BIOSIMILAR DILEMMA

Well life has moved on and I'm not really sure where 3 years have gone since I last posted on my blog.  Feel a little bit sad that I've neglected it but on the plus side both my mental and physical health have been fairly good, despite a bout of pneumonia last year that I will blog about in a separate post.  Enbrel continues to work for me although  my neutrophil count remains low, I am told that this is now my new 'normal'.  My dose has been reduced to 25mg every 2 weeks which although its a small dose seems to be maintaining my 'remission'.  I am however slightly concerned about some of my joints on my hands that are still uncomfortable despite some recent steroid injections.

Now those of you who have followed my story will know I suffered a near fatal reaction to Sulfasalazine which has left me in fear of anything new medical, so I was dismayed to receive a letter a coupe of weeks ago telling me that I would now be receiving a 'Biosimilar' instead of my regular Enbrel delivery.  Now it doesn't take much to set off my anxiety that simmers under the surface of my everyday life so I tweeted 'Anyone else been told their meds are changing to bio silimar' hoping for some support and positivity and out of my 1770 followers ....no one?  Really?  Only my dear friend Katrina responded and no she hasn't....so I stressed and researched and I know they say that they are as effective and as safe ....but how do they really know...they are 'similar' not 'the same' call me a pessimist but I feel safe on Enbrel, or as safe as I can on a medication that changes the chemistry of my body, lowers my immune system, leaves wounds harder to heal, increases my risk of cancer just to name a few. I understand that with the licencing of these new drugs which will be more cost effective the doors will open for many more people to have access to drugs that may change their lives and for that I am grateful, but I'm not brave, I struggle with the drugs I already take but have come to 'understand' them, I don't want to change, but it appeared I had no choice.

So with rising anxiety and an appointment with my rheumatologist approaching I started my campaign to 'remain' on Enbrel .  Hallelujah.... I uncovered the fact that the biosimilar only come in 50mg and as my dose is a 25mg syringe....it appears I am 'safe' for now. Please nobody take this personally I've been through a lot in my life and I feel like at the moment I'm on a plateau, of sorts, and I'd like to stay there.  I will of course continue to watch and listen and hope that my probably irrational fears are unfounded and the efficiency and safety of these new drugs will be proven with time.

Now on a plus note and a completely different subject since starting this blog I have added to my family with another Chihuahua, Rosie who is now 2 and .....eek....am just about to adopt a street dog from Spain....mad ? ...probably.....I have agonised over this decision...if you are interested you can read about her, my usual anxiety fuelled thoughts and this new journey over on .... https://pandasstoryblog.wordpress.com/

Be kind - words can hurt

Happy New Year to everyone...2013 and I have realised that during 2012 I have neglected my blog Im not sure why...surely I must of had something to say...maybe  life just got in the way.

Any way one of my resolutions for this year is to pay more attention to my blog, at requests from some of my twitter followers I am going to include some new tabs for recipes and crafts.  I am gluten free, which some of you may know, I am not a Coeliac but intolerant,  if I eat wheat I suffer with severe migraines that last for days and send me to my bed.  Lots of my recipes are from traditional recipes adapted to be gluten free and of course many others contain no wheat anyway. This year also, inspired by Amy Badkin, I have made a quilt for my Granddaughter, have been making cushions and experimented with appliqué and varying other craft ideas.  I will share some of my success and failures with you .  This will follow soon and  I hope you all enjoy.

Im also considering having a guest tab...blogging has been very therapeutic for me and I know some of you would like to share your story/experiences but dont want to do a blog ...so let me know if your interested ..sharing is good J

Sadly my first post of the year has been tainted by a bad experience. I have recently been hurt and upset by a fellow twitter acquaintance and this post is not about 'he said she said 'or about blame but about the consequences of our actions.

I had assumed that this person, shall we call them X as I have no desire to name them, in fact its not really about them its about how they made me feel, was at the least an acquaintance we had exchanged e-mails a few times last summer and tweeted occasionally, now the ins and outs of what happened are not relevant but following an e-mail I sent to enquire if I had upset  them because they were not responding to me and apologising if I had indeed done so,  they made it very clear by their replies that they thought I was not a good twitter ‘friend’. This has hurt me ..not because of the loss of their acquaintance, because in truth I knew very little about them, but because I try very hard to be a good twitter friend, I had no idea what I had done to make them feel like this, it felt very personal.  It's confused me, I couldn’t see any direct tweets to me that I had missed and I certainly hadn’t been unkind.  I guess in a nutshell ... I don’t understand .......what I have done that has made them dislike me so much.....as a fellow rheumy I had hoped they were understanding and supportive.  Now no one has to follow anyone its freedom of choice and a public forum and Im really not caught up in the whole 'how many followers have you got' surely its quality that counts rather than quantity....but when someone you have had a relationship with of sorts, stops talking to you...it makes you wonder why and seek answers and resolution.  There have been many articles written about people taking Social Media sites too seriously and in many cases its true but as a Rheumy I know how important the twitter community can be.

It made me question ‘who I was’ on twitter, is this the way everyone sees me , am I a selfish tweeter  - I hope not!  I try to answer everyone who addresses me directly and if I have ever missed one of your tweets I apologise now.  I cant possibly answer every tweet that  the the people I follow post in general  on my time line there are hundreds every single day, but I do try and answer those that are directed at me ......my only guess is that because X was only following some 20 people they could easily reply to everyone...if they chose to. I guess like everyone my twitter has layers I have a few very close friends who are more than twitter friends,  albeit that we met through twitter, I have friends,  I have close acquaintances, I have people I chat to often, people I chat to occasionally and then some that I follow or who follow me that I have never even spoken to , but am still interested in their tweets or I wouldn’t be following them.  So I hope I treat all the people I know on twitter with respect and kindness, I hope I offer them advice and understanding , I hope we share the ups and downs sometimes with tears and often with laughter - yes we have fun and  I hope sometimes they appreciate my humour (OK well maybe not), and I hope they enjoy sharing my life – I am very public and post lots of pics of what Im doing.  I try to be honest and thoughtful,  I hope Im never rude to them and most of all as a consequence of my words I hope I never make them feel like they have done something wrong or are inadequate as a friend. 

So to all of you Im sorry if I have ever offended you by not answering you, its not because I don’t care or wasn’t interested, its more likely to be because I was feeling poorly , down or suffering with brain fog.  And for the many of you who havent answered my tweets - its ok - im not offended I understand that is the nature of Twitter and of chronic illness.  Maybe youve unfollowed me because my tweets dont interest you thats ok too...I understand,  Ive done the same. 

So the real message from this post is be kind to your fellow twitterers , most of mine are rheumies or suffering from some other chronic illness and we share a special bond, think about the consequences of your words and the impact they may have on someone elses feelings , many of us with chronic illness have anxiety issues and most of us  have much to deal with in our lives without the burden of being made to feel  insincere and shallow (yes words X used in a tweet to someone else) .  

As this weeks gone on,  Im ok with it, I've more important things in my life to focus on Im surrounded with people who love me and theres no place for bitterness in my world, but it was so unnecessary. As my lovely friend Katrina said to me recently underneath all of our bravado we are actually very fragile.

And lastly thankyou to all of my wonderful friends that have offered me support this week (you know who you are) your words have renewed my faith in the Twitter community.

xxxxxxxxxxxxx

Joint Damage

This blog so far has been about me and my RA, I apologise if so far it has seemed self indulgent but I write it for me as a reminder of the stages of this chronic illness, of the battles I’ve fought and won and the demons that I continue to fight. I also write it for my fellow sufferers that they may gain insight and support from my own problems and experiences.  We are all different and my disease will not be the same as yours but for many of you we will have similarities.  For some reason those of us that are chronically ill are drawn with morbid fascination to the ills of others, medical shows and the health pages of newspapers and magazines.   Why is this? – maybe because we want to compare, to think we are not as bad as others, to think we are worse than others or maybe just to realize that what we feel and are experiencing is normal. To realise that there are people suffering from many illnesss worse than ours.  Maybe to try and learn what to expect from those that have gone before or maybe just because we live in a world of medication, doctors, illness and disease and it is what we know the best, what we are comfortable with, a common ground that brings us all together regardless of race, religion whether we are rich or poor, regardless of material trappings.  We look into each others lives often with dread and horror of what may be in store for us but we all pull together to offer support and real empathy.

This post is about  a topic I  have promised to share with others - the dreaded joint damage.  You may already have damage that is not as bad or worse than mine you may look in, in horror, at what may happen to you.  But this is my joint damage - it may not happen to you and if it does it may be similar to mine or it may not, it may be better or it may be worse our illness manifests in different ways in all of us. To be honest I don’t know anyone else personally who has RA so I have no idea how bad my joint damage really is in comparison to others -  but this is my story!

I was diagnosed 24 years ago and my wrists were one of the first joints to be affected, those of you who have read my blog will know that I took no medication at all for many years, I was not aware in those days of the potential damage to my body.

No one ever told me back in the day that as RA is an autoimmune disease that my body's immune system would react against itself and that the fluid that lubricates my joints would become inflamed. That cartilage and tissues in and around my joints could be damaged or destroyed or that if the cartilage between my joints was eliminated my bones would begin to touch and wear directly into each other, that my body would attempt to repair worn bone by growing more bone onto the bone on either side of my joints, leading to the joint becoming more and more difficult to move as a lip of bone formed around the areas of friction. Or that in time the joint could get so painful that I would probably stop moving it and in the mean time that as the areas where my bone was being replaced would be in direct contact they would possibly start to join together as if it was one bone being rebuilt. No they didn’t tell me all of this – but this is what happened….

Luckily as far as I know the only significant joint damage I have is to my wrists and my feet, my right side of both being worse that the left and I guess after 24 years thats not bad going...but I wish it was less..

My right wrist was very painful and sore  from the outset, typical with RA it had times where it felt ok and then I would use it and it would flare and swell again.  A wrist splint was my daily accessory.  At this time I had a young baby so lifting was just a part of my daily life and I gritted my teeth and pushed through the pain.  Gradually over a period of 3- 4 years the range of motion in my wrist got less and less but then as my body went into a natural remission the pain mainly subsided, but by then the damage was already done!  My wrist would ache if I over used it but I had learned to adapt, my range of movement by this stage was down to a 45 degree bend.  X-rays revealed no synovial spaces in my wrist it was a mangled mess.  I visited the orthopedic surgeon to assess the situation and was given the option of a wrist fusion but as the pain was minimal at this stage and I still had some movement I was advised against it.

When my RA decided to return some years later my wrists were the first joints to be affected. I started to suffer with soft tissue swelling on both wrists, up until this stage my left had been functioning fairly normally.  Many days they looked huge, I have always had very prominent ends of my Ulna bones (both my daughters have too) but these disappeared under a mountain of swollen tissue. During flares they were consistently painful, many days I couldn’t use them at all. When flaring I couldn’t lift or carry anything even the slightest movement was excruciatingly painful and if I touched or worse still knocked them I would cry in pain.  I had endless steroid injections into the wrists which would help for a time but always wore off. In addition to the soft tissue swelling there was of course joint swelling too, spongey knuckles, trigger finger and a variety of other swollen tendons.  Only when I went onto prednisone did I get any relief.   At about this time my feet started to hurt too and X-rays revealed damage to my metatarsal heads.  For those of you that have no foot damage it is like walking with pebbles in your shoes and I know those of you that have damage will relate to that!  My rheum said from my x-ray that my bones looked like Swiss cheese that the mice had nibbled....full of holes!  I was lucky enough to have orthotic insoles made which were a godsend to my poor painful feet.

Pre Enbrel swollen puffy wrist

Post Enbrel 

I stumbled through the next few years, adapting my skills according to the severity of the pain, dipping my toe into the medication pot but with not much luck until I decided to start Biologic therapy.  I have tweeted and blogged about my success at the moment on this drug so will not go into that here but I need to add in relevance to this post that since starting Enbrel the swelling in my wrists has gone and my left functions almost normally but my right still has only about 45 degree movement – no drug in the world is going to repair damaged bone! I guess I am lucky that despite the pain and swelling over the last few years my range of motion has not decreased any more. They will still ache if I abuse them purely because the mechanics of my joints are now faulty but I manage to open jars and bottles and I even manage gardening now they may not be quite as strong as they used to be, but in reality there isnt much that I cant do with them in moderation. Do they look normal? I dont know - to me yes maybe to you no, its surprising what we get used to.  My feet are ok too, discomfort occasionally as opposed to pain but even that is not very often.  My feet look fairly normal – well to me – again you may look in horror !  My feet are wide and I have a bunion on my right foot and my third toe has a slight  ‘claw’.  These days I am even able to wear 'normal' shoes as long as they are comfortable and no high heels, wedges are good! I haven't used my insoles for months.

For feet that have been walking
the planet for 50 odd years
they're not too bad

Whether I will suffer any more joint damage now I am on Enbrel remains to be seen but I am educated about my disease these days and will do everything in my power to preserve my bones.  Had I of know at the beginning what I know now maybe things would have been different…….

If I could say one thing to those of you that are newly diagnosed it would be 'find the right med now, if you can, trust me this disease is relentless in its destruction of our joints' - Good luck.

In the interests of comparison or in case you are just curious about range of movement with a partialy fused wrist I have recorded this video because as much as I describe my joints to you I believe seeing what has happened to my wrists will help you more……I hope it shows what I intended and thats the movement left in my wrists but apologise that I kept forgetting what I wanted to say..and please ignore my dog opening the door half way through.

Holidays Rock

Having just returned from a 4 week holiday I am feeling happy, content, pain free and grateful for my life.  I have so many twitter buddies searching for relief from RA with new meds, med additions and alternative therapies  that I am once again reminding myself that I am so lucky, at this moment in time, to be where I am on Enbrel and I am determined to make to most of it, appreciate what life has to offer and to try and not worry about what may or may not be.

This is very much a pictorial blog post - a reminder of how wonderful my holiday was!

My holiday was a real turning point for me I departed on Wednesday 13th June on the ferry from Portsmouth to Santander in Northern Spain.  Accompanied by my eldest daughter, my 18 month old granddaughter and our two dogs, we squeezed into the tiny cabin for the 24 hour journey.  Sleep did not come easily in a tiny bed with a hard matress and a dog that barked every time someone moved in the corridor, but I did eventually drop off and slept quite well. I woke the next morning feeling optimistic for the first time in months, the ferry docked at 12 noon and the sun was shining my spirits lifted even further and we set off for a 350 mile journey to our overnight stop in Toledo just south of Madrid.

We made it in good time, several stops along the way for drink, food and stretching and luckily joints didnt complain too much and we checked in at around 7pm.  It was glorious - the views over Toledo were sublime, the hotel was set in the mountains and it was just lovely. Hot bath, room service and bed were all I could manage.

Friday the 15th was hot and sunny and the last leg of the journey, the 300 miles to Marbella passed easily, we arrived about 4pm, unpacked the mountain of things I had bought with me from the UK and settled infor the start of our holiday!  Coming back to Marbella is almost like coming home for me, because it is ours,  it is full of things that make me feel comfortable, there is no uncertainty like I sometimes feel when  I go somewhere different. Here I know where to shop, where to eat, where the pharmacy is ...I know what to expect....and I like that!

My partner Ray, my youngest daughter and my eldest daughters husband Peter arrived the next day. Now you may be wondering where my Enbrel was in all of this , well I had decided I could do without the stress on the journey so my family were bringing it with them on the plane.  Fully instructed they had wrapped it in bubble wrap, popped into a cool bag with 2 ice packs and attached the thermometer with instructions that it must stay within 2 - 8 degrees.  No probs, had been in the fridge on the plane but walking over the border in Gibralter to the car hire it had tipped over at 8.5 in the sun, they rushed to the hire car turned on the AC and tried to keep it chilled for the 40 minute drive to Marbella. My daughter ran to find me at the pool (bit like one of those scenes on TV when the transplant organ arrives in a hurry) we ran upstairs and straight in the fridge to settle down... phew that was it .....except when I woke in the morning the fridge was too cold and the thermometer was showing - 1.  Panic, panic, panic - a day of trying to regulate the fridge, too much food in it was throwing the thermostat out of sync, another night when the temperature dropped too low, I thought that was it, hundreds of pounds of meds ruined (3 click pens) and envisaged a holiday with worsening pain and even worse, maybe enbrel would not work as well when I restarted it when I got home. So -  a phone call to Healthcare at Home in the UK and spoke to the pharmacist who after much thought and consulting with various colleagues said it would be ok, as long as it was not frozen and no large particles, he said perhaps safer to keep it between 8 and 25 degrees under which circumstances it will keep for 45 days. So I relegated it to the electric cool box where is stayed quite nicely at around 12 degrees for the rest of the holiday.

Well after that it was plain sailing, I forgot about my Enbrel, except on Tuesdays which is E day. This holiday was to be about recharging my batteries not about pushing myself to my limits and  I spent three glorious weeks at our apartment resting, reading, swimming, meditating under the palm trees, having long leisurely lunches followed by a nap in the shade in the gardens, strolling around the sights and eating at fabulous restaurants. I spent valuable hours with my daughters chatting, laughing, drinking coffee in the Port, watching the world go by.... creating precious memories.  Walking my dog on the beach and watching my granddaughter enjoy her holiday -  simple pleasures but a reminder of all that is important in my life...

My apartment is only a short walk from Puerta Banus but it is very quiet and peaceful it is built like an Andalucian village with small clusters of low rise buildings set around swimming pools surrounded by palm trees and beautiful gardens  ....bliss ...and every day that passed I felt better and better, my anxieties slipped away and I began to feel like myself again.

Puerta Banus itself is often described as the playground of the rich and famous, unfortunately I fall into neither category. The port itself is lined with bars, designer shops and restaurants - a great place to people watch and enjoy a drink, a coffee or eat dinner.

Marbella old town dates back to the 16th century and is a maze of tiny streets lined with small shops and restaurants and shady walkways covered in flora. We had some lovely evenings wandering the streets enjoying the sights and eating at superb tiny bistros tucked away.

The weeks passed too quickly and reluctantly we repacked the car, retraced our journey, boarded the ferry for a rocky trip across the Bay of Biscay and docked at a very grey and damp Portsmouth on Sunday 8th July at 7.30pm.

I arrived back at home at about 9.00pm and it had apparently rained non stop for the 4 weeks I had been away, my garden had grown beyond recognition, my miniature buddleia has grown so much I can hardly see my front door.

Now my holiday is over but my new found sense of freedom from myself and my negative thoughts is something I am determined to maintain.  I am going to keep myself busy, I already have several projects planned and maybe another trip on the horizon.

 That sentiment is dedicated to all of those suffering 

from chronic illness  - never give up!

So So So Lucky

A quiet spot to relax and have a coffee

It has been a long time since my last post and although I have thought about my blog frequently I haven’t had the mental strength to write my thoughts.  Why? I don’t know.  I had a cold a few months back that threw me into a fit of anxiety, my first illness since starting Enbrel, I was convinced I would get an infection.  In reality -  I didn’t  - I’ve had many vague annoying complaints like tingling pains in my right leg that I was convinced was MS, my Doctor said No and its gone!  A sour metallic taste in my mouth that has gone on for months , Acid Reflux? -  Started my PPI’s again,  Post Nasal Drip?  - have been given a steroid nasal spray and been using a sinus rinse but convinced this was ‘something more’ went to see an ENT specialist.  Camera up nose, no problems, sinus’s are pristine he said, must be all that nasal washing!  In all fairness the taste is subsiding  and some days it’s hardly there it’s my anxiety about it all that is the real problem. Only this morning I visited the GP again because I had a slightly swollen patch under my tongue she assured me it is not infected just a bit red and slightly swollen but as I am going away she has given me some dissolvable hydrocortisone which we hope will calm everything down. A few years ago if I had any of these issues I would of shrugged them off and they would no doubt of passed on their own but my returning RA and my med reactions had made me worry about everything. To add something else  to the mix I also kept altering the dose of my Estrogen patch which threw my hormones into free fall and made me think  I was truly going mad.

Well hormone patch is back to regular dose and feel more emotionally stable because of it (never underestimate the power of your hormones ladies). Most niggley issues have or are resolving  and I feel really ungrateful.  Why – well because I went to my Rheumy appointment last Friday and everything is good, no better than good it’s great.  My RA is completely controlled on Enbrel  I do not have to take any other DMARDs to support it, I do not have any pain or stiffness and never have the need to take pain relief unless I have a headache.  My blood results are normal with my ESR at 1 and my CRP at under 4.  I should be celebrating not angsting about what might happen!

I am going on holiday tomorrow and  I have spent weeks worrying about the fact that I ‘might’ catch an infection whilst away and what will I do as I’m allergic to many antibiotics, in fact no one really knows what I can take although I have a list of what to take in varying senarios!

But the reality is ‘I am lucky’ in fact I have a charmed life. I have a  partner who loves, adores and supports me.  I have two wonderful  daughters who have grown into beautiful, caring, compassionate women,  who enrich my life and I am blessed that they still want to spend so much time with me.  I have an adorable Granddaughter who I love more every day and brings me so much joy. I have the cutest Chihuahua called Joey and I really never knew you could love a dog this much. I have a lovely home with a beautiful garden.  I have an apartment in Marbella, Spain where I can holiday when I feel up to it and Im lucky enough to drive a BMW which is light on the steering and automatic transmission so its kind to my partly fused wrists.  I don’t say this to brag or boast but because acknowledging these things in print is a reality check and a form of therapy for me  and I hope I will look back and remind myself,  that yes I have RA,  but oh I am so so so lucky I have all this and my meds are working.  My life is truly blessed.

So I am off on holiday tomorrow 13^th June I’m heading off for nearly 4 weeks in the sun with the intention of appreciating my life and enjoying time with those I love (My whole family is coming with me).  I am driving with my eldest daughter, my Granddaughter and both of our dogs and the rest of the family will fly out on Saturday. I am going to try and tweet some pictures of my road trip and holiday if I find the time - because most of all I want to relax and enjoy myself!

My Beautiful Joe

Success, Hope and Positivity

When the sun is shining the world seems
like a better place - My garden this week

I’m now at the 6-week mark in my Enbrel journey and last week saw the Rheumatoid Nurse for a check up.  My ESR has remained low at 2 along with my CRP, which is at 4.  Medication wise I am now just on Enbrel 50mg, NO painkillers and NO PRED.   I am an Enbrel success story or so I am led to believe, of course what no one knows is how long my success will last.  For some the relief has lasted for 14 years or so, others still going strong at 5/6 years and yet for others it has lasted only a few months.  But I feel full of hope, overflowing with positivity and so so grateful for my success. What I must do now is remain positive.  When talking to the nurse about dos and don’ts her advice was ‘enjoy your life while your pain free’.  And she’s right there is absolutely no point in me worrying about what will or won’t happen – it’s an unknown - I have to enjoy every single minute of this pain free life.  I haven’t tried many meds for very long periods of time and it was always my Rheumatologists goal that I should be on a Biologic, I think his view and that of many other Rheumatologists is that it’s only the Biologics that work really well.  I think that a picture had always been built in my mind of a miracle drug, one with potential serious side effects, but still a miracle.  It never really figured in my thoughts that it wouldn’t work, oh I muttered the words ‘It might not work for me’ but deep down inside I always hoped, believed and remained positive that it would.  Should Enbrel fail me I will switch to another Biologic with the same hope and positivity that it will work and maybe for longer.

This is maybe easy for me to say or write because I haven’t yet had the disappointment of a drug that I pinned my hopes on not working for me.  I know many of my fellow RA’ers have tried many of the Biologics with no success and it must be hard to maintain hope and positivity whilst crippled with pain and fatigue going through the highs and lows of starting new medications which then has no effect. The stress of waging a constant health battle can get to you, day after day, week after week - It's easy to get down and depressed. The fear factor then enters the game, fear of the future, fear of nothing working this creates more stress and a negative mental state -- pessimism, feeling overwhelmed, being burnt out – and then this has a negative effect on your immunity. When you have a chronic long term illness you must have hope.  Without hope you have no future or at least it looks bleak and a positive attitude is a must when looking at treatment choices. There is also evidence that people who have a positive attitude, what is called realistic optimism, the fighting spirit… they live longer, do better…so never give up!

Now that I have enjoyed a respite from this dreaded illness even for these few short weeks I am not prepared to let in back into my life.  I have whole periods of time now where my illness no longer dominates my thoughts, I can exercise again, I can walk fairly long distances, I can open jars and bottles, carry heavy pans, change the duvet and dry my hair all without wincing in pain. I can get out of the bath without crying in agony and I can lift my Granddaughter and that fills me with joy when I have struggled for so long.  I can make plans for the weekend, for next week, next month and maybe even further ahead.   I am me again, I thought I was lost… but I wasn’t… I was just hiding under a cloak of pain and despair.

My walking route I take with my dog Joe
- about a mile - takes me 20 minutes

As usual comments appreciated, welcomed, even begged for!

Anxiety

Thought my hands were kind of OK
but every time I see them on film
 they look kind of wonky

Four weeks in on Enbrel I have now had 5 shots and continue to be doing very well.  However last week I did not 'feel' well at all.  It started at the beginning of last week on Monday I had strange feelings inside, a bit non descript, just ‘not right’and I struggled to decide what was wrong.  Of course I initially blamed the Enbrel, It’s always the meds, right? However as the week went on I had stomach discomfort, acid, a strange feeling in my chest, my head felt strange, I just didn’t FEEL right. I had my lab results back and great news my ESR was down to 2 and my CRP down to 4 couldn’t be better...but my serum calcium was high...oh no more worry.  My Dr quickly assured me that they were only just under normal and not to worry we'd just repeat in a month.  But the anxiety had all ready been added to my already growing pile. I had been worrying about having a chronic illness, worrying about administering the meds, worrying about if they will work, worrying about side effects, worrying if they would kill me, worrying about the future if no meds work and that’s without any day to day worrying about family and work. Most of my worry was subconscious I wasn’t sitting around biting my nails but it was simmering away under the surface.   Thursday came and by then I had convinced myself I was ill, didn't know what, but I was ill, so I was worried about that too.  I shouldn’t do my Enbrel - surely? So I phoned the rheumatoid secretary at 8.30am and burst into tears, she booked me in that morning with the Rheum Nurse who was wonderful, she calmed me down assured me I wasn’t being silly, just worried, and I did my own shot. Meds this week 50mg Enbrel and 2mg prednislone.  No pain killers.

But back at home the feeling of being ill was still there.  The turning point that made me look at it was on Friday after tweeting furiously about how I felt,  Lene from the Seated View tweeted me in her calm sensible way and said 'start to narrow down what’s not right then try to think about what makes you feel that way'.  So I did, and I realised that In the midst of this excessive worrying, I was  suffering with high anxiety, I had feelings of doom  and unrealistic fears too,  every time I felt a thump in my chest or a pain in my stomach it  increased my  worries.   When I looked at it calmly and logically I realised that it was GI based and I  came to the conclusion that all of the anxiety I had felt over the past few months starting when I went back into hospital over Christmas with my Penicillin allergy, and probably further back than that,  was causing the GI problems that I was experiencing.  Now I know that worrying is bad for you when it becomes excessive  it can lead to feelings of high anxiety and can cause you to be physically ill so I took action.  Here I was worrying about being ill, the side effects of medication, and a multitude of other every day things that may never happen and in doing so was undoubtedly harming myself in the process.  So this had to stop….What was I going to do about it. .  I tried to calm down, I told myself that my anxiety was making me ill so every time I felt tense I would take deep breaths and let my shoulders drop and I started taking my Lansoprazole in the mornings and I added Domperidone before each meal to try and ease the feeling of discomfort in my stomach and chest because it’s a vicious circle, if I felt symptoms I worried more and  felt worse. I kept myself busy, too much time to think can be very destructive, I exercised, did yoga and started to meditate and once I had accepted that it was self inflicted I started to feel better, the meds were helping and by Enbrel day this week ...I felt ok again, thats just OK, not fantastic, but OK.   Now I’m not saying it’s that easy for everyone and I still feel on the brink of it returning, its simmering under the surface  and if I’m not careful it could break through  but I am going to work really hard at reducing my stress and worrying and thus reducing the resulting anxiety for the good of my future health. I am going to carry on with my GI meds in the short term.

This turns my thoughts to others and It has disturbed me no end that many people on Twitter this past few weeks have been in meltdown, far worse than I have been experiencing. RA Warrior mentioned in Rheum Chat this week that 2 people had attempted suicide.  This is just tragic.  Who has failed these people, so that their despair has spiralled out of control.

So who is supporting the patient with a chronic long term illness emotionally, everyone is concerned about ESR, CRP, joint damage and med side effects but what good is remission of the disease if we are not well enough mentally to enjoy it.  It seems to me that the emotional side is left to those closest to the family and yet these are the very people that very often understand the least.

How are we expected to deal with these feelings? We are living with a chronic illness that leaves many living in daily pain with disability that makes lives near on impossible and fear of the future very real and we are told to make the most of it, it could be worse, be full of hope, it will be OK. We are bombarded with articles telling us we are going to die young, we are more likely to get  cancer, heart disease and whole host of furthers ills and worse still that the very meds we are taking to help us find remission could kill us too  - is it any wonder we are anxious, worried and often depressed.   The physical effort of coping with it is near on impossible when it’s at its peak but what about the emotional side that lingers with us long after our flare has subsided, who helps us then? 

I’m genuinely scared for the many people out there for whom the meds are not working, for the extra worry and anxiety they are feeling, for their despair that nothing can help them,
for the pain that is unremitting and for their fear of what the future holds for them.   I may yet become one of them because I am not complacent enough to believe that because my meds are working now they will continue to do so and I believe that even if my medication carries on working for me this emotional journey will continue to be as tough as the physical one has been so far.  

I don’t have an answer to any of this I just hoped that by writing this  it would help me evaluate all of those lingering questions and fears that have been swirling around in my brain all week and put them into context.

Fear of self injecting, either with a click pen or syringe, is very real for many people, including me,  and at request and in the hope that it will help some to overcome their fear or phobia I have filmed my last Enbrel shot. I have agonised over whether to post this or not my narrative is not great nor is the camera angle but unfortunately by the time I’d reviewed it the shot was done, you don’t get to have another go. Please excuse the very undignified pose and the amateur camera work it was filmed in the interests of education not fashion.

Comments...please, please...I need some encouragement...blogging is hard work!