Can you believe how quickly this year is going? feels like only yesterday we was wishing one another a happy new year, it’s crazy.
Anyway, since my last update I’ve had appointments here, there and everywhere for a multitude of things which have been a rollercoaster of emotions. I quite honestly feel like some days blur into one another and the nights are no longer for sleeping!
Life the last three months has definitely been a bumpy ride of positive and negative feelings, news and appointments as you’ll be able to tell as your reading the updates below;
Ear, Nose & Throat Appointment – 15th Of May;
Ever since I was born, Ive suffered with my ears. From one month to the next you could guarantee that I’d have ear infections and have to be on antibiotics constantly. This continued on throughout the years until now, yet things with my ears over the last year or so worsened when my medications were upped and dried out my skin. Yes, the inner ear can become dry! due to it becoming dry inside the ear, it became itchy meaning I was constantly itching it to get some relief, which then lead to pain, bleeding, scabs and constant inner & outer infections.
I was referred to Ears, Nose and Throat after numerous trips to my GP in search of some relief, It got to the point that I become resistant to all antibiotics, creams and sprays! After going through my case with the consultant up the ENT clinic, he believes that my inner ears could be sensitive to water, therefore the infections could be my ears fighting against the water rather than the infection. He suggested buying earplugs for washing my hair, showering, swimming etc. Then for the flakiness/dryness, he prescribed a treatment which is originally used for your scalp yet he says it works wonders for the type of problems I’ve got in my ears. Let’s just say, it burns like hell when you place it in your ears but it does seem to do the trick! If my problems worsen, I’ll go back and see him but for now we’ll carry on as we are.
Echo Gram Scan – 18th Of May;
In my last blogpost, I wrote that I’d been to see my cardiologist who wanted me to have a Echogram done due to the problems/symptoms I’m having with my heart.
A echocardiogram is a type of ultrasound scan which is used to look at the heart and nearby blood vessels. This means a small probe is used to send out high-frequency sound waves to create “echoes” when they bounce off different parts of the body. These echoes are then picked up by the probe and turned into a moving image on a monitor whilst the scan is being carried out. Then a cardiologist will be sent these results to analyse.
Whilst the cardiac physiologist was doing the scan, she kept mentioning that my heart rate was high despite the fact Im on beta blockers. She monitored it for a good hour and whilst monitoring, she was noticing that my heart was constantly skipping a beat, to which she said this could be a heart murmur (I’ve been told this before via overnight ECG). Unfortunately we won’t know anymore until we see my cardiologist.
Sussex Eye Hospital, General Eye Test – 22nd Of May;
After meeting with my Neuro-Ophthalmologist we were told that IIH can cause blindness, thankfully mine hasn’t got to that stage yet BUT my eyesight over the last two years specifically has got increasingly worse. Therefore, she recommended I go and have a general eye test again, which we already had booked.
I have a yearly check-up with the consultant at the Sussex Eye Hospital, who does my eye test, checks for any general worries (from her area of expertise) and tells me wether I need new glasses or not. Basically, does what specsavers does but up the hospital! Anyway, due to my eyes getting increasingly worse every appointment, I tend to have to have more tests done every time to make sure I’m getting the right treatment and glasses.
My consultant noticed after the tests were carried out that my left eye had gotten worse (as had I, this is the eye my migraine hovers over which causes increased pressure etc) therefore she decided that she’d up the strength in my left lens and keep the right as it is to see if that makes any difference to my symptoms and sight. Plus, that meant a snazzy new pair of glasses;
Gastric Emptying Study – 6th Of June;
This test has been spoke about by both my consultant in Brighton and London! A Gastric Emptying Study is a procedure that is done by nuclear medicine physicians using radioactive chemicals that measure the speed at which food empties from the stomach and enters the small intestines.
5 years in January 2019 I haven’t been able to swallow solids and my stomach is worsening with what it can and can’t tolerate liquid wise also. Although, I’ve spent those years having test after test which have diagnosed paralysis of the oesophagus and stomach, my consultants wanted to do this particular test to see what my emptying process is like.
Let’s just say, this is one long test and quite honestly, I was glad once it was over. I firstly had to down a cup of soy milk which had radioactive dye in (and try not to throw it back up), then lie on the machine for the next 1-2 hours. In that time, the machine takes photos of the radioactive dye that’s in your stomach every 10 minutes to track its movement throughout, until it hopefully passes through to your intestine.
You don’t get the results there therefore I have to wait until my next appointment with my gastro consultant to know the next steps etc.
Chest Medicine / Sleep Apnea Clinic – 3rd Of July;
In my last post, I had met with the Sleep Apnea consultant who after a brief chat and scoring test, told me that it’s likely I have Sleep Apnea as my symptoms are severe.
Anyway, he still needed to refer me for testing before I could have any form of treatment! Around May time i had the Sleep Apnea Test, which is an overnight home study. This device measures your breathing, blood oxygen levels, heart rate and other body information. I was given the machine for three-four nights for testing.
Once the testing was done, I took it back to the hospital to analyse. Usually they get back in touch with you within a couple of weeks in which I didn’t hear so I generally took that as I didn’t have Sleep Apnea. Then I received a letter to go and see my consultant again but I just guessed that was for other options on how to deal with snoring.
Furthermore, once I got to the appointment, I actually was meeting with the Sleep Apnea nurse who helps set people up with their machines – this was quite a shock that’s for sure. She continued on to say that my test results came back as severe and that my breathing stopped repeatedly throughout the night, resulting in needing a machine ASAP! Let’s just say, this machine isn’t the easiest to get on with – I have to wear it throughout the night and for any afternoon naps. Woo!
Neurology Appointment – 30th Of July;
Since my last update, we received a letter to say that my actual Neurologist has left and I’ll be put on a waiting list to be seen by a different one. Gutted didn’t even cut the feeling I felt as the Neurologist i had was amazing, supportive and went out her way to do everything for me. But what can you do?
During the lengthy wait to see the new Neurologist (I hadn’t even received a date) my migraines were getting worse by the day so my mum ended up ringing up the Neuro department asking for an emergency appointment. Thankfully they gave me one out at the Polyclinic!
I finally after what felt like weeks got to meet my new Neurologist, thankfully he’s a really lovely bloke! Anyway, we went through everything that’s happened over the last five years (yet again) and I had an assessment on the reflex’s in my legs which came back the same as always.
Furthermore, he’s going to be drawing me off the migraine medication I’m currently on – this has to be slowly due to withdrawal symptoms etc. Then, he’s put me forward to start steroid injections which get injected into the back of my neck. These should hopefully help the migraines, but if they don’t after a few months, he’ll try and put me forward for funding for Botox. He believes my body wouldn’t handle surgery for my Arnold Chairi so we’re hoping these injections help! He then went on to say that he’s referring me to two hospitals in London which specialise in Neurology, he believes I’d benefit from seeing them as they are specialised in cases like mine (with multiple illnesses). They also may have the benefit of rehabilitation, that’s something we’ll discuss further once I’ve seen them.
We’ll see him again in three months…
Orthodontist Appointment – 21st Of August;
Orthodontist appointments is actually something I never write about on my updates because I generally don’t think it’s worth it, but it’s a very special update from a orthodontist point of view today, can you guess why?
After 7 years of braces hell, I finally got to be free! I have honestly been through one tough ride over the last seven years with the treatment to get my teeth perfect, there not quite there yet, but by the beginning of next year, I’ll have a full set of perfect nashers!
Your most likely thinking, why the hell did you have braces for seven years? most of the time I asked the same question. I had my four baby canine teeth taken out in early 2012 and they never grew back, so I ended up have three more surgeries to try and bring them adult canines down. Three of the four are down, the fourth is being taken out early next year and I’m having a false tooth put in. Also, I have extremely short roots which means that any movement with my teeth has to be done slowly otherwise my teeth could fall out! I had countless fixtures, X-rays, stitches, when I had surgery they hit a nerve and my entire lip dropped meaning I couldn’t move my mouth for weeks, nerve damage and endless pain.
Yet, I wouldn’t change any of it as my teeth are near on perfect today. My orthodontist never gave up on me and my teeth which I truly appreciate. I’m currently awaiting my referral for surgery which will be in January then I should be done, whayhey!
General Health Update / Life Update;
It’s crazy to think that on the 11th of this month, it’ll be 5 years since I become ill. 5 WHOLE YEARS! since my life was turned upside down and never to be the same again. Quite honestly the feeling is indescribable to know that my whole body shut down so quickly and it’s only gotten worse as the years have gone on. I’ve been diagnosed with illnesses which are rare, painful and lifelong. Illnesses which will only continue to worsen as the years go on and treatments are extremely limited which makes everything so much harder. Everyday is filled with pain yet somehow, it can feel incredibly rewarding getting through your hardest days! You get a new outlook on life, a positive one and it just motivates you to prove every doctor, everyone who ever doubted you wrong. I’ve met some of the best people due to our journeys with our illnesses, lifelong friends and having people in your life who truly understand the struggles you go through daily is something I’ll always appreciate. 5 years of total hell has also been 5 years of learning and rewards!
Health wise, I can quite honestly say, nothing has changed! Despite constantly hoping and asking consultants if/when things may begin to get better, I’m just knocked back down again with the answer “this is for life”.
My pain is possibly the biggest factor in my life, despite being on pain medication, it just doesn’t touch the sides! Some days I can wake up and deal with my pain, whereas other days it can leave me completely bed bound unable to move, there’s basically no in-between. Despite the fact I’ve learnt to live with my pain, it’s getting worse daily and it’s unbearable, which really can bring me down. My doctors are doing all they can (apparently, I don’t quite agree) to try and get me comfortable! I’m just really hoping for a medical miracle to come my way *fingers crossed*.
Despite my health being a nightmare, we’re heading into the Autumn soon enough and I couldn’t be happier! If you know me, Autumn is my all time favourite season as it’s so crisp, fresh and cosy. We’re heading into the best time of year and I’ve got so many exciting things upcoming which I can’t wait to share with you all. Make sure your following all my social media’s so you can see lots of pictures;
That’s the end of today’s update! If you made it this far, you generally are such an supportive reader (and deserve a medal as I do ramble on) and I really appreciate you taking the time to be there for me during this journey. Thank you so much.
I’m sure I’ve got many more appointments in the pipe line for the next couple of months, so I’ll be sure to keep you up to date in my next update! I hope you don’t mind my posts being this long, I genuinely do just want to cram as much information as I possibly can about each appointment so you are aware of what’s going on in my life and I can also raise awareness for my illnesses.
Sending you all tons of love and hugs as always,