#also! i have spent years being like “i'm so lucky! i got diagnosed with endometriosis after only five years!”

[chocoholicbec]

#similar feelings abt my late diagnosed adhd#ur telling me u were diagnosed and medicated at age 8 so u didn’t spend the first three decades of ur life setting said life on fire#ur telling me u didn’t develop crippling/paralyzing anxiety from the fear of inevitable disappointment and failure#ur telling me u don’t go through months long bouts of depression constantly bc of the ever present reminders that you will never be normal#now with bonus physical disabilities from medical misogyny and medical neglect made worse by being unable to follow up on anything ever! - @spacelazarwolf, same hat 🙃

I’m going to be a bitch for a second, but when I’m conversing with someone newly diagnosed with MCAS/POTS post covid and they complain about “the long wait” to get diagnosed and that “long wait” is 3-4 months my entire brain blue screens.

Like on the one hand, yes those 3-4 months must have been so, so scary and I am so unbelievably glad we’re in a place where doctors know enough to reconize it now. Like truly, I am so sincere I am so happy for them.

But I’m also just like... 30 years, man.

I spent 30 years being told from the age of eight I was manifesting my allergic reactions through anxiety by health care professionals.

Fuck, five years ago when I was starving to death from how severe my MCAS had gotten an allergist told me it was anxiety.

And you got diagnosed in three months.

MONTHS

MONTHS

AND YOU’RE COMPLAINING

I’m not mad at them. I’m not. I’m just sad for myself.

But also, hey, yeah. If you come into an MCAS forum and wonder why a bunch of the old timers get upset when you complain it took months for a doctor to listen to you, this is why.

It's not that you deserved to wait longer. It's that we didn’t either and and sometimes even good changes can unearth a world of hurt.

[endowarrior877]

Snack time

Whilst I was in a deep slumber earlier, a delivery came for me. I'll not lie I was hoping it was a house warming kind of gift from someone, anyone, but it wasn't. So disappointing! Instead it was several hundred bottles of protein juice stuff packed full of calories to help me out when I'm unable to eat. Yay lucky me. Since being unable to eat happens more than being able to eat, today being a perfect example of that, it's probably a good job I've got them.

Some doctors in the past don't understand why I why I struggle to eat. In fact after receiving a copy of my medial notes last year, I learned that I was at one point secretly diagnosed with anorexia but was never told. Strange right? You'd think you'd want to inform the patient of a diagnosis like that but no, no one ever said. Ever. The reason why I struggle to eat is because my pain is located in my tummy area. The pain ripples across my tummy and unfortunately for me my stomach gets affected. I can't eat when I'm rolling around in the worst pain imaginable. I am in too much pain. Think of the worst pain you've ever felt and times it by ten. Now do you think you'd be able to rustle up breakfast, lunch and dinner with ease and then eat it? I can barely stand when the pain is so bad.

Personally I don't understand how that is so hard to explain. I have lots of pain when having a bowel movement and can trigger flares by even the healthiest of foods as well. I can't win. Generally most of the time my tummy feels tender and sore and adding food onto that is hard. Sometimes it's hard enough trying to get liquid medication in me when I'm in a lot of pain let alone maintain a healthy diet at all times. So as a consequence my weight has done down so much. Do I feel happy that I look like a stick and you can see ribs sticking out? No ofcourse not! Most days I don't feel good about how I look and would love notning more than to move up a dress size or 2. I used to model, do promotion work, my butt was huge and jiggly and I loved it. Now i don't like what I see with or without clothes and the only thing that will rectify that is putting weight on.

When did my weight start to drop? When the bowel movements came at their worst and after i feel pregnant. I also suffered with terrible hyperemisis and although endometriosis symptoms can reduce whilst pregnant everything got worst 1 billion times over. About 3 years ago I weighed 8 and a half stone or 53kg. Today I weigh 43 or 6 stone 8. When I was pregnant I was at my sickest and lowest weight ever. It was very scary for both me and teeny. At 6 months pregnant I weighed a shocking 5.5 or 43kg. I was also very close to getting a feeding tube. The thought of that terrified me. My pregnancy stories are a whole separate thing though.

I have never had an eating disorder nor any problem with food. In fact quite the opposite and I love food. It's made sticking to endometriosis diet difficult because my love for bread and cake treats is too strong. My weight is so low because of my chronic illness endometriosis. There are a lot of different factors responsible for my weight drop but they are all due to me having endometriosis. To diagnosis me with anorexia and find out the way I did was extremely upsetting. I spent most of that period of my life in and out of hospital. Life was miserable. Strange things like how I offered many times to provide food diaries on top of the fluid and urine diaries. Each time I was told it wasn't necessary. Why? It actually baffles me. Surely it would have been extremely useful for them, especially as they actually just thought I was anorexic. But anyway, that's over thankfully, teeny is safe and absolutely beautiful and if i sit and think about it for too long I get annoyed about it. It's not fair how I was treated at all but teeny being here is all that really matters to me deep down.

Back on to what I came here to talk about. My delivery. The eldest was itching to know what was in there. So was I but when I seen them I wasn't looking forward to the unboxing. I'd spoken on the telephone with the dietitian and she had suggested some shakes packed full of everything my body needs that it doesn't get for what ever reason. I've tried them in Scotland before so i had an idea of what I would be getting. Being in Holland now I thought they might have some crazy flavors and I was right. Some sound pretty nice though and I'm looking forward to the cherry, apple and peach, a summer fruit one and I even think there is like a cola looking one. Hubby came in from work and I went back upstairs and asked could he bring one up to me. He did and he picked prob one that I'll just say it now is definitely one of my least favorites. It tastes like old warm fart and I haven't tasted that but if I ever did, this is exactly what it would taste like. What is the flavor....? Orange & ananas if your Dutch and if your English then it's orange and pineapple. This particular one has 300 calories in 200ml, so perfect for helping me out with what I've missed today for being in pain and then sleeping. I'm still struggling to drink it but it's easier than eating so I'm gonna try really hard to drink at least 3 a day and more if it's a bad pain day and I can't eat as much.

I also requested dairy free because dairy is not good for endometriosis. It increases estrogen levels and is not very good for your liver. If people are struggling with the mass of change with the endo diet I normally suggest starting cutting dairy out because it's the worst one in my opinion. I asked about gluten free but the langue barrier got in the way. I'll find the Dutch for that so I can mention it at my next appointment. The kids think they are nice wee juices though, if only!

First day of the dietitian side of things and I'm feeling confident things will improve there. Endometriosis has got so bad now that it isn't just about my reproductive organs. My weight, mental health, skin, bowels even my bones and joints and all been massively effected by this disease now. It's not just about addressing the main problem. It's about looking at everything and trying to make changes everywhere I can which will eventually make the main problem, endometriosis, not such a big problem. Well that is the hope anyway. I tried all of this in Scotland but things didn't really progress. I'll keep you updated on my shake challenge and hopefully I'll see some more meat on these bones of mine in no time at all.

Remember if you are loosing lots of weight and struggling to eat due to being sick or in pain that's not normal. It doesn't matter if you're diagnosed with something or not, it's not normal for our bodies to loose lots of weight and not be able to put it back on easily, so please speak to your doctor if you have any concerns about your this.

The picture is of my super tasty shake. I managed to get my jammy bottoms in the shot so I can show you my grumpy cats. They make me smile.

#snacktime #juice #drink #orange #pineapple #acquiredtaste #goodstuff #packed #goodforyou #endometriosis #endo #bulk #gain #weight