Last Hope Saloon; Let's band together and fight

That feeling you get when the doctor's door closes in your face...

Apology

Firstly please let me start by apologising for the delay in writing this post, unfortunately I have yet again been battling an acute flare up of Melkersson Rosenthal Syndrome and as such have been completely unable to write anything remotely coherent.

I also yet again had to miss out on something that was very important to me; a good friend had a surprise baby shower and my very inconvenient flare up made sure that I could not attend! MRS is forever getting in the way of my attempts to live my life :-( 

I am now going to attempt a post, that I have had no choice but to start writing fresh, as I had almost finished it when the computer decided to delete the whole thing! Wonderful! It really isn't my week at all! lol

Doctors Visit - Help?

Painfully swollen lips and face

So... I did what any other self respecting British Citizen would do when they are very poorly, suffering and need help; I went to see my General Practitioner (family doctor) and asked for his expertise.

It would seem that this particular doctor, like most, had no expertise at all when it came to my condition. He advised that after my last visit, when he prescribed Prednisone Steroid tablets to take on top of my Hydrocortisone Steroid tablets, the practice had received a letter advising them against its use, with regards to me, from Dr Vyas (my chest physician who co-ordinates my care due to the fact there is NO specialist in MRS).

He told me that they had lost this letter, which let me tell you; does not inspire confidence! However I gave him the benefit of the doubt and looked at him across his desk hoping he had something up his sleeve or would contact someone for advice who did.

When a doctor says they can't help you; that leaves you feeling very alone

It turns out that I should learn a very important lesson as a patient with a rare disease; don't hope! He threw his hands up in the air rather dramatically and said that he didn't know what to do, he could think of nothing to help me and he didn't think anyone else could either.

So his plan... in all his great Doctor's wisdom he had no plan whatsoever, in fact he decided the best course of action was simply to do nothing and send me home in the exact same state of disrepair as when I hobbled into his office!

New symptom

I had also advised the GP that I had a new and disconcerting symptom, or believed that I did anyway, and asked him to see what he thought. Every time I swelled with my flare up my nose would feel blocked, like it was swollen inside.

The GP did actually use his torch and have a look, he advised that yes, I am correct, the inside of my nostrils is swollen and the tissue looks the same as my swollen mouth.

The pain my illness causes can be excruciating, the swelling unsightly, I am forever getting new symptoms but less help

Again he took no action with regards to this matter, not even informing Dr Vyas of my probable new symptom.

Now I will explain why this particular situation is far from ideal for me, I have Sleep Apnea and Type 2 Respiratory Failure due to which I use an NIV machine overnight to keep my airways open and to circulate the Carbon Dioxide correctly, as my body fails at both these simple tasks.

How the nasal mask is worn

(I think you can probably tell by looking at the above image that using an NIV machine is no fun and infringes on a good nights sleep as it is due to the uncomfortable nature of being attached to a breathing machine all night. Add to that the fact that I wear a nasal mask and I am certain you can appreciate the difficulties I face when my nose is blocked and/or swollen.)

The mask fits around my whole head, it is tightly fitted and constantly blows air into my airways

When you retain Carbon Dioxide it becomes a poison and if it builds up too much is deadly, I stop breathing again and again during the night as my airways close so using my NIV machine is vital. 

Wearing a nasal mask with a blocked/swollen nose feels like you are suffocating

However it is a nasal mask and as such I am unable to breathe as the inside of my nose is now swollen much like when you have a cold. So now it isn't just the pain that is keeping me awake all night, now I can't breathe either. I have not slept for more than a few hours a night for over two weeks now and that is making me feel ill in itself.

What the NIV machine looks like, it is also humidified meaning it contains water, which also blows into my airways to keep them moist

Medical History

When I told him my medical history, which he asked for rather than read through my mountain of medical notes it went like this:

• Swelling of my lips, face, eyelids, neck, epiglottis, larynx, thighs, legs, ankles, feet, arms, hands, fingers
• Swollen Subcutaneous Nodules in my stomach and back
• Swollen glands all over my body
• Extremely swollen parotid glands (saliva glands) causing me to have very little saliva in my mouth
• Swollen gums
• Mouth sores and ulcerations
• Split skin on my lips due to the swelling (often gets infected as low immune system)
• Pain all over my body due to MRS and the swelling pushing on my nerves
• Breathing difficulties because my airways swell
• Paralysed Right Hemi Diaphragm
• Sleep Apnea and Type 2 Respiratory Failure
• Chronic Asthma
• All of the above issues combined causes severe breathing difficulties
• Insufficient adrenal gland function, meaning I don't produce steroids or hormones anymore myself; I wear hormone patches and take a controlled dose of Hydrocortisone steroids daily
• Type 2 Steroid Induced Diabetes (Insulin Controlled)
• Peripheral Neuropathy (damage to the nerves outside the Central Nervous System) I get shooting and stabbing pains as well as numbness in my extremities
• Osteoarthritis (causes painful and stiff joints)
• Osteopenia (lower than normal bone density, basically thinning of my bones)
• Due to all of this is it surprising that the last thing on my list of ailments is; Clinical Depression? Well yes, I have that too and am on medication for it, 40mg of Citalopram every day.

So when the doctor looked at me with a blank expression on his face and ushered me out of his office, I think I almost heard his sigh of relief as the door closed behind me. 

I was left to go home like this; no treatment, no help, just physical pain and emotional despair

My double appointment was unnecessary as it happens, as no sooner than I had listed my medical repertoire and advised that he could add my nostrils to the growing list of my swollen body parts he told me he couldn't help with my current flare up and in panicked haste practically chased me out of the room.

In fact I am sure he called reception after I walked out of his office to make sure I had exited the building before he dared leave the room to call his next patient through. (You may laugh but I'm almost serious)

Utter despair

I left with Amy, got in our car, we drove over to the chemist across the road so that she could pick up my prescription of Insulin and the like. I couldn't bottle it up any longer; I cried, no I sobbed, really sobbed. I don't do that often but when I can take no more, when I am at my absolute limit the dam bursts and I can't control it any longer.

I can't begin to describe the feeling of utter despair that you get in the pit of your stomach and the panic that grips your chest when a doctor tells you they don't know how to help you, that no other doctor would be able to help and that what's worse; he wouldn't even attempt to try.

It made me feel lonely and isolated because there was no one left on the battlefield but me and my enemy; MRS. I was overwhelmed by the fact that MRS had all the weapons and artillery and I had none. 

I was facing my greatest enemy alone and unarmed without any backup at all. That is a truly frightening place to be, when a doctor tells you they don't know what to do about your illness your stomach and chest tighten, you feel sick and dive straight into the panic attack of all panic attacks. 

Your heart races and your stomach clenches, there is no help coming... You are alone on this dark, frightening battlefield and the enemy is already upon you.

So... I cried, a LOT, I was hurt and angry that he didn't even humour me, he made no attempt to get advice or to tell me that this wasn't the end of the road, that there was some hope, that he would email or write to Dr Vyas, for example, and ask what to do. He could have picked up his phone and made inquiries but instead it remained snug in its cradle, undisturbed.

For once I would love a doctor to say that they understand

Of course I have come across this situation before, I dare say every patient with a rare disease has had the same problem, they too will have taken a seat opposite a doctor who knew less about their illness than they did. This probably happens on most occasions and like now on some of those occasions the doctor would have been less than helpful.

It doesn't matter how many times this happens to you, each time it leaves you feeling crushed and alone.

Believe what you read on the Internet?

I want to cover this next topic because I have come across this issue many times as a person with a rare disease and I know many if not all of my fellow MRS sufferers have the same problem; Google-Dependent Doctors.

Hand swelling is yet another symptom I get time and time again that is not stipulated as an MRS symptom when a google search is undertaken

It seems to have become common practice for doctors and nurses who are unaware of my condition to use google as their research tool, not only that but they tell me that's what they have done too. Then they expect me to trust their methods of care?! What?! Seriously?! Did you get your medical degree by collecting Cereal packet coupons?!

This does not give you reason to trust their treatment decisions at all, I understand that doctors and nurses will not have heard of ALL illnesses however surely they could use a more reliable research tool than google, even asking me or another doctor who has already had experience dealing with me would be preferable.

The information that a google search throws up is at best outdated, it is also incorrect and under-informed making it dangerous as doctors who rely heavily on the information they glean from it could treat MRS incorrectly and not expect some of the dangers that they face treating a patient with it.

The top two search results give the following description of MRS:

Melkersson–Rosenthal syndrome (also termed "Miescher-Melkersson-Rosenthal syndrome"), is a rare neurological disorder characterized by recurring facial paralysis, swelling of the face and lips (usually the upper lip), and the development of folds and furrows in the tongue.

(Wikipedia)

"Melkersson-Rosenthal syndrome is a rare neurological disorder characterised by recurring facial paralysis or palsy, swelling of the face and lips (usually the upper lip), and the development of folds and furrows in the tongue."

(Facial Palsy UK)

There is so much more to MRS than the above descriptions of the illness and I have come across doctors and nurses who refuse to listen when I tell them that. They look at me like I am some crazed lunatic escaped from the nearest mental asylum when I tell them my other symptoms that don't neatly fit within the brackets set by a quick google search.

When I try to explain the pain I am in they appear to believe I am dependent on drugs and have a very vivid imagination, which I utilise in my efforts to feed my habit on the NHS budget.

The pain I suffer when I have an MRS flare up is very real and undeniable

I know for a fact that I am not the only MRS patient with this problem, as since Amy found the MRS Facebook support group I have read stories very similar to mine. People with the exact same problems that deviate from the google search descriptions of MRS.

We not only have this awful rare disease to battle but the small minds that refuse to expand further than a quick Internet search too.

I have been given permission to post the following two images of fellow MRS sufferers so that you can see other people with my illness.

Swollen right eyelid

Another lady with a very swollen eyelid, causing her eye to almost close involuntarily

The ladies in the above images suffer greatly just like I do, there are now 149 worldwide members of the Melkersson Rosenthal support group all of whom either have MRS themselves or know someone who does. That amounts to a lot of other people suffering along side me.

The lady in the first picture also suffers with another rare condition called Ramsay-Hunt Syndrome, if you would like to know more about her and the illnesses she struggles with you can visit her GoFundMe page, where you will also be able to make a donation, towards her ongoing medical bills etc, should you wish to.

I also have a GoFundMe page set up, which is there in an attempt to raise the funds for me to undergo a second round of Stem Cell Replacement Therapy so that I can solidify the results I have and gain new ones and of course to stop me backtracking and ending up pretty much bed-bound again. 

There is also another lady I know via the support group, whom I have been talking to for some time now, she is a lovely person with two young children who desperately need their mummy to get a bit better so she wont miss any milestones again like her son's first day of nursery due to awful flare ups of MRS. She is trying to raise funds for Stem Cell Replacement Therapy the same as what I had via GoFundMe and is almost at target, she just needs that final push.

Any help for one or all of us would be greatly appreciated and could very well prove life saving but will most definitely be life changing, so thank you to those who have donated and anyone who will donate in the future.

Stronger Together - Let's make a change

I am fed up of there not being correct, up-to-date, readily available information out there about MRS and what we have to deal with on a daily basis. It is something that needs to change so that we receive treatment based on what our condition is actually capable of doing to us. 

We need to be better understood and we need help but in order for us to be heard we need to make noise. We are so much louder when we all shout out together.

It would be great if any fellow MRS sufferers who read this could add a list of their symptoms to the comments section at the bottom of this post.  If you have any stories about your brushes with knowledgeable doctors and nurses etc please feel free to share. I want to try and get the information readily available on the Internet updated correctly and to do that sufficiently I need your help. Please post anything you feel comfortable with and anything you'd rather not post but would like me to know you can email to; chrissyjade18@icloud.com Please also feel free to email me any pictures that you wouldn't mind included in the blog so that others can see a collection of people with MRS and the affect that it has on us. I think it is vital to our ongoing care that we do something NOW to change the information out there, to get someone to sit up and take notice of us and our suffering. It is of paramount importance that someone medically trained to research MRS and find new and effective ways to treat it. We need a cure or at least an effective and available treatment. The only way I see this ever happening is if we collectively speak out and make ourselves heard! Make it so we cannot be ignored, not just MRS sufferers but all people with all rare diseases. We are by fate in minority groups, we are spread world-wide making us appear even more alone in our fight, as would have to cross oceans to put more than a handful of us in a room together. But our voices will be much louder if we all shout in unison; we need to demand help now not only for ourselves but for the children that will develop MRS and the people not yet born who will have to carry this dreadful burden too. Rare diseases are very lonely illnesses; there isn't an aunt, a cousin, a brother, a sister, a close family friend etc who has it too, who you can compare notes with, who can be an understanding shoulder to cry on when it gets too much.  We have our friends and family of course but having someone who knows exactly what you are going through without you having to breathe a word is not something most people with a rare illness have. In fact we pretty much face it all alone, without much medical help or expertise. You can cry for what you don't have or you can appreciate what you do have and fight for what you could have and if we undertake that fight together then I am certain we can and will achieve something wonderful.

It would be great if any fellow MRS sufferers who read this could add a list of their symptoms to the comments section at the bottom of this post. 

If you have any stories about your brushes with knowledgeable doctors and nurses etc please feel free to share. I want to try and get the information readily available on the Internet updated correctly and to do that sufficiently I need your help.

Please post anything you feel comfortable with and anything you'd rather not post but would like me to know you can email to; chrissyjade18@icloud.com

Please also feel free to email me any pictures that you wouldn't mind included in the blog so that others can see a collection of people with MRS and the affect that it has on us.

I think it is vital to our ongoing care that we do something NOW to change the information out there, to get someone to sit up and take notice of us and our suffering. It is of paramount importance that someone medically trained to research MRS and find new and effective ways to treat it. We need a cure or at least an effective and available treatment.

The only way I see this ever happening is if we collectively speak out and make ourselves heard! Make it so we cannot be ignored, not just MRS sufferers but all people with all rare diseases. We are by fate in minority groups, we are spread world-wide making us appear even more alone in our fight, as would have to cross oceans to put more than a handful of us in a room together.

But our voices will be much louder if we all shout in unison; we need to demand help now not only for ourselves but for the children that will develop MRS and the people not yet born who will have to carry this dreadful burden too.

Rare diseases are very lonely illnesses; there isn't an aunt, a cousin, a brother, a sister, a close family friend etc who has it too, who you can compare notes with, who can be an understanding shoulder to cry on when it gets too much. 

We have our friends and family of course but having someone who knows exactly what you are going through without you having to breathe a word is not something most people with a rare illness have. In fact we pretty much face it all alone, without much medical help or expertise.

You can cry for what you don't have or you can appreciate what you do have and fight for what you could have and if we undertake that fight together then I am certain we can and will achieve something wonderful.

The hospital became my 2nd home

What it really feels like to live half your life in hospital

When your cupboard of medications fails: It's off to hospital :-(

Staying in hospital is not 'putting your feet up' and the 'chance to get some rest' it's sharing your living space with a group of strangers, most of the time much older than me with issues like dementia and incontinence.

Yes over the years I have made some lovely friendships and connections with people I've been in hospital with; when you are that poorly and together, living in such close proximity, for days or weeks on end you can really build a strong bond, that is undeniable.

I have laughed with people until my stomach hurt, in the most difficult of circumstances, when you feel at your worst it makes such a huge difference to have someone there who you can talk and laugh with.

There have been times that another patient has decided to be abusive because I was laying there all swollen up and looking terrible and their minds were not what they should be or worse they were just taking their hurt out on me. Straight away I would be back to my 'victim of bullying years' and couldn't cope, after all I was already feeling pretty damn awful.

If a patient decided to make cruel jibes; I would go straight back to my 'victim of bullying days'

There's the times that the nurses are so busy that I get my painkillers late and I would be in agony again, at those points I would try so hard to remind myself that they couldn't help it, that it wasn't personal.

However when you are feeling so vulnerable and hurting so badly your mind goes on it's own journey of self destruction and you think the world is out to get you and that no one cares, that you are just a nuisance.

I convince myself that because I have this rare illness and my lovely, loyal doctor has put me on his Respiratory Ward, that the nurses and other doctors see me as some sort of impostor, that I don't really belong there and they are merely waiting for the first opportunity to 'kick me out.'

There are the times that I have seen doctors and/or nurses who have never heard of Melkersson Rossenthal Syndrome, who at best, or maybe worst depending on your viewpoint, google it and come back at you with 'oh yeah it's swelling of the face and lips' - try telling that to someone who has led the life I have, to the hundred or so other MRS sufferers in this world; no it is not merely 'swelling of the face and lips' we only wish it was!

Even my hands swell, they hurt immensely and I can struggle to even hold a pen

Swollen face and lips would be bad enough to some people, those who hide away from the world because of a pimple, a messed up hair dye, a fake tan catastrophe... but to us it would be a Godsend because the information readily available on MRS at the touch of your fingertips is both outdated and extremely misleading.

It is so much worse than mere facial swelling, it is a soul destroying mixture of pain, feeling dreadful all the time, being swollen from head-to-toe, itching everywhere, not being able to stop passing urine (very annoying), and more besides...

Feeling as though you are respected is so very important,
knowing someone believes that what you have to say matters

Don't get me wrong you do get the good medical professionals who say; "you're the expert, I'll be led by you." Sometimes this is a good thing to hear because you do know yourself and the illness better than the person stood at your bedside.

At the same time it would be amazingly comforting if that person instead said; "Oh, you have Melkersson Rossenthal Syndrome, yes I know the illness well, awful isn't it? But hey I know exactly what to do to clear this flare up right up. Leave it in my very capable hands but if you have any suggestions feel free to give them, I'll be only too happy to listen." Now my fellow MRS sufferers and others with rare illnesses; wouldn't that just be the dream?

Instead, they will sometimes argue until they are blue in the face that the treatment you are suggesting is not right or that you can't possibly be in that much pain.

Sometimes they are even downright sarcastic or practically accuse you of being there for the drug high! Erm no, my head feels like it is going to explode, I can barely open my eyes, which by the way are blurry as hell.

My face and lips become so painfully swollen, it feels like my skin is on fire

My face is so painfully swollen it feels like there are small people underneath the skin trying to push it off from the inside out, my throat is so swollen I choke if I try to drink but my saliva glands are also very swollen so they are therefore blocked; meaning my mouth is as dry as the Sahara Desert.

My feet swollen while in hospital

My whole body is swollen, which gives me unbelievable pain everywhere, I feel nauseous to the point of 'quick pass me the sick-bowl' and I am so dizzy that if I try to stand I think, between that and the pain in my legs and feet, you will have to call a couple of burly porters to scrape me up off the floor.

"So bloody well listen to me please... I am 34-years-old, I have had this illness since I was seven-years-old, that's a whole 27 years more experience and knowledge of this specific illness than you have. I am sure you did not qualify to be a doctor or nurse by simply googling everything and coming back with the first thing it threw up? You heard of MRS about 20 minutes ago, maybe less, so how do you possibly think you know more about it than someone with that amount of 24 hour, seven day a week, experience and the doctor that has been looking after me for years and has had the time and the inclination to do real, time-consuming, research?"

My thoughts; the words I feel so tempted to speak time and time again...

Then there is the issue of you being woken all through the night by one thing or another, lights going on and off and by the way they are never fully off, they are simply dimmed.

...So note to anyone staying in a British hospital and possibly ones abroad too, ask for a sleep kit; consisting of eye mask and ear plugs! They have been a real sanity-saver for me at times over the years; 'trust me I'm a regular!'

You have patients wandering aimlessly and being led back to their beds by dedicated but exhausted nurses, you have the constant shouting of patients with Dementia, it is so terribly sad to see but at 3 am after no sleep at all, you would give anything to move your bed to the toilet down the hall, where at least it is quiet and in some instances smells a little better too...

There's the inconsiderate patients who have no excuse to do so but keep their light on, munching sweets and such-like, rustling wrappers, have their televisions on so loud that without the 'sanity-saving' ear plugs can be quite easily heard as if it is on for all to 'enjoy'.'

Then there are the obligatory blood sugar checks, blood pressure and observation checks, medicine rounds that sometimes get delayed due to an emergency and so be prepared to be woken at all hours through the night to take tablets or be hooked up to an I.V. drip.

Bedtime is all the time when I am in hospital as just being there, on the amount of medication I am on, in that environment, makes me exhausted. That coupled with the usual lethargy caused by my MRS and I am a 'barely able to stand on my own two feet zombie' 

I am often on the same ward when I go into hospital, luckily for me I have an amazingly dedicated doctor and kind, genuine man looking out for my interests, Dr Vyas. He is actually a chest physician but as he tried to locate a specialist in MRS somewhere, anywhere, in the world and couldn't he took me under his wing, knowing that no one else would and he takes care of me, even though he is certainly under no obligation to do so.

I am blessed to have met such an amazing doctor and human being, one who is prepared to go above and beyond for his patients, who I trust implicitly to do what is right by me as a patient and as a person.

He makes sure that I am placed on Ward 23, Royal Preston Hospital, when necessary, his ward, where he can look after me and where his dedicated and lovely nurses work. Over the years I have grown close to many of the nurses on that ward, which helps no end with my stays there.

I know that they genuinely care, in moments of self-doubt I wonder whether some wish I wasn't there as I am a difficult patient, not your average case for that ward. However when I think about it, when I consider that I could be a truly lost soul, a faceless patient file, a number on a chart; I know just how lucky I am to have them all and to have Dr Vyas fighting my corner.

It is lovely to get visitors and you spend your morning counting down the minutes until they are due to arrive. I miss Amy so much when I am in hospital, but then when she/they are there I am often falling asleep, unable to keep my eyes open no matter how hard I fight it and I feel guilty because I make her/them feel guilty - yes being in hospital is also a real guilt-fest! Guilty because of that and guilty because I am leaving Amy home with only our Labrador for company.

Amy and Laddy our Labrador; he keeps her going when I'm away

I know that she can't sleep when I'm not there, that she doesn't eat properly and that she walks to and from the hospital every day come rain or shine or even sleet/rain/snow/hailstone/ice/gale-force winds etc... you get the point...

Nothing and no one will stop her making that trip, even when it has meant coming to another city to see me and travelling for three hours there, then three and a half hours home again and all for a pitiful one and a half hour visit :-( yes guilt-fest yet again but lovely all the same!

Amy always had the faith to keep going; no matter what she was there

I always reach what I call my end-point, which is the time when I know I cannot stand it for one more day, I just can't bare it a moment longer, I have reached my absolute limit, used all my resources of emotional endurance, I miss my Labrador to the point of distraction for example; now where is the sanity in that?! haha

I feel like I am missing out on life yet again and of course; I am, there's the birthdays I miss, mine, Amy's, my nephew's... and so on... there's New Years Eve; when Amy and I heard the chimes separately, me in a hospital bed in Resus struggling to breathe and Amy at the Accident and Emergency reception desk checking me in... (That was very depressing as a start to the New Year :-( as I am sure you can imagine.)

There's my nephew's school productions, prior to being so poorly I had attended every one, now I am lucky if I attended one a year! The family meals out... the list of things I miss by being in hospital and/or being poorly is depressingly endless... At my end-point  I always, humiliatingly, end up in tears; it is an overflow of emotions when the body just cannot contain your distress any longer; that is how I see it anyway.

My nephew, Bradley, with Laddy; I miss them so much when I'm in hospital

Trying to occupy yourself in hospital 

They have just added WiFi to the wards in the Royal Preston Hospital and I can't tell you what a life-saver that was during my last admission, before that I would perhaps attempt to read a book, but when your mind is foggy and you are exhausted beyond measure that is not an easy task!

I would draw, colour, do arrow-words, read the odd magazine, chat to another patient; if there was anyone that I could chat with, but mainly I would put my ear plugs in, my eye mask on and go to sleep. So yes WiFi is a big thing, the televisions you hire in hospital being so expensive that I long ago decided I wouldn't pay for them anymore.

Hospital Tip (For UK Citizens)

Tid-Bit: What people in England often are not told though, so I will mention it here for your sake's, is that if you simply register your details over the phone then the television is free for a few hours in the morning (channels 1 - 5), the radio is free all the time and you get free calls to 01 and 02 numbers! Worth knowing!

Hospital Scents... hmmm

One of the worst things to endure in hospital, something that people generally are too polite to mention but is a real down-point; is the smells. Whether they be the overpowering antiseptic scent of hospitals in general, the meals with the plastic covers over them that seem to create a scent all their own or the smell of human excrement; it is cloying, it is strong and it has the ability to absolutely knock you sick...

I'm sorry if I offend anyone, genuinely I am, however it is an honest truth about what it is like to stay in hospital for any length of time.

If you are in for weeks again and again then no, you do not become immune or accustomed to it, what you become is overcome with the desire to ask for the necessary paperwork to sign yourself out and return home immediately, admittedly no better than before you went in but a damn sight happier at that point.

I just want to return home to Amy; to our life - but I also want it to be better

I have often had arguments with Amy because I have wanted to leave hospital so badly and she has insisted that I stay, she has said that she can't face it being the same again, that I have to get better. I feel so guilty knowing that there probably wont be much getting better for me.

No matter how long I stay in hospital, no matter what I.V's I get hooked up to I will probably revert almost straight back to how I was before; sometimes I am overcome with a feeling of complete and utter hopelessness.

Hope lives and breathes

Since the Stem Cell Replacement Therapy I have been in hospital less; that has been a real blessing for me, for Amy... it has given us some much needed hope for our future. Before the treatment there was nothing but darkness, no light at the end of the tunnel, just a vast empty space of nothingness. 

There have been positive changes, I am still poorly most of the time, have flare ups pretty much constantly but we are able more and more to manage my symptoms at home. They are certainly less severe on the whole but we have a long road to travel; at least we can make that journey together.

We now make plans, we hope one day that Amy will be able to carry a baby; that we will get our dream to be parents, our happy ending...

I have finished editing my first crime fiction novel ready to start sending it off and have started writing my second; I have impressed myself with the fact that I am almost 19,000 words in already! I hope one day to see something that I have written on the bookshelves of Waterstones and Borders, I hope to achieve that.

Me, Bradley and Amy; we used to spend so much quality time together, I want that again so badly

I spend more time with my family now; nowhere near enough but it is heading in the right direction. The SCT takes at least a year to work fully, it has only been nine months, we have a way to go yet. I will also need the treatment again, one more time, to keep the results we have and to gain more results. 

We will be fundraising again later in the year; I am nervous beyond words of explanation that we wont make our target the second time around; that I will back-track, lose myself again. Whatever happens, though, I am taking every day as a gift and I am making memories wherever possible. Memories that will sustain those I love, memories made for a lifetime.

Amy made a difference when she wouldn't let me give up

The link to my GoFundMe page, created by Amy:

https://www.gofundme.com/Christiestemcell