Growing Old Together

giphy30

Yesterday turned out to be quite hellacious for me, pain-wise. We’ve been having a lot of rain and intense storms, as has much of North America, I think? I’m very sorry, I can barely concentrate on what goes on in this room. It’s supposed to be a mixed bag this summer, from what I understand. Hot, cold, rainy, all over the place.

Back to yesterday, my treatment is coming up either Tuesday or the Tuesday after, my husband isn’t certain. Which means the last injections are wearing off a bit, it doesn’t always happen, but usually. My bet is on this Tuesday, since the low-level headache started on Sunday of last week. It’s usually the first sign my treatment is coming up. It’s not that bad, it’s like a mosquito buzzing, annoying, but livable.

Where were we? Yesterday. Thunderstorms were gathering all day, and I could feel that tension in the back of my head. It was not at all pleasant, and began to creep down my neck. It felt like I had something out-of-place and it was pressing? It hurt so much.

giphy31By 9:00 my husband came to bed, and I was really hurting. I was trying not to move my neck, and it was tough to think. I had my neck pillow holding me steady. It was like something was pressing on something leading to my brain, or, like Homer Simpson, I had a crayon up my nose.

We chatted for a bit, snuggling, and he tried to boop my nose, but missed by half an inch. He’s had problems with glaucoma, surgery last November. He closed his eye and tried for the boop again. He got it! It’s sobering to realize how much vision he’s lost, but we did have a laugh. We are quite the pair. For a good few minutes last night, our bedroom sounded like “oof” “ow” “ouch” “aaagh” “dang” “crud” “ugh” “ow”! How romantic! ๐Ÿ˜„

We did get some kissy-face in, nice in a thunderstorm. But it’s tough to be all romantic with your partner when your neck is stiff and your hands lock up into mannequin hands.

This was strange, because it’s never been this bad before. I do have problems with my hands. They get stiff and sore, and I haven’t been bracing them. I also haven’t been resting them as much as I should, doing all this typing. I have been feeling the stiffness quite a lot lately. I guess last night, with the rain and thunderstorm starting at 3:00 in the afternoon, just when the kids get out from school, naturally, and raining off and on until after midnight had something to do with it.

Of course, my daughter did not wear her new rain jacket and came home drenched, but my son did wear his! Bravo!

Of course my husband was amused by my predicament, and I pretended to run my mannequin hands through his hair. There was no point in doing movie banter, he hasn’t seen any movies. I pretended to run my mannequin hands over his face, and they were fairly numb at this point, and he was laughing so hard I was afraid we’d wake the kids. Besides, my stomach was hurting.

So he went to sleep, and I stayed up listening to the storm for a while longer while trying to relax. I wanted to see if relaxation would help whatever was wrong with my neck. Finally, I decided sleep was a better choice, and bailed.

This morning finds my neck much more flexible with little pain, but you can feel a background warning. I will keep the Voltaren handy! And ensure I keep relaxed. Deep breaths. I should check the weather…

Have a fantastic day Zebra friends! ๐Ÿ˜˜

 

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 someย ย 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. ๐Ÿ’™

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. ย 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. ย 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!) ย 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. ย 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. ๐Ÿ˜„

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

 

Have a good day, Zebras ๐Ÿ˜˜

 

 

*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.

Current Mood: Exasperated

Over the weekend, I managed to get a lot of rest in and my abdominal pain is resolving. This makes me question the cyst

giphy28

Current Mood in Action

theory, although, I did have a major bout of nausea last night, which is what I was looking for. It just sseems very short. These used to last a week or so, and this was a good two to three days shorter. Now, I haven’t had one in a few years. I am getting older, that may be a factor. My Mom was 11 years older before menopause really started, she said, so I guess it’s time for peri-menopause at the least. I should likely have my hormones checked. I’m interested in what my thyroid is doing. I’m pretty sure my GP has his eye on it. This is the major problem with having illnesses. Routine, important maintenance gets pushed to the side, often with the assumption ‘someone else’ is looking after it. I have so many things I’m chasing right now it isn’t funny!

 

giphy27

Not all, of course! Ha!

Anyway, my ovary whatever seems to have resolved itself, so I’m not being attacked from the inside, but my abdominal muscles, the whole of my abdomen feels like it was removed. Remember that doll, Skipper, that was pregnant? You could take her abdomen off? That part is burning fiercely.

It feels like someone has taken a blowtorch and actually removed that part of my stomach. I have no idea why. The surgeries I’ve had in the area are gallbladder and appendix, are they enough to cause that pain? Oh and two c-sections.

Once again, I’m back to eight days from my shots. Botox for migraines and EDS. So my back is aching. My low level

giphy26

Chris O’Dowd looks so much like my husband. Back in the day. He’s neater now. ๐Ÿ˜„

headache is ramping up, and my neck is really sore. I’m back to the nausea and headache and dizziness problems I had before. When I was in so much pain and couldn’t move, I wasn’t thinking about how ill I felt. Now that I’m on less medication and am upright and have peeled away a layer of pain I can feel it. The problem is, it’s not bad enough to be debilitating, ย but it sure is bad enough to make me grouchy. I’m trying to be kind, but I don’t like myself on days like this. ๐Ÿ˜ฆ I’m watching some comedy and staying isolated to try to help.

Almost there!

It’s supposed to rain off and on this week, and that never helps. I’m going to play with some Maybelline makeup ย #igotitfree through @chickadvisor. Pretty awesome. Then, a nap!

I am not going to have the strength to talk to people I think. I won’t be able to censor myself. I snapped at my son yesterday for no reason. It’s not fair. I’m too worn out. I’m trying to catch up on blogs, but it’s all I can do to press like sometimes. I don’t get there, some days.

No, wait. I did have a reason to snap at my son. But it still wasnt fair. I asked him not to come into my area while I was trying to fix a problem and he did anyway because he is autistic, and I am in pain but trying anyway. I made a mistake and apologized. He made a mistake and apologized. Better.

Okay. Need to conserve spoons.

Stay strong, Zebra pals! ๐Ÿ˜˜

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 ย 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. ย I’ve already taken breakthrough medication, ย 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. ย 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! ๐Ÿ˜˜

Slightly Brighter Day Dawns

giphy23

You know how it is when you make a big deal about something, it always resolves itself immediately. ย 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! ๐Ÿ˜Ž

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 ย (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?ย 

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. ย 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! ๐Ÿ˜„.

The gentlest hugs to all of you. Have a wonderful whatever it is, wherever you be! ๐Ÿ˜˜

…as a Kite! ๐Ÿ˜„

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… ๐Ÿค”

Enjoy your day, Zebra friends! ๐Ÿ˜˜