Hellooo Nurse!

giphy

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.

💜

In Pain and Grouchy.

giphy11

All right. I’m done. I am bloody well ready to shut it down and move to the furthest edges of where Sephora delivers. I’m over this friendship business. It’s overrated.

I had a person ask me to join a group she started, because it was a mutual interest, so I did. The members seem to devote a lot of time to this group, and it happened around the time all my major nonsense started this year. I haven’t posted much to the group, nor to this person much, except to explain my situation. She deleted me today, as a friend! (Yes, I have spyware) Now, I don’t hate her or think she’s a bitch or anything, but I think it’s pretty much a pattern of how abled-disabled friendships go. Tons of assumptions are made, three months go by, well – they must be feeling better by now! They must not be interested. Where do three months go? It took me four months to see my regular pain management doctor! So much can be solved by talking. But when you have an invisible illness, who has the spoons? How hard is it to check Facebook, really? You’d be surprised.

20170611_183303

This is a pretty nice picture. Notice my top from Old Navy with the Zebra print. This makeup took over three hours to accomplish. I had to keep lying down to quell the nausea and pressure in my head, increasing my headache. I also was dealing with a broken crown because my medical examination last week was so painful, I grit my teeth in pain, and… well. We do need to wait until after my Botox treatment shots tomorrow, because I get lidocaine and Botox in my jaw and it helps a lot. If I need to sit with my mouth open while they tinker, it just makes sense. I mean, my jaw aches, but it’s only really bad when I bite wrong. So, we don’t need to wait, but it makes sense. In this photo I have that headache, rapping the back of my head, jaw pain, my hands are achy from fumbling for stuff, shoulders are cranky, they don’t like holding cameras, and my abdomen/hip on the right side is doing that “you really could lie down you know, sure it bunches up your neck, but so what?” But I’m still trying to look cute and show off my makeup, because this is the Internet. Everyone has a perfect life here!

Why do I do it then? Because otherwise I just lie here bored. Some days that’s all I can do. Some days I need to get my family in order. Things take a lot longer than before. My memory is bad. It must be the pain. My neck hurts so much. I can barely keep track of what I’m doing.

I have been buying tons of makeup again. Partly because I can’t keep track of what I have. I was half-joking with my husband, saying makeup is all I have. I started listing all the things that were no longer available to me:

  • Sex
  • Watching complicated television
  • Milkshakes
  • Travel
  • Dancing
  • Beaches
  • Carbonated Beverages

I went on for a while until I felt good and sorry and it was no longer funny in the slightest.

However, I have discovered a few things that I can participate in:

  • Iced tea with aspartame (I do not care, this is keeping me alive right now)
  • Watching comedians on various corners of the cable service
  • Wearing my zebra outfits
  • Lovely Brand caramels, made with condensed milk – which isn’t FODMAP friendly, but if I only have a couple I do okay. The Sea salt ones are so good!

 

This cheered me immensely.

My son turned 13 yesterday, and my husband made a FODMAP friendly cake! Isn’t he the sweetest? Chocolate, which is the boy’s favourite. The girl likes vanilla. I can’t believe I’m Mom to two teenagers. That’s so weird. I’m just a teen myself! Well, it seems that way, in my head.

Speaking of my head, I spend most of my day in it. I deliberately stay away from people and try to stay busy. I’m always doing something. I have two blogs. My kids require as much support as I can give them, my husband needs loose ends tied up, and I need to maintain my health. All from my bed! I can get pretty foul tempered when I’m in pain. I want to save whatever good mood I can muster for those to whom I’m closest. I want to be as unstressed as possible, and that means releasing myself from as many entanglements as I could.

I even told my MOTHER I needed some space right now.

I see you people hanging on there. I appreciate the hell out of you.

Don’t think I don’t see the irony of me saying “people should really talk more” and me just dropping out of society, but if you were in my head you would totally understand. I feel like there’s a gremlin on my shoulder chopping at the back of my head. My neck is stiff, it hurts to turn right or left or look up. My jaw is stiff and sore. It’s tough to think and comprehend what people are saying. It’s quite embarrassing. It gets worse as the day goes along. It feels like I was put in a blender. My brain is spinning. It’s difficult to concentrate. I’ve been working on this post for two hours now. I’ve lost parts of it. Doing anything is like this. This is not what I am like. I am efficient and organized. It’s a nightmare for me.

I don’t remember if I said this, but the doctor said he was referring me to someone who was going to examine my neck/head and potentially do a block. I think that’s what they thought, but maybe an MRI first. Or an x-ray. Would be good. I don’t want them poking around without any idea of where anything is. I mean, even the dentist takes x-rays.

My face is killing me. I only need to make it to tomorrow.

Love to you, Zebra pals! 😘

 

Disability Stories – My Mother-in-Law

giphy29

Let me preface this by saying I know my Mother-in-law isn’t truly evil. She just doesn’t think things through before expressing herself some  all the time. My husband had a fairly revelatory discussion with her the other day (Sunday, actually, beginning at 8:30) where we discovered she often thinks she’s being funny! Imagine!

My Mother-in-law is older than I think of most moms, in that she’s in her mid eighties. Her husband is nine years younger, and quite a hunk! Portends well for my husband’s aging process! Not only is my Father-in-law handsome, he is sweet as spun sugar. 💙

Now my Mother-in-law, I do believe, generally has the best of intentions, generally. I first met her after the breakup of our mutual relationships and when now-husband and I had just finished the ‘should we or shouldn’t we?’ dance. I think everyone knew this relationship was significant.  She served dinner on warmed plates, so fancy. She was trying so hard. It was sweet. It was my first trip to the Danforth. On Logan Avenue. Gorgeous neighbourhood. I’ve lived in Toronto twenty-five years, I’ve been on the east side maybe fifty times. Anyway, they were lovely. She ran around before I arrived removing photos of his ex-girlfriend. It had only been three or four months. They had been living together. They bought a house. (Oh, that really makes me sound like a home wrecker, but on reflection I do believe we were set up. It took me years to realize).

Things went well. July of 1999 husband and I moved into the top two floors of a house off of St Clair West near Oakwood. At this point I was dealing with just Endometriosis…except my thyroid started acting up shortly after we moved in together. I went from 190 lbs to 220 lbs in 5 weeks. Then another 20 lbs came on over the summer. By October of 1999 I was 240 lbs. Thyroid medication was the only thing that stopped the gain. We have no idea what happened.

Prior to this, my now-husband had drifted away from his family. Because of me being such a lovey-dovey nosy person who doesn’t know when to leave well enough alone, I declared this ‘strange’ (I was 29 and stupid) and encouraged him to get in touch with his perfectly lovely seeming family! His ex-girlfriend was much like my ex-husband. Very artistic, loves to be centre of attention, not really good with details. Which means both of our houses looked like trash heaps unless he at his or I at mine did something about it.

This is the scenario when I, a former go-getter have my first child, which was actually a fairly traumatic birth, involving a c-section, yanking, tugging, more yanking, THE DOCTOR GETTING ON THE TABLE AND STRADDLING ME, and finally her birth. Still no idea about my EDS diagnosis at the time. After this, I have a year off, nine months of which is pretty good, and the pain returns with a vengeance. (Things are hazy about this time, two young kids, pain, migraines, under medicated). I got my daughter into daycare and tried to go back to work, but I couldn’t.  I had my daughter in daycare in February, and by October I was pregnant. It was the only time I felt okay. He was born in June of 04. I had to put him into daycare as soon as I could. He was too active and my pain returned too quickly. Yet as soon as she heard about my pregnancy, my sister-in-law asked me “why would you get pregnant again when you can’t look after the baby you have?” I was gobsmacked. I muttered something like accidents happen, although he was no accident whatsoever. I assume she was referring to our decision to keep our daughter in daycare while I was not working. Not that it’s anyone’s business, but she really enjoyed daycare, and it was good for her. Plus, what’s wrong with her Dad? Is he a potato all of a sudden?

After both kids were here, both c-sections (where I actually got online V-bac counselling from Michelle Duggar, who was on baby 7?, hand to God!)  I was in a lot of pain. Here is where my Mother-in-law comes to my rescue? No…here is where my Mother-in-law sees I am not working. Probably assumes I have no income.* Sees I am slacking off on my household chores (My husband has this terrible habit when he is talking on the phone of saying “I’m doing the laundry” even if it is I who was doing the laundry.) And starts encouraging my husband to take the children and find a new wife. He is certainly young and good-looking enough, she assures him. (Why would he tell me this? My husband has Aspergers, it probably didn’t even occur to him I would see this as anything but ridiculous. He is incredibly sensitive, and has grown so much, 15 years ago he was a bit green, and we had babies).

To complicate things, husband decided to take our co-sleeping sprogs to sleep in the other room so I could deal with this chronic pain that was cropping up. Only he didn’t say that. He just left. I was sure it was because I was revolting. Or, he had the children he really wanted. He could go off happily now. My DNA is so Oooh speshul.  Haha! I was so crazy partly,

I had been prescribed opioids by my GP for pain. Whee! No not Whee! Like high. Actually, I was joking with a friend who has something… that lung thing… we’d be ‘lucky’ enough to be roofed at a club, I can see it. Picture it: *Hmmm, I’m actually not feeling too bad right now!* Lol! Back to the story: Hydrocodone, I think? Anyway, it was fine, I took my dose just fine, every four hours on the dot. HOWEVER patients with EDS tend to metabolize medication faster than the general population, and I am one of them. I am done with a 4 hour medication at 3 hours. Cold medication, pain medication, everything. So for almost a year, I found out fairly recently, I was spending that hour essentially going through withdrawal, how many times a day? That must have been the worst time of my life. No, I honestly can’t think of a worse time. Should there be an equation for this? My time with my ex was awful but it was extended, this was concentrated awful.

I know my husband stuck up for me to his mother, but she just wasn’t having it. I think it bothered me so much because I sort of agreed with her. Things got so much better when I got to a proper pain clinic and on to long-acting pain medication. Then life started turning around. We had a housekeeper for ages, but he could only do so much. Our kids have Autism, our daughter needs to see everything, she spreads her stuff all over the living room.

Hmmm. This was supposed to be about my Mother-in-law, and I guess it was, but it was a bit more winding than intended. 😄

I will have to follow-up with part 2, with some quips.

 

Have a good day, Zebras 😘

 

 

*My in laws’ 50th was last year, and my husband and I paid for the party, and his brother and wife bought them something amazing or something, they have exceptional taste, anyway, remember now, my husband and I have been married – it’s our 16th anniversary in October. Because my husband and I work for banks, we have TONS of accounts. Also because I’m stuck in bed, my husband has a private account his cheque goes into, then he transfers it to wherever, I don’t follow how it works. But he needed an account and couldn’t wait for me to feel well enough to get to the bank. Well, when he paid or reimbursed his Dad for party expenses, he wrote a cheque on his private account, not thinking of the optics. Well, he’s received two or three thank you cards and gifts, but they don’t mention me or the kids. I don’t know if I should bring my bank statements showing my pension and my disability payments, leave them lying around? Nah, they’d probably match up the account numbers. Ouch.

Creeping up on Feeling Better

giphy24

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

giphy25

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! 😘

Slightly Brighter Day Dawns

giphy23

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!

Predictions

giphy21

I predict I will be visiting the hospital soon. This pain in my front right abdomen is agonizing. I feel like I’m on so much medication. But I’m not really ‘high’. In that Beavis and Butthead would be funny, kind of high. I feel like I’m  (shoot, I just made a mucromovement!) If I keep really still, but I’m trying to relax, anyway, I don’t have pain. If I move, though, something will sublux, and my pubic bone aches from my 2 pregnancies. Both of whom are teens. (Or will be in two weeks). I find it hard to think. I want to sleep. I’ve taken my sleeping pill, night marijuana oil, night meds, and breakthrough medication.

I’m extremely hungry, but my stomach is upset. I bought new clothes from Old Navy, I’m always spilling, in size XL. In regular people size! Not plus! I’m amazed! Thrilled! I essentially bought a new wardrobe! $3 tanks and sleep shorts, and the same dress 3 times. It’s a great dress, perfect for the doctor!

It’s what I’ve been doing to pass time. It’s the only attention span I have. Got to stop now.

Anyway. The pain is increasing, wrapping around my back, to the point it hurts to move often. Add this to the nausea and dizziness. Add in my neck and head pain and I just need to have a moment, perhaps.

It has occurred to me people have been treating my pain for the last few years, but not really looking after my other bits as well as they should have. We need to talk about that. I think my doctor finds girls icky, and avoids the tests he’s supposed to do. Not good. I will have to scold him. As if it will make a difference. Put that on the list of items to fix.

My husband has just come in from picking up a friend from England? South Africa? He lives both places, and just flew in, so picked him up and dropped him off, and now is at work downstairs in the dining room, because there was (is?) some sort of crisis.

giphy22

Do you love hospitals as much as I do? 

He did check on me first and felt there was a hospital visit coming. He doesn’t like that I’m still on the same amount of medication for a whole two days, (not a personal fault, a measure of pain) it doesn’t fit the pattern. I don’t remember, am in too much pain now, probably then, too. I think I will try to maintain as much as possible and go to the hospital at the most convenient time for our family. Also, I don’t want to scare the kids. When I told my daughter is might have to go, she burst into tears. She is under a lot of stress right now.  I’m feeling comfortable and sometimes I resolve cysts on my own. Plus, I might be catching the cold the kids had. Oh joy.

I love my kids. Is there some other way we could have gotten them? Pods? Amazon?

If you don’t hear from me for a couple of days, I am probably just very heavily medicated and trying to be very still. If something happens I will try and get a note somehow at some point.

My sincere apologies to Tylenol, you are much more useful than I thought.

To readers and commenters I’ve neglected, and well, everyone! I’m trying, but it shall continue for a time. I truly appreciate your patience – I will catch up! 😄.

The gentlest hugs to all of you. Have a wonderful whatever it is, wherever you be! 😘

…as a Kite! 😄

giphy20

The pain has not subsided in any way. I’m just lying here, taking my breakthrough meds as prescribed, and trying to hold off going to the hospital.

To answer proactively,

Why I don’t want to go to hospital:

  • It will greatly upset my kids, who are currently struggling with anxiety.
  • I do not think there is anything they can do for me there that I can’t do for me here.
  • If it is, in fact, a cyst, I am not having surgery, they will just send me home anyway.
  • Anything that is wrong with me, actually, they will drug me up and send me home.
  • I have more suitable (not better, granted) drugs here, until I really can’t take the pain.
  • I will be more comfortable here no matter what.

So, this is why I’m trying to hold out no matter what. I’ve been through this before, and it isn’t fun, but it’s definitely surviveable.

My husband is working from home today, so at least I feel protected. That’s not the right word… 🤔

Enjoy your day, Zebra friends! 😘