Muddling Through

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All in all, I’m not feeling too awful. I hadn’t had a great time sleeping, but once I’d figured out my feet haven’t been warm since… I can’t remember, it was time for some socks. I usually can’t sleep with socks on, but my feet liked this, and I slept like the proverbial log. I thought I should look online to see if I could find some slippers. Not an easy thing in August. I may stick with the socks with the trippy bottoms for now.

I was miserable last night. I had a couple of days where I had slept for 20 hours or so, and my meds were all screwed up. My knee kept popping out, my face and head hurt, my back hurt, I had cramps, I couldn’t remember anything, and I was lonely.  I was whining to my husband that I couldn’t get comfortable, and I was freezing. I wanted more pillows, and he got this happy look on his face. Apparently, he had purchased all these pillows and didn’t know what to do with them. So he immediately piled four pillows on me and produced three from under the bed. Such comfort!

My sheets are so gross and smelly. I’ve been so sick, husband hasn’t been able to get me out long enough to change them. This weekend. I am so excited! The kids’ bedding is changed every week, but I’m always asking him to leave it just one more week, we will be fine! Ugh.

I am so tired these days. The heat, the pain, not moving, the stress. It adds up. I’m usually better after my shots, but I haven’t heard from the clinic yet. I’m not eating as much, either. I get weighed on the weekend, usually, too.

Today it’s mostly my head, my back, and my pubic bone giving me trouble. My knees are acting up when I get up to use the washroom. I try to straighten them and they pop and crack, quite painfully, as you see the patella slide around, or it knocks sideways before sliding into place. God, it hurts.  I’m trying to rehydrate. Last night I had the worst case of dry mouth. It’s probably from all that time asleep. I should have taken in some water. Thunder storms and rain today. The big stick that pokes my wounds.

My boy is a grouchy today. His sister is being sweet to me. I was thinking just yesterday how I will missthem when school starts. Check that. Not the fighting. Sigh.

As long as my feet are warm, I’m sleepy. So it’s naptime. I’m nodding off.

Rough Night.

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I have been having horrible abdominal cramps the past couple of weeks. I was diagnosed with Endometriosis in 1989. It was originally thought to be the source of my pain. I have been fine since I had my kids, mostly due to the Mirena. I’m on number 3, and am on year 2 I believe, so nothing should be wrong. I haven’t had any spotting. In fact, it had been working miraculously in helping me with cramps.

Over the past week, I’ve had discharge as if I was ovulating, (that’s one thing about chronic illness, being really in tune with your body. I knew exactly when I was ovulating, which made pregnancy a snap). The cramps were slightly menstrual-like, but more sustained ovulation-like. Mittelsmertz, if you will. Yesterday I was so distracted I even forgot my medication all day!

I went to bed early, I was generally uncomfortable. My head is hurting at the back. Around midnight I woke up screaming with intense abdominal cramping. Did I have a cyst burst? It was just on the right side. The pain lasted almost 20 minutes with me just babble scream-moaning for that time. It eventually subsided, but I’m aching intensely this morning. It could be that I caught my ovary or twisted it a bit. Or a bit of adhesions ripping. It could be anything. Well, not anything. I don’t think it’s actually a hedgehog on a rampage. It just feels like it.

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This was under the gifs for Endometriosis.  I thought it completely appropriate.

I had a horrible time trying to sleep last night. I just couldn’t. I took extra meds, but it didn’t help. I read some junk on my tablet.

I have my makeup in stacked bins beside my bed. At 10:51 pm. The past two nights, a whole row has fallen over. 😮 spooky! I know my family has been in rough shape because we’ve all been in bed before 9:30 both nights.

I’m curled up in a ball, trying to amuse myself. I’m focusing on taking my meds, having some fun, and taking things a bit easy. I don’t know quite how this will play out. My gynecologist is part of the pain clinic, for the endo part anyway. I don’t have one for other stuff.

The BOTOX shots help a ton with any cramping or discomfort. I had forgotten how much pain this can cause.

My husband might just swaddle me and leave me at the emergency room. 🤣 Like he was giving up a newborn. What should the note say? Tag you’re It? She’s your problem now?  😈

My husband had no idea what to do, so he did nothing. I’m not exactly thrilled. We should probably have a discussion.

Another issue with my doctor being absent is he made a lovely compound for me, well, ordered, and I’m now gingerly using it. I don’t know if I can get it again. It has gabapentin and ketamine in it, it’s a lotion, and it’s unbelievable. It fixed my abdomen earlier. I don’t have another doctor for this.

It was upsetting when I mentioned my doctor situation on Facebook, people started speculating he was ‘up on charges’ that is such dangerous speculation. I took the post down. I wasn’t strong enough at the time. I’m still worried about his health.

Anyway, I need to rest. More soon.

Oh! I’m down to 188. This was the 20 lbs I was keeping for emergencies, remember? Heh. Oh well. Eating is hard. Nausea is pervasive. Heartburn is so often. Even though I’m on the max dose of medicine for it. I just rechecked the BMI charts, and I need to lose 15 more lbs and I’m normal weight. That blows my mind. I was certain I’d never lose this weight. I suppose I like being slim. I’m not so certain I like the attention from men. Wait. I like the respectful attention. I don’t like the disrespectful attention.

Ok, bit of rest now. 😊.

Progress!

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Finally, some good news! After another hellish treatment with Botox, (actually it’s not the needles that hurt, it’s feeling around for the trigger points to inject, because even gentle pressure on areas of my body really hurts). And I need to tell you the story of my day, still, because it was funny, but I’m still worn out.

My doctor gave me a cream for my head pain and said I can actually use it anywhere. It’s a bizarre mixture of ketamine, gabapentin, and other stuff. So far it’s helping to a certain degree. It may take time, though. I tried it first on Wednesday, and was immediately sick. But then the pain subsided slowly.

I tried it on my stomach last night and this morning. This morning, I was immediately ill. I may need to ramp up even slower. I don’t know quite how, except one part at a time. You only use a half a pea size amount per small area. My entire abdomen takes 1.5 pea sized amounts.

So, I guess this stuff is pretty strong? Or I’m just sick by coincidence, which is possible, because I hurt to be touched and my husband was rubbing some of the sorest spots on my body. Gently, but, sore nonetheless.

Just a bit about my doctor appointment from Tuesday: after we did the treatment, we had a chance to talk, and my doctor is concerned about my head and neck pain. He is sending me to a neurologist, even though he is one himself, he doesn’t have time to deal with this, his hands are full. The neurologist will consider a nerve block, likely, but will investigate the source of the pain.

My husband asked him what we should do in future with pain like this, and he shrugged without shrugging. It very much depends on my health, the danger, circumstances, everything, really. Am I in pain? What do I need? What am I looking for? So I asked if I should have gone for my head. He told me he won’t know until they find out what’s wrong. There ya go.

Last bit of gossip is we discussed my gastroenterology problem. I am now down close to 120 lbs. There is no way at nearly 47 years old I should be bedridden and losing two lbs a week. It makes no sense, metabolically. At about 193 lbs now, I’m only 25 lbs overweight. That blows my mind. I’m glad I’m getting something out of this. Um. I hope it stops somewhere. Anyway, my doctor agreed, and said this should be another priority. I then looked at him and said, this isn’t making sense. This doesn’t sound like just EDS. Something else is going on here. He was silent. He went back to writing scripts. He then said, I think you’re right. I haven’t seen anything like this, it’s progressing too fast to be just EDS.

Sleeping is easier.

Have a stellar day, Zebras! 😘

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! 😘

Predictions

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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.

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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! 😘

Self-care, it’s Tough!

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I was chatting with my friend Tina who blogs at Avon365blog, (go check her out!) And I had mentioned how hard I find self-care. I grew up with the attitude that self-care was for the weak, and we can sleep when we’re dead.

Beginning at age 12, my parents gave me a meager allowance, considering, I think it was $25 per month for clothing, and then maybe another $20 a week for everything else. They paid for my food and shelter, and I paid for everything else. EVERYTHING. Although I usually snagged my mom’s menstrual supplies. Now this sounds like a lot of money, especially in the 80s, but I lived in Canada. I had to buy winter boots and coats. I had to buy birthday gifts for friends. I had to pay school fees for yearbooks, etc. So….I worked. I also had endometriosis, and would collapse in pain each month. And I had EDS. My aches and pains were just growing pains. But I kept on. I stayed in school and worked two nights a week and weekends. Kept my A grades. I ignored the pain. I never thought about it. I couldn’t.

This isn’t “oh! I had a terrible life!” This is just how it was.

I’m used to being busy. Sitting still is tough. Watching TV? Why not organize a drawer? Tidy up? Fold laundry?

Sometimes  wonder if that’s why the Universe/God/Flying Spaghetti Monster finally made me slow down and listen. I’m learning how to do this. When I saw the physiotherapist a year and a half ago, while he was talking to me, he was drawing letters on my leg. I had no idea. I was really out of touch with my body. I’m slightly better now. Losing weight has helped. I want to be more in touch now, I’m not in self loathing mode.

Today, my back is really sore. I had fun playing makeup yesterday! It’s fun and relaxing. I’m glad I still can do something. The back of my head is quite sore today, and rain is in the forecast. The weather definitely has something to do with this. Cluster migraines?

My mom asked me a strange question the other day. She asked me if (I presume she was talking about EDS) was progressive. I hadn’t thought about that perception. Whether I just have a series of flares or if my health actually deteriorates. I had thought it was obvious, as I was formerly ‘normal’ (average), but upon further reflection, really it isn’t.  I have gone from working my ass off to bedridden, but there is also the consideration of breakdown of collagen and tissue. For example, my knees – particularly the right, has a breakdown of the meniscus so dramatic that it is ‘gone’. When I walk it is bone on bone and the patella is so loose I walk like a cowboy. My left is also on its way. My wrists and fingers are sore and achy, likely insane carpal tunnel. I’m trying to get in with specialists to actually treat this, but the doctors retire, someone screws something up, this is three years of nonsense. My 100 lbs weight loss has not relieved any pain, in fact, overall, my pain has increased. I finally found a gastroenterologist who had a clue what was wrong with me, and he retired.

So, yeah, I feel it is progressive, in that as structures break down in your body – the collagen containing ones… I guess that’s most of them. Your body is going to start to deteriorate. My elbows are going the way of my knees. My fingers ache all the time. My tablet isn’t always my happy place.

Okay, going to try to play! Have a fun day, Zebra friends! 😘

Just Keep Swimming

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I’ve spent the last five days or so sleeping for at least half the day, and I’m still exhausted. I just don’t have the strength nor energy to do many of the things I want to do. I really have to think about what I want to accomplish and where I can spend my energy. If a conversation runs over, so long bath! My daughter had a panic attack this morning and I am pretty much done for.

My husband has this idea in his head that I’m bored. Nothing could be further from the truth! I have lists of things I want to do! I have makeup looks I want to do, books unread and stacked, waiting, crochet projects, movies to be watched, blog posts to write, friends to chat with! As it is, I am busy from morning until night when I have the energy. I can’t seem to convince him, and it makes me so sad.

My neck is so bothersome I just can’t take it. I move wrong and I have intense pain. I don’t know what to do about it. I’m waiting for my doctor appointment in six weeks. Hell, I have pain when I don’t move. I’ve considered going to the hospital, but really, what can they do? My abdomen is also giving me incredible pain. I’ve run out of the higher THC mmj my doc prescribed. I only vaped extra once, so that doesn’t work. I ordered yesterday, so yay.

Good news, I broke 200 lbs! I’m 198 now. I don’t really know how to stop this. I guess I will stop when I’m there? I’m eating what I can, not trying so hard.

Going to try a nap for a couple hours, then try and put a face together, because it’s fun! 😀

Hope you’re having a good day, Zebras!