Letting Go

 

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I’m likely having a flare-up. At least I assume that’s what is going on. My brains are currently pretty scrambled. The pain is pretty intense at the moment, and the pain medication is taking the edge off, but not much more. I continue to take it, don’t want to deal with withdrawal or anything, but it doesn’t really make much of a difference.

Sorry, bit of a pause there, my husband came upstairs after his weekly call with his parents to check on me, and I got some medication and rub. That was nice. I’m slightly more comfortable, but not too much. At least my neck feels not quite as sharp.

Husband and I had quite a row yesterday. No. Wait. I had a tantrum. That’s better. I’m not doing well with accepting that I need as much help as I do. He is a bit overwhelmed with his own duties and obligations and didn’t see that I had not eaten and had missed my medications too long. Yesterday morning I was trying to take my morning pills, but I kept dozing off from pain and sleepiness. I’m usually pretty vocal about my needs, so he doesn’t always babysit me. It blew over quickly, though. We spoke honestly with the kids about how we did things badly. But this was the outcome. I spoke about my trouble accepting help, but I really need it right now. It wasn’t positive, but I think we moved on in a positive way.

So that help thing. We don’t have any help in the community at all. Besides professionals, we just don’t have anyone we can rely on. It’s just the four of us. As I’ve mentioned, our kids have learning disabilities. Our daughter, Aspergers, our son, a processing disorder.  Both of them are in counselling and support twice a week, and have severe anxiety issues. I feel really awful asking for anything from my husband! Although he gives so freely!

Anyway, I realize I just need to trust he will tell me when he has had enough. I have gone two weeks without a proper bath and I just need to suck it up and do it at midnight if we must. Despite our daughter, newly minted 16, shushing us for being too loud at 8:30 last night, Saturday. We are a party crowd.

The luxury of sitting up has been whittled to a few minutes at a time. The nausea and back pain is ever present. I realize now I must let go of a lot of things I may have wanted for myself coming up. I really need to focus on myself right now. This is not something that comes easily to me. Sure, I can do face masks and things, but to really rest without distraction is tough.

I need to let go of worrying about what people think about me. So much of my life I was taught that other people’s opinions were paramount, and it is my duty to micromanage those opinions. No wonder I’m so tired! There are certainly a lot of people who dislike me, I think more than the average person, but I need to just stop trying to dissect what is wrong with me and live my life. I need to chalk it up to being a psycho magnet, as we used to call it back in the day, I know I am very naieve and have made some very bad choices in friendship, and I know a few enemies were made due to people ascribing me stories or characteristics which don’t belong to me at all. Many along the way seem to have this idea I’ve lived a perfect life. I’m some rich kid. Ha! Bizarre. Anyway, I really do need to stop looking back at my life from others’ perspective because it doesn’t serve any purpose, but damn, it’s fascinating.

I need  to accept help. I need to stop with the caretaking. Do you know I was actually thinking of posting on Facebook that it would be okay to unfriend me, it wouldn’t hurt my feelings? I mean, people are kind of acting like I run around and punch them in my sleep, or make horrific posts…wait, I should go check that. I won’t share my health updates. I guess. Maybe. I dunno. I’m just back using it again.

I’m thinking I may play with makeup lying down one day. We shall see how that goes.

My son came into my bed this morning after my husband got up at 6. It was lovely. He had me so relaxed just by wrapping himself in his blanket beside me, putting his face close to mine, and stroking my cheek – I fell asleep! I love that boy! (My girl just as much!)

Ok, perhaps a warm bath would be good. I don’t know. I’m still so uncomfortable. It’s not quite sharp pain, I feel like I’m being squeezed by a boa constrictor. From my cheekbones to my hips. I need to relax, but I don’t know how. God, I think I may have to go to the hospital if this doesn’t let up somehow, or I find something that helps. I’m at least calling the doc tomorrow. Or having my husband do it. Ugh, having indigestion does not help.

Oh, sitting up feels so much better.

I will keep you posted.

 

Mid Break Update

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I am really feeling better. I have taken a giant step back, I feel. I am streamlining my life.

I have divested myself of my Beauty blog. That was difficult. I’m disappointed. I enoyed that so much. I don’t know that it was hugely popular, but I enjoyed it. The commitment was too much, however. I will still continue to play with makeup. It is excellent therapy. It keeps my hands nimble, keeps me moving and motivated. I have a reason to sit up straight for a while, although I can lie down and apply makeup!

I’v pared down my Facebook friends list. I was originally going to delete everyone, and keep my account only as an identifier to log on to websites, but as I was deleting people, there were some who… well, I just couldn’t get rid of right away. I thought I would do two phases. Then, I decided to live with the smaller list for a few days. I like it. So far, it might be the level of socializing I need. Unfortunately, in my haste, I know I let some people go, people I probably shouldn’t have. I can’t remember everyone, though. I do hope they will be back.

After the US election last year, I added tons of friends, thinking there would be opportunities to make some great friendships. I did make some friends. But I overestimated my ability to actively participate in friendship. It’s also interesting to see who had left long ago.  But I think this was a mistake, overall. As social and gung-ho as I sometimes feel, I sometimes don’t take the time to guard my emotions or protect myself from potential toxic friendships. I need to be more vigilant.

I feel like I have been doing a lot of things in the wrong way lately. Perhaps pushing things too hard when I should be letting go. I’ve been complaining and feeling that I have no friends, but I do, and I have. I couldn’t see them for the riff-raff. It’s embarrassing to admit, but I would be disingenuous if I didn’t. I think, however, those who have been in acute pain for any length of time will understand, at least, how I may have been feeling.

I’m feeling far more zen. Focusing on myself. My family. Becoming well within myself. Banishing negativity. It is hard, because my body is going through hell, but I know it’s for the best.

I’m decorating my space with pretty things. I’m organizing everything I can get my hands on.  It’s one of my favourite things.

The muscles in my back have been killing me, partly from getting rid of stress, partly from overdoing it. My head still hurts. I have almost constant migraines and facial pain, but I try to not think about it. Keeping up with the medications help.

Another issue is that I am bad at taking my medication. I am now committed to taking my full dose at proper times, and it’s helping a lot. I know I am being stupid about this, but I lost a bunch of friends on a message board when someone decided I was a drug addict for taking my medication (it was the wrong type at the time, not a good fit, I was going through a nightmare on this stuff, so I really wasn’t great at defending myself) and it’s affected me. I am working on this.

My kids are really struggling. I am trying to be more present for them. My son does not, in fact, have Autism, but a series of learning disabilities. My daughter, does have Autism. Both have anxiety disorders. Brilliant kids, struggle to leave the house.

Be well, see you on the first!

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I received an email this morning telling me that the reason my old pain management doctor was on leave was because he sexually assaulted three people and the College is calling for more stories. The clinic is being shut down. They didn’t hide their glee. They couldn’ t wait to lay their story on the College!

Look, I’ve heard the rumours. I’m horrified.  I’m disgusted. I don’ t know if there are any people out there who aren’t monsters. Yes, people. Women have been just as disgusting to me as men. Which is why I’m sitting here alone.

I really don’t understand why you have to clobber me repeatedly with the facts. I said I wasn’t sure what was happening, because I heard your version, everybody has heard your version, but the facts are playing out differently.

I am having appointment after appointment booked with… the new Head of the Wasser Pain Clinic? Dr. Peng! We go way back! He’s amazing! Very different from Dr. Gordon! Will this be permanent? Nobody knows yet.

What you don’t seem to understand, is that Dr. Gordon was always cordial to me. Was that because my husband was there? I don’t know. But he was the first person to listen to me. So I can’t throw him under the bus for a game of telephone. The first person to say he assaulted me, absolutely. I don’ t think he’s not capable of it. I just don’t lose my mind over non-verified conjecture. We are talking about a fifteen year relationship, here.

Anyway, moving forward, if anyone could show anyone else some compassion for losing their long term doctor, not being able to access care, that would be great. I sat here for three months not being able to sit up for more than fifteen minutes most days because my pain was so bad, and I couldn’t arrange to see anyone as he went on leave right before my appointment. If I sat up too long, I’d start puking.

I think if Dr. Peng is truly taking over, things will look completely different at Wasser, it will be like a breath of fresh air. The man is a genius! He is very strict, though. Doesn’ t like fatties. He treated me so differently this time around when I was skinny. 🙄 my only complaint.

I’m going to go process this some more. (Cry) I really only have to muddle through until April, when my appointment with the EDS clinic happens. I’m expecting big miracles from them!

 

 

Hang Head, Feel Shame.

I have been so neglectful of keeping you updated, I really should be ashamed of myself. However, I have experienced a very disruptive two weeks, and I am merely catching up now.

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Firstly, today is my 47th birthday. (Cheers, applause) I take birthdays pretty darn seriously. I always have. Partly, because it gives me an excuse for self-care, which is not something I allow myself on a regular basis, although I am getting much better. I tend to celebrate myself for a week or a month. Depending. I have never celebrated my birthday with a party as an adult. I only had a couple of parties as a kid, then we had the family parties where we celebrated everyone’s birthday that month. In my 20s, we were too poor and I was always working, then babies and now I’m eating so funny, and I can never get anyone together. The banking industry has its year-end on October 31, so most of my friends were really busy these past two weeks to a month. Including my husband. I hope he starts coming to bed before I’m on my last leg now!

Enough of that whining, Sephora started their Rouge Sale this morning, so I saved up for ages! Bought tons of goodies! Yay! Toys!

It seems my Botox kicked in on Monday sometime. So I’m feeling much better. I need to be very careful and ensure I lie down, avoid stress, eat properly, relax, rest, but as long as I take care I have a lot of improvement. I’m excited for Christmas!

It seems our son may not have autism. He was evaluated with the school psychologist, and while he presents as autistic, he is very anxious and has some serious learning disabilities we are trying to negotiate. They involve information processing and executive function. Once these are rectified, he may do just fine, and the autistic appearance will hopefully fall away. If it doesn’t, then he is autistic and we have more to work on.

Still having trouble with daughter attending school regularly. Her anxiety is just overwhelming.

So that’s what has been occupying my day to day. Both kids have needed more time from me, so I’ve been there for them. I’m tired today. Mellow. This afternoon cries for a nap.

I did have some fun with Halloween costumes.

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Beware the Rainbow Kitty!

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Who’s the cutest zebra you’ve ever seen? 😛

Hope you had a great Halloween!!!

Here’s hoping things get back to ‘normal’ lol!

💜

 

Botox Shots

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I had my needles for my migraines on Monday, and it was an experience. My appointment was scheduled for 9:30, but we weren’t seen until 11. Around 10:15 is when I put my head down in my lap, and 10:30 is when I burst into tears.  I just can’t sit up that long. So they let me into a room to lie down, but it only had a dental chair. So I sat in it and dangled my head over the edge.

The doctor came in and he remembered me, but couldn’t place me, which is understandable. He believes anything over 200 iu of Botox in the body at any time is wasted, so my 600 of body iu was a total waste. At this point, I’m coping well without it. My back hurts like a demon, my pubic bone is not bothering me as much, though. I am better at taking my medicine.

I had some relief from head pain, as they also inject you with lidocaine, but the back of my head still aches. It’s really tough to stay cheery.

I have confirmed I have a referral to both a gastroenterologist and a neurologist. So there will be investigation. I am hoping for some relief with the Botox. I need to relax. My husband called on the cell this morning and I had to yell to be heard. It made my head hurt.

It seems as if this doctor will be running the clinic for the time being. I am to book for my regular interval, 9 weeks, but they aren’t set up that far yet.

I have purchased a bunch of new clothes, as my weight has stabilized, it seems. I have day pajamas and night pajamas. The Gap has some super soft knits if you know or are some people with SPD.  I’ve only seen the women’s clothes, as that’s all I’ve looked for. I had my nice pajamas on, as I’m walking up to the door, my husband comments that my pants are saggy in the butt again. Dammit!  They are too big, meaning everything is too big. On the bottom anyway. Maybe my stomach just isn’t bloated. 🤣

At the moment, I need to ensure I lie down often. Rest. Things take hours. But I can avoid these headaches. Neckaches. Which is from being tense from the pain, i think. My face usually hurts regardless.

I’m still sleeping a lot. I’m trying to reach out more to people. This is a rough week. Husband is working on year end. The kids are restless. Anxiety is up.

So, I wait.

💜

16 Years!

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It’s hard to believe, but we were married 16 years ago today! We still seem to like each other! 🤣 I know I like him, anyway!

He really is everything to me. He is everything fun in my life. We met on Halloween, 19 years ago. I feel both like I’ve known him forever, and I met him yesterday. Do you know what it’s like when you meet someone destined to be your family? He is my family. We do have two babies. Well, I was pregnant with one of those babies when we got married. I was told I couldn’t conceive, and we should start trying, so we could begin IVF right after the wedding…

Tonight will be a quiet night at home. He is exhausted, I am essentially bedridden, due to my chronic illness. That’s okay, we are homebodies. Restaurants are out, he has potentially fatal allergies, as do I. I have gastroparesis and the FODMAP diet makes eating out complicated.

He is exhausted from work, and I’m pretty hopped up on drugs due to my neck and head hurting so much. Although, Monday I’m going for migraine BOTOX injections. I am to talk to this doc about a neurologist. I’m starting to have fantasies about kidnapping a neurologist, forcing them to treat me, so something needs to happen soon.

Have a great evening!

So. Much. Pain

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My head and neck are absolutely killing me today. My face hurts. My joints hurt. My elbows and wrists hurt. No amount of medication or rub on medication has been working. I’ve spent the day lying in the dark watching Netflix. My daughter had trouble attending school today (that’s a whole other thing) but she came and sat with me while we watched some bad horror for a bit this morning. We don’t usually, as I don’t want her to be associating reward with staying home.

I’m not certain on next steps. I may have to just go to the hospital. This pain is wearing me down. I’m eating more chocolate than usual, which I often do when I want to be sleeping. It helps keep me awake. I want to stop, but I may sleep full time. I see a doctor on Monday for migraine BOTOX. Can I coax a few needles to the back of my head? I’m also to ask about a neurologist.

Still seems like a long time right now.

💜