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Recovery Period

So on Sunday I had begun my self isolation, and I hated every second of it. My mental health was incredibly low, and I never got anything done as my schedule was an absolute mess.

On Thursday I had my surgery and it went well. They didn’t have to cut behind my eardrum which was brilliant and meant less stitches. I woke up in the recovery room and was in so little pain that I went back to sleep 😂

Not the case now of course! I’m in a fair bit of pain which isn’t affected by the painkillers, my ear is bleeding and the left side of my mouth is numb. Living with chronic pain though, I’m fairly unbothered and just living with it as I know it’s only temporary. Oh! I’m also pretty deaf in that ear but that was the one thing I was expecting the most.

I have a post-op appointment in 3 weeks which I’m a little nervous about. I had to have this op because I was in the 1% that had a perforation from a grommet, and then I was also in an even lower percentage for a cholesteatoma. There’s a 3% chance of this op being unsuccessful.

Though of course I’m not spending much time worrying. I’m just cautious about celebrating early about closing a 16 year chapter. And I doubt it’ll be immediately obvious yet in terms of whether the op was unsuccessful. After all, last time things looked successful and good for a year and then it wasn’t. Then it stayed stable for 4 years and then it didn’t. It’s just in the back of my mind.

#ChronicPain #Surgery #Operation #HearingLoss #tympanoplasty #ent #MentalHealth

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Expect the unexpected

Two weeks ago, I had a call asking to arrange pre-op. I didn’t think much of it at the time, other than it was a bit early. And then last week I had a call giving me a date for surgery, which is in 2 weeks time.

It’s caused a mixed of emotions. I’m grateful that I’m getting it over with sooner rather than later, but confused as to how I skipped the 6-month+ waiting list. Having it now is better than in the summer though, as I’m typically prone to infections more in the winter than the summer (I haven’t had a single winter without an infection in 10 years now).

In other news, last week I was urgently referred to CMHT, and then today told my case wasn’t being taken on as I’m already under another service. I knew from the tone of voice the person who called me today had what the news was going to be.

In the last piece of news, I filled in the pre-assessment forms for dyspraxia, and have a meeting to discuss it in two weeks. The more I read about it, the less I think I have it, but at the same time I definitely have some difficulties that overlap dyspraxia symptoms.

#Dyspraxia #MentalHealth #Depression #Surgery #Operation #ent #CMHT

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A Life Update - Where Have I Been #CheckInWithMe

I was going to start this off by apologizing for not posting and for not being as active, but something I say to others and that I believe in very strongly, is that health should come first. And that’s what I had to do for the last week. I took some major steps to (hopefully) sending my health down the right path.

As some of y’all know, my pressure headaches and neck and back pain have been increasing for a short while now. They ended up getting so bad that I couldn’t lay down for very long without the pain getting unbearable (this is a normal symptom of a major high pressure headache). So the Thursday before last I was directly admitted to neurosurgery and plans for a shunt was made.

However, the next morning, they came back to me and said I was a candidate for Venus Sinus Stenting, which is much less invasive and could also help me drain csf fluid from my head. So for the next four days they helped manage my pain, prep me for surgery using specific medications, and introduce me to the team that was going to operate on me.

Tuesday late afternoon, the procedure happened on my right side. I honestly can’t remember all the fancy scientific names, but basically they stuck a small metal tube in a vein in my head to hold it more open and to allow more cerebral spinal fluid to be drained.

As of right now, I am home, still recovering, but excited to see how much this can help me in the long run!

#stent #IIH #iihwarrior #IdiopathicIntracranialHypertension #IntracranialHypertension #IH #CheckInWithMe #LifeUpdate #Hospital #hospitalstay #Surgery #Headache #Operation

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The Waiting Game

My appointment just got cancelled again due to COVID, it’s the fourth time this has happened.

I have a rare bone disease and I had an operation in 2019 on my right forearm. Due to administrative error I never got to see my surgeon post surgery. In fact I got removed from the hospital system even though I am a life long patient.

It took me months to get a referral in and an appointment rescheduled, and then the first wave of COVID hit and everything was cancelled. The appointment has then been rescheduled twice more both of which got cancelled last minute or made into a Telehealth call (which doesn’t suit my case as my surgeon needs to physically examine me to figure out what to do next)

I truely don’t mind waiting if it’s for the safety of everyone. Only two things bother me...

1. The operation didn’t go great and my arm has been causing me chronic pain since then and has been effecting my mobility to do day to day things

2. This waiting period doesn’t even go towards the wait list waiting period, so even once I get on the wait list for an operation I’ll have to wait up to a year before it gets done.

I’ve already waited one year, eight months and two weeks, how much longer will I have to be patient for??? #HereditaryMultipleOsteochondromas #hMe #MHE #bonedisorder #RareDisease #Hospital #Operation


#Operation tomorrow

I have an operation tomorrow and I’ve gotten quite nervous about it. It’s a bowel resection and I trust my surgeon so why so nervous? Any other Christians reading this, would you pray for me? The nervousness is almost unbearable


Stranger danger

I always have to think of something bold to title an otherwise boring post 😂 it’s a habit I can’t give up.

Got a completely unexpected call an hour into my shift at #Work today to say that an #Operation I’ve been waiting for since January is next month. Kinda nervous but glad to be getting it out of the way.


Feeling sad, upset and emotional today. #CheckInWithMe

Having a low day today, I’m upset about something, but my mind can’t figure out why. It could be because I’m exhausted. Haven’t slept well in days, weeks even. It could be because my operation failed within 3 days, so my recovery feels like it’s for nothing. It could be because I’m sick of having this endless flare up. The one that every coping method I have, isn’t working at all. It could be everything combined.

I want to be the one most people see. The positive, smiley one. The one that doesn’t show the agony she’s in, and never complains. The one that’s positive all the time, and helps others before herself, no matter what she faces. But the truth is, when I’m not at work, college or with friends, I’m a moody bitch. I’m in bed, in tears, trying to hide them from the rest of the family because I want no sympathy. The one that’s angry, mad, annoyed, fearful of what’s to come next. I’m not always happy. That’s the truth.

#Osteoarthritis #CerebralPalsy #Hemiplegia #ChronicPain #DDH #Upset #sad #SleepDeprivation #Operation #ChronicIllness #Recovery #Bedrest #FeelingAlone #Feelingoverwhelmed #feelingscared #Arthritis


Operation Day

Today’s the day I have my operations. I am anxious so anxious but the nurse gave me some relaxant that is making is sleepy time. So far I am happy I have not had a major meltdown.
#Anxiety #Depression #Operation