Move over MS...introducing Gastroparesis!

You read right, a new diagnosis has hit the block and it's called Gastroparesis. 

Never heard of it? Me neither. But apparently about 125 000 Australians have it (about 25 000 Australians live with Multiple Sclerosis). Causes? Can be Diabetes, post-surgery or idiopathic (meaning 'fuck knows'). Guess which category I fall into? Yup, the last one. Though there are connections to certain nervous system and autoimmune conditions...MS. BOO!!!

So what does Gastroparesis mean? It means a paralysed or partially paralysed stomach. Food takes a long time to enter the small intestines because the muscle mechanisms are being lazy pricks. The result is a bunch of fun stuff like nausea, early satiety (feeling full quickly), vomiting (which can lead to dehydration, malnutrition, unintentional weight loss), bloating, upper abdominal pain, reduced appetite (which can lead to unintentional weight loss, malnutrition) and general feeling awful because your guts hate you.

For me...as you know, I have been feeling sick from food for a good 10 months, probably more now I understand the symptoms of Gastroparesis. I was diagnosed with reflux/GORD (which I didn't even realise I had) after an endoscopy in October last year. Reflux can be a secondary pain in the gut because that stomach isn't doing much with the food...so it's like just sitting there being a right old pain. More to come on this...

How is this fucker diagnosed? Well...I had to eat some radioactive stuff for a Gastric Emptying Study (GES). They usually use egg but I let them know I only eat egg in cake. And I was not allowed to have cake. The 'alternative' was soy textured protein or something. It was ugly and brown and not nice to eat (but way better than having to eat egg). I had to eat it in a 'sandwich', so it was representative of a 'normal' size meal. I had gloves on and a small glass of water to get it down. Once I ate it, I had to lay under a scanner and it would show up the radioactive particles on a screen. This would be 'filmed' for 1 minute, every 15 minutes over a 2 hour period. So even though the chick couldn't tell me anything, I could see it for myself...the 'food' was taking a LONG time to exit my stomach. Later that day the report came back and BOOM "Comment: Severe Gastroparesis". Round of applause. 

Before the GES, I had already convinced myself I had it. Everything I read about the symptoms matched so well with how I was feeling. Yeah, it's not the C word but it's a huge inconvenience on the lifestyle I like (i.e Food eating). People who have severe symptoms, like vomiting, live a life of a liquid diet and are tube or peg fed. It sounds dire, right? How would I be able to travel with this? How can we 'go out' and eat at a restaurant or cafe? Well we don't. I no longer drink alcohol. It's not good for motility and it's not good for the GORD either. H2O for me! Even then, I cant even have fancy water with bubbles because that irritates it. 

I have read diet is one way to manage this beast. I have been 'trying' that, blindly, because you get this information about what's up and then no one helps you until you live through the excruciating wait to see the specialist. I see the gastroenterologist in a few weeks.

I got this med to try. Domperidone...sounds like the champagne...I fucking wish. I got the script weeeeeeks ago but had been reluctant to try it because it can mess witch you heart. I had to get an ECG to get a baseline because of something to do with QT interval progression (does that make sense to anyone?). I also can't take the PPI I am on for the reflux within 2 hours of the Domperidone because it needs a certain stomach acid to absorb properly. I don't even know if my PPI is helping my relfux. Urgh. 

C H R O N I C   A N Y T H I N G   R E A L L Y   S U C K S ! ! ! 

Anyway, that is that. I also turned 40. I also have a gallstone. I also had my two Pfizer doses. I also have been doing an exec role at work. I also hate the length of 'winter' in this place, and fucking waiting. Waiting for specialists, waiting for pain to go, waiting for holidays to come, waiting for something bad to happen, waiting for something good to happen, waiting for COVID to fuck off.

Damn this vessel!

 Here comes the standard 6 monthly post...

COVID19 - yes, it's still around. In our daily news, in our faces. Lockdowns. Masks. New strains. Vaccinations. And that is all I will say on that. 

So something I did not mention in my last post was that my neurologist thinks my dodgy knee is not MS related. I tried to explain the feelings but he frankly said he does not know what I mean (this was via 'tele conference' aka a phone call). So he suggested I talk to my GP about it. So I did and she had me get an MRI ($300+ thank you very much) and it showed something and something ("Mild degree oedema suprapatella fat pad medial aspect of the patella. Appearances suggesting grade II chondromalacia of the patella apex and medial facet. Chonicity of symptoms raises possibility of patella maltracking) and so was referred to a physiotherapist. Went to physio 4 out of the 5 sessions (as part of an Enhanced Primary Care Program). It made no difference. I wasn't able to do all the exercise effectively at home, needed to buy a step, needed to buy this and that (P.S if you know what my knee issue is about or know an OUTSTANDING physio in the ACT hit me up!), but one reason that I did not commit was because I also had been feeling sick in the stomach for months and so had an endoscopy!

FFS. Can I please have a break?

Apparently I have chronic inflammation of my oesophagus, focal intestinal metaplasia (am on meds for this now) and mild reactive gastropathy (is this the same as mild reflux disease, because I have that too?). I dunno. The gastroenterologist asked me if I get reflux and when I asked what it feels like I could not relate to any of what she described to me. I do not get an acidy taste I just get stomach pain that feels like I am hungry but I am not. I also get a tight band feeling at the top of my stomach under my ribs.

So after seeing my GP for the meds for the acid stuff (focal intestinal metaplasia), they were not doing much so went back and got different meds. Meanwhile, I am referred to see the dietician who works out of the GP surgery once a week on Thursdays. This takes weeks to get an appointment. So I finally see her and she asks me 'what's up?'. I try to explain but as you can read from above, I am lost. It feels like I have been told THINGS, then that's it? It's up to me to navigate? I asked her if she has access to my referral (which at least hold some kind of explanation). Then I ask if she has access to the gastroenterologist notes. She appears extremely unprepared. I search through the photos on my phone to try and find the fucking endoscopy report that I forwarded to some of you sickos who wanted to see down my throat...I find it. She eventually finds something. She tells me the gastroenterologist wants me to try the low FODMAP diet - well fuck me dead! First time I am hearing this...6 weeks after the endoscopy. I express this, "Oh okay. I had no idea". I forgot to mention that they didn't feed me after the procedure too! Anyway, whatever.

The low FODMAP diet is typically for those with IBS, which I do not have - I do not run to the bathroom, I do not get relief from going to the bathroom, my symptoms are not typical IBS just as my symptoms are not typical of reflux. However my symptoms suggest there is some kind of food intolerance or trigger that makes me feel sick...maybe? I do not entirely understand - are you getting that vibe from me? 

Oh ha! I forgot to mention that I have 'high' cholesterol. The GP suggested I stop eating any deep fried foods, pastries etc, and try 'really hard'. I wanted to laugh, but I just held a face of annoyance. Because, I don't eat that stuff. The most I have eaten of that stuff was about a week or so ago when we were on 'holiday' (2 x COVID tests included) in SA...I had a schnitty, hot chips, one croissant, oh and I had 3 tater tots at NOLA on New Year's Eve. I am likely averaging 2-3 schnitzels a year. And I *was* using Nutalex. I *was* drinking that Heart Active milk...I say *was* because I can't have those now on the low FODMAP diet. I spoke to the dietician about this too. She wants me to eat more fish...like 3 times a week. But the fish that tastes like fish...tuna (no, no and no), salmon etc. The oily ones. I tried. I can't. I'm sorry. Prawns I can do. More generous than the 2 cherries, or 1.5 tablespoons of watermelon I am 'allowed'...however I had a blood test yesterday to check the gazillion things and it's down, so that is great. I also got a shiny report back on glucose levels, kidney and liver function blah blah blah. 

Day 16 today (dietician said not to start over Christmas or if we were on holidays) of low FODMAP. I know gluten-free bread is fucking gross. I can tell you that much. The pasta ain't as bad. The almond milk is okay, lactose-free is better. I can also tell you it's expensive...I bought an offical approved low FODMAP loaf of bread from Baker's Delight for $5.80 and it was gross.

What I DO know is I have become increasingly frustrated with the health system here. 

I saw an immunologist too. That was a waste. My GP was concerned about some bloods I got. Turns out it's due to my MS meds. Something about something was too high but due to my meds, it needs to go somewhere and it went there so it's all good. We covered my current health situation holistically. He mentioned low FODMAP as a possibility. At the time, I thought 'fuck that', and now I am fucking doing it. Had a raspberry friand the other week. Is it low FODMAP? I dunno. I have made them before and they have almond meal in them and are gluten-free (although I am not celiac, a lot of low fodmap stuff steers away from wheat...e.g. can eat 1 cup of cooked gluten-free pasta vs. 1/2 cup of your regular 99c a pack homebrand pasta).

Oh but get this, shouldn't eat tomatoes due to reflux, but can eat as many common tomatoes as I can according to the low FODMAP diet. I will take the latter and eat tomatoes. Or am I just asking for trouble still?

Do I feel better? I think it's too early to tell. I have kept a food diary. I had 2-3 nights at the start where I had my usual pain at night. Then nothing. And that is even after a night of drinking quite a bit (1 beer, 3 cocktails, 3 wines and a sneaky schnapps). The dietician reckons tolerances can build up over days or you might feel something within hours. I see her about halfway through, 3 weeks into the diet. 70% of people feel better, so the odds aren't bad. Eating out is a bitch. Eating at home is half a bitch. And then after that good stint, weird pain again. I have had more pain than not since starting. 

I also saw a dermatologist about this thing I get on my face. I get these spots, not pimples (perioral dermatitis). I went on some low dose antibiotics a few years ago, then it came back so got on the antibiotics again. Did nothing. Saw this dermatologist. She was late. My appointment was at 8am. I arrived at 7:50am. She saw me at 8:15am. $255 later I walk out with two topical prescriptions that cost me close to $80. They don't really do anything and once of them is open, it lasts only 3 months. There's not anything I can do. It's just my body doing stupid shit again. 

In the past 6 months I have spent a lot on my health. It's annoying. What is also annoying is I can't see both the physio and the dietician on a healthcare plan. If they were MS related I could see up to 5 or 6 (can't remember exact amount) allied health professionals. Does that just seem stupid? Maybe I expect too much. Tell me what you think.

In other big news, I transferred to a high school. Hallelujah! Sorry but primary is NOT for Sascha. One of the teachers said to me on my last day " Yeah, not everyone can do primary". She's a bit of a cow (luckily the rest if the staff were AMAZING). It's not that I can't do it, I DID do it for fuck's sake. People said "But you're doing such a great job!". Yes, that may be because I am trying way too hard (because I was), and that was fucking exhausting. I do not like it. I do not like the content. I do not like the age of the students I teach - I do not relate. I do not like singing songs about numbers, letters, days of the week. I do not know kid's movies. I do not have kids. I do not want kids. 

I am now at a school that I feel at home in. I am thriving! I love it. Although I was excitedly given the task of getting the garden up and running for a 'life skills' class...that is not so much me. But with a big helping hand from my super supportive colleagues, there is a garden. I visited the garden yesterday...let's say, nothing to see here, moving on...😅

And to finish off:

- In April I will be 40

- Change the date

- Good riddance Trump 

Can we fast forward?

Apparently I promised a post last night after a homemade espresso martini, 2 red wines and a White Russian (with milk, not cream). So here it is...and it's long, so strap in...

Today is the final day of my favourite season, AUTUMN! And what a great place to be, in the Nation's Capital...M and I wandered the National Arboretum yesterday and it was lovely.

A hell of a lot has happened since my last post - where do I start?

- I got really sick (NOT Mad Sascha sick)
- I was offered (and accepted) a permanent teaching job in a PRIMARY special school
- We were officially posted to the ACT and had a horrendous case manager
- Australia had an unprecedented and HORRIFIC bushfire season
- COVID-19 made its presence known, globally

Then there are the little bits in-between.

In very early November, I became really unwell. It started when I had a trip to Melbourne to catch up with the sis. The weather was a bit nuts and my flight got postponed to a MUCH later time...I somehow managed to get on an earlier flight which was grand! However, Mother Nature had her way and that earlier flight was delayed. After rushing home from work, getting a Shebah to the airport, finding out the flight was delayed, trying not to drink too much, I finally arrived after a pretty bumpy trip. I felt exhausted.

We managed to head out onto Lygon Street for a late night Italian meal - it was delish! The next day I struggled. My fingers hurt. My nails on my fingers hurt. I felt, again, very lethargic, like that next level tired, but not quite MS fatigue tired (that is an outta control tired). But I seemed to soldier on okay.

I had an awful flight home. I was in tears, but not sobbing tears, just quiet ones. I survived with Uncle Valium and Aunty Bubbles in my insides.

The Monday night I developed a fever. I had had my Tysabri infusion that day too. I felt awful. I had no other symptoms except the fever and I felt shit. No sore throat. No cough. No runny nose. No other sickie symptoms. I proper felt sick like I never had before.

I went to the doctors on 5/11, 7/11, 14/11 and 5/12.
I had 7 seperate blood tests from the 5/11 to the 6/12.
I had a chest x-ray.
I had an ultrasound on my abdomen.

I even went to Emergency at some ridiculous early morning hour because I was still experiencing fever 5 days later. It was insane. All I wanted was to feel normal. I just thought to myself, if this is how it's gonna be, then I do not want this.

What was wrong with me? Well there was no definitive answer. And this does not surprise me. I know that in the medical world, all they can tell you is what it is NOT. And even then, nothing is a sure thing.

My chest X-ray showed things...so it was said I may have an 'atypical chest infection'...like, as in pneumonia you say? Well yeah but nah, because remember, I had no other symptoms, no respiratory symptoms. I did have some laboured breathing with reduced lung capacity. WTF!?

Once I gained some improvement, as in no fever, I continued to feel ill. I wasn't hungry. My tummy was sensitive. It was a pain I hadn't experienced before. It wasn't a question of pooing or spewing...it was just feeling sick. This is where I went to see the doc again. I got some kind of blood test to test a maker of some kind and it wasn't the best. So I had several of these blood tests over a few weeks.

I actually experienced a flare up from Mad Sascha. Due to the fever and being so unwell, I experienced some extra MS symptoms...I began to get some pins and needles in my right hand and arm. Luckily these are were only temporary. Nevertheless, they still sucked. These bastards hung around a few days before finally dissipating.

I gradually got better. THANK FUCK. It was honestly the sickest I had ever felt in my life. And that is a big call. If you read my post about how unwell I was after I had my tonsils out, I was pretty darn sick then, but for some reason I viewed that quite differently. That was pain. This was also pain, but I think I had the view that I would defo get better after the tonsils came out (and the rest of the stuff old mate cut out), but when there is no name to what I had this time the impending doom began and I questioned if it would be forever, or even, if this could be the end? Anyone else ever experienced this bizarre quandary?

My GP was amazing. She called me a few times a week to give me the blood test results and simply check in. I miss her.

Funny thing...the day I went into Emergency, I got my job offer! I said yes, even though it was not certain we would be posted to the ACT! I thought, "Hey, I can maybe stay with mum and drive and M will come later" - this did not happen thank goodness because the drive would have near killed me.

Fast forward a few weeks into December and M gets the confirmation we were after - our posting! It was a MAD rush to sort everything. We luckily got some amazing tenants for our house. We had to book little Frida in for a flight - little bit nerve-racking with the heat etc. but it was all fine.

In-between that, we had prematurely booked a short trip to the ACT to spend some time on the coast then see mum, who resides a little way out of Canberra, for Christmas. What a smokey, scary mess! We arrived in Canberra, jumped in our hire car keen for some beach times. Checked the roads constantly on the apps, but as we drove through Nerriga, this ute in front of us pulled a semi-dramatic  180 and said, "Sorry, road closed". This was the start of some serious fucked up shit. It took us about 6 hours to drive to our coastal destination (with some places we were lucky to actually drive through!), where it was very smokey...the whole time. There was a period where we were on alert to watch for embers. It brought back a lot of memories growing up in the Blue Mountains as a young person. I would remember mum packing the photo albums, passports  and some small suitcases then sending us to mama's. I also remember needing to show my licence to drive up the mountain as it was open for residence only. Little did we know the sheer devastation that had happened already (we saw a bit of this on our drive), what was happening and come New Years Eve, what was going to happen.

We enjoyed our coastal stay as best we could and then it was time to drive to mum's for Christmas. We stopped in the beautiful little town of Mogo for some obligatory fudge purchasing and a little wander. It was smokey as. Some old bag was having a go at a couple of kids on their bikes riding on the main drag. I lol-ed - they're just kids lady, c'mon! I remember walking past the Local Aboriginal Land Council building and admiring the artwork displayed out the front. Not long after, I saw the exact same building in ruins from fire across the media. I teared up a little. We were just there! How can this happen? I know...that fucking wind. It's the killer (along with a myriad of other things).

We eventually made it back to the ACT and enjoyed more smokey weather. Oh well.

Back to our relocation...we had one massive issue. Our c**t of a case manager. She was an A1 bitch. I won't fully go into it, because we already have in our formal complaint. I secured a property privately - only to have M reveal the same day, literally 30 mins after, that a suitable DHA property was available to us. As we were driving into Wagga Wagga (a town so good they named it twice) DHA said the place wouldn't be ready, so offered us a different one that would be ready sooner.

Then COVID19. What?!

I had heard about this virus that some people were concerned about sometime in December, around Christmas I reckon.

It feels like we are gonna be okay, but getting used to constant change across all aspects if life has been a challenge for sure. I was pretty concerned about how my MS and meds might affect my risk of contracting COVID19. I have been assured I am at a very low risk as my medication, Tysabri, only suppresses the immunity of my brain and spine...if that makes any sense? No, me either.

I have to say I DEARLY miss the nurses who look after me in S.A for my infusions. The Canberra system is a flop. Seriously. I have different nurses each time and one time they wanted to let me go straight after the infusion. The protocol is that you are observed for an hour due to the risk of PML - remember that rare brain infection that you can get because your brain and spine are immunosuppressed, and you can become severely disabled or die from it? The chick was like "But you said you've had this medication for like 5 years?" What a fucking idiot. Can I trust these twats to do their job? The first time I went I was there for 4 hours!!! I was the last soul there!

One time...one nurse was faffing about and proclaimed "Sometimes I don't even know what I am doing!?" 😳 I wanted to say, "Well, I have been sitting here for 30 minutes with no cannula so, do you need me to tell you what to do luv?", instead I laughed uncomfortably through gritted teeth.

I feel very anxious each time I go. My first 4 infusions, they needed to try more than once to get my vein. Fortunately the last time I went, I got a lovely nurse who went and got someone experienced to do my difficult cannulation, and this all happened in the first 15 minutes of arriving - bravo!

I DO respect nurses, but my experiences prior have been a bit rubbish. Or am I just a nurse snob?

Oh and I also had my yearly MRI which the neurologist called me to give me results, as no appointment would be made during this COVID19 business. Apparently the scans were fine. No changes...I think? He did ask me why I did not have contrast. Funny that, as his minion is the one that wrote the bloody referral. So again, my confidence in this system here is not great.

I may be missing S.A a little. Only like 1000 sleeps to go.

I could ramble on but I think I have said enough for now...

Summer is coming ... ... ... again

I realise I did not post since my last post (obvs) and that means that I did not let you know that there were no changes on my MRI scans. Well now you know!

So summer is coming, again. For most people this means:
- being outside
- parties/festivals
- rapid increase in socialising opportunities
- alfresco dining/drinking
- going to the beach
- super fun times!!!

For me, this means:
- constant checking of weather
- inability to commit to anything that is outside
- chasing the air con
- disappointing people
- feeling isolated
- reminding work of my required reasonable adjustments
- being nervous about explaining my limitations
- expensive electricity bill

Yes it is true, I hate summer (but like small bits of it) and it hates me. However, I am grateful that we don't get much humidity here - now that is the killer. One of my last visits to Brissy I completely broke down in tears. I was, literally, a  HOT MESS. Cheers humidity!!!
~ I questioned my existence ~
I wish I knew more people that understood this. Anyone out there?

The weather also makes any (of the ridiculously not enough) exercise I do, even harder. So I tried a Barre Class "based on elements of Ballet Barre and Pilates". Well I have done ballet and pilates. Loved them both! What could go wrong? This sounds perfect for Sascha! Right?
"Hahahaha", oh she laughed.
"Suited to any fitness level" they said!
Get rooted.
I left the second trial class I tried, in tears. My balance, oh how I did not balance! My dodgy knee, oh how its dodgy-ness shone bright! They offered me pilates classes as part of the month trial instead, but I refused as I wanted to do something I can AFFORD, and long term, pilates is not affordable unless you're rich (who is with me?). It was a red hot failure. What was I thinking...I did tell them everything about my limitations and the MS.
F  A  I  L

So then, I looked into adult ballet classes and that is what I am doing. The barre work is great. Love, love, love it. Lots of memories flooding back. (FYI, I did ballet and other dance styles for 10 years, ages 4 to 14). The centre work however, I am appalling. Hello MS! My balance, my knee...they let me down tremendously...people may say "oh but it will help you improve"...sorry but I am not convinced. The thing is, it's not that my body can learn to balance again, it's damaged and that is the hard (sad) truth. If it helped so much, all MSers would be doing ballet, let's be honest here.

In other news. We might be moving.
It is the life I chose and as exciting as it can be, it is a bit sucky that we do not get to live a little more in our home :( BUT WE WILL BE BACK!
There is also the question of work... I was able to speak with my principal who said he was happy to approve Leave Without Pay so I would not lose my permanency. This was a MASSIVE relief.

Some people may struggle with this idea of moving a lot. I quite like it. Change is good. Without all the moving I may never have fallen into the area of teaching that I am now loving so much. Would I have accumulated the same experience in life, love and work? I doubt it. I am actually internally grateful for such opportunities, for it has shaped me, and contributed greatly to my resilience and acceptance of change. Now how's that for a positive outlook mofos?!

When is this all happening? Well here is probably the shittiest part...at this stage, we do not know as it factors in many things, even more so now that the end of year is upon us. I am regretting telling so many people. I thought it was good to be open and honest, but now I am being constantly asked - so please, no more asking. When I know, you'll know. K?

Frida has been mostly a delight, except for when she ate something that made her very sick and cost us an arm and a leg, then escaped the yard and then got mildly ill again, throwing up bits of foil, no doubt consumed in the feral yard of the grubs next door (who have recently moved out - but still left their yard looking like a dump)...*b r e a t h e* but yes, mostly a delight.

Also! Got myself a new set of wheels! Third car in my life, and I am 38. It's fun and a gross colour that is slowly growing on me.

P.S. Still looking to change my blog platform as this one is poo. Suggestions please.

Those invisible symptoms...

Good evening all...

Today is the first day of winter...and my last post was at the start of Autumn.
Frida, the puppy, is...well, she's being a puppy. I have been in tears at times and thank myself regularly for not going down that path of giving birth and having a human baby - sorry, but no fucking thank you. I would defo be a candidate for PND.
So the other day was World MS Day and the 'focus' this year was all about invisible symptoms.

There are many MANY invisible symptoms associated with MS. And the other things is, that many everyday annoyances become our 'new normal', much like other annoying illnesses/diseases/disorders etc. Here is a snippet taken from document aptly named 'But You Look So Good!' (https://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Brochures/Brochure-But-You-Look-So-Good.pdf)
But people, this is not the full list! And I would argue that some of these are quite visible - anyone that knows me well would agree with me when I saw my heat sensitivity is not that invisible (the whining, sweating, crying, tantrum-like behaviour, insistent need for AC etc), and that dizziness...sometimes I just have a sober drunk moment...and it usually last a split second. 

Sounds fun huh?

Let us look at ONE symptom, that has many layers...

Let's have a look at another in some more detail...

And one more just for shits and gigs!Thank you to https://mymsaa.org/ms-information/symptoms/ms-symptoms/ for helping a sister out in explaining this stuff

Here is a simplistic list of MY invisible symptoms:

'MS symptoms that are hard to see include fatigue, pain, cognitive problems like memory loss or trouble solving problems, weakness, blurred vision, numbness, prickly or tingling sensations, heat sensitivity, dizziness, balance/coordination problems, and bladder or bowel problems.'

Sexual Dysfunction 

- decreased sexual sensation 

- decreased vaginal lubrication

- decreased libido 

- decreased willingness to attempt to engage in physical sexual activity (due to other physical discomfort)

- limited mobility may result in the inability of the person with MS to maintain certain positions to engage in sexual activity

- spasticity can be painful and result in avoidance of sex

- painful intercourse

- bowel and bladder dysfunction: People with MS who have difficulty controlling their bowels or bladder often avoid intimate contact fearing an embarrassing accident.

- do. I. need. to. continue? I actually could because I have only covered Primary and Secondary Sexual Dysfunction...there is also Tertiary...

Anxiety and Depression 

- PLEASE READ THE ABOVE! In addition to the above, 

- chronic unhappiness

- frequent worry/guilt/feeling out-of-control

- excessive concern with health 

- negative thinking about the future..I will stop there because I am actually getting teary. 

Pain and Numbness

Neurogenic Pain

- Steady dysesthetic pain, which is a burning, tingling, or tightening sensation, usually occurring in the legs and arms, but sometimes in the body; it is the most common chronic pain syndrome; it can be dull, nagging, or have a prickling sensation associated with warmth; it tends to be worse at night and after exercise; it is also aggravated by changes in temperature

Nociceptive Pain

- This type of pain is usually less intense but can be long-lasting. For instance, weakness on one side of the body will cause someone to favour the other side and develop stiff joints; muscles can become twisted and cause the body to be unbalanced, frequently leading to muscle and joint pain 

There's more but you can research yourself if you're feeling brave.

- sexual dysfunction ('but can you be more specific Sascha?' No, I cannot)

- pain (in my knee, and my fucking soul)

- Heat sensitivity 

- bowel and bladder issues (let me just say when I gotta go, I gotta go)

- anxiety (...although...WHO DO YOU KNOW THAT DOES NOT HAVE ANXIETY!?)

- depression (quite recent, and it's all connected to the fucking MS and yes I have had suicidal thoughts, but can confidently say I would never act on them - these tend to rear their ugly head when I am aggravated by the heat/humidity)

- dizziness (at times)

- balance issues (at times)

- limb movements associated with spasticity (yes, I can be a spastic - usually at night in my feet and legs and I get the briefest warning beforehand, but cannot describe the warning)

So yeah. Maybe getting quite real this blog. Giving out some extra info that I have held back in other posts. 

My annual MRI is on Monday and I am fucking petrified that there will be changes. But I can't do a thing. 

My appointment for the MRI are on June 19th, so expect a post them.

Oh and Liberals won the election. Fuckers. Why this nation doesn't care about people and the environment is beyond comprehension.

P.S Frida just came to comfort me (maybe because I was crying a little tiny bit, maybe) 

House, puppy and cat

Well hello there pretties. And hello to AUTUMN! I love you...Autumn that is AND it's Fringe time! So many great things are happening now...but before...oh no, not many great things.

The last time I wrote a post was when I was recovering from surgery. And now it is 8 months later - shit! 8 months... how very slack of me. However, I am happy to report I am no longer in tonsil removal pain and come to think of it, I haven't been 'sick' since having my tonsils out. Fucking great. Well worth it. Maybe. I dunno. Not sure I would recommend it to be honest.

So much has happened...

a) We bought a house.
b) Selma Blair has MS too.
c) I survived 4 or so heatwaves.
d) We got a puppy.
e) Bowie died.

a) Yup. We are home owners (with the bank of course). Not far from the city. Built in the 50s. Wooden floorboards. Double brick. It's small and sweet. Air conditioning in summer costs a fortune, but meh! It's surrounded by some kinda dodgy neighbours. It's bloody great. Love it. No regrets.

b) So what? Well... is it kinda good that MS is getting some attention once again, thanks to a famous person. She currently uses a cane and has trouble with her speech. This has been a reminder for me that I am fucking lucky. I have my 'things' and there are even some things that I do not discuss in my blogs. Some are of a sensitive nature and some I am just not brave enough to share. I have shared with some of you these secret horrors and there are also a few I have told no one - yes, really.

c) Surviving heatwaves is a real motherfucker when you have an intolerance to heat. There are times when you question even existing because there is NOTHING enjoyable a out it. Yes, you read right. I have felt that intensely about this. But I obviously do not act on this...but I start to wonder about the whole 'survival of the fittest'. I don't even understand how I survived. Is that some fucked up thinking or what? Mix this with intense work life and a puppy...and you have a week from hell.

d) The puppy Polly, was then renamed Frida. This is because Polly sounds too similar to Bowie. So Frida it became. She is a cavoodle, supposedly. Mum was a cavoodle, dad a poodle. However, Mum looked more poodle, so really she's a poodle cross at the end of the day. She's gorgeous and HARD FUCKING WORK ALONE. Frida has had visits with Aunty Kathy and Uncle Pete, Aunty Nicola and as I sit here and write this, Aunty Claire and Aunty Alex - I'm hoping they will actually give her back to me tomorrow as I think they are falling in love with her. I did consider re-homing her.
Frida has had me in tears. Daily. Yes, a puppy dog has made me cry, and not from cuteness and happiness (although there has been a bit of this). The NEEDLE teeth though, they hurt and she jumps. I currently have two 20 cent piece bruises on my upper inner thigh from her biting me. This one caused instant tears. The back of my right ankle has in little cuts and scratched all over it, and I have bruises and healing bite marks all around.
M is currently away, so I am trying to manage alone and I have needed help. I am so, so, so very grateful to those of you who have helped me out and shown concern, or listened to me whinge and whine. Thank you so much, from the bottom of my heart.

e) Unfortunately, Bowie is no longer with us. *waterworks* I am devastated and feel sick about it.
During the stupid motherfucking cunt face heatwave, I was trying to keep Bowie inside each day...except on the Tuesday morning, he slipped through. I got a call at lunch that Bowie had entered a neighbour's backyard and was attacked by two dogs. This is all I will say on this matter.

Having Multiple Sclerosis is horrible, especially in summer. The weather in summer runs/ruins my life and also the life of M and all social situations. I HATE it. If I could chase the winters, I would. If I could not work during summer, I would. But I can't do these things. I just need to suck it up - but it sucks so much.

Peace out.

Is pain a journey?

I say 'hello', in pain. In post-UPPP tonsillectomy pain.

The surgery for my floppy palate is done and dusted. I am now at day 12 since the surgery (which was text book) and I am still in a lot of pain :-(

I thought I was so prepared! I mean, I was prepared in that I had all the pain relief ready, a humidifier, organised a good time to have it down so as to not interfere with work too much, M had time off to take me there, pick me up and care for me, a Netflix list. But, nothing prepared me for the severe pain to come!

Wednesday June 27th...
The whole experience at Stirling Hospital was amazing. It's a small hospital so you get that personalised experience, which was lovely. I was checked in at 10:30 and in surgery by 12:20 or so. I spoke with the anaesthetist who gave me a little something something to calm me beforehand (coz y'know, anxiety that I won't wake up!). He took care in finding a vein that would cooperate (not like last surgery!). My surgeon saw me after and was really pleased with how it all went down. I ate food, and it was nice (yeah, that's right, the hospital food was nice!). I had a shot Fentanyl and was on Endone regularly to help with the pain.

When the nurse said she was giving me Fentanyl I immediately thought of some doco I watched about people using it recreationally. To be honest, I don't know what it did...oh well.

From Thursday June 28th...
After being home a few days, things were setting in as expected. I knew the pain would increase. So I took the Endone as prescribed...2 every 3 hours as required. AS REQUIRED.

When M called about getting a repeat (because I struggled to speak), there was a bit of shock that I had taken so many. It was viewed as a bit unusual. In my mind, the Endone was doing fuck all. But it's all I had. I started taking some meds with codeine...not sure that did anything more either. So yeah, it WAS usual. I was not getting the pain relief I needed. Swallowing to just stay hydrated was challenging to say the least.

Tuesday July 3rd...
Fuck this. I am NOT in a  good way.
I email the offices of my ENT. M comes home to take me in. I am in tears, in pain.
ENT informs the ENT on duty at Flinders that I am coming in and wants me admitted to get my pain under control so I can keep fluids up myself.
I turn up to emergency and I am in a little space talking to nurses etc.
They're not picking up what I am putting down, asking me if i can drink water so I can have some Oxycodone (aka Endone) for pain relief. WTF PEOPLE? NO. I CANNOT SWALLOW. THE ENDONE DON'T WORK. THIS IS WHY I AM HERE. HOOK ME UP WITH SOME SALINE AND INJECT ME WITH PAIN RELIEF.
So eventually, I am given a topical throat numbing gel to gargle.
A shot of Fentanyl.
Then 2 doctors trying to locate a vein (haha, that was heaps fun considering I haven't been able to swallow and keep hydrated) on either arm. The ENT on duty wins that race. I tell the other doc, 'good try'. Not sure my humour was appreciated. Whoops.
Then I am on a drip and waiting to be taken to Flinders Private. Waiting...and waiting. Eavesdropping on other emergency patients.
Finally a women turns up. Pops me in a wheelchair and I am transferred to Flinders Private where I have the same fucking conversation about how Endone has been doing SWEET FA.
At about 5pm, I was administered a shot of morphine. Hallelujah! My voice has been heard.
Finally, I was able to swallow without any fear of crying and dying from pain. I ate. It was marvellous. I got a brief reminder of what it felt like to feel 'normal'.

Wednesday July 4th...
Once the morphine wore off, it was back to Endone. I was given some Endone at about 4:30am...the darling nurse Sue actually cared. She checked in with me about 30 mins later to see how the Endone was going. Again, nothing. She was right onto it - bloody legend. I got another shot of morphine which, again, left me in a welcomed daze of normalcy.
Once breakfast was served (which I didn't touch), it was decided that I needed to stay another night. This was absolutely A-okay with me. I was in the best place for my situation and my anxiety.
It was recommended that I chew gum...can someone bring me some gum? Oh yeah sure *eye roll* I thought I would take the nurse up on this suggestion and asked my mother-in-law to pop in with some gum and deodorant. Which she did. I tried to chew gum. Holy hell. That was not a good move. I could barely move my tongue. It was a terrible idea! Even as I write this, I struggle to steer custard around my mouth, let alone work with a piece of gum. As a positive, I now have 3 packets of spearmint, 1 strawberry and another bubble something.
During this second night, I was being given Endone every 3 hours. Sleep was difficult.

Thursday July 5th...
The following morning, I was told to stay all day, which I did. And I tried to sleep for the most part but was being woken for administration of meds every few hours. I did get some random minutes of shut eye after asking for earplugs (the old duck next door sounded like she was having a tea party, discussing how she's got $100000 in the bank and $300000 tied up in assets and shares - poor, poor lady).

M picked me up at 5pm and I have since continued with a similar schedule of meds, trying not to take the Endone unless I am realllllly feeling pain, or getting frustrated at getting no relief.

The pain is still there and it's fucked, but I feel it's slowly improving...s l o w l y .  .   .
Here's hoping this surgery has actually been successful and my snoring will be long gone - I won't know for a few weeks yet. I can tell you now, this has been the most physically painful thing I have EVER experienced. Some shared this opinion with me themselves, comparing it to child birth.

The thing is, you're in pain ALL of the time. There is no respite - this is what I struggled with. Even when it wasn't 'as' bad, it was still fucking bad. Sleeping - argh! Waking up - blah! Talking - youch! Crying - Eeeek! Swallowing - Ooowwww! Staring down the pills that need swallowing -*run away*

BTW - My latest MRI shows no changes since my MRI in April last year - YIPPEE! Relief is felt for another year. So I just keep on keeping on with my infusions, which is just super. This is probably the most relevant point of this entire post!

Thanks for reading!