Continuing with Botox

I’ve had at least two if not three treatments during my blogging absence.

Friday 17th August was my most recent appointment, it was straight after my GP visit and although I don’t like needles, there is something quite pleasing about going to get this done.  You know that despite the pain, very soon that constant headache/migrainous nagging pain will diminish and life will become tolerable at least neurologically.

I’ve a lot to thank Dr W for had it not been for him I would never have been diagnosed with Postural Tachycardia and ultimately Ehlers Danlos Syndrome.  He was the only specialist who noticed the despite being on beta-blockers my heart rate was unusually fast.  He conducted what I now know to be a poor mans Tilt Table Test in his office at the Chiltern Hospital, and decided I would need a proper TTT for a full diagnosis.  That was in 2013!

During the procedure, Dr W always chats to me to keep my mind off all those needles and what I admired about him today is that he is attending a seminar about PoTs to learn as much as possible about this sodding illness, he also said he would feed back any info he could to me.  Two of my consultants are going to be speaking on the day Dr Gall, my cardiologist and Professor Aziz, my Gastroenterologist.  It sounds like a fascinating day in which they will not only discuss the illness based on findings in the UK but also findings around Europe, that  interests me, are they any further advanced in their care for potsies than we are in the UK?  

After wincing and yelps my injections were over, chattering about his seminar really had worked it’s magic.  A few needles sites were more painful than usual, indicative that the Botox really had worn off but hey it’s in now, he let me sit and rest for a few moments as I felt really woozy and sick, he could just tell.  I like that he never rushes me out the door, despite knowing there were people outside waiting.  A couple of minutes and I’m sure the colour was back in my cheeks.

We said our goodbyes and I would see him in four months for more Botox.  That’s one appointment I don’t mind attending even if it does involve lots of needles 

S xx

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Going to Guys

Since January this year, every month I have been a patient of Guys Hospital. 

(this is the amazing view from the 26th floor)

Due to the severe periodontal damage and gum disease that Ehlers Danlos can cause, my teeth had ended up in a terrible state, plus I have a real phobia of dentists and dental procedures.  If I am honest the phobia stems from pre-diagnosis days, basically anaesthetia doesn’t work well on EDSer type patients.  So from my childhood years to the age of 40 I have never known why going to the dentist, being injected and it still hurting was possible.  Dentists would say that was not possible and I had managed to find a local clinic that would knock me out for “heavy duty” work but not for general care.  

In January I broke a tooth, in fact it happened a while before that but by Jan I was in agony and knew I couldn’t hold off any longer, so agreed to see a dentist. Que call to my old dental surgery and yes I was still on their books, they kindly fitted me in as a matter of urgency and Andrew took me straight down.  My dentist there was pretty fab, he obviously was unaware of how sick I had become and we chatted about the EDS, he had heard of it in dental school, I was his first ever real patient.  So he was quite thrilled, he gently examined me and promised he wouldn’t hurt, Andrew held my hand and good to his word I didn’t yelp once.  Decision made, a temp plug would be put in the gap but an urgent referral up to Guys was needed, he felt I needed their EDS specialist knowledge.  So for the last six months we have been day tripping up and down to London for treatments, I’ve had fillings, tooth extractions, major cleanups, tooth shaving and now we are at the stage where they are looking and feeling good.

BUT

When my tooth was removed in May, I developed a Fistula, it’s a tiny hole between the gum and the nasal cavity, I’ve had three severe bouts of sinusitis, with a constant infection lingering.  I’m ow on my fourth set of antibiotics and I have nose drops too.  I went last week to see the Oral Surgery Team, twenty third floor, and it’s been decided that they need to operate.  After hearing about what’s got to be done, I’ve opted for a quick GA, I don’t think sedation will be deep enough for the amount of work they need to do.  Then I am hoping my oral issues will be resolved for now.  Op date is set for early next month, so I’m just waiting to speak to the surgeon next week to confirm.

(The view from the waiting room on the 26th floor, London Bridge station below)

After this it will be back to annual check ups hopefully at Guys with just a clean up, while I am asleep, that way I may keep my teeth for a few years 🤞🏻

S xx

Chronic Kidney Disease Stage 3

Imagine logging on to your online doctors booking system and finding that diagnosis.  Yes that is what happened to me a couple of weeks ago!

I had an initial blood test, for a silly health check and my creatine level was off, so one of the GPs called me and discussed the results.  She asked me to drink a little more, asked about other symptoms, I told her about my previous urinary retention problems and that I was experiencing the odd “retention issue” now and again but patience prevailed, it was just a case of sitting and waiting.  Plus I had a backache type pain near my kidneys but just kept dismissing it.  She said I should get myself checked out but first get the repeat bloods done.  So Monday 7th, was the day of blood test, all done and as I went to leave the nurses office, I was told not to worry and the results would be available on Friday.  The next day I logged onto the online system to book the Drs appointment as agreed with the Dr during our previous call and there in black and white is my diagnosis 😳

I was so shocked I got a fit of the giggles, Andrew just looked at me like I had lost the plot and I just said I refused to call the surgery the next day, as it was my birthday I planned on having a normal day with nothing medically related just for a change.  So I left it until the 10th when I called to speak to someone, but once again they couldn’t help me, as only the Dr who had ordered the blood test could speak to me, and she was now off sick.  So an appointment was booked for the 17th Aug.  Fast forward a week and my phone finally rung at lunchtime that day and this is how the call started.  

Dr “Hello Sarah, how can I help you”

Me “Your calling me about the blood test results”

Dr “What blood test”

Me “Well I’ve already logged onto the online system so I know what it says I have so I need to know what to do next”

Dr “ok let me log in and see what’s going on”

FFS you would have thought a bit of prep before making the call?? So in the end she agreed I needed to be seen, however she couldn’t see me as she had no appointments, so could I call back and speak to reception *facepalm*

I sat and thought for a while on what should I do and decided to go into the surgery and ask nicely for an appointment, take it from there.  I headed in and, the lovely receptionist explained there were no prebookable appointments, call back on Monday, this was Thursday!!

So I asked to see the Practice Manager, enough was enough, I wasn’t willing to lose the plot with this lady she was just doing her job, I took a seat and waited for the big chief after all that’s what he is paid the big bucks for.  The lady called me back to the desk, the manager has agreed to release me an appointment for the next morning, whilst grateful and yes I did take the appointment I still wanted to see the Manager, he wasn’t getting out of it that lightly.

So off she went to explain that Mrs Webb was on the war path, she came back and showed me to his office.  I took a seat and calmly and clearly explained my disappointment in the surgery over the last two weeks.  I explained prior to this I had been a huge advocate for BHC and the Drs and Nurses but the way I had been treated was less than acceptable.  He couldn’t understand why the results were on the screen, why nobody hadn’t called me to discuss them first and that was only my first issue.  I said in the act of compassion just shoving results on a PC when you have no idea what’s going on in people’s lives is tactless.  A call was the least I deserved, he offered me an apology, I know sorry is only a word but an apology is an apology I suppose.

As for the Kidney Disease, he then went an found a Dr and we had a quick discussion, I was firm with them both in that room, explaining that with all the other health issues I have right now Stage 3 is the highest level of Kidney Disease I actually want, we need to stop this in its tracks, I don’t want to get a year down the line and find I’m at Stage 4 due to bad condition management.  

My diagnosis’ so far EDS, PoTs, Gastroparesis with Slow Gut Motility, Chronic Daily Headaches/Migraines, Depression with PTSD, Chronic Fatigue, Chronic Pain, Marfanoid Habitus, Fibromyalgia, Osteopenia, Chronic Anaemia , BPPV, Mast Cell Intolerances, and now Chronic Kidney Disease – Stage 3 it’s just a little too much, like the straw that broke the camels back  😢 

I thanked them both for their time and headed home, also thanking the receptionist as I left the building.

What I had forgotten as I explained all this to Andrew was at 10:30, the very next morning we needed to be in London at the Charing Cross Hospital having my next round of Botox for my headaches.  My stomach just sank, why does my brain do this to me?  He told me not to panic just send my neurologist a message that I may be 15 minutes late and would that he ok?  I pinged the message across and got the thumbs up that it would be fine, I heaved a sigh of relief.  

I had a restless night, uptight about the GPs appointment and I’m not a fan of needles so the 30+ in my head and neck are not a joy, but they mean life can return to some kind of normality in the neurological sense, especially when the pain levels half.

We got to the doctors early but she was running ten minutes late, I got worried we would then hit traffic, I shouldn’t have.  I have never met this GP before, I explained quickly why I was there and she said I needed the referral to Nephrology straight away, I didn’t fall into any of the normal categories for Kidney Disease, so I needed to be seen asap.  She tapped away on her PC and booked me an appointment for the 31st August at my local hospital.  I was so impressed with her, I was not expecting that.  We left the doctors and still made it to Charing Cross in time for my appointment!!

Friday was a good day all in all 

S xx

Battling the DWP

In 2014 I started my first ever claim for PIP that’s Personal Independence Payment for those that don’t know the benefit lingo, it’s a disability payment that has two levels to it, standard and enhanced.  In 2014 I attended the Reading assessment centre and met with an amazing rheumatologist who knew all about Ehlers Danlos Syndrome.   He was empathetic and as I left the centre although it had been an awfully stressful experience, it hadn’t been as bad as others had made out.  My award arrived and I was given an enhanced decision on both mobility and care, which when you look at the questions was fair, the aids, the care Andrew had to provide behind closed doors and the constant escorts as I am no longer able to travel on new journeys alone, meant the gentleman had listened with care and written a detailed report for the DWP to base their decision.

Move forwarded to the end of 2016, my reassessment paperwork arrived and most of it was tick boxes, how had my condition improved, better, worse, the same.  I answered the questions accordingly and sent the form back, we hoped the process would be a fast one, we were desperate for a new car and wanted to get a Motability car but with less than 12 months left on my award they couldn’t help.  As Christmas got close, no sign of an assessment, we got through and into the new year, the old car just played up to the point of falling to pieces, it had reached its death bed.  So that had to be replaced.  We had to get finance for a newer car, but on the plus side the newer car was similar to a Motability car, it was new, light weight, easy to drive and might mean on good days when I was well enough to leave the house I would be able to use it.

It was another two months until I got the letter to explain I would be having a home assessment on the 3rd April.  I was shocked that I had been offered an assessment at home with no fuss but maybe being on enhanced rate, this was standard procedure.  My appointment was at 10:30am so the night before we headed to bed fairly early hoping for a decent nights sleep.

As you can imagine Mrs Stressy Pants, yes me, got next to no rest, I was worried sick how this would pan out, the press had been rife with stories of benefits being cut and poor assessment decisions, so I just felt on the back foot and the assessor hadn’t even arrived.

There was a knock at the door at 9:30am and I panicked, it couldn’t be now, this was too early!! The appointment was for 10:30am, I was at this stage still resting in bed due to pain and fatigue, so hubby ran down and yes of course it was an hour early assessor.  He set her into our front room and then came to get me out of bed, she would sadly just have to wait.  So after helping get me up, dressed in PJs and dressing gown, trying to tie my messy hair up and cleaning my teeth, hubby then got me downstairs, the assessor missed that bit, me bum shuffling down our stairs, I’ve been doing it for years now, I can’t deal with having a stair lift fitted!  We got my crutches and I met her, she was very young, she mentioned her name and job, but I couldn’t tell you who she was.  We sat and started our meeting.  I can’t tell you much of what happened, it’s a blur now, but we went through my form.  All I do know is at the beginning she admitted that she had googled EDS that night to check up on the symptoms etc before coming out to me.  She didn’t ask me about my memory, the last assessor did number games and alphabet checks, nothing like that this time.  She didn’t ask me about any depression and to be fair I forgot, I have terrible “brain fog” I can’t remember anything, so if you don’t ask me a direct question I won’t remember to tell you something.

In fairness I should have just written, pages and pages of lists, but this would have kept her at the house for weeks, however it would have meant I got everything done and thoroughly.  She asked to physically check me which I could do, of sorts but it hurt, but I hide my winces, the pain,  from everyone it’s habit.

After an hour she felt she had done everything she needs and thanked us both, Andrew had sat through it as my witness but I’m not sure he will remember much, he can’t remember what he had for lunch yesterday 😳

A few weeks later the dreaded brown envelope dropped through the letterbox, I sort of knew before I opened it, I had been downgraded from Enhanced to Standard, in their opinion I “have got better”. My chronic debilitating illness has miraculously improved??

Two things that stand out from the reports are, my medications, I state that I require aids not only to remember to take them but also I have them all dispensed via the Chemist as I was getting confused with my tablets, so they are sent to me in Nomad packs, the DWP awarded me zero point saying no aids used or required.  Secondly the DWP claim I am able to plan a new journey to a route I’ve not travelled before.  That is impossible, I can’t even travel 30 miles alone.  My furthest is about two miles up and down our hill and I explained that, I can get to Sainsbury’s/Tesco but no further, again zero points awarded as I can plan a new journey according to them.  The whole report is full of inaccuracies and non truths, it’s hard to read something so wrong.  

So the first step was Mandatory Reconsideration, which we started back in April and the DWP stood by their decision.  The next step is appeal, this means I have to take them to court and fight for my rights, which I am terrified to do, but I have to, they are wrong, if I could travel alone I would do so much more with my life, if I could remember things, like my meds, I would be employable, this is more than just a benefit, this is about the bigger picture.  So we are still waiting for our day in court, despite the DWP’s wish that it was overturned, I just have to go in and try and have a clear less foggy day.  Maybe write lots and lots of notes to help me get through those stressful few hours 

Wish me luck x

S xx

M H Struggles

Anyone who used to visit my blog previously knows I’ve had my dark days, I suffer really badly with cyclical depression.  It’s always around tough “anniversary dates” for me and I know when I can feel these awful clouds gathering.  One particular time is  July which is my fathers birthday, my Dad passed away several years ago and even now at nearly fifty I struggle with his loss.  He died just one week before Christmas, so as you can imagine, I don’t particularly enjoy that time of year either.  A couple of years ago Andrew, my hubby, took the extreme measures of flying us away for the whole of the festive season and to be honest that was the only year depression didn’t hit me hard.

Last month I could feel the spiral, I had experienced one too many awful hospital appointment.  Listening to the same “nagging” doctors, traveling miles and miles, it’s just too exhausting and with a condition like EDS so unrewarding, you come away with no answers, no solutions, ever!!  On this occasion, we both sat in the car out of London because I am always escorted to all my appointments and I could feel the tension in the air.  Before we got home, we started speaking about the appointment and there was a conflict of opinion of what had been said.  I believed the doctor wanted me off my opioid medication and Andrew believed he wanted me off ALL my medications.  The discussion became so heated we just had to stop talking to one another, neither of us would back down.  Over the next few days I just withdrew into myself and felt I couldn’t talk to anyone for fear of repercussions, I slowly began to get weepy and on edge at the slightest thing.  I knew the signs, I needed help, so called my surgery for help.  They gave me the number for “Healthy Minds” and I rang them straight away, this was a huge step for me, I had never felt strong enough to get help before, previously resorting to self harm.

It felt like a weight of my shoulders making that call, to say I needed help because I knew I had MH issues and couldn’t cope alone.  They took my details and called me back a few hours later, for my assessment.  That initial assessment took an hour and she went into a lot of detail, not just about my background but about my current health condition, as well as my general health status.  A few days later she called back with a decision on what services they could offer someone like me.  There were three options, one on one face to face counseling but that could take months maybe a year to happen, one on one telephone counseling again another long waiting list, or the option I chose with the shortest wait time of three months a Long Term Health Condition support group.  This would involve getting to my nearest large town, in my case High Wycombe and sitting down as a group for eight weeks with others suffering with other types of illnesses, not EDS and discussing how it has affected their lives, my assessor explained I wouldn’t necessarily have to speak at every group session, you only get out what you put in.  Yes it’s a long wait but sadly MH services in my local area seem to be lacking for people like me, unless I take an overdose and end up in crisis, I’m not one of the “bad ones” 

So for now I’m managing my MH struggles ok, I’m fighting the demons on a daily basis but honestly nobody knows what goes on behind closed doors and before you post something inane on Facebook or Twitter about “always being their for you and please share with five friends” really think, do people with MH issues pick up the phone and call when they are at their lowest?  I would never call anyone on my friends list just because I had seen that post, in fact I would go out of my way not to, it takes a few seconds to message me privately, that is what people like me need, a little hand to hold in our darkest moments, someone to pass a tissue when we are weeping or to make some tea.  Not to post some stupid Facebook status, that won’t help me, not reach for the pills and booze next time I’m feeling at my lowest ebb.

I will let you know how the group sessions go once they start but that’s another month away.

S xx

EDS follow up

As with my Gastro follow up, I’ve been traveling up and down to the hospital diligently.  It wasn’t until my hospital appointment last week that I got really frustrated, well it started with the copy letter arriving only the week before, that had taken three months since the last appointment in May to turn up and the contents less than impressed me.

I am the type of EDS patient that is aware that life isn’t going to improve really, you only get out what you put in and there is very little point moaning about the condition.  My friends don’t want to hear me griping about it, the nurses at the clinic, the people who I come into Day to day contact, so I generally never tell anyone the truth. “How are you Sarah” ….. “Fine” will be my response or “I’m ok today thank you” …. they don’t need to know that I’m in agony, they don’t need to see me crying, or puffing and blowing because I’m feeling a bit potsie but dear god these are all things I’ve started noticing around me.  So maybe I should tell the truth because by hiding the fact I am not ok, the medical profession have decided they can “discharge” me from their care.

So in the middle of the week, the day before my birthday I headed up to my follow up appointment to discuss, what next and I was already boiling under from the contents of this letter.  The doctor who I was seeing was the doctor who diagnosed me, she is generally lovely and I felt awful that I was about to offload with her all guns blazing but I had really had enough, she had dictated this letter so it was her choice.

She asked how my shoulder was and I explained that apart from the increase of pain, which I could only describe like sciatica down the arm, I at least had a little more movement, I just needed to get back into the pool as I felt weightless excercise may help.  She agreed with me and felt I was taking positive steps in the right direction.  She then asked me about the three week inpatient program as this was something they had been pushing on me for years, I have been reticent to do it, I struggle with separation anxiety and don’t cope away from home and have explained this time and time again, so once again said this but addressed the letter this time.  I told her straight I was upset that she had sent me a letter basically telling me that this would be our last appointment.  So what was I to do next, her answer go to my local hospital!  I explained they couldn’t even spell ehlers danlos syndrome let alone treat it, so how would I be able to trust them, I didn’t have a local rheumatologist and I had been traveling to a Centre of Excellence because I had been led to believe that they would look after me and have my best interests at heart.  She advised me that EDS was only a manageable condition and they had reached the end of the line with me, so her management wanted me discharged.  I told her that was not acceptable, I was not just a number on a file I was a patient with a complex condition, I had six different consultants for all the other issues, Gastro, Neurology, Dental, Cardiology, Shoulder Surgery & ENT , yet the one umbrella consultant wanted to fly away?  How does that work.  She asked how she could help me, by this stage I was very upset and in tears, I carry my medical paperwork file everywhere, just in case.  I slammed it on her desk and told her straight.  Four years ago I was leading a normal life, working, enjoying my hobbies, socializing, generally pain free, now I carry this around to a minimum of six London Hospital appointments a month, thanks to EDS, I have had all sorts of lies written about me, drug addict, mentally ill and by that I mean psychotic, anorexic but I’m still fighting and you dare to just throw me on the scrap heap, your job is to help me, you are the doctor I am the patient ….. I put my trust in you to help me and here I am begging you to help me, at that point the room went silent

She very quietly said sorry, she wouldn’t have sent that letter had she known all this, but Drs don’t listen, they don’t know because they don’t have enough time for us, so at this stage her management can go shove it, she is keeping me on as a patient, we have agreed to try the three week program as a compromise, but if my anxiety gets too much I can just go home, they will let the psychology team be aware.

So it’s time for me to stand up for myself in all aspects of my care, I am truly fed up of being the EDS patient that just gets walked all over because I am meek and mild, because I refuse to put up a fight in case they think any less of me.  I don’t really care what they think of me, if I want to survive I’ve got to be able to fight for my own rights 

Gastro Update

The last ten months have seen my weight fluctuate up and down, anything from 48 – 53 kgs, it means I become very fixated on the weighing scales in the bathroom.  At one recent hospital visit I challenged their “weigh in” as I had been checked only a week previously and was 50 kgs and suddenly I was 2.6 kgs heavier, over that week I had been sicker, eaten less and been feeling decidedly poorly, so how could I gain weight?  Their answer, every doctors or hospital scales is calibrated differently so the only constant would really be my home weight.  So I am now trying to check myself every week, to get out of the habit of every day checks, I remove all my clothes, it will be a Monday morning at the same time.  If I keep a weight diary then I know what direction I am going in, this appears to be the only way to track MY weight accurately.

I still have two hospitals looking after my care, my local hospital King Edward VII, under Wexham Park Trust and the Royal London Hospital, this is where I am under Prof Aziz’s care.  Local do my day to day care and the London are for my expert advice as locally they have no EDS or Gastroparesis knowledge.

I’ve been trying to avoid tube feeding for the last six months, just as I really don’t wish to go down that invasive route, until it really is the final option.  Ten days ago I went to the London for my most recent follow up and it was decided by the SHO that I saw that in his opinion most of my issues “could possibly be caused” by opioid use, therefore he would like to see me reduce and eventually stop my pain medication to see if the motility of the gut returned.  Now this is all well and good but then they give no magic solution on how an EDS patient is meant to live in pain, he kept saying how the pain receptors would adjust, my body had just adjusted to live with maximum amounts of pain relief, believe me I am probably one of those patients who takes a small amount of pain killers until I need it for breakthrough pain, then I “top up” my painkillers.  So I listened to what he said, I did ask what else he suggested, as it can’t all just be pain killers causing this problem, but on reflection, I actually got ignored.  So I came home that day really distressed and of the mindset that I would have to cut my pain relief to prove a point.  Then on the 3rd August I saw my local consultant, they have been in discussion about fitting a gastrojejunostomy, this would help speed up the motility of my gut.  I explained what the London had advised about pain relief and he made the notes, I also told him that the London advised against the GJ at this stage but I asked if there was an EDS or Gastroparesis specialist within my hospital trust.  Since 2014 I had seen 6 various specialist none of which had a clue about my condition, he began to get a little flustered and my questioning him.  I explained that I was the patient, putting my trust in them the doctors, asking for help, but they weren’t helping, they were just delaying my recovery.  I needed help and urgently.  So I asked to be sent to someone who know about EDS, be it at another hospital or a different doctor.

I got the usual “well you are a complex case”  and I just said well I am sorry that is not good enough this time.  I have had to learn about my condition over the last three years, I would have thought, each doctor who had come into contact with me would have had the time to read up about Ehlers-Danlos, he then decided he would return me to my original Consultant who could decide what to do with me next.

I have decided I am fed up of sitting back and being walked all over by the medical profession, well not just by them, by everyone, it is time for me to stand up and say NO I want full and fair treatment, I deserve it, I have a right to it, if you can provide it, find me someone who can.

So my little victory is standing up to my Gastro doctor and saying no more,  I refuse to be pushed around from doctor to doctor because you can’t be bothered to understand EDS.  They should remember their hippocratic oath

“I will not be ashamed to say “I know not” nor will I fail to call in my colleagues when the skills of another are needed for a patient’s recovery”