It's been a long time since I was here but there has been alot happening but mainly a huge pain increase over the past 3 months
Lots to cover so get a coffee if you want to continue
Thanksgiving / Xmas and New Year Hog Hunt
For Thanksgiving my Dad came over from Oz for a couple of weeks, Jay came up from NV and also Doreen and her husband visited for a couple of days. So a busy time in the kitchen but a KMM Roast Turkey feast was had! Plus this year Alan arranged to get a really fresh organic turkey from our butcher - best I've ever cooked. Tasted totally amazing
After TG Alan went back down to NV for a while and whilst he was away , after he asked a few times over the year, I did his Xmas present and I am back to shaving the side of my head again. Crazy lady is back !
Which is definitely what's been happening. Since returning from our Iceland/y'UK trip , my face pain has increased tenfold. More severe and harder to control. Roll on Jan 30 '24 and the appointment in Louisville ! Also the Trigeminal Neuralgia medication is causing more memory loss, behavior changes plus I find it difficult to hold a conversation and string a sentence together as I forget the appropriate words So it has been extremely hard for me but mainly Alan as this drug has really altered my brain. drug induced dementia kind of thing.
Dakota
On December 13th my amazing Dakota died and sadly not a peaceful death for her. Which is still really hard to get over. (in detail , so skip if you don't want to know) For the past few years her arthritis has been getting worse but stable.
Over Thanksgiving she had suffered a big scare at night, whilst in the corral, and was freaked and as horses do panic and try to flee. Naturally this cause extreme pain for her and for several weeks she was on increased pain meds as she could hardly walk. At the beginning of December I had bought her some leg wraps for extra support on her ankles/knees and tendons which helped a little and slowly was able to walk a small amount.
On Dec 13 she had slipped on some ice, fell hard and bashed her head on the rails going down, cut herself and it looked like she convulsed and suffogated because she could not get up due to the recent injury . I went down with her porridge and found her
Alan had returned home from his trip to NV half an hour before and i ended up dashing back up to the house and I collapsed in grief and shock
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So glad Alan was home , as the next part he took over. Getting Dakota out of the corral.
Using the JCB and forks . He also took Dakota down the canyon for me, as my decision had instantly changed on her resting place. Originally I have always wanted to bury her. But as we were not prepared for her sudden departure, there was no way of digging a huge grave in December and at dusk. So I gave her back to nature . Alan then spent 2.5hrs very slowly and crawling taking her down to near on the bottom of the canyon and making sure she was safe all the way down and placed her under a tree (it is now pitch black and the fog had come in. (plus no phone signal here at the ranch) So i'm in a right state of grief plus worry
Champ called for her all night and for the next week, it was wrenching and felt so bad so him . They had been side by side every day since birth . (Still trying today to get him adapted to being with Richie and Eddie so that he;s not alone)
She and I have been together daily for 20+yrs and the biggest bond I've ever experienced and I cannot stop crying over her. She didn't deserve to go that way at all. She was an amazing horse.
Xmas
It was a very quiet one - Jay came back up again for 2-3 weeks.
Again totally spoilt - an amazing dressing gown, a new flag for my bouldery, underwear but the mind blowing gift is a huge Monet - dye printed and framed for the bathroom (as i had a small 8x10 one that i printed off instead. My favorite piece - "The Lily Pond"
(sadly the frame was damaged due to carrier plus a piece of card was stuck and visible at the top - the piece is a sealed frame - so a replacement was sent - this time the frame had more damage again due to carrier. This time it was option of replacement or money back . I didnt want 3 Monet's all the same so money back and I have 2 Monet's- one in the bathroom and one in the living room area. Alan had repaired and patched up as much as he could and they look good.)
No visitors this year so a really quiet time
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Altho on 26th Dec we had a video chat with Ana Dan and they gave us the news we knew would be coming soon... they're expecting
So out with my crochet hooks and baby yarn time woohoo
On Jan 30th Alan and Jay went on a trip for a week together - a mini-vacay to Georgia. Alan had been invited to a Hog Hunt and Jay could go too. An amazing offer and I had no qualms at all about it. We don't do NYE anyway They had an brilliant time. Jay got his first hog the 2nd day after first day was target practice. Next day Alan got a White Tail and both on 3rd day they got a hog each. So they returned with alot of meat! Jay said it's the happiest that he can remember too. Bonus!
The next day I took 4 coolers of meat to our butcher who did the rest! Plus keep all the bones too - lucky puppies
Alan went away again for a couple of weeks and after a couple of days of coming home we started talking about getting a car. As all of our main driving vehicles are trucks and I have my jeep because I have puppies. So decision time. A Cadillac or my ultimate I've always wanted but never any for sale car that I've wanted since I passed my test when I was 17 - an Audi Quattro - the RS7 (definitely didn't wan't a cadillac) So after some back and forth. haggling especially because it's white - loathe white vehicles - so we will be getting it wrapped in the spring. A few days before the road trip to Kentucky, we have a Quattro! It's bloody spectacular - once you switch all the computer/buttons/assist buttons off and you can be the driver that is. I really hate all of that stuff.
Here's Alan bringing home our Quattro
Jan 27 Jay came back to the ranch again to look after my indoor puppies and outdoor puppies for the week as we had a very long road trip. We had to drive and I'm not allowed to fly especially after the result of last August
Alan and I left on the 28th and head to Louisville Kentucky and the Norton Hospital to see the neurologist regarding any possible help with my Trigeminal Neuralgia and constant facepain
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We set off around 830am ish and got to Columbia at 945 and drove up to a steak and shake place JUST before they closed and got something to eat before checking into the motel next door. Which had 1 queen and one pull out sofa which was perfect for me to build my sleep upright camp.
the drive was empty but some pretty scenery at times - but it saved looking at concrete jungle all the way. Once we got close to St Louis tho, the scenery turned to concrete, smog+ traffic and the headless chickens in vehicles got heavier
A 12 hour drive the first day - I did the last hour. It seems I slept about half of this day , I just kept dropping off.
It was cool driving thru states I can now put a pin into - Nebraska, Missouri, Illinois and Kansas but geez it was alot of miles - 1,193 there and 1,212 on the way back
Had a few problems with the Quattro - not the car but the computer driver assist crap. One problem nearly caused an accident. Alan was overtaking a vehicle, the car's camera read a traffic sign, thought it read 45 and instantly slowed the car down from 80mph. The 18 wheeler behind us had to fishtail to avoid us and Alan luckily sped it back up to 80
It was scary how this car can take over. (next morning this was all deactivated and we are allowed to drive it manually - geez) now it's far more fun to drive. I have to make sure all screen's are off, I refuse to connect my phone - far too dangerous with alerts, screens and basically your phone on display - um no , I'm driving and def need to concentrate thankyou
Next morning we had to find somewhere for breakfast. Alan needed fuel . We stopped in a cute area of Columbia. Reminded us of the artie area of FoCo - same atmosphere and stores. I needed coffee so I went off and found that altho the hippydippy style I do not like.. I mean rosemary and brown sugar syrup.. what the smeg - it wasn't nice but I needed of shots caffeine and Alan found a diner for a breakfast. They had zero gluten free so no toast for me. Why doesn't this country have the mega GF options like Europe and Iceland.
It's a real dietary / medical problem not an internet fad like vegan with chemical alternatives and that's everywhere - ugh - rant over
Anyhoo - onto Kentucky - it was now mostly main highways and interstates. Not too much to talkabout until we hit St. Louis. By the time we got to the bridge there was a thick fog / fog all around, so no clear view of the city skyline nor the Gateway Arch as we went over the Mississppi River
The rest of the journey was quiet scenery of fields, hedgerows and the marshland/swamps . It must look stunning in spring/summer when all of the trees are in full leaf. Again I kept dropping off - no clue why i was sleeping so much , properly low salt as food was not first on my to-do list as quite apprehensive
But I did manage to drive and relieve Alan for the last hour / 100 miles and I drove into and over the Ohio River to Louisville
The hotel was ok, , the sleeping camp for me wasn't as good as the one night before but for 2 nights I made it work - but not my main concern really, far too much going on in my mind and as long as there's coffee s'all good
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The appointment
Now. I had this hunch that even tho I was referred for Trigeminal Neuralgia and looking for help / surgery after 4.5yrs of pain and suffering and a confirmed diagnosis, the hunch was that they were going to see me for continuous headaches after confirming via phone what the reference was for etc
My hunch was right. The staff had no idea I was already diagnosed and looking for surgery options. I had researched Dr Whitt intensively before the appointment she is NOT a neurologist and the source of my hunch.
Dr Whitt came in after the nurse had done all my vitals and off we went into my symptoms , which I stopped and explained. She said that she had been updated and that was the road we'd take as we'd driven for 2 days. She had already paged a neurosurgeon to see if he had time to sit and discuss TN and surgery with us. I was asked for my disc and images of my latest MRI scan that I had done in September at my request due to the pain increase after 5 flights in August , which I had bought with me and they copied them onto their database
So we spent about 2hrs with her discussing pain and she gave me a few more tests and then discussed getting me off of the brain med I am currently on as this is definitely the cause of my memory loss and behavior changes and lets try other medications that would benefit more as she wanted to treat me for migraines instead. Starting with an extreme medication/vaccination for pain and is TN related. To which we agreed as I have to come off this medication asap regardless. It is designed by this hospital ( as it is a neuroscience one afterall - Norton Neuroscience Institute
She left to get the injections - like an epi-pen. 3 months for free. They cost roughly $1,000 each so 3 samples were amazing. Then a video-appointment in May to discuss the results and the next steps. She also explained that Dr Tom Yao - just known as yao, was available and would like to help and talk with us about my TN and surgery.
Therefore we had to check out then back in again at the desk as we were seeing 2 separate doctors - ( so 2 separate invoices and reports)
Dr Yao was awesome. He loaded up my MRI and talked about my TN in detail so we could actually see and understand what my brain is doing
My TN is not bad enough for surgery. I have had 3 attacks of the typical TN pain - electric shocks all over my face constantly for a week at a time.. that is TN pain. He did confirm I do have Trigeminal Neuralgia but they are not hooked or connected to the Superior Cerebellar Artery (CSA) they only touch and brush each other
I do not need surgery.
BUT - he will do it if I asked. If my life is so bad , I can't go on or take anymore. By The way - TN is also known as the Suicide Disease and this is why he said he offered do it if I asked
At this point I'm really struggling with facepain and not comprehending too much
Now - the surgery - he asked our knowledge on the procedure. I responded. 15 minute, go in behind the ear and insert a Teflon patch in-between the TN nerve and the SCA and go home in a few hours
Not quite, close but not close enough to the ear. Yao then filled n the rest which touch us by surprise a tad. He drills two skull windows each behind the ear and he goes down through the window to the brain stem - hold the phone - what! that made me wobble and sit down. That woke the brain cells up I can tell you.
Yao agrees with Dr Whitt and lets do the pain management of the drug "Aimovig" (I'm on 140mg so its times 2 jabs into thigh
The enzymes only target the TN nerves - so shall see - it can take up to 2 months to notice any difference.
So it's still sleep sitting up and all the associated problems i have FP related. He also spent 2hrs with us
How amazing is this place.
So what am I suffering with - in Sept 19 2019 my face hurting 24-7 plus extreme pulsing pain behind both eyes and nose
An "Idiopathic 24-7 Facial Migraine"
After the appointment
Before we arrived in Louisville, I had been chatting with a friend of mine - Shelly, who lives 90miles away from Norton Hospital. We've known each other for 20+ years , since MySpace started and we were part of a Depeche Mode Fan Group. We've been friends ever since with annual birthday gifts but we have never spoken or even met. Well after the appointment we drove up to see her. She was working - Rafferty's in Florence, KY
we left the hospital around 5.30 and after we checked out and got sorted we headed out at 7pm to see her
It took Alan under an hour!
It was amazing meeting her finally , we had food (which she covered - her treat) and a few drinks. Brilliant evening
Alan was so surprised that she is also into Siouxsie and the Banshees but mainly The Damned and is fluent!
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I slept soon as we left the parking lot! long day and no painbreak nap
Heading home
We left Louisville the next day and started the trip home and impromptu call to Dori and we'd be going home via Fort Riley and staying the night with her and that would leave 9hrs left to drive home through Kansas and Colorado
We also spent breakfast with Alan's friend and Dori's ex-Sgt too and a little cafe - that gave me a chuckle or 2
It felt longer driving back home but boy was it good to get back. Missed my puppies so much - and i had definitely met my people tolerance limit too - its was stretched and fraying! The puppies had really missed me/us and some separation anxiety with them both
First thing I did was go out with them and did porridge o'clock and go see the horses too
Now back to normality and ranch-life. Firstly getting Alan all sorted out for food /meals and laundry for a 3 week stint in Tonopah NV as a drill program was starting within the week - very exciting and finally its happening - as this program was stopped week before last summer.
So now it's 3 quiet weeks now of me and my puppies, ranch chores, snow and calm now the hospital trip is done . Shall see if this works on this new TN journey
'K , thats it, for now, but i think that's enough 😂
Have a good day peeps ♥
oh - P.S
before Kentucky I had my 3rd Glaucoma test and my right eye has gotten worse and left eye has started so now on drops , cataracts are starting to appear and also dentist trip for 5 fillings and 2 crowns done in a week!
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