Midodrine Medicine Trial

Hey Everyone,
How are you?

Today I thought I would talk about and kind of document my trial of the drug called Midodrine. I have been diagnosed with Orthostatic Intolerance which is slightly different to PoTs but have very similar symptoms. 

What is Midodrine?
Midodrine is a drug that can be used to treat people with disorders of the autonomic nervous system which include low blood pressure, fainting/lightheadedness and postural tachycardia syndrome. It works by binding onto receptors causing blood vessels to narrow, thereby increasing blood pressure and reducing symptoms ( hopefully :) ). 
Midodrine is not a licensed drug by the FDA for PoTs (or similar conditions) meaning not all GPs will prescribe it and it has to be done by a specialist under supervision. Knowing my GP surgery, they will kick up a stink and won't prescribe it for me so it will probably need to be prescribed through the specialist who recommended it in the first place. 
As far as I am aware, it is used as a last resort when nothing else works.

Midodrine is a short lived medicine but fast acting. So, I take it before I get out of bed and then every 4 hours after that (within the safe dosage quantity obviously) as it then finds its way out your system in that time whilst also doing its job.
I have been fainting far to much recently and feeling lightheaded when I sit up properly or stand up or walk any distance and when I eat. Now, there is nothing to say this medicine will help with any or all of this but the aim is to help control my blood pressure and heart rate better so it is steadier and hopefully in turn stops the headaches that turn into lightheadedness and fainting.

What are the side affects?

Common – tingling and itching, increased blood pressure when lying down, headache, nausea (feeling sick), heartburn, inflammation of the lining of the mouth, flushing, rash, chills, difficulty urinating.

Less common – sleep disturbances, restlessness, agitation, irritability, slowed heart rate, urge to urinate.

Rare – palpitations, rapid heartbeat, abnormal liver blood test.

Possible side effects – abdominal pain, being sick (vomiting), diarrhoea, anxiety, feelings of confusion. But these are pretty much the standard side affects for most medicines.

On the day, they took my blood pressure on arrival and then an hour after taking the first tablet. Because of my Gastroparesis and my stomach not digesting stuff very well, we have to crush the tablet and mix it in a little bit of water and do it that way in order to get the best out of the tablet and ensure it is digested properly (the medicine doesn't come in liquid form unfortunately). They start you on a very low dose of 2.5mg and you can build up dosages and the amount of times you take it in time as long as you don't take more than 30mg a day. So after a consultation with my specialist he and the specialist nurse explain the medicine in depth and more tests I need to go for to try see what is going on in my brain when I have all these bad turns after food but anyway, I then took the first tablet, went away for an hour under my parents supervision and then went back to have my blood pressure re-checked to ensure it hadn't spiked up too high or anything. For once my body behaved and my blood pressure was absolutely fine. Like I said, this is a fast acting medicine and that morning I had had a headache from walking around and I did notice it went away and then came back and kind of came and went for the first hour after or so of taking it. 
After we had the ok from the Dr to leave with my 3 month supply of medicine, my parents took my shopping to try cheer me up and get me out the house as I had been stuck inside in bed for about a week an a half prior. I even got to use daddy's credit card not that the shops were that great to be honest. Now, lets bare in mind, I hadn't been able to walk to the toilet a few days earlier so braving it and walking around the shops was a big deal. By the time we got to the shops about a further hour later (so 2 hours after taking the medicine) my headache and any lightheadedness had gone - coincidence or medicine? We walked around for about an hour and a half before I started feeling headachy and lightheaded again so my I took the next tablet as it had been 4 hours and within about 10/15minutes I was feeling a bit better (other than extremely tired as by this point it had been an extremely long day and was running off a bag of crisps and a chocolate bar). Now, I don't want to say for sure but I would hazard a guess that this was just a coincidence and maybe the medicine is doing something...... result!! 

Then if we move on to today which (when I am writing this) is the day after starting the trial I woke up and sat up. When you have Orthostatic Intolerance, your body doesn't like to sit or stand up straight and this is where my symptoms start in the morning. If you are having a day in bed then you shouldn't take the medicine for the same reason as why you shouldn't take it within 4 hours of going to bed - it increases the chances of your blood pressure going too high. Today is Saturday so it's kind of a lazy day but because I have moved around and stuff I took the first tablet in the morning and again within about 10/15 minutes my headache and lightheadedness had significantly improved. 
One thing I haven't been able to do which has upset me a lot is take my doggie for walks because I just feel too ill walking the distance. So, putting the medicine to the test, my parents and I took the dog for a walk - not a long one but a decent distance that he gets exercise. Normally, I wouldn't get very far before the not feeling good kicks in, today - I got through 75% of the walk before I started getting a headache and not feeling too good. That is a massive improvement and again, I don't want to get too excited too early on as it could also be because my body has had a week's rest from well.. life! However, I am super happy I got to take him and didn't end up feeling totally horrendous!! 
I have also had some Gluten Free Porridge and although I did end up feeling fairly lightheaded after.... I haven't fainted!! Coincidence or just a one off as I occasionally have one off's where I don't faint.... only time will tell. Now although I did feel quite lightheaded after eating a Gluten Free Pizza for dinner, it wasn't anywhere near as bad as usual and it took longer to kick in as well. I also did not faint - just didn't feel that great. Still a major improvement if this is the medicine doing something and if we got the right dosage who knows!
I did put the medicine in a spoonful of yoghurt this morning and then a spoonful of the porridge for the second one and it was much better than the water.... didn't taste as bad haha.

I am going to write another post in a few days or a week and see how things go with time. I also know that after a little bit of time they can increase the dosage and amounts of times I take it if needed, so there is room for increasing it and adapting how I take it a little more to what I personally feel I need which is good.

That's all for this post. I thought I'd document it on here so that firstly I can keep track of how things have been when the Drs ask but also, I know that before I started it I was looking online and asking people if they'd taken it and advice and questions about it and didn't find that much on it so thought it might help anyone who is considering trying it.

If you had tried it, I'd love to know your experience with it!! 

Until next time, 
Stay Strong
<3

The Importance Of A Patient Doctor Relationship

Hey Everyone, 

I hope you are all doing good? - I have had a rough old week with 2 hospital admissions via ambulance but that's a whole other story and is going to put into a post but today I felt the urge to write a post about the topic of a Patient-Doctor relationship. I am warning in advance, this is more of a rant than a full on post as I have had a few extremely bad experiences recently.

When you go to any doctor regardless of what it is for, you put your trust into that doctor to be able to help you and treat you correctly. If that trust gets broken for any reason you lose faith in you treatment you are receiving and it makes it a more difficult situation for you and the doctor. 

I recently had an NJ feeding tube put back in (and taken out - not cool) as my health has deteriorated and I faint and have fit like episodes after eating a meal or anything substantial, and until they control that it means I am unable to keep myself going nutritionally. I have had this procedure many times now and unfortunately and have got to know what does and doesn't work well for me personally with all my chronic health conditions. Now, don't get me wrong, doctors know a lot and often will know more than the patient as they've studied it and dealt with it more. However, when it comes to people with chronic illness', they will often know more about the condition and how it effects their body and how certain interventions affect those conditions and not all doctors accept this. 

When there is an understanding and trust between the patient and dr, both sides cooperate in a much calmer and positive way meaning a much higher level of care and treatment is received. Starting an appointment with "I don't really know why you are here" or "what do you want me to do" or " what is 'insert name of condition'" or "to be honest I know best so we are doing it my way or no way" does not make for a good start to an appointment or for a good appointment or relationship with that doctor at all for that matter. I have come across some amazing doctors and specialists over the past few years but have unfortunately also come across many rude and ignorant ones. I've even come across a specialist recently who has refused to see me for being too complex. I mean seriously?! Too complex for a specialist?! 


Now, I appreciate this is a rant and not all doctors are like this for example my pain specialist, I don't have a bad word to say about him and trust in everything he says whether it is something I want to hear or not but this particular doctor I came across when I had my tube fitted recently has just really reminded me how important it is to have that relationship with a doctor be it a GP or a specialist for long term issues - so what do I do.... I rant on here :) 

For a doctor to ask you what your condition is as they'd not heard of it and how it'll affect the procedure they're doing is an instant problem in my head. It instantly makes me lose a little trust and makes me feel less safe in the hands of this person who is about to stick a camera and tube through my body. However, I do also appreciate that no one person can know of every single condition BUT to then tell the patient they are wrong and they're doing it their way because they know best and they aren't happy changing up how they had planned on doing this incase there is an emergency that comes in whilst he is doing the procedure on me does nothing but raise my anxiety levels right up. Not only that, half way through the procedure they tell you that you are too distressed and he won't do I and I will have to come back and get someone else as they don't want to do it is NOT ok in anyway (especially yelling at you). When you get told you should feel sleepy (as requested may I add) and you tell them it hasn't worked and you don't feel sleepy at all and to get yelled at and basically be told you're really not important is going to make you have extremely mixed emotions and is not the ingredients to the procedure or appointments to be good or successful or as stress free as it can be. Basically being told it's their way or the highway as isn't cool. It really leaves a sour taste in your mouth. Sometimes doctors need to learn to accept to work with the patient and their knowledge in their own body as well as their own. A good bed side manner is important.... I get people have bad days but that is just a bit too far. I also know I am not the only person to experience things like this. Turns out the NJ was fitted and had a kink in it so had to be pulled out a couple of days later as I wasn't able to use it... after all that!! 


This is NOT a dig at the NHS like someone had a go at me for. I appreciate the NHS very much and without it I would not have received the care and treatments I have needed. Though, whether it is NHS or private healthcare, you should not be made to feel more anxious, belittled, angered, a burden etc... 
I was also taken into hospital by ambulance recently and the second time I went in because I kept fainting when I stood up or even took a sip of water, the gastroenterologist told us there was nothing wrong and to go home.... he then watched me drink a smoothie and faint and said oh yeah maybe that is an issue. I mean..... seriously, he didn't even check me over, or check anything at all before telling us I was fine and to go home. I am not going to have been taken in by ambulance if there was nothing wrong? I don't see that as a fun evening activity funnily enough - especially after being rushed in 2 days previously unconscious and even taken into resus. Clearly a doctor who just didn't have the care to do any work!! 


It just makes me so mad when bedside manner is forgotten or ignorance is in these doctors who are doctors to help make people better... surely you would care if you have chosen to study for all those years to help people feel better? 

Basically, to get the best out of the patient,treatment, doctor and well everything, it all stems from a good relationship with the doctor and having trust in them.

What are your thoughts/experiences on this matter? 

I'll stop rambling now - it probably doesn't even make sense but like I have said previously, I started this to get things off my chest so that is what I am doing.

That's all for now
Thanks for ready

Stay Strong
<3

Getting Back On The Right Path

Hey Everyone

How are you all? 

I know it has been a fair while since I last posted and there are a few reasons for that. Having said that, I'm happy to say I am back and plan for it to stay that way. 

To get back into it I wanted to talk about a couple of the reasons as to why I stopped blogging and where I am at today. I will do a separate post updating you with my health properly but once you start reading you will understand what I mean. BUTTTT you probably want to grab a cuppa or something because it could be a long one... SORRY NOT SORRY! 

I started my blog and my Youtube channel for that matter to help raise awareness of my health, to try and help others out there who are suffering with chronic health conditions or help those around us understand what it is like and to be able to continue entertaining people as I have always been into acting since I was really little. The feeling I got when I was receiving comments saying something I had written or put up on Youtube had helped them in whatever way it was or that my video cheered them up and made them laugh that day when it was a difficult one was amazing (especially if I was

also having a difficult day). If I am honest it helped me realise that anything was possible regardless of my health situation. Sure, things had to be adapted or achieved in a different way but it wasn't going to define me or make me unable to do what I wanted even if it was in a way that I had not thought it was going to be. Hell, I got to be in the DailyMail online and on ITV News to help raise awareness and show people they are not alone and got even more amazing feedback. I made a video of me getting my pacemaker and the journey leading up to that in the hope that if I helped just one person going through it or helped one person learn what Gastroparesis is that hadn't heard of it I was winning and my health wasn't. I never expected the video to get over 12 thousand views!!! But in the mist of all of these amazing things that had come from a not so great situation.... I then started to lose that positivity energy.

Everyone goes between being positive and being negative...

We are human! However, sometimes with chronic illness these positive or negative feelings are enhanced a little and more often than not it is those negative feelings that are enhanced. It is extremely normal and very common for low moods, negative thinking and even depression to occur when living with a chronic illness. Your life gets tipped upside down when you get diagnosed and when you live with it and live with the constant fear of not knowing how you're going to wake up tomorrow and whether you're going to get through the day of have a major dip and end up back in hospital or in a bad way and are constantly in pain.... you are bound to sink into depression. We live in a world where the media like to show the "perfect figure" and the "perfect (and normal) lifestyle" etc... when in fact that's not the real world. No two people are the same and no two lives aren't the same but it doesn't mean that you're not perfect or right and that your lifestyle isn't going to be enjoyable and make you happy. So when you are going through all these major life changes to adapt to your health and suddenly you are unable to do some or most of the things the media shows, you are bound to start feeling crappy and like your life is over. 

It is hard not to when you see all these people that appear to be living the "perfect & normal life" - but what you don't see is what they're feeling or how they live away from the camera be it Youtubers or musicians or actors or whatever they do. You see what they want you to see or what the media want you to see. How many celebrities do you know that have chronic health conditions? Not many I bet and that's because not many celebrities share it with the world be it because they want to have privacy or because they're told not to for whatever reason. Then you get the people who judge you or make fun of your situation because they don't understand it or see it as different because it is not what they are dealing with and no what the media shows! No wonder I started feeling demotivated and like I wasn't going to be able to live a "normal" life. I lost all of my positivity and motivation to beat my health and still achieve amazing things. As my health got worse I felt like my life was over. That I couldn't achieve things and I was putting all my energy to all the wrong things and then it becomes a habit. 

I recently saw and read an interview with Selena Gomez. Now, she is someone that has had a lot of negative things said about her and has gone through a really rough time but has stayed strong and come out the other side. The reason I have mentioned her is because she talked about a chronic illness that she is living with. She has days where she is exhausted and physically feels in pain but she pushes through and doesn't let it beat her. She has achieved so many amazing things even though she has been dealing with that. Tell me, why isn't that all over the news and the media to show the world that it doesn't matter what you are going through, if you put your mind to it and want it enough... you can achieve it - no matter what! If you want something enough .... no one and I mean no one can stop you. You might have to try getting to that goal in a few different ways but you'll get there! I know it is wayyyyyy easier said that done and I need to take my own advice (which I am not very good at) but everything happens for a reason at the right time even if we can't see it at that moment. People come and go but the people that are good for you and are true are the people that will stay and also the ones that will help you grow!

I've had a lot of pain recently in every aspect of my life - physically, emotionally and mentally. I've had people come and go, my health is back on a downwards spiral and out of my control and I have just become really unhappy with where my life is at and what I'm doing with and in my life. There is not one bit of my life that  ever imagined would be happening and all the things I did imagine or hope for aren't there... at least not at a quick glance. Sure, I have people who I know are there for me through thick and thin and I wouldn't change that for the world (that is the only thing that has kept me going) but my life just isn't what I expected. But I'm slowly realising that the things we don't ever imagining happening to us are the things that teach us the most and are the things that end up helping put us on the right track... even if it is to make a point!! Nothing in life is "normal". Everyone's life is a challenge and is different to the person next to them but it is what we make of it that makes it "perfect". If we let people or health or just life in general control us..... we lose ourselves and we lose the things we want in life and we don't achieve things to our best potential. 

I don't even know if any of this really makes sense but in my head it does and I just decided to type whatever comes out because it is when you start amending things and overthinking things that we end up compromising being 100% truthful to ourselves. If we accept the things we can't change and change the things we won't accept..... we can achieve the most amazing things and be the happiest person ever! We just have to make the best of what we can in the situations we can't change or control but take control and change the situations we can to make them the best possible!!

And that is what I plan to do.... make the best of the situation with my health but change the situations I can to make the best of them and make them how I want to and how I originally intended to set them out to be! Living with a chronic illness is hard to accept and I can't say I have accepted it entirely because I haven't and I have days that I just can't handle it and wish for a "normal" life but once I start changing the things I can, I am hoping I will become happier and in turn find it easier to accept my health!!! 

So, who's with me? Who is going to make the best of the situations we can't change or control and take control and change the ones we can!?!?

That's all for now. I have made a video that I also posted today that matches and talks about the things I have talked about on here but in a bit more detail and all that jazz so if you want to watch that (or other fun things that are on my channel) then click this link. www.youtube.com/thedramaqueensoph - and don't forget to thumbs up the video an subscribe to have loads more fun!! 

Stay Strong

<3

Gluten Free: Good Or Bad?

Heyyyy,

Hope y'all are having a good day.

Today I wanted to talk about something that has been playing on my mind recently. There are a lot of different reasons why people go on a gluten free diet. Some out of choice and others it's not. I'm sure most of you would have heard about the Gluten Free weight loss fad thing. Now, I have nothing against people choosing to go gluten free for whatever reason it may be but, what does really get on my nerves is when I get told I'm lucky I have to be gluten free because it will help me with weight loss and such..... There are a few reasons why it grinds on me. Firstly, I don't count myself lucky to have an allergy and have no choice but to give up foods I love or pay way more for gluten free products. The second reason is because since becoming gluten free, I have also become a lot more aware of what ingredients there are in each food and how much fat, sugar, fibre etc there is in the product. Now the question I ask to you is, is cutting out gluten from your diet actually good for you be it to be healthier or for weight loss/control?

A gluten free diet isn't actually necessarily healthier for you and can often even lead to weight gain. From what I have seen and read, many gluten free products are high in processed carbs, fat and sugar. This can cause weight gain because they're the wrong carbs and fat your body actually needs. This means that if you're not having to go gluten free for health reasons, you would probably be better off shopping for a variety of high finer carbs, lean proteins and you're good old fashion fruit and veg along with the healthy fats.

Don't get me wrong, there are some pros of eliminating gluten from your diet. So, I thought I would bullet point some of them out for us to take a closer look at.

Pros: 

• If you have a gluten intolerance, you may have damage or inflammation in the intestinal tract. Going gluten free can help reverse the damage or inflammation relieving any symptoms you have.
• Because you read the labels more to check for gluten free or not, you become more aware of food and what is in the product.
• It will generally lead to a healthier diet in the sense that you will have less processed foods as most of them include gluten.
• It means you introduce higher quality grains such as quinoa into your diet.

                      Cons:

• You reduce your good carbohydrates intake because it is assumed they all have gluten in.
• You can end up lacking finer from the traditional sources which can lead to digestive problems.
• You can possibly gain weight because GF products often contain higher levels of fat and sugar.
• You can gain weight because your intestinal tract will renew itself and recover from any changes. As a result, it will also start taking in nutrients in the way it is supposed to which is good but also can cause you to gain more weight than you would normally.
• You can become deficient in needed nutrients such as iron, fibre, vitamins and folate which will make you lose weight but, not because you're getting healthier more so because you're not getting what you need to sustain your body.

What we need to remember is that Gluten is not harmful to our health and nor does it make us gain weight. Since so many foods are now coming in gluten free versions, it is so easy for us to think that they must be a better alternative which is definitely wrong. Gluten free doesn't automatically mean low calorie or healthy. In fact Gluten is found in a lot of whole-grain foods that have loads of vitamins, minerals and fibre which are all vital to a healthy diet. Not only that, people who eat 3 servings of whole grains a day are apparently 30% less likely to develop type 2 diabetes.

At the end of the day, it is down to us as individuals to decide what we eat and don't eat within our diets (allergies aside) but before cutting things out of our diets we need to be 100% sure it is actually better for us. 

In conclusion, although there are many benefits to having a gluten free diet, unless you actually need to stick to one, it is actually doing our health and body any better. It is just a myth that it helps you lose weight in a healthier way because that isn't actually the case at all. There aren't any health benefits in reality (obviously if you're allergic there is :) ). You'd be better off having a balanced diet and including gluten as your body will receive everything it needs in moderation.

What are your views on Gluten Free diets? Do you think they are better for you or not?

That's all for now

Until next time

Stay Strong

<3

Weight vs Muscle Weight

Hey Y'all

How are you doing?

Today I wanted to talk about something that I have been wondering about and researching recently. With all that is going on with my health, I have to keep an eye on my weight to make sure it's stable and not going down too low. Somehow, recently it has been stable and the scales have been going up - higher than ever before. I couldn't fathom out how this could be possible being that my eating isn't all that great and is mainly chocolate for energy. Then it occurred to me that I do so much cheer and exercise at the moment that muscle is obviously developing. Muscle means extra weight. So, what the scales are telling me aren't all that accurate. They aren't really helping me keep track of what my actual body weight is muscles aside.

The realisation of this then got two things floating around my head. Firstly, it made me understand why my 'weight' has been going up or staying stable and therefore leads to doctors really not taking much notice of me as they think I am coping just fine. Even when I'm not. :(

Secondly, everyone who is wanting that perfect bikini body for the summer or even to just lose weight, ever wondered why the scales are going up no matter what diet you keep to? What about those exercises you have been doing too? They've been giving you some good old muscle. That's a good thing.... it just doesn't help with accurate scale reading. 

When we are watching our weight and figure for whatever reason be it health or to get that bikini body, we use a combination of the mirror and the scales. The mirror shows us what we want to see or don't want to see and the scales tell us a number, but in reality... they're anything but accurate when you really think about it.
So, me being me decided to google this shiz and find out more. This is what I found out in words that hopefully is easy to understand. 

The Problems with Weight Loss/Keeping Track of weight. 
If you are wanting to lose weight, it’s most likely because you carry too much fat. There are people who must lose weight, like athletes before a competition, but most want fat loss. For every lb of fat you lose, you may gain a lb in muscle. So when you weigh yourself on the scales, it is as if you haven't lost any weight when in actual fact you did lose some fatty weight but kept it on with the muscle weight. So we should stop weighing ourselves for these two reasons: 

• It's Unreliable: Your body-weight can fluctuate daily since it’s influenced by your stomach/bowel/bladder content, water loss/retention, muscle loss/gain, fat loss/gain, … You’ll have no idea what’s actually going on.
• It's Irrelevant: 2 people with similar height can weigh the same, but look completely different because one has lower body fat than the the other. Look at the picture for example. 

The last point shows why the BMI standard is flawed: it doesn’t take your body fat into account. Both the guys in the picture have the same BMI, but one is clearly healthier and his body fat is lower.

There are a few ways to track your weight more accurately be it for health reasons or weight loss reasons. 
You don’t need to track progress weekly, changes wouldn’t be drastic enough. Track it every 2 weeks or so. 
Stop Weighing Yourself Daily - The daily fluctuations will mess with your motivation. Weigh yourself once every 2 weeks, not more. 
Stop Looking in The Mirror - Self-image issues can skew perception. Shoot full body pictures and compare them with old ones. 
Track Body Fat - Get a fat caliper and track your body fat every 2 weeks.

Fat Caliper

Take Measurements - Measurements of your neck, chest, arms, waist & thighs. Your waist should go down and the rest should go up. 
Take Pictures -  Full body pictures from ankle to neck, front/back/side, every 2 weeks. Compare it with your previous pics. 
Strength Stats -  Log your workouts. Strength going up means muscle gains and strength training prevents muscle breakdown. Listen also to what people say. They’ll notice your body change more than you will as they don't see it every day. Your clothes will also start to feel differently too which is a really good way to see fat loss.

So, in conclusion, weighing ourselves doesn't actually tell us how healthy we are. So when doctors ignore me pretty much because my weight is stable.... they're not taking into account the muscle weight that I have gained or is what is keeping on the lbs.

What are your thoughts on this topic? I'd love to know.

But for now.... that is all until next time.

Stay Strong

<3

The Dumb Dietician

Hey All

Hope you're all well

So I thought I would share an experience I recently had.

As you will know I am trying to work off two very difficult diets. A gluten free one and a Gastroparesis friendly one. It leaves me clueless on what I am able to eat that is actually good for me. So, my mum and I went to see a dietician. 

Well... lets start at the very beginning of the appointment. It first start by her calling my name as per any normal appointment would. She then lead us into a cupboard in which, she didn't see as any problem or it being weird. Asking us 'are you coming in then?', I looked at my mum unsure of whether to laugh or be worried and replied, 'I think this is the wrong room'. Eventually she realised and we actually went into a proper room for what was clearing going to be an interesting hour of my life. 

I was hoping that was the end of her being well....  an idiot she then went on to spend 10 minutes trying to get the door shut! Yes you read that correctly... 10 whole minutes to try and close a door in which should take seconds. By this point I had totally given up any hope of this being a helpful session. I mean ..come on, how hard is it to close a door? Seriously!!!

So, once the appointment could actually start, she or shall we call her Dr Dumb for now, started asking a little about my problem. After giving her all the long story with all the details, Dr Dumb asks me does the gluten free help the pain in which I replied 'yes, I notice more pain if I eat gluten products'. However, because I am still in pain without gluten, Dr. Dumb tells us that she doesn't agree with my Specialist about me going gluten free. It limits my diet and I should be having more variety in my diet. She tells me that in 'in your case' (her fave saying), there is no evidence in needing a gluten free diet (aside from the fact I notice a huge difference in pain when I do have gluten) and that I shouldn't keep to one because my specialist is wrong telling me to have one. Well.... both me and my mum were trying extremely hard to not show a shocked face whilst trying to conceal our laughs. It is safe to say, we were left pretty speechless by the fact that Dr Dumb told us outright that she thinks my specialist is wrong about me keeping the diet. 

Thinking & hoping that this appointment surely could not get any worse, Dr Dumb then asks me what I think I should be eating. Uhm.... if I knew what I was able to eat that would give me goodness, would I be sitting there wasting an hour of my life with her? I may have politely told her that I don't know which is why I have come to her for help. All she kept saying was I need more variety in my diet and I need to eat more of all the things I know are not good for Gastroparesis. All the things I have been told to avoid and notice a difference if I eat them.. she told me to eat. To which she would just say that in my case there is no evidence to these being a problem for me and the condition. 

When I eat a proper meal, I am in pain for hours after and can't continue any normal activities without extreme pain. So I wanted to find some small healthy snack type things that I would be able to have. Things like a boiled egg or the little fruit pots you can get. Both of which my mum suggested to her when she continued to just give proper meals as ideas. Dr Dumb said yes they are good things but doesn't give us any other ideas when we ask for other ones. She literally sat there trying to get something out of her mouth and just didn't know what to say or suggest. I was getting so frustrated and upset by it all and started to get teary. I then outright asked her 'do you even know what Gastroparesis is and about tummy's' She replied yes but in a very unsure manner. Totally not believable. 

After about 30-40 minutes had past, my mum said to Dr Dumb that this was a waste of our time as she doesn't know to which Dr Dumb replied, ' I can make you an appointment with the new dietician when she starts if you would like as I am not permanent here?' We said, ' We think that would be a good idea'.

Honestly, my dog could of given us better answers than that idiot could. I really don't understand how some people pass their exams and get to where they are sometimes. I'm not being rude and I get that no one knows everything, but come on.... seriously.... She made me feel so crappy and hopeless when she should have been filling me with a bit of hope and helping me fill my stomach with good things to keep me off of feeding tubes again. I can't even get across to you just how stupid and ridiculous this appointment and she was as I am not a great writer like I have said before. But... I hope this gave you some sort of laugh be it a omg what an idiot laugh!!

DR WESTIE AT YOUR SERVICE

How are you supposed to keep up a positive attitude when you constantly get Drs like that. I had Dr Hopeless who was the first pain specialist I saw, Dr Dumb who we just spoke about and well.... sooo many others it is hard to recall. ARGHHHH I am just getting so frustrated it is unreal. This is just the cut down version of the stupid waste of my life appointment!! 

I think that will be all for today,

I hope you are having a good day and that I haven't wasted any of your time...

Until next time

Stay Strong

<3

Mirror Mirror On The Wall ♫

Hey All My Lovely Readers,

 

I must once again apologise for the lack of posting. I know I say I'm going to post more and I really do mean it, it is just that it takes concentration of which I do not have right now. I just can't seem to focus on anything from a period of time and that is once I have actually found an inch of energy.
Sleep is not exactly my friend right now. I forgot what it is like to have a decent night sleep and in turn it effects me day to day with lack of energy and concentration. Not only that it totally messes with my mood and mind set like I have mentioned before. Sometimes and by sometimes I mean most the time, all I want to do is lie on the bed with the dog all snuggled up either doing nothing or listening to music or good old youtube. Just not in the mood to interect with people..... it takes so much energy. Even this paragraph, I keep stopping and starting which is taking forever HAHA!!

Since last time, the bloods came back clear and my pain levels continue to increase. I honestly think bloods are useless these days. Then again, I didn't really have much gluten in me to give it a fair chance. I'm still keeping a gluten free diet (most the time besides when I'm naughty but then suffer the consequences (donuts). Oh my gosh I have to tell you this, it's so funny. So, I have been craving a sugary jam donut A LOT lately. So much so that when I was cuddling the dog, I could smell donuts.... FRESHLY BAKED DONUTS. I felt like the dog smelt like donuts.. like what??? My mum thought I was insane and kept telling me he actually smells like he needs a shower HAHA... Oh lord. What is my life coming to!! I'm going to need to get to the gym with all these cravings LOL :)

Do You Agree?

 As per usual, my mind is all over the shop. I keep getting more possible conditions that are pretty much an obbious but just need to be confirmed now. I think I'm up to maybe 4/5 different conditions now and guess what they all have in common...... there's no cure just ways to attempt to control them and keep me as comfortable as can be. So I have my Gastroparesis as we know and I believe I have mentioned EDS to you before as well. EDS has many other illnesses that can occur due to that so basically it is screwing me over. There are also talks or POTS as well as TMJ which is to do with my clicky and sore jaw. And then there's the gluten whatever it is at the moment. POTS is to do with things like your blood pressure going up and down if you're sat down for a while or if you then stand up. It can cause hot flushes like I get as well. Once I know more about it I am going to write a whole post on it. :)

I feel like I am doomed as every time we figure out one condition, we find another one that I might have. I'm falling apart . Why can't life be easy??? I am trying so hard to remain strong and positive, but it is just soooo hard to do.
I look at my reflection in the mirror, and I see a 'normal' person... nothing looks different but if only my insides could be seen by everyone.. people might then start to have a clue how I feel day to day. It's weird because, my weight 

Don't worry about what others look like, look at what
you look like and be comfortable with yourself!

has always been so up and down because the Gastroparesis that I'm always aware of what my body looks like and I have become so used to being so small and skinny. It sounds silly but everytime I start (and have) put on a bit weight, I suddenly feel so big like I have a big stomach. Don't get me wrong, I don't think I'm fat, but with all the changes my body is constantly doing, it really makes me aware and kind of uncomfortable with how I feel and how my clothes fit which was never even in my mind before all of this. At the end of the day, when I look in the mirror at myself, I shouldn't be thinking about what others would say or think, I'm in affect talking to myself about myself. I don't need to impress anyone else and only need to be comfortable and happy with in myself. I still feel like when I eat, I am eating so much especially as I try and pick at things and do it small amounts but more often. I feel like all I am doing is eating and that I am such a pig and eating so much, when, it reality, I am still eating no where near enough and not the right things my body needs. I am seeing a dietcian in a couple weeks, so hopefully she can help me find the right things that I am able to eat that fits into both my difficult diets.

On a plus, I have a new job. I have quit my job after 5 and a half years of being in the same Hotel. I now get to work in the Studios helping with Big Brother. Although it is only a 3 month contract, theres's so much potential to make contacts or find something through it. Or, even just for a fresh start. I think that is what my mind needs right now. Something new to focus on around different people and a different environment. I really think it will help my mind set by gaining experience in something I really enjoy and even studied at one point in my life. My new job starts on April 20th which is sooooo soon. I'm very excited to start a new chapter in my life and maybe my health will play along and be nice to me and give me a break. HAHAHAHA who am I kidding?!?!


Well, that is all for now.... I wont bore you any longer
Have a good day and don't forget to
a) check out my YOUTUBE
and b) keep leaving me any comments with ideas of things you would like to know more about that I can make a post about.

Untill the next time

Stay Strong
<3