Lived Experience Forum

[ClockFace]

TW: Medical Procedure Details

I was never one for the whole dear diary person, writing something that no one will read I never understood. I have it in my head already whats the purpose. Dont get me  wrong, Im not knocking it, it works for people but this forum thing seems to add some meaning/purpose behind what I write.

Those that read my dribble would know I suffer from a few too many psychiatric issues and they are all out and running a muck which has been fun. A lot of that has to do with my sisters mental health issues that have come one quite rapidly. Im caring for her, for the life of me I dont know why other than no one else will and my sister has developed an attachment to me and has quite the opposite for our parents.

I would have touched on it in previous posts but I have a number of non-psychiatric issues. I have a number spinal issues, Scheuermann's Disease, Facet Joint Disease, Osteoarthritis, 3 buldging disc and sacroiliac joint dysfuction. It makes for a lot of pain and Im on 3 different pain management medications, Ive reached the amount my body seems to be able to tolerate without imparement. The good news is that the SI Joint Dysfunction seems to be the primary cause of my pain and I have found a Pain Management specialist who is one of the few that specialises in this, purely by luck. Anyhow, I have had two procedures to test if it was indeed SI Joint Dysfunction and they showed that I did. So, next I was to have Bilateral Radio Frequency Ablation this would basically burn my nerves away which in theory would mean no more pain, which if it worked would be the first time I would be pain free in over 20 years.

That was supposed to happen on the 9th, I got all gowned up, all ready, in the waiting room outside the operating theater, I was next. Now I had been crapping myself all day, I dont normally get nervous over procedures, I have had more than my fair share so they dont really bother me, but this one had massive implications for my life, like it could change my life in every way imaginable but sadly it was not to be. Just as it was to be my turn my surgeon came and as nicely as he could told me that my surgery had been cancelled. The last surgery took much longer than anticipated and the hospital wouldnt allow him anymore time to perform mine.

I was devistated, my family didnt seem to understand why, they didnt get the fact that I was supposed to be pain free and now I wasnt going to be and I didnt know for how much longer. Like I didnt get a new date, I just got not today and we will let you know when. I have since been told that they had been able to get time on the 17th March, but they were waiting to see if they can get anesthesiologist and its only if they can that we can go ahead. Of couse this happens on a long weekend so I am left waiting to see if I can have what I see as life changing surgery.

I also have bladder cancer, which means that quite regularly I have to have a cystoscopy to check for new tumors. The last one I had was not performed correctly and I was in a lot of pain. The way they did them so far is using local anesthetic instead of actually drugging me so I was awake and they didnt allow anytime for the local to work so when the scope went in, I sat bolt upright and groaned. Didnt stop the doctor he kept banging on. So needless to say I complained, severed ties with him and in the process of changing urologist.

If the cystosopy finds a tumor its a second surgery called a TURBT, where they go in and but/burn the tumor out.

The fun thing with all this is you become very mindful of what comes out when you pee. Like you check every time. Especially after a TURBT, but it becomes a ritual more than a habit that you check. Well recently there was blood, I mean not mixed in with the pee but seperate. I had been having stomach pain and overly tired. I had visited my GP and she decided that if it got worse I was to take some blood tests, really bad go to ER. So a trip to ER was had. Didnt get much there, they referred me back to my GP and to get an urgent appointment with my Urologist. Which will be difficult given the above. So, I got to try and get an appointment with a GP, no chance with mine, get a referral to a Urologist and then get an appointment with him.

In total I take 26 different medications daily plus a pain patch I change weekly. I take medication for high blood pressure, reflux, restless legs and as Im allergic to that medication I am on another to deal with the edema it cause. Theres like 8 psych meds, 3 aimed at pain and another one for back spasms which is pretty much a nightly thing and a few others.

Ive written in another post about my paranoia which has come on strong of late, along with hallucinations. The other thing that I deal with is my anxiety its so great I shake, mainly my hands to the point that they were pretty well unuseable. My GP put me on a medication to help control it, over a short period of time that was increased to the maximum dose. Sadly, it turns out that it isnt enough and I still shake. Not nearly as bad, I can do most things but really noticible when having a drink, the cup just shakes. Its frustrating as hell, to not have full control of your body is difficult and I dont know that I will ever get used to it.

I have been trying to get supports around me, SANE Guided Service is on its way, I have my psychologist, Id like a psychiatrist but I have to work out money for that somehow. Three was another program through country wellness connections but when they contacted me due to Easter etc they said they will contact end of April, which doesnt really help. Family wise, my sister was a big support but thats no longer the case, Dad has a lets say antiquated attitude to mental health and my Mum is so self involved that any problem anyone has, somehow turns around to being about her.

I will say life has its fair share of challenges, sometimes they get you down and thats ok but eventually it does turn around. I mean in some areas it still hasnt for me, in some areas it has. Keep positive about what you can.

[tyme]

I sure hope things turn for the better soon @ClockFace . You are such a fighter.

[Historylover]

That was a serious read, @ClockFace. I am so sorry that you have had to go through so much. Words fail me for more than that, except to say that I hope there are better times ahead for you. It's certainly your turn.