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.

💜

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.

💜

I’m a 10 out of 10

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You know you’re gearing up for a migraine when you lecture a stranger in your dream for wearing too much perfume. I even gave her the speech on the proper distance you should be from someone before you first detect it. I was quite thorough. The proper distance, by the way, is conversational distance. That is where you should first detect someone else’s fragrance.  None of this where they walk into the establishment and you can taste it before you even see the person nonsense.

Anyway, I tried to play with makeup yesterday, but the migraine started creeping up. I continued, because it had been over a week! I played for a bit, then finally had a nap. Slept from 1 pm until 8:30 pm when my husband came to bed. I was so restless and uncomfortable.  I couldn’t settle my stomach. I didn’t have anything solid yesterday except for oatmeal for breakfast.

I couldn’t sleep last night, I was just awake, restless. I keep trying. I’d dissolve into tears every once in a while, the pain was so bad, and then it would dissipate. Then ramp up. Ugh. I would lie there, just trying to be still, trying to distract myself. Reading cat memes. Reading long form news stories.

I was supposed to have Botox injections for migraine and for pain management on August 22-ish.  Since then the migraines are back, I’ve had my first period in fourteen years, (Mirena) and I’m wracked with pain.

I have not heard back from the pain clinic. Realistically, it’s been 3 weeks? I think? It feels like an eternity. I feel like most of the pain right now is in the back of my head, whatever we are dealing with there. One month until my neurologist appointment.

It’s also been close enough to a month that I believe it is time to start harassing the EDS clinic again. I think we shall do those things, see where that leads us.

I’m interested to see if I have a period next month. The question: was the Botox contributing to my lack of menses? How? Dunno. Correlation does not equal causation yeah yeah. We will see.

Let’s tackle one thing at a time. I will certainly bring it up at the EDS clinic, I don’t know if they have a GYN on staff, but I will ask for a referral straight away, as well as for a gastroenterologist, as that doesn’t seem to be happening either.

Happily, however, my stomach seems to have settled and I no longer feel like throwing up my toenails. Yay Gravol!

Short term, I don’t seem to be sleepy. Or I am already dead. I occasionally find a comfy spot and all is happy for a while, so things aren’t terrible. I’m going to focus on medicating myself today, listening to podcasts, and maybe tv if I can. Tonight I’m definitely taking a sleeping pill, and back to that if I need to.

I was thinking of a warm bath, but moving…

I can do a month! Right?

And however long the EDS clinic takes…

💜

 

 

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. 😊.