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