Visitors and a weakened immune system

When you have a weakened immune system because you take medication to suppress it you worry about lots of things.  The Doctors tell you to avoid people with colds and viruses because a little bug can turn into severe pneumonia.  An over-reaction you may think?  Nah!  Every person I have spoken to who is on immunosuppressants tells me it takes longer to fight off colds and stomach bugs, they get more viruses and sinus infections and many have ended up in hospital severely poorly!
You can't see germs, but anyone with any common sense knows you should wash your hands after visiting the toilet, before meals, after stroking animals and after sneezing yucky stuff all over your hands!
When you have a low immune system you tell all your friends and family not to come around when they have a cold or bug.  Most of them get it and stay away but there is always one person who thinks it won't matter, who thinks it's only a sniffle..what's the worst that could happen?!
For a start, if I do get a 'little sniffle' I have to stop taking my meds so my immune system can return to normal so it can fight off the germs before it turns into something serious.  Stopping meds means an increase in my symptoms....PAIN!! stiffness, fatigue...THANKS FOR THAT, SICK PERSON!  Because stopping my meds means my immune system returns to the level it was at pre-meds....OVERACTIVE!  My immune system is attacking healthy parts of my body!  All the good work undone by stopping meds can take months to put right after restarting them, that's if I don't contract something my body can't fight off all because you thought it would be ok to come round when your nose was running!
Many Autoimmune patients have died because of sickness turning into something more severe....sepsis for example.  We have to face the reality of this possibility every day and it's SCARY!  So please please leave us alone when you are sick!

And when you do come and visit when you are better...please remove your shoes in my house!

If you don't understand why I ask this....have a read of this:  http://ecochildsplay.com/2008/06/17/shoes-transmit-disease-leave-them-by-the-door/

Why do people think it is ok to walk germs from outside into my lovely clean house?!  It's not the dirt and mud I am worried about it's the germs, as explained in this article you would be amazed how many bugs are on the bottom of your shoes.  Think about where you walk, the park, fields where dogs mess, down the path where they cock their legs up against lamp-posts, public toilets where most people stand up to pee so it goes everywhere!  You take all of this with you without even realising it!  Most people could handle these germs if they came into contact with them but for the sick, young and elderly people, we have all this extra stress worrying about avoiding these invisible killers. So if you see us frantically using hand sanitiser in the street or constantly cleaning...have some compassion...we do not have OCD.....we have Autoimmune Disease...be thankful you don't!

Gluten is the devil!

So anybody who has read 'wheat belly' will know that the effects of gluten are systemic. It affects your whole body. So it makes sense then that as Lupus is a systemic disease and I suffer from gluten intolerance that when I eat gluten my whole body shouts at me! It is actually screaming at me right now. My upper arms, left wrist, hips, thighs and left ankle and of course stomach all feel like I have been hit by a bus....that my friends, is the gluten effect!

After suffering from terrible stomach pains, bloating and diarrhoea for fifteen years I decided to cut out gluten two years ago. Most of the time I don't miss it. there are plenty of alternatives to those wheat based snacks we cram into our mouths without even thinking and if I do fancy a cookie there are always gluten free ones.  Though, gluten free foods can be expensive so I try to avoid them where possible. I have a handful of staple items in the cupboards as an emergency stash. It is unbelievable just how much better I feel off gluten. My stomach has flattened, it is not 'upset' anymore and I have more energy! It is not surprising then that when I eat gluten again, either by accident or not, boy do I know it!!

Apparently all autoimmune diseases are a result of 'leaky gut syndrome'. Which is the body turning against certain proteins in the foods we eat. It happens over a number of years and can suddenly hit us when we are least prepared. Usually by the time we develop stomach symptoms it has already spread to other parts of our body such as muscles and joints. When we go to the doctor after several weeks of having joint pains and they send you on to rheumatologists or osteopaths they should really be ruling out leaky gut first! Of course this is not true in every case but often these problems come hand in hand. I am told that if I stay off gluten for awhile I may be able to reintroduce it and tolerate small amounts. That seems to be true....when I cave and snack on wheat crumpets or biscuits....which I really don't have the willpower to resist so we don't buy them very often, then I find as long as it is only the once I can get away with it!  That being said I do not want to do it too often because what I have noticed is I don't notice the impact straight away.  After three or four days my hips and upper back ache worse than ever.....yes, I did have a crumpet four days ago didn't i!

It is not easy living gluten free. The foods are expensive, I often don't gave the energy to make my own, in restaurants your food is often cross-contaminated and of course there are slips in willpower to contend with. I figure at least I don't have coeliac disease, which is an allergy to gluten. Having that would mean damaging myself if I ate the tiniest but of gluten. I have non-coeliac gluten sensitivity. It still causes severe discomfort and pain, but I know if I do slip up its not the end of the world.

In summary, I do not know what the answer is.  I am only human and prone to slip ups. I comfort eat then regret it when I am in pain days later. Gluten free foods are getting tastier and less like cardboard than they used to be....but I have yet to find a tasty gluten free crumpet!!

Music Therapy

I have learnt a lot of distraction techniques while dealing with chronic illness but it has only just occurred to me that listening to my favourite songs on the radio or MTV is the easiest no effort way of losing myself.  So here is my tip to you......Surrender to the music!!  When something is bothering or upsetting you, you can't sleep, feel ill or depressed....  Turn up the volume and sing your heart out!!  It really works!! :)).  If you have the energy try dancing too!

It doesn't matter what sort of music you are into, if it makes you happy it will do the trick!  It's all about living in the moment...mindfulness! You become absorbed in the words and theme of the song without even realising.  For those few minutes the song lasts you are living someone else's story and you can be whoever you want to be!  Almost like role play, and we all know how much fun that can be ;))..  Seriously though, think about it...what tunes make you smile??  For me it can be anything romantic, with a fairytale ending or something empowering because they remind me of a simpler time and help me be the best me I can be and remind me that it really doesn't matter.

So, when my legs don't work like they used to before, and he can't sweep me off my feet, I know Ed Sheeran will love me until I'm 70!  now that's what is important!!

Chemical free living...an experiment in clean living for health

OK,  so with three members of our family having health concerns and recently going organic for food I have been reading about how environmental toxins and chemicals can affect your health so have decided to clear out the kitchen and bathroom cupboards and make changes!

First, we use a lot of bleach and antibacterial washes in this house (well I do) and It always worries me how much of this is getting onto the children's skin. My Daughter suffers from very dry cracked skin (so do I) and she is only four years old.  I immediately changed all our hand wash to EPA, Silicon and Paraben free. It is early days but I am seeing an improvement to mine already.

Next was the spray bleaches, dettols and toilet ducks....they are now distilled vinegar with some drops of lemon juice and essential oils. I am currently experimenting with lavender and tea tree oil.  Essential oils are anti fungal, antibacterial and antibiotic! No need for harsh chemicals to kill those bugs after all!!

Toiletries.  I thought I would have a hard time convincing my Husband to ditch his regular face wash, shave gel and toothpaste but so far he has been open to trying the lovely products I came home with from my recent shopping trip!  I found a limited range of chemical free items in my local Boots, Superdrug and Savers so I ended up buying everything from my local Revital health food shop.  I bought a lovely strawberry flavoured toothpaste for the children, fluoride free, which they love.  The peppermint and aloe Vera adults version has not gone down so well with Hubby as he didn't like the taste so he has gone back to his Macleans for now. I spent a small fortune on some shampoo and body wash from A'Kin which we all love so that's fab.  Today I bought some travel bottles so I can divide them for use around the house and taking to the gym etc.  I will be cross if they only last a month as they were rather pricey, so some watering down will be happening!!

All in all I am happy with my purchases although I am still new to this and learning as I go. I feel very positive about making these changes as they can only be good for us.  Check back in a future post to see how much of an impact this change has had on our family! :))

Let down again....another ignorant Rheumatologist

Well as the title says I am still no closer to a definitive diagnosis due to the ignorance of many Rheumatologists.  I have seen five Rheumys now at three different hospitals, all of whom suspected autoimmune disease under the heading mixed connective tissue disease but because of negative inconclusive bloodwork will not diagnose me. I am fed up.  I wanted to see a consultant who is known to diagnose seronegative lupus/mctd because with all my symptoms I believed he would understand immediately.  Unfortunately his hospital assigned me to another guy who really was quite patronising to be honest! How hard is it to find someone who knows what they are talking about?? Very apparently! 

Yes I am complicated but so are many other people and they get their diagnosis!  I have been in pain every single day for over five years now and I am still fighting for a correct diagnosis!  Ask anyone with chronic illnesses and they will tell you they go through a roller coaster of emotions frequently and you can have some very dark thoughts at times. You feel so alone and isolated and when you struggle to get a diagnosis it makes it worse because you feel nobody believes you.  This is something I hear frequently from patients on support forums and makes me so sad. We do not want to be ill.  I do not want to be ill but have come to accept that is my reality.  I just want to find a treatment that works to improve my quality of life. I do not want to be on meds every day for the rest of my life never really knowing what they are doing to my insides, but if that is what it takes to feel slightly more normal and maybe in slightly less pain every day so I can get on with things like taking my kids to the park without feeling like I am going to collapse with exhaustion then that is what I will do.

Over the years I have tried many different meds with varying results.  Rheumy number three put me on anti-tnf injections which helped somewhat and Rheumy number four put me on Hydroxychloroquine which helped even more.  If I don't have an autoimmune disease as they keep trying to tell me, how can these drugs be so effective?? I know my own body and will continue to fight for recognition. 

Now....which Rheumy to try next?? 

My journey so far

Ok, so I probably should have started doing this a long time ago but I have been busy reading endless medical journals, health forums and social networking disease pages in an endless quest for answers..

I have been in pain for five years and four months now. It has become 'the norm' for me and I honestly do not know what it is like to not have pain somewhere in my body every single day. Despite this I remain positive and live an active life with my Husband and two children. I am not religious but I hope and pray with all my heart that my kids do not ever have to go through what I have been and still will go through for the rest of my life.

It all started when I was pregnant with my first child.  Very early in my pregnancy I started experiencing joint pain in my pelvis, in what I have since learned is my sacro iliac joint (SI).
My GP told me it was pregnancy SPD and not to worry since it will disappear when I have given birth. Well a bit of pain turned into excruciating radiating pain that every time I tried to walk stopped me in my tracks. Since I was pregnant I was not allowed to take strong pain relief or anti inflammatories but when I ended up going to hospital in an ambulance one day when I couldn't make it back to my desk from the toilet because the pain had literally seized up my pelvis they gave in and let me leave with codeine.  I was to take this as needed only when I was absolutely desperate.  I left on crutches and as my pregnancy progressed and I got heavier the strain on the joint got worse and I had more painful than pain free days.  Finding something that helps take the edge off can be a challenge, but more about that in another post...

That nine months felt like it lasted forever and because of this I did not enjoy being pregnant. I would love to tell you that when I gave birth at 37+1 weeks that it all disappeared....sadly this was not the case.  It did improve however.  I put this down to the massive immediate weight loss of giving birth.
My GP reiterated that it will go away I just need to wait until all the pregnancy hormones are out of my system.... Anything up to six months!!

Within those first six months I started to get very stiff when I woke up in the mornings. It took a couple of hours before I could move around freely and bending and stretching became very painful. I found I had painful areas down my spine and it felt like a rod had been taped across my back.  The codeine was becoming less helpful as the areas of pain increased and I started to get really worried. The list of symptoms started to grow and now included debilitating fatigue, muscle weakness, frequent headaches and sinus infections, inability to regulate body temperature, raynauds, digestive issues, dry eyes, mouth and vagina, painful sex, facial rash, photosensitivity, mouth ulcers, hand cramps, plantar fasciitis, enthesitis in ribs.  I would wake up many times a night in pain. Top count was eleven times turning over because of the pain in my ribs and hips.
Like most people I turned to the Internet to find out what was going on and how I could help myself.
I decided I was going to be sensible and not scare myself by thinking I had every disease that came up when I 'googled' my symptoms.  It turns out that my specific symptoms, the stiffness particularly come up in less than a handful of illnesses.  That made it so much easier to pinpoint what was wrong with me.  The next step was convincing my doctors.  I worked out I have an autoimmune disease. At first I thought Ankylosing Spondylitis but now I believe it to be Lupus and Sjogrens, the problem is many of them are not easy to diagnose especially in the early stages. Blood tests can be inconclusive and do not always match the symptoms.  I also have fibromyalgia which complicates things as many doctors cannot see past this.

Soon I was pregnant again and as my baby grew it became harder for me to walk and I had to use my crutches for most of my pregnancy. My doctors, physics and consultants would not commit to a diagnosis or treatment plan. I learned by experience that this is the norm when it comes to healthcare professionals but if you want to know more about my feelings on this matter I will have to start a new post! ....I have a lot to say! :) ..  My fight for answers continues...

The truth about healthcare professionals.

This subject is worthy of a page of its own.  The sad truth is that GP's don't know enough to be any help at all when you have a serious chronic illness.  As I always say they know a little bit about a lot of things, but unless they specialise they often try to put you under whatever heading makes their life easier.  It is often the case that the patient comes to know more and understand their illness much better than most GP's and even many Consultants!

I went to three different GP's with my symptoms.  One of which told me there was no way I could have AS, which is what I was first diagnosed with, because I am a woman!  She had read that more men get it than women so had decided that a woman in her surgery couldn't possibly have it!!  Another one told me it was all down to pregnancy hormones, something I believe a lot of women are told when they complain of any symptoms during pregnancy, and the reason a lot of women are also misdiagnosed!  The final one was better, insisting on testing me for anything that could vaguely explain my symptoms.  When some of those came back as odd looking, but not enough to base a diagnosis on he referred me to a Rheumatologist.

I had hoped to get answers quite quickly.  Unfortunately when it comes to getting a diagnosis they are so scared of giving a diagnosis and getting it wrong that they keep you hanging and don't tell you anything. I went through three doctors and five rheumatologists and not one of them agree.
  They told me I have fibromyalgia early on....that bit was easy.  I also have an autoimmune disease...currently coming under mixed connective tissue disease, which is an umbrella term for a number of possible autoimmune diseases so a bit of a cop out really!

As I mentioned briefly in my first post blood tests do not always give a clear picture of what is happening inside your body.  I have come across many patients who tell me they were diagnosed with an autoimmune disease based on symptoms alone because their blood tests came back negative or inconclusive.  This occurrence is called 'seronegative' and it takes an experienced Consultant to be able to recognise this and diagnose appropriately. In fact when it comes to looking for antibodies in the blood many results can vary during the course of the illness with disease activity and in response to different treatments.  It can take many years for bloodwork to match the symptoms a patient is displaying.  This can make it hard for some inexperienced doctors to believe what the patient is telling them and often leads to patients feeling their doctor thinks they are making it up or being told it is all in their head!

The average time to diagnosis from first symptoms in the case of Ankylosing Spondylitis is eight years!  For Lupus it is four years! sjogrens is four years!  and RA it is nine months, which is somewhat better.  These figures are shocking and partly the reason I have started this blog.  More needs to be done to raise awareness of these horrible chronic painful diseases, all of which have no cure and are very hard to live with.  If you suffer with any of these or even other chronic illnesses do not be afraid to educate your doctors. Get hold of whatever leaflets or posters you can from official charities for your illness and ask your GP to read them and display them in the surgery. The more they know the more they can help their patients. It is often not that they don't want to help, it is just not what their job is about.  They are trained to deal with less serious run of the mill illnesses.  If you are very lucky you may find a rare GP who will go out of their way to research your illness and do whatever they can to help but more often than not it is not within their level of expertise and hence the reason you get referred to a specialist!

The moral of the story is do not rely on your GP.  Do not be afraid to change your GP if you feel they should be performing better or are not listening to you or you just don't have a connection with them. The same applies to the Specialists.  You have to be advocate for your own health.  Do not stop pushing for answers and don't accept one opinion as the only answer.  Quite often Doctors will disagree with each other.  Listen to and trust your own body.  You know it better than anyone...including your Doctor!