Sunday, June 11, 2017
I just love that song! But it's true, I am feeling good. Why am I feeling good? Well!
First of all my hair is princess pink, and that just makes me elatedly happy. But they changed me back onto my BuTrans patches, so that's great. I also started taking my antihistamines twice a day, ignoring what my doctor said of using a low dose as a rescue med, which to be ho nest just no. I also started a new antinausea medication which I take twice a day and am feeling much better! I got my epinephrine pen refilled, which is a great load off my mind.
I'm still terrified of things food wise, anything could set off a reaction.
My pain is maybe a 6/10 today. For most of us, that's a win. I'll take it from my usually 7-9/10!
Feeling a little more energized than usual, which is nice.
Friday, May 5, 2017
In an earlier post I wrote about a close family member being sick, that he wasn't going to get better? He passed away on Monday. We were supposed to visit him that day, I didn't get to say goodbye. But, I realise after some thought, that he didn't really know anyone was there with him at the end, but he knew he was loved so dearly throughout his whole life. I made sure he knew I, at least, loved him. Do I wish he hadn't passed away, of course, but I'm glad he's not in pain anymore.
The only problem is, I've never experienced this sort of pain, and sadness. I want to drink, a lot. I want to not know my own name, I would kill to numb this pain right now, it creeps up on me in the most unexpected moments. I'm over reacting to things, angry when I should be mildly irritated and devastated with no coping mechanism when the slightest plan change occurs. I know it's grief, I've studied human psychology enough to know what I'm experiencing, but all that good ole ''book learning'' doesn't help when you're the applicable party experiencing it, I guess. I'm just doing my best.
I feel sick, to my stomach, all day and night. It's keeping me up at night, I don't know what it is. Anxiety? Maybe, sadness? I'm not sure.
My eating disorder is triggering, my one piece of control left in the world. I probably shouldn't have started Slimming world.
I've lost 8lbs this week through starving etc. It's stupid, I know it is. I'm fine, I just want to fit into my Harley Quin Costume comfortably!
I'm going to MCM comic Con as BatGirl, see below.
And Hero's and Villians as Harley.
I'm honestly SO excited, I can't wait! I just hope that I can walk for some of it.
I'll catch up with you guys later,
Monday, April 24, 2017
Slimming World Day 1:
2 Relentless Energy Drinks - 12 Syns
Two slices white bread, toasted - 10 Syns
Four tablespoons of Nutella - 16 Syns
Home made tomato soup - free food
Lasagna Quorn - 6.5 Syns
Salad - Free
Syns - 44.4 - So, I think I failed today. It's the breakfast that did it! 26 syns for breakfast.
Mostly my breakfast was due to having not had a chance to go food shopping yet, so tomorrow will be better. I have soy yogurts and strawberries! I'm also going to be batch cooking some pasta and such so it's ready and easy to eat!
Jaxx and I are taking a break from our training, I just can't really cope with much right now. I'm exhausted and worried and my anxiety is in over drive because I stare at my phone all the time. I don't know what I expect my phone to do.
Sunday, April 23, 2017
Growing up is hard for a lot of reasons, but one of the most prominently terrifying things to me is that we don't age alone. Everyone we love and have ever had contact with us ages at generally the same rate. With seriously deep rooted fear of abandonment and previous relationships solidifying that further into me, I see death as abandonment. I know it isn't the dying person's fault, nor is it their intention, I've gotten pretty good at rationalising reasonable thoughts from the unreasonable. My Uncle's dying isn't all that of a surprise, he beat Cancer once a few years ago and he was doing great, the most upsetting part of this second round is that whats killing him can not be identified by medical tests and exploratory procedures. So he's just lying in a hospice bed, with no reason why, not that it really matters anymore. He's in pain, I want that to stop for him, I want him to be comfortable and if these few weeks are what he has left, I want them to be what he wants.
But how do you cope? They say death is easy for the one who is dying and hardest on those left behind, and I'm afraid. This is the first person from the seven of us to pass, my immediate family is small and we are close. I'm 25 years old and I have never been to a funeral, never really been closet o anyone who has died. My dad says it's ''all about Auntie and Uncle right now'' and I agree with that to a point, but life still goes on doesn't it? That's what they've always told me, I got divorced, the first time round and was half of a person sleeping on my parents couch unable to eat because it hurt my chest and got stuck... But life still went on. Call me callous maybe, but while my Uncle is laying in a hospice and my aunt is staying with him, people are rallying around her so at this difficult time she wants for nothing. But while my Uncle is laying in a hospice bed and my aunt is staying with him, I also have a pre-op assessment, surgery, recovery time, medication reviews, specialist appointments, I need to sort my wheelchair out. I don't mean to sound callous, I can't even begin to imagine what my Auntie is going through, loosing the man she loves, the man she's slept next to for 20 years. They've built and shared a life full of adventure, they've travelled the world; I can't imagine how that feels I've never had that person. But life still goes on while you're mourining, while you're loosing...doesn't it?
Makes me consider the Chronic Illness ''thing''. Most of my health problems wont kill me. They may make us wish we were dead but we probably wont actually bite the dust. But... when we first get sick our friends and family worry, they fuss and they rally around us, or at least mine did. Maybe I was lucky. But after a while no one even asks you how you're feeling, no one helps no one rallies. Isn't that kind of sad?
I'm going to try and talk about some positive things now, because I need to. I think you guys should focus on the positive too, any chance you get! I find my life so much easier when I focus on the positives.
I signed up and got accepted to be a representative fundraiser for EDSUK and I honestly couldn't be more excited. I've raised £40 pounds in just a few days and I know my family have yet to donate so, that'll certainly bring the total up. I'm thinking about doing a raffle and gathering bits and pieces for people to win! My aim is to raise £500 for wheeling 5k in a fun run. Jaxx and I will complete the fun run in late October at Crystal Palace, London, UK.
I decided to join Slimming World to loose some weight, and I've also come up with a ''rewards'' system.
Current Weight: 233lbs
GW1: 223lbs - Septum Peircing
GW2: 203lbs - New make up palette up to £50
GW3: 193lbs - A new tattoo
GW4: 183lbs - A new sun dress
GW5: 173lbs - A new pair of irregular choice shoes
Maybe you could try something similar as a little motivation to reach your goals?
Until tomorrow, over and out,
Saturday, April 22, 2017
I feel like weight gain for those of us who are chronically ill should just be plain banned. It just doesn't seem fair that after all we go through and are forced to over come, our weight can still sneak up on us; almost overnight it seems. Of course that's exactly what has happened to me, and exactly what has prompted this post.
I'm going to go with the over used but frankly, timeless that's it! I'm going on a diet. Why? Because I'm uncomfortable sitting down, I flow over, I bulge, I hate it. Hate it. The worst part to me is that it triggers my starvation brain.
But how can you be overweight and have an eating disorder?
Well dear friends, quite simply put, an eating disorder is a disorder of the mind with typically physical manifestations. However just because they're typical does not mean they happen the same in every case, if you've ever suffered from a medical problem you know just how hard those boxes can be to fit in, you may be a little from column A and a little from B. That's exactly what I am, and for that, they give us EDNOS. Standing for Eating Disorder Not Otherwise Specified, essentially a little from all the columns. You might be a starvation diet fan with purging tendencies but no binge eating. You might be a binge eater who doesn't purge but excersizes as your alternative to the ''typical'' vomiting purge we so often see immortalized in movies.
My eating disorder ... story I suppose, started when I was very young. Some might say I was born with it, when my feeding schedule was muddled up, I didn't want to be weaned and I came onto solid foods a lot later than the average child. From as young as I can remember people have always had to persuade me to eat. I still take some persuading, but as a child you eat your meals with your family, as a young adult and adult you often eat in privacy of your own company. I prefer it this way. I have to persuade myself to eat everything I do.
However the need for small meals, carefully prepared and controlled content, and eating rituals is rivaled by the fact that I do not live in an accomodating home. We live in a two story house with a kitchen that is hardly big enough for two people to stand. I can not stand for long enough to prepare a basic meal, and so I have to resort to take out and microwave meals, this is where my weight gain has come from.
I remember every mean thing anyone has ever said about my weight. It's the nature of the disorder, your comments trigger and fuel us. So be kind with yours words and be cautious with voicing your opinion; by all means you're entitled to have it, that doesn't mean it is a kind or tactful thing to say.
What about all those fizzy drinks you have??
On average I drink 2 x 500ml Rockstar energy drinks a day, that's 450-500 calories depending on whether it's Rockstar or Relentless. This is the only thing that keeps me going throughout the day and not succumbing to my crippling fatigue that most chronically ill patients experience. I will not give them up, I will work around them.
So whats the plan for your magical weight loss??
I'm going to be keeping daily tabs on where my calories are going for a week. From there I should have a fairly good idea of what is taking most of the calorie allowance, and where the majority of my fats are coming from; are they good fats or bad fats?
Obviously I want speedy safe weight loss, that's the name of most people's game is it not? I decided that since I want to do this the healthy way, I need people to keep me on track, but not because of calories or what I eat, but to keep me from starving myself; to keep me eating and accountable for that.
So, I'm going to make some promises to myself, not rules, just things I would like to maintain...
I promise I will not go under 1,000 calories a day.
I promise that most of these calories will go to healthy choices; veggies, fruits, grains, good fats and carbs.
I promise that I will not use laxatives.
I promise that I will not focibly throw up.
I promise to only weigh myself twice a week (Although it is conventional to weigh ones self once a week at the same time, on the same day, I can only compromise with my compulsions and hope to improve gradually)
I promise to count and post my calories, and talk to a trusted friend or family member if I am feeling triggered.
I will also try to :-
Drink at least three glasses of juice/water/non carbonated drinks a day.
So here we go...
Starting weight (22.4.17): 233.6lbs
Goal weight 1 (end of may) : 230.lbs
Goal weight 2 (End of June): 200lbs
Goal weight 3 (End of July): 170lbs
Goal weight 4 (End of August): 150lbs
Ultimate goal weight (End of December at the latest) : 140lbs
I learnt a valuable lesson and had a reminder today - my life is still unpredictable. I wanted to go to the beach today with the pup, it was sunny; not warm just sunny. That kind of safe weather where I still needed to bundle up but I could test how well this new medication was really working for me by seeing how far I could walk.
But my headache had other idea's for me.
my hustle up hustled wayyyyy down.
I've spent the day in bed, in pain, light sensitivity!
So, new game plan. Because of the rarity that is two weeks free from any appointments what so ever, I made a new game plan.
One map, three adventures, four hours of driving...
General game plan for tomorrow:
Get up around 9am, grab the pup, blankets, towels, leash, water bottle, pizza.
I just downloaded some wicked new tunes too! I can't wait, and even if I make it only as far as the first adventure, that's okay. This is my game plan my day and my road trip. But hopefully it's the start of pushing and finding my new limits.
In other news, I realised there's a lot even in England that I haven't seen; i intend to change that, naturally.
So I make sure I don't leave home without it, and to help you guys out if you think you want to take some trips, I'm going to add a ultimate day trip list to my blog pages! I'll of course be updating it as we go :D
Sunday, November 6, 2016
... But I really feel like this one will be the one I actually keep updated. So, here it is. My blog. My world, seen my way.
Here's to my first entry *raises a glass of juice* lets do this!
So this week has been interesting, a few new things happened. Here's whats up:
Thursday I went to see my dysautonomia specialist, Dr T. He's great, funny man with an awesome moustache. He teaches people how to read EKG's and has a great bedside manner. Every time I see him he tries to do my british accent, terribly I might add. Since I wasn't responding to the fludrocortosone and demopressin, he wanted me to try an adrenaline blocker; he theorized that it was hyperadrenic pots as opposed to straight up pots. Lucky me, only 15-20% of POTS patients have the hyperadrenic type. I feel so blessed >.<
Well the new medication is working, so I guess that's a correct theory? I actually slept throughout the night, only waking up maybe once but very briefly and easily fell back to sleep. So that was really great news. This means my caffine consumption has lowered too. I was honestly kind of upset to have it confirmed though, for a few reasons;
This makes me even more complex when a doctor views my case, and can decrease the likely hood of me being taken on by a specialist.
I'm just tiered of being different!
Either way at least the treatment for now is helping.
After the doctors appointment, my close friend L and I went to Hobby lobby, I'd never been! It was a lot of fun, even if I was in a wheelchair!
Friday I went to go have my cervical nerve blocks, due to the Chiari and EDS my neck is constantly strained and very sore. This was my first time having nerve blocks of any type, it went so well and worked fantastically that I'm going to ask my doctor about having them done in my lower back too! I woke up the first day after with no pain in my neck at all, of course it still felt ''off'' because of the subluxations but they were easier to fix because my neck wasn't so stiff.
I also managed to get my pain management doctor to give me Tylanol 3 (co-codamol in England). I figured this would be a good choice for a few reasons;
Firstly it's a side step from Tramadol, not a step up and I'd rather keep off the ''hard stuff'' for as long as I possibly can. Hopefully I can exchange the Tylenol 3 for Tramadol and keep circulating them round until neither is effective.
Secondly, it's available over the counter in England and makes it a little easier while waiting for specialists to get to me on their waiting lists. I understand it can take a while, but I will need pain relief pretty quickly once we land back in England.
Just trying to make my life as good as possible!
So that all went well, but I'm still anxious. I'm worried about Jaxx getting the right certificates for our flights, I'm worried about not being able to get the hop before they run out. I know my ex said he'd get us home one way or another but I'm still concerned that i may have to leave him behind. It makes me cry considering that. I can't, I have to push it to the back of my head for now. It's breaking my heart what i'm loosing, by choice, but I have to go home. All the people I love in America, I can't consider them right now; my family needs me. But it is hard being the one that feels she has to be there for everyone, though even if my family didn't need me I would still be going.
I can't stay in this suffocating marriage any longer. I just can't do it. I double guess everything he says, I have no idea how he feel sat any points and I'm just so sick of it. I had a pretty strong mental foundation that I had spent a lot of time and energy building up before I came out here; in fact, before I left I wasn't under any mental health treatment and was deemed mentally well. Now look at me. -sigh-.
But there's no point crying over spilt milk, or spilt tears. It's in the past and I have to make my own reality and world now, through my own choices. I need to remember how to stand on my own two feet. Remember what it means to make decisions based on my own well being. I need to remember me.