You Can’t Tell Me What To Do!

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I really don’t get the chance to interact with many people. It’s a huge effort for me. But your husband and kids! People exclaim. I see my kids when they drop off food, they are teens! Introverts at that. My husband arrives home from work around 7:30 and must take care of homework and lunches and clean up, so he rolls into bed around 9:00. I have an hour or so, if I managed to stay awake.

So, when I get to speak with a new person it’s pretty exciting! Unfortunately, though, some people (though their heart is in the right place, I’m sure, wanting to help) start in with the “You know what you need to do…” and it’s very rarely helpful. Now, of course I am not dismissing carefully considered suggestions, I’m not unilateral in this! What I’m talking about are the questions that could be better phrased as why questions. The ‘You need to find a new doctor’ ‘you need a housekeeper’ ‘the waiting list for neurologists is six years’  these types of unhelpful comments.

It would also be nice to be asked how I’m feeling, but we might all be pretending everything is fine.

I’m still lying here in the semi-darkness, grumbling most of the time. I feel like my life is flying by. I’ve been lying here for a year. I’m gaining weight back because I can’t move. I am having huge gastro problems. I’m so tired today, I can barely move. I’m not sleeping properly, pain is waking me up. My joints are so weak and painful I can barely do anything. I am so angry at being ignored. How much more of my life am I going to spend lying here?  I can do NOTHING right now. Even watching television is a struggle as the light and noise can only last so long.

I did buy a cervical pillow from Wal-Mart, it’s very nice. It’ helping my neck pain. I lie on it at first, after being propped up a bit and my neck hurts so much, but the next day it feels good. Less pain than usual.

I feel like if I could have a good stretch I’d be better. Momentarily, anyway…

 

After the awful van attack in Toronto,  one of the victims’ spiritual leader said she had so many loyal and beloved friends because she was a good person.  *Well* it’s really good to know where I stand. 🤔 Perhaps I should stick to Christianity over Buddhism, as it lauds suffering. 😄(Emotionally self-inflicted counts 😜).

Ugh, just occurred to me, my throat kind of hurts – I get really angsty and grouchy when getting sick. (Started to get that way around age 35. Awful.) At least it doesn’t take weeks to get over anymore.

Time for more rest.

Adjusting

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This has been a tough week. I’m trying so hard to stay positive and happy, but I just feel so awful all the time. I don’t have much time where I can sit up before I need to lie down again to relieve the symptoms. I did end up sleeping from Friday evening -our whole family was in bed by 9 on Friday, until dinnertime. And then I slept this morning until 11. I hope it helps. My back is hurting like crazy, but it is probably related to the leaky spinal fluid.

I think I’m so upset because I am afraid. I am afraid things won’t get any better and I will be stuck not only in pain, but even more useless.  I am trying to not dwell on this, but I need to get a certain amount out of my system. I am trying to appreciate the benefits of the relaxed life. There is the grand possibility I could be fine. God, I hope so.

I get very lonely. I don’t have much capacity to reach out or to be a friend right now. Online is so tough, I am often misconstrued, rightly so, I am so tired or not thinking about how my words are interpreted. I don’t get back to people, I have to run sometimes if I have to vomit or stuff. It isn’t ideal. Phone sometimes works, but my husband will work from home, and no phone for me! 😆 or my face hurts so much. But that is a possibility. 😊

I’m trying to watch funny and positive programs on tv. There are so many things on tv I missed out on! Friends was so Great! Arrested Development was amazing! Bojack Horseman is hard for me to follow, and I need to decide on what’s next. I’m enjoying this.

I started reading again. Reading was tough for a while. I’m not certain if I was too jumpy or if I can only concentrate on short stories, but I just finished an excellent book. I will tell you when I can get the title. I can’t move just now. 😜

There are plans to change my medications, consult with this doctor,  that doctor. But this all takes time. I am trying so hard to be patient. But I’m uncomfortable.

But when I look forward to my future, do I have 35 years left? 83 is a ripe old age (okay, we generally live longer in my family, but please) what am I going to accomplish in this time? This disease has already derailed my (sad) career. I cannot start anything in this condition. This blog is a major effort (of love!) Thank God I was able to have the kids I was told I would never be able to have or I’d feel like I had passed through this earth leaving nothing (ymmv). Maybe I’m just having an existential crisis all on its own. I’m prone to those. I have way too much time to think. My sister told me to “just don’t think about it” which is brilliant advice, but yeah, when you’re lying here in pain, your brain goes to dark places. It sucks. I’m working on it.

I was thinking about my friend who had told me early in the year that I needed a new doctor and the way they were going to fix me was without pills. He was right, in a way. But I don’t think I will be making the miracle recovery he expects. It’s not q-ray bracelet technology. If the blood patch works first time (unlikely) I need physio of between 3 and 5 years to be up and walking to where I would be enjoying time with my family. Not to mention getting on proper medication, etc etc.

I will be so much happier when I can at least lie down and not be hurting, you know? It’s bad.

Sending my love!

 

Happy 2018!

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The new year is starting off pretty well. The EDS Clinic called yesterday and notified me of a cancellation. My appointment has now moved from April 5, to February 22! Yay!

My sister was here to visit for a couple of days. She is 20180104_080853.jpgteaching English in Beijing with her husband. I haven’t seen them in two years. Of course, I was just getting over that flu/flare-up I was dealing with, so we just sat in my bed and chatted, but it was freezing here in Toronto, and most of North America, so going out wasn’t high on the list.

My sister brought me so much cool stuff! I will show you some over the next little while. I didn’t think of this until now, and loading photos after text is nigh impossible if you are slower than Usain Bolt. 😐

I am kind of glad the holidays are over. I love Christmas so very much. It is my favourite time of year. I love buying gifts and the family get togethers and being with everyone. I love the cold weather and being indoors and snuggly! This year was wonderful, however I ate all the bad foods and I am so uncomfortable. I am constipated and have horrible acid reflux. Oh, fodmap! I run back into your arms! My skin is all broken out – which rarely happens, so I know I need to get back to my regimen. To think, some toffee can cause such havoc!

I have an appointment at home with my cannabis doctor on the weekend. They are charging $75 per visit, which is only slightly more than taxi fare which is about $60 round trip. Driving is out of the question, as my husband would have to park blocks away, I don’t drive. I’m too wobbly to park and escort, and there is no place to leave me in the lobby… this works much better. I get so sick in the car as well. Then on Monday, I see my gynecologist and my sleep doctor. They are in buildings right next door to each other.  I’m going to be tired!

Both my sister and my husband helped me clear out the clothes that don’t fit anymore. I have a few more to go, because I have kept everything as I have changed sizes, but not anymore. I will buy new if I change again. I have kept a few oversize things, but I feel like I have stabilized. I haven’t weighed myself all month until yesterday and I have only gained five pounds, but within my range – it’s probably waste material, anyway. I don’ t fuss as long as I am in my range – within 10 lbs.

I was supposed to see my sleep doctor if I lost or gained 20 lbs. I use a CPAP machine, when I went on it I was on a huge dose of narcotics, and since I have lost 120 lbs and decreased my dose of that medication by a lot, so this doctor will be surprised. I wonder if I still need the CPAP?

Wishing you all the best in 2018!

Fail Day!

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My fails today haven’t been this acrobatic, but they’ve been fun! I subluxed my toe sometime yesterday, so that doesn’t feel really good. I’m being much more of a baby about it than I’d like to be.

My husband has been worried I’m only eating the same thing over and over, so he bought me some chilled shrimp. Now, he was going on and on about making his own sauce, because the commercial cocktail sauce isn’t FODMAP friendly. I happily dug in, not realizing I was eating commercial sauce, and nearly died from the burning of my mouth. Husband had taken the kid to school – it was a late start and I had been up since 4 am. However he seemed confused at my repeated requests for cheese. Perhaps he doesn’t know that cheese is the antidote to fire mouth.

Ah, he just wandered up here on a conference call looking for something that was never up here in the first place. Maybe he’s just stupid. 😂😂😂 far from it! It would be nice to have company.

Sigh. So then, the cocktail sauce spilled all over my fuzzy zebra blanket, and I dropped the remote into it. I wasn’t thinking and I licked my hand where the sauce got on it. Which reignited my fire-tongue. Wah! Here’s me: cocktail sauce all over my hands, trying to stand up without spilling any more or reinjuring my toe, trying to scooch off the bed yelling “fuck” totally forgetting my husband may be on a conference call. Oops. His fault. Somehow. 😛

My head still hurts. My goal is to stay awake most of today. Yesterday I gave up at 2:00 and woke up at 4:00 This morning. I still need to lie down most of the time.

Goddamn I hold my body rigid. I need to stop this.

My days are pretty okay for the mornings, but noon is the time. Every second day I sleep for 18 hours, it seems. I try to change the pattern, but it doesn’t seem to work. I am still trying to find a doctor, but I fear I will not be able to wait. I may need to go to the ER.

I’ve been feeling a bit more social, but that’s all well and good until someone says something stupid. I know I’m sensitive right now and I’m overreacting to a minor throwaway comment, but I should think about it’s great that people see me as the same old me.

I did buy some cute pajama pants that arrived yesterday. They look snuggly. I’m excited. I’m so cold all the time. I can finally wear warm clothes. Layers. People. Layers.

I have been burning up Netflix. My picks:

  • American Vandal – a mockumentary about the most serious of subjects: Who drew the dicks?
  • Big Mouth – the first episode is uncomfortable, but it gets better. Dirty, dirty humour, but you will learn so much. Some of my favorite writers.
  • Evil Things – creepy things for Halloween, this is on TLC, actually, really trashy show about haunted objects.
  • The Exorcist (tv show) – I’ve watched two episodes of this, it is creepy as hell. I believe Season two is on television.

 

Oooh, great, and I’ve lost the remote so I can’t look up any more. Sigh. My day.

💜

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.

💜