all.

💜

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.

Irreplaceable Me

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How many days has it been? A million? Ugh.

I’m so bored. All I can do is sleep and sometimes take medicine. I’m way off my routine, I’m not sure what I’ve taken on time this week. Actually,  I’ve mostly missed my 3:00 pills and my mmj. That should be it. My 6:00 a couple of times. But my husband has been getting home earlier and checks now.

I’m seeing the doctor tomorrow! Husband and I are making our list tonight of what we have been seeing. I’m not going to let him bully me into hoping things will get better. This has been consistent pain now for months. I don’t know that I necessarily need more pain medication, but I likely need more investigation into what is going on. This ‘it’s just eds/endo/fibro’ stuff isn’t going to work anymore. When I’m losing use of my hands, when I can’t eat for several days (usually when I have the flu I can take something in without the digestive problems I’ve had. I woke up this morning to find myself on the toilet, so, yeah, ew.).  I want to get this neck thing straightened out -literally! My knees, these damn headaches, the list goes on.

The positive side of things is that I’m reminded how valuable I am to my family. My son turns 13 on Sunday, and my husband has been admirably juggling everything, however the gifts had not been bought. That’s usually my domain. When I have a flare-up, I can still often get things done. When I’m completely out of commission and can do nothing but sleep? Then we have a problem. Then we start to see how not having Mommy around affects us.

I woke up yesterday evening around 7:00 to find my son hovering at the foot of my bed. He hasn’t been diagnosed, but he is definitely on the autism spectrum, and he was doing a little dance of impatience with hand flapping as he waited for me to wake up. As soon as I opened my eyes he dove into my bed and exclaimed he was waiting for me to wake up because he wanted a snuggle. He settled right in beside me, and we watched TV.  It was lovely.

It’s good to be needed.

These are the sleep shorts I bought at Old Navy. I bought 2 pair 20170606_201735of shorts, I think I have 3 complete pajama sets, as they have camisole to go with them, a romper, a strappy top, and a pair of socks all with the zebra pattern on them.  I will take a photo one day when I’m wearing them, once they are all washed up! It’s nice to buy from the regular size part of the store. There are so many choices!  I’m almost redoing my wardrobe. I have so many clothes to get rid of. I don’t ever want to get big again. But we can’t always control that stuff, can we? My biggest things are not eating when I’d rather be sleeping, because sometimes I just eat to keep myself awake, and keeping an eye on my sugar intake. When I eat too much sugar, my weight skyrockets. When I stop, my weight drops at 2 lbs per week. Magic.

OK.  I’m tuckered out. I have lots to do for tomorrow.

Have a beautiful day, Zebra friends! 😘

Not Having Fun!

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Well this is a fine kettle of wax. Or ball of fish. My treatment appointment is actually on the 13th of June. I’m not pleased. My head is hurting again, as is my back. And it started about a week early, too. I kept saying I think it’s next week or the week after. I vaguely remembered it was after my boys birthday, which is on the 11th, and I was mildly upset I wouldn’t be feeling well on his birthday.

However, I see the same doctor on the 8th for a consultation. Perhaps it’s better I’m unmedicated by Botox. That way he can see what is really going on.  I will need to discuss with husband my goals and wishes for the appointment, because he will need to summarize and translate, likely. I’m in bad shape. If I spend any time not on my side – ie in any other position, I get a headache and nausea and back spasms. The headache isn’t bad, but the jaw pain is. I’m a grinder of teeth. I do wear a mouth guard when I sleep, but it needs replacing. I just have not been well enough.

It feels like there is a point at the back of my head, and when I’m lying on it, it’s wearing down or bruised? It hurts, but it’s the only way other parts are comfortable. I will roll over and nap soon. My husband thinks I should sleep all day. I haven’t been sleeping at night. I’ve been having good naps from 4:00 to 8:00.

When my neck gets all stiff and sore, and my head hurts and my skull hurts, my cognition gets totally screwed. I honestly giphycan’t reason, it’s such a bizarre feeling. On top of that, I can barely remember the words for most things. Yet, I lie down for a while, it has to be on my side and things get much better. If it’s raining, though, things are almost intolerable. The pain is always bad. Turning my head too quickly is a nightmare. The symptoms get worse the longer I am not on my side, too. I can feel the pain ramping, so I will be going to have that nap now.

My son’s birthday is coming up and I need to prep for my doctor appointment, so if I don’t touch base or check in, I’m rationing my time as much as I can. Know I’m thinking of you, I will be in touch when I can.

I was going to type something and it’s gone from my head. I hate this feeling. It’s not me at all. My husband said ‘it happens to lots of people!’ Not to me!

Oh yeah! It’s funny, my pain always seems to ramp up towards Friday. My Mom said I used to do this as a child, too – I would wait until the weekend to get sick. Hmmm…

Be well Zebra pals! 😘

Improvements in this Crisis

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I had a very good day yesterday, considering. I feel like I’m getting the hang of this, even though I really would rather it go away entirely.

I even had the chance to play with makeup. It isn’t a huge deal, but I had a good time. Took some nice photos. The Becca x  Chrissy Teigen palette is really great!

It seems I have a good few hours in the morning, from when I get up at 6 until 9, and then I need to rest, preferably lying on my side, and then I have a bit more time, after my vape. But then I need to nap. On my left side for sure for at least three or four hours. Then I can semi sit up for a couple more, the rest of the evening is spent alternating between lying on my side and trying to sit up or be propped up on pillows. I get somewhat dizzy being propped up, but I don’t want to give in too easily, I want to heal, yes, but I want to develop tolerance as well.

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I still am quite nauseated, but it’s diminishing. The back of my head is very tender. It makes me think this is more to do with my skull fracture of 1992. I just have a feeling. I don’t have the headache I did, but I have a lot of pressure that builds along my jaw around the back of my head that builds where a headache would be. It’s very strange.

The good news is, I’m more comfortable, at any rate. I’m still not certain what will come of this, if this continues, I will just hang on until I see my pain guy next month. My short-term memory is shit, but I will just lay fairly low until then. Try to not embarrass myself. Too badly.

Have a wonderful Wednesday, Zebras! 😘

Just Call Me Oscar

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I am so grouchy today. I have been for the past few days,  actually. If I look at the calendar, it seems to happen around the same few days every month. Isn’t that interesting? This blog is so helpful. 😄😄😄 I’m on Mirena, so I don’t have other cues to go by. I’m also freezing cold, can’t get warm, very tired and uncomfortable. Is that due to my illnesses? Is that due to the extreme cold weather alert? Coincidence? I might as well track it.

I’m trying to be my usual cheerful, yet practical self, but I’m feeling jealous and moody. I don’t feel like talking to people, and I don’t even want to play makeup. I just want to sleep so I can get warm. There are supposed to be two back to back blizzards here Monday and Tuesday, and I have a doctor appointment both days. I’m especially dreading this, because we’ve decided to take cabs, and being nauseated in the back of a cab is hellacious. The parking would cost as much and my husband would have to leave me to get the car, or I would have to walk…cabs are easier, just scary.

I was looking forward to a change of scenery, but I didn’t want it to be nerve-wracking, but I’m probably blowing it up in my mind because I don’t have too many other major things going on at the moment. Except a dull headache. They also call snowstorms blizzards in this city. I’m from the prairies where blizzards trap you in your house for days. I need to remind myself of these things.

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I also can’t change these appointments, as one is piggybacking on to my husband’s appointment, and the other is just squeaking by my medicinal marijuana renewal.

Next week is spring break, so no fighting with the boy about going to school, so maybe my acne will clear up! What was fun about being a teenager again? I have money now, and it’s no fun!

Hopefully tomorrow this will have passed. I don’t like myself like this. I want to leave me in a corner and go be with fun people. I will likely put on some TV and organize my extensive makeup and skincare collection. (It’s my thing, I can’t even wear nice clothes, it’s all pajamas) I’ll just be quiet. Calm. Wait for it to pass. Enjoy that there isn’t crippling pain attached and gear up for the next two days. My cannabis doctor is a new one, so that will be an expenditure of spoons.

Have a wonderful day, my Zebra brothers and sisters, and everything you identify as! 😙

Return of the Porcupine

dk6cthn9wog2kMy husband and I have been referring to the pain in my lower right quadrant of the abdomen as my ‘porcupine’ for a while now. It feels like a giant porcupine is sitting there, as there is weight, and it doesn’t hurt unless you move. Then you have a stabbing, sharp pain.

My pubic bone is also back to aching. I’m tired. But I still feel pretty good. Better than I usually do. Because I’m usually aching all over, too. So, today I’m going to rest and see if I can’t prolong this winning streak! What a lovely surprise!

Yesterday I became curious when I ate lunch and became bloated and gassy again! A glance at the ingredients on the crackers reveals the suspect! Beet fibre! I’m allergic to beets! My husband knows this! I’m skipping them today to see if this helps.

My daughter is back at school, she seems better, still tired, though. My son is home again, still dealing with anxiety, I think. He has started testing for Autism, and is on the spectrum for sure. He is so precious, I worry. I know he has stomach issues, as autistic individuals often do, but with pain and sprains, I think EDS? I can’t help it.

My husband’s eyes turned red with irritation again. This time the eye doctor changed the glaucoma medication. We wait with bated breath.

I’ve had a blast playing makeup the past couple of days. I want to again today, but I should probably nap instead. I’m so torn!

My cannabis doctor just called and moved my appointment from the morning to the afternoon. They are always moving my appointment around. It is so irritating! My husband takes time off work so he can take me there. Then they change at the last-minute. If I could swan in anytime, I wouldn’t need the medication. Luckily, my husband took the day off this time instead of the morning. Only two people ahead of me, too. Last time I had to wait an hour and a half. It hurt. I was in tears. My old doctor retired to go into addiction recovery. Maybe now I will get someone who will stop trying to get me to cut down. I want this to replace my opioids, not the other way around. Plus, this guy was trying to shame me over my use! Having never used a vape machine before, sorry sir, there was a learning curve. I don’t exactly hang around with anyone who can show me. The stuff I threw out for the first three months was still green.

Anyway, I’m enjoying the heck out of myself. I’m puttering around, getting a few things done, but that nap will be coming up soon. I might even get a read of my book! I don’t know!

I hope you enjoy a respite as well, Zebras! 😙