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.

💜

Hellooo Nurse!

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Finally, after being in pain all week, one of my friends on here (I don’t know if she wants recognition or not) convinced me to convince husband it was time to get me checked out.

Now we haven’t done nothing, I know my husband put in an urgent call to my regular gynecologist on Monday morning.  We still haven’t heard back. My GP is on holiday the last few weeks of August, with no cover. We would have called telehealth, but they always tell you to go to the hospital.

WARNING: I WILL GET GRAPHIC ABOUT LADYBITS 

I don’t entirely blame my husband, although he sure blames himself. If I had said the pain was bad, we need to go, we would have gone. However, I have a cold as well, with that sore throat. All I want to do is sleep. So I really minimized the pain, as I hoped it would go away.

At first, because I had spotting, I didn’t worry. Then it got heavier, and heavier, with the pain, our theory was my Mirena IUD had started burrowing its way to freedom.

I arrived at the hospital. The one I go to for pain management,  and the ER was fairly quiet. Score! I sat down with one of the nurses,  Matthew, he was a sweetie, even though he couldn’t spell Ehlers Danlos. He thought ahead and put me somewhere where I didn’t have to get up and down. My husband asked right away if there was a place I could lie down and I was able to lie on a stretcher the waiting room. It made such a difference!

I was transferred to a room, like an ER bay, because you know the pelvic exam is coming…

The doctor came in and did a preliminary outward examination of me. When he got to my back, I screamed. I didn’t know that. Well, I guess that hurts.

Apparently, on my chart, it has huge notes all over saying DO NOT DO A PELVIC EXAM UNLESS ABSOLUTELY NECESSARY! This is because pelvic exams hurt me. Very badly. The doctor, realizing this and seeing the preliminary exam, orders 6 mg? Of morphine before we go any further. What a sane and sensible man!

Later, he comes back to do the pelvic exam, and can’t find anything too dramatic. Takes swabs.

Next is a pelvic ultrasound. I have done this a billion times. The technician is awesome. It hurts much less than it has in the past. In the past, I’m not on morphine.

We arrived around 10:30, it is now around 3:30, husband decides to grab some food because we have a lull. This is where everything happens.

The doctor comes in while husband is gone and informs me that the ultrasound shows my Mirena is in the right place, no problems there.

The doc comes back 3 minutes later to tell me there is no indication this is anything but an endometriosis flare up. However, because there was discharge and bleeding there is a small chance there is an infection. They have the culture, but it takes 48 hours to grow, they will call me and we will prescribe something then. Otherwise, many women still get their period with Mirena, (all of a sudden, after 13 years?) that’s what this may be, go home. Follow up with your doctor, you need more pain medicine.

So, fine, we were getting up to go and wending our way through the maze of stretchers and some bitch sitting on her boyfriends stretcher had seen us coming out of the room and stretched her foot out to kick me as I went past. Nice. Bitches in this city.

So, anyway, I’m frustrated. I feel like I’m back at the drawing board. I thought I had this sorted, and it’s reared its ugly head. I need to meet with my doctor, but she’s near impossible to get an appointment with.  So, I’m going to need to consider another doctor. That’s first up.

I don’t think I want a hysterectomy. All advice to date has indicated I’m in pseudo-menopause now. Having my organs removed won’t make a difference to the pain, but will for other things. Will have to discuss with the doctor I end up with.

In terms of diet, I am on FODMAP, and can’t really change that. It’s been suggested I go vegetarian, or fish-based, but I’m allergic to fish, I’m allergic to legumes, which screws up vegetarianism. But I am also allergic to soy. So I’m very picky about my food. I only eat about two dozen items, and most are well vetted for proper growing technique.

Once again, spending the long weekend resting up. I suppose we tackle this new adventure on Tuesday.

I’m going to rest. So tired.

💜

A Word on Munchausens Syndrome

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I have been reading a couple of articles on Munchausens, Munchausens by proxy, and have watched the documentary on Gypsy and her mother, and I find Munchausens Syndrome quite fascinating. I don’t understand why someone would choose to fake sick in order to gain attention. Yes, the answer must lie somewhere in the pathology of the illness, but how does the attention actually work? See, I have more than one verifiable illness and I am not drowning in pity and attention. Perhaps it’s because they don’t actually have the illness in question and have the energy to troll for it? Maybe because they usually invoke CANCER which for some reason gets everyone’s attention. I’ve never understood why cancer is held up above all other disease. It’s interesting to me. It is very serious, usually, don’t get me wrong. Maybe because we all know someone with it.

I mean, not that I want attention so much as it would be nice if people noticed the struggle and thought I was doing awesome. It’s better than being invisible.

 

Today went downhill fast.

My head is really in bad shape. My neck is awful. I didn’t sleep well last night, the pain was so distracting. I’ve been eating chocolate trying to soothe, which is a bad sign. I should curl up and either relax or sleep. My face hurts so much. I have intense abdominal cramps, and I’m spotting again or still, I’m not sure. It’s getting to the point where I can’t just wait it out much longer. I don’t know if the EDS clinic has a gynecologist on staff. There was one at the pain clinic, and I did see her privately, but it was kind of a pain to get in. My GP will not deal with this, so I’m not certain what to do. There’s always the possibility my Mirena has pierced something. Not pierced, um… shifted and embedded somewhere. I’m on a lot of medication, who knows what I feel and what I don’t? Sigh.

I need to see to a nap. I’m becoming incoherent. And grouchy.

💜

Dizziness

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I am so freaking dizzy! I can’t close my eyes anymore, I just can’t. I should be sleeping.

I fell in the bath today. I was crouching to get in, and I saw blackness, then splash! And then my back and shoulder on the left side started hurting. Which is annoying, because my back was doing pretty all right, considering I should have my shots tomorrow, Tuesday, if this is Monday, already. It’s 2:30 am.

I actually feel as if I am getting a period. This is weird. I have a Mirena, have had no problems, just treated for a yeast infection, have incredibly sore boobs, cramps, sore back, and twinges. Definitely not pregnant. I guess I have to trek to the doc. I wonder if weight loss has something to do with it. I’ve never used Mirena at this weight. Does it need time to adjust?

This dizziness is something else. I even THINK about looking up? Makes me sick. I hate people who post photos from planes or videos of skydiving? I start shaking. I’m tearing up just thinking about it.  Or from space? I want to vomit. I don’t know how I’m going to get through tomorrow (no, wait. We decided it was today, right?) today. Someone is going to want me to look up at something…

I just tried to roll on my back facing up and I couldn’t. It makes the room spin. It’s so weird.

I was thinking again the other day… so dangerous, 😄 a couple of appointments ago I was trying to get a concept across to my mmj doctor. I was asking her about a stronger dose or another strain, although my distributor doesn’t do that, that would help me… and I couldn’t quite put my finger on the concept.

Relax.

Relax my muscles an perhaps let some of the tension in my body go. You cannot even fathom how rigid I hold my body. Even when I’m relaxing. I can’t drink, we can’t get massages, every time I do relax I get a fucking migraine, I can’t eat anything good, hot bath? How long does that last? I’m cooking to death in this room already, no heat for me. I hate cold, I snuggle up and watch comedians on Netflix. I’m still tense as fuck.

I can’t close my eyes, it makes me dizzy.

I’ve been trying for an hour to sleep.

Anyway, now I target each part of my body starting from the top or bottom, and relax each bit. It’s an exercise. Deep breathing, all that jazz.

My little corner of the universe is becoming quite becoming. I’m finding a lot of joy here. My makeup stash to my skincare stash, (PS, if you spend more than $100 on Korean skincare and masks, it is too much, and you will spend the next six years giving it to everyone who walks by. ) it’s all becoming accessible and organized and joyful. My clothes are slowly getting organized… that’s my daughter’s project, though, and she is taking forever!

Anyway, I need to try for 3 hours, and my elbow hurts! 😢

💜

Creeping up on Feeling Better

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Yesterday, as I lay in bed, I actually could move around a bit without being in incredible pain. I was a very responsible person and slept the afternoon away. Of course, I missed my medication times, so I don’t know if that’s why I’m a bit screwed today. I woke up with mild pain. Enough that I knew it was there, enough that I’m afraid to do too much activity.

 

Today will  be another relaxing one. I was hoping to get

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Actual Photo of my right ovary.

something actually done, but that will not be happening.  I’ve already taken breakthrough medication,  so I’m not happy about that. There is the matter of the post office. Apparently, all the shopping I’ve done in the past 4 weeks has come to roost. I think there are 5 or 6 packages there to be picked up. They usually leave them, but I guess with so many, they just took them to be safe. It’s mostly Old Navy clothes. I bought a bunch of tanks and sleep shorts because I’m so chuffed I’m now an XL in regular sizes and not in plus. And a dress for wearing to the doctor, because it’s easy to change in and out of and has no waistband. Clever!

 

giphy3Today I’m also going to try to take a bath. I’ve got the Ola plex sitting on my hair. I haven’t really washed my hair in two weeks, or had a submerged bath in the same. Ugh. Bird baths just don’t quite do it, but I haven’t been able to move without pain. At least I don’t smell.

 

I’m hoping giving myself another day of rest will let me play a bit tomorrow.  I’m kind of bored, but have no energy.

My abdomen feels like a suitcase. Where the zipper along the sides is burning. If you can follow me for a second here, my daughter was a fairly traumatic c-section. They let me push for a long time, they let me sit for a long time, trying to get me to 37 weeks, she was stuck in my pelvis, there was pulling.

Anyway, I know what I feel like happened is not what happened, because my husband is 6’5″ and saw over the drape. What my abdomen feels like is a wheelie suitcase on its side with a zipper all around the bottom, right side and top, and was peeled back with burning pain. It makes no sense.

Then I have deep pain toward my right ovary, running through my back. This is connected. It is likely literally connected, because of the Endometriosis. I have adhesions connections and lashing the organs of my pelvis together. This is probably why it hurts when I move. Or sometimes just for fun! I have a Mirena, so I don’t know what’s up.

Then there’s my regular EDS discomfort that I deal with. That’s nothing to write home about. IBS, carpal tunnel, sore wrists and hands. Knee pain. The usual stuff. Migraines. Gastroparesis. The usual suspects.

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

Weekend!

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Hey hey! It’s Saturday! I woke up with the back of my head banging so much I felt like it was going to fly off. I’ve got my coffee and my mmj, so we shall see about that.

I stayed curled up in a ball last night. My friend didn’t make it over. We had a pretty big snow storm. 10 cm of snow isn’t a lot, but when it falls all at once, it’s a problem on city streets. She’s going to drop by today, after her massage.

I didn’t make it to my virtual party last night. I decided to join Rodan + Fields as a consultant, but only to purchase my own stuff. They call those ‘face washers’ apparently.  😂 This party was for those that were joining. I couldn’t uncurl myself enough.

I’m feeling a bit better today, not fantastic, but maybe moving will help. Going downstairs and seeing people.

Darling husband was super sweet today. He shops at Walmart every Saturday at 7:00 am, and there has been a sale on big fluffy pillows the past three weeks. He brought home one for everybody on week one and two, and two for me today, so I am just swimming in pillows. Unfortunately, he dumps things on me, so I am covered in things and can’t dig out. I will need his help later to make sense of all this. I don’t have the spoons, and my bed (our bed) looks like a bed from hoarders.

I need to find cheap tools for my mmj device. I keep losing them, and have to source more. Tried pipecleaners, not strong enough. This mmj is what is keeping me from certain death of spirit right now. It’s very high CBD, mid THC, so I can still function.

I have had the weirdest encounters with men the past few days. Normally, men are pretty respectful. I’m old, disabled, used to be pretty fat, and I’m still considered obese, but I’m about 5 lbs. away from being merely overweight! I chose a fairly man repellant icon for my Facebook photo, deliberately, not that I need to worry, yet I still had one guy in messenger saying he wanted to kiss my neck, another guy on my actual page saying he wanted to marry me! He claims he still wanted to marry me after I told him I needed a manservant to look after me, this bitch with pain, my personality does not make up for it, I wear nothing but onesies, and watch nothing but animated shows. Had to block someone on Facebook because he continually would judge my statuses, tell me I should be caring more about this or that. Just disrespectful. This one in particular was a petition on having Ivanka Trump’s Line dropped from a Canadian clothing store, which he didn’t feel is fair, because “she didnt do anything”. Disagree with me, yes, but don’t talk to me like you are my father. Anyway, I didn’t want him coming back with arguments or whining, hence the block.

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What takes the cake is my Instagram interaction this week. I deliberately chose a photo for my daughter’s birthday this week that was not so flattering. I’m glad I did. One tag I used was Aspergers. This one guy contacted me. Normal. He started chatting about struggling with Aspergers. Fine. Then he asked me if my daughter finds farts funny. Blocked.

This must be my punishment for participating in that thread and saying I wasn’t getting that much harassment so I didn’t mind friending men on social media. What is wrong with them? Does this work on anyone? If so, whom?

My friends always tell me to take my photo off my profile, use something neutral. But just because someone is a jerk, I’m not going to change my whole life.

I really, really, really love my socially awkward husband.

My friend showed up much earlier than I expected. I thought she was having a massage at 12:30 so I budgeted an hour, and then travel time, so 2:00 at the earliest, but she was here at 1:30, and I didn’t have time to finish vaping, never mind getting dressed, or finishing my blog post. But she was great, came and hung out in my bedroom. She’s so swamped at work. It’s terrible. I wish I could see her more often! We had a good catch up. My sweet husband made chocolate chip cookies. Gluten-free of course. They are delicious.

I’m still sore, my abdomen hurts. I have cramps. It feels like a bad period, or maybe a cyst. I don’t know what’s going on, but it hurts. I shouldn’t be having problems as I’m on Mirena,  so maybe it’s gastrointestinal. That makes more sense. I mean, my GI system has been bothering me since I was a toddler. I used to eat only every second or third day.

I should go do something productive, like check the weather, see if there are any storms brewing, find out how my week is going to be. Three seasons per year are tolerable here, really.

Have a stripey day, my zebras! 😘

Worn Out

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I posted about my weight journey yesterday. It was a post I had wanted to do for a while, and I needed some time yesterday to process.

I was supposed to go out with my good friend on Sunday, but hadn’t heard from her by noon. She called me at three, she had a family emergency. We had a good talk, and she let me know a therapist we had both been to see had died just last month. The therapist was just a couple of years older than we are. She apparently had an operation, was fine, and then caught a devastating infection. I saw her for about six months. The reason I stopped was because she was on the second floor of a renovated Victorian home. Just a stunning office. However, I was having trouble reaching it on the narrow stairs when my knees started to give me problems. My new therapist I found when I was having pelvic floor therapy. They insist you see a sex therapist. She and I really clicked, and she does other forms of therapy, so we started working together. Another bonus is, she sees me by phone, because she knows I’m actually doing the work, so that’s fantastic. I am still torn up about the loss of this lady, though. I had in my mind, somehow, thought I might go back to her, just because I liked her so much. You don’t expect to lose people so young. Or maybe I’m not young.

Therapy bills are choking us. At $200 per visit, my son is going 2x per week for Autism therapy, my daughter 1x per month, and I’m finally down to 1x per month for traditional therapy.  $1,200 is a lot. Add in my medication, which most of us covered, thank goodness, my injection fees are $225 every 10 weeks, if I want to start-up with regular and pelvic physio again, I’m going to be expensive. And then there are the cabs to and from. I’m not up to public transportation yet, and our Wheel-Trans is great, as long as you’re not in pain. I mean, I’m really lucky, we can afford it. I’m not whining really, I’m kind of scared, actually. I say it’s the money, but last time I started physio, I went into a pain spiral that lasted months. I don’t know if I should leave well enough alone. The physiotherapist said he couldn’t help my pain, but maybe my stamina. He could also help with the disassociation I have with my body. I can’t tell when someone has their hand on my leg, for example.  I guess I did that to deal with pain.

Pelvic therapy really helped me relax. I keep my whole pelvis tense, likely because of endometriosis pain. Trigger point massage was helping, but I got hit with that flare. I just am afraid to try again. Is it worth it? It was nice feeling relaxed, but I really don’t want to be that sick again.

I had the best nap yesterday afternoon. I went to sleep at 4:00, intending to get up at 6:00. Slept deeply until 8:00. But it was delicious.

My abdomen is very crampy. I have a Mirena, so it shouldn’t be menstrual. I wonder what is going on. I feel like curling up in a ball and crying. Maybe I just need a rest.

Have a bendy day! 😘