Welcome to my online diary about the struggles of dealing with rheumatoid arthritis. I write about about the highs and lows of day to day life in an honest way as possible. I hope to share my experiences with those in a similar position and help them to realise they are not alone. It is a unique postion to be in, to have a condition which most people associate with older people when you are just starting out in life. But together, as we discuss our experiences, we can feel less isolated and alone.

About Me

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Leamington Spa, Uk, United Kingdom
I am 32 years old woman with Rheumatoid Arthritis. The disease came on literally overnight five years ago when I was 27 years old. I was diagnosed with many different illnesses before it was labelled R.A. I am taking methotrexate, humira injections, steroids and painkillers. It's been the hardest 4 years of my life though things seem to have turned a corner and I have met a wonderfully supportive partner. For a long time I have tried to fight it and had many different therapies to treat it. I lost faith in the medical world after several misdiagnoses and inadequate treatment. I then chose to follow an alternative route and have tried reiki, spiritual healing, alexander technique, kinesiology and EFT as I believe there is an emotional and psychological element that plays a part in disease. All treatments have helped the RA though not cured it. I am currently on the Margaret Hills Clinic programme for treating arthritis and this has proved successful so far. I am trying to come to terms with the illness and deal with it rather than fight it. Follow my day to day trials and tribulations coping with the disease and how it affects my life.

Monday, 2 May 2011

Up and Down Days

My bodies temperature has been up and down all day long.  One minute I am sweating and the next freezing cold.  I had tomatoes the other day and apple juice for the first time in a while (the acid in tomatoes are not good for arthritis) but I thought it's just a one off.  But the next day I paid the price as my body was stinging all day long.

Today I ate porridge then veggie toad in the hole for dinner.  and I have been feeling fine, the pain is less in the joints. 
It's the mornings that are hellish at the moment.  I have recently had a viral infection which has wreaked havoc on my joints and given me the worst RA pain I have ever experienced. 

I did lots of praying and had lots of praying done for me during this time.  I feel this is invaluable when you feel so low from the pain.  It's like a life line of hope and helps keep me going.

Also realised that indulging in thougts of self pity isn't helping my condition either and so have been making a huge effort to keep my thoughts positive and uplifted as possible.

Been lonely with partner away for work in the week.  Going to look for more domestic support as my cleaner has recently left.

Thanks for reading, please leave your comments.

Sunday, 20 February 2011

Update

It's been a while since I have written but finally have got round to writing this blog again.  So what's been going on with the R.A?  This week I will be seeing a new consultant which I am feeling quite hopeful about as the last two haven't really been much help in many ways, I get a few minutes every six months and just dealt some more drugs, it makes me really angry actually that the NHS staff are so overworked that when you go to see the specialist, it's like taking a trip to the local shop to get a pint of milk in terms of time and the fact it feels quite impersonal.  

I guess I do feel a bit bitter about the treatment of the disease, I feel it could have been managed much better and instead my last but one consultant taking responsibility for certain errors in 'care' it appears he has lumped the blame onto me for mistakes made as my new consultant (who reads notes from old consultant) seems to think I am incapable of taking medication at set dates and times.

Waste of time if you ask me, some of these people are being paid £100,000 a year and their 'care' leaves a lot to be desired.  I have found more than one consultant to be cold, impersonal and quite closed minded (in terms of treating R.A with anything other than toxic, industrial strength medication! Bonus please - ehem!)

I really believe people have to take their health care into their own hands and be responsible in looking for ways to help/manage/treat the disease.  There IS something in that dairy, refined sugar and citrus fruits are a source of aggravation to the joints, no matter what my seven year medically trained doctor may say, it's my body and I know what does and doesn't respond to and my own experiments have proved this to me.

We have to trust in ourselves and try and get to the root cause of why we have this disease.  I believe that although some diseases have a genetic components, environment and stress always play a part in disease and I also believe that any disease can be treated.

Unfortunately, western medicines provide huge profits so it's not in the drugs companies interests to look for cures, though some eastern traditional medicine use simple 'alternative' methods such as using herbalism, acupuncture and spiritual practices (meditation and prayer) to enhance health and well being.

Maybe I have become too cynical over the years, I know most doctors are doing their best and have limited times and budgets but it's difficult not to feel frustrated when your in constant pain and stuck on medication for years.

Unfortunately I haven't been sticking to my cider vinegar diet (Margaret Hills Clinic).  I had a break a few weeks ago when I went away and haven't got back onto it, even though I was feeling huge benefits.

I feel quite cross with myself for not getting back onto a diet that I know will help so much.  What can I do to motivate myself.  A friend made me laugh when she said someone she knew would 'eat slugs on toast' if it meant curing here arthritis!  Not sure I would go that far, but hey with a bit of butter, who knows!

I have also started taking medication called cymbalta (duloxetine) It has many benefits, one being an anti depressant which I could do with right now and also works on nerve pain for R.A and fibromyalgia so double the benefits.  I have been taking for about 12 days an already feel an improvement.  I am less irritable, more positive and am getting more things done.  Also my thoughts are less negative so all in all I am impressed.  Some reviews on the net are very bad for this drug but for me, I am quite happy so far.

Right off to bed now, so until next time, it's bye from me, over and out.

Wednesday, 24 November 2010

Spiritual answers to physical illness

I watched a programme last night about spirituality, science and physical illness which very much ties in with where I am at with my spiritual journey.  Dr Hank Wesselman talks about  all sorts inc. mind body and soul connection, shamanism, healing states and so on. 

Here is what he has to say...

Three Causes of Spiritual Illness
As we pass through life on the physical plane, things happen. We contract flus and colds and viruses, and we sustain physical injuries, like falling off our bikes as children or experiencing sports injuries. As adults, we may throw our back out or experience a serious car accident, in the process, acquiring bruises, cuts, sprains, infections, lacerations, and sometimes broken bones.
Some of us may also experience serious illnesses of an internal nature like cancer or hepatitis, heart disease or multiple sclerosis. Eventually we pass through old age and the progressive infirmity and death of the physical body. These are the givens--they are all to be expected as part of what it means to be an embodied, living being. But these are all effects, and what the shaman is primarily interested in is the cause.

Cause and Effect

In looking through the shamanic healer's eyes, the ultimate causes of virtually all illness are to be found within the imaginal realms--in those same regions from which illness derives its initial power to affect us adversely. Because of this, it is not enough to simply suppress the effects of illness with medication on the physical plane and hope for the best. For true healing to occur, the causes of the illness must be addressed.
From the shaman's perspective, there are three classic causes of illness, and interestingly, they are not microbes or bacteria or viruses. Rather, they are negative internal states that appear within us in response to negative or traumatic life experiences. The first among these is disharmony.

Disharmony

Disharmony is what we experience when life suddenly loses its meaning or when we have lost an important connection to life.
Let’s take the case of an elderly couple who have had a long marriage, and suddenly one of them dies. They may not have had a perfect relationship, yet there is a deep bond between them because of all they have shared together. The survivor may go into crisis upon the loss of their mate, and within a short time, he or she may come down with something medically challenging, like cancer. Suddenly, they're gone too.
That's disharmony.
The state of disharmony that we experience in response to such life situations causes a diminishment of our personal power. This can happen in a subtle manner on the one hand, or in a catastrophic, life-shaking way on the other like losing your job, and in the process losing your livelihood. When we experience disempowerment, or “power loss,” it affects our energetic matrix, rendering us vulnerable to illness.

Fear

The second classic cause of illness is fear. A person who is walking around with a chronic sense of fear gnawing away at them is doubly vulnerable to illness because their anxiety aggressively and progressively diminishes their sense of well-being, and this, in turn, affects their feeling of being safe in the world.
This sense of well-being is the base upon which our personal health system stands. When this foundation is affected negatively, it diminishes the ability of our immune system to function. And when our immune system goes down, we're in trouble.
It's not too difficult to see that there is a feedback mechanism at work here. Fear, and the anxiety it creates, produces disharmony. In the same breath, disharmony generates fear, and if the two of them are working together, it doubly affects the protective mantle of the body's immune system, as well as the energetic matrix. Illness is the inevitable result.

It is no surprise to Western medical practitioners that disharmony and fear can manifest themselves in diseases that are recognizable to science. Almost 500 years ago, the Renaissance physician Paracelsus observed that "the fear of disease is more dangerous than the disease itself."

This brings us to consider the third classic cause of illness--the phenomenon known to indigenous healers as soul loss.

Soul Loss

Among the traditionals, soul loss is regarded as the most serious diagnosis and the major cause of premature death and serious illness, yet curiously, it's not even mentioned in our Western medical textbooks. The closest acknowledged context is “He/she has lost the will to live”.
In Western society, soul loss is most easily understood as damage to a person's life essence, a phenomenon that usually occurs in response to trauma. When the trauma are severe, this may result in a fragmentation of that person's soul cluster, with the shattered soul parts dissociating, fleeing an intolerable situation. In overwhelming circumstances, these soul parts may not return.

The causes of soul loss can be many and varied. There may be traumatic perinatal issues that happen around the child’s birth experience such as arriving into life only to discover that they are not wanted, or that they are the wrong gender—they’ve come in as a girl when everyone was hoping for a boy.

Soul loss can also occur when a child is mercilessly bullied or teased at home or at school, day after day, or when a young person is molested by the one who is supposed to be caring for them. When someone has been raped or assaulted, has suffered a shocking betrayal, a bitter divorce, a traumatic abortion, a terrible car accident, or even a serious surgery, soul loss is assured.
Many of the young men and women who were sent to war in Afghanistan, Iraq, Kuwait, Viet Nam, Korea and beyond, came home personally damaged because they had suffered terrible soul loss. Our medical specialists labeled their disorders as post-traumatic stress syndrome, but they had little to offer these "walking wounded" in terms of true healing, and many who survived are still deeply traumatized at the soul level by what happened to them in war.

Symptoms of Soul Loss

Soul loss is easily recognizable if you know what you're looking for. Here's a checklist of some of the classic symptoms:
  • feelings of being fragmented, of not being all here.
  • blocked memory--an inability to remember parts of one's life.
  • an inability to feel love or receive love from another.
  • emotional remoteness.
  • a sudden onset of apathy or listlessness.
  • a lack of initiative or enthusiasm.
  • a lack of joy.
  • a failure to thrive.
  • an inability to make decisions.
  • an inability to discriminate.
  • chronic negativity.
  • addictions.
  • suicidal tendencies.
  • melancholy or despair.
  • chronic depression.
Perhaps the most common symptom of soul loss is depression. In the early 1990s, Time magazine did a cover story on depression in America that revealed 60 million Americans were taking anti-depressant drugs on a daily basis, representing about 30% of our population.
Today that number is closer to 80 million, representing about 40% of society at large, and sometimes that number jumps in response to a national trauma. On the Friday following 9/11, a television newscast revealed that 7 out of 10 Americans polled were experiencing significant depression in response to the tragedy, an indicator of soul loss on a national scale.
Although the term “soul loss” is not familiar to most Westerners, examples of it are expressed daily in our language and descriptions of personal hardships. Media interviews and news reports include individuals’ comments such as “I lost a part of myself when that (trauma) happened” and “I have not been the same since.” When discussing soul loss with inquiring individuals, most everyone has a sense of having lost a “part” of themselves at some time in life, yet virtually no one has the awareness that the missing part(s) could be recovered.
They can.

Friday, 5 November 2010

Go Away Rain!!

The rain makes my joints so sore.  At the moment I am really hurting when I wake up first thing in the morning, so I just lie there for a while.  I am doing a mediation called sahaja yoga at the moment but it says you should do it first thing in the morning before anything else.  Trouble is my body is so used to painkillers, I need them first thing and that means I need food which inevitably means I end up downstairs on the sofa and watching TV.

My joints feel like they are burning up but I did a meditation last night and put my feet in cool water for 15 mins and ended up having a blissful night sleep!

Julia at the Margaret Hills Clinic asked me not to take the antidepressants as it will just end up as another medication to ween off but if I am still struggling in 6 weeks, I can take them so I have only taken 2 and stopped.  I am secretly glad about that because I do not like the thought of taking them.

I feel so much better in my head knowing that there is a light at the end of the tunnel.

I have been taking a strong multivitamin and some tablets to deal with my 'candida'

I feel like I am in good hands now, someone who actually cares.  I am even thinking of asking if I could have a discount in my treatment as I have been recommending so many people.

I am going swimming again and I can't wait.

On Monday I am off to Egypt.  I am a bit nervous because there are lots of excursions but if I can't handle it I can stay on the boat as it's a cruise.  The sun will work wonders and it's a spiritual trip too so looking forward to that.

Will keep you posted!!!
Feel free to comment and never give up in fighting R.A!

Wednesday, 3 November 2010

Treating Rheumtatoid Arthritis

So have been to the Margaret Hills clinic today for an assessment.  Although it cost £65.00 it was the best money I have spent. 
I showed the woman my blood results etc and she immediately said I had something called Candida and that is the first thing we will treat through special supplements. Next month we will begin my supplements and the diet again.  I am still allowed my cup of tea and milk which is very important to us brits!!!!

Although I tried this type of diet before I didn't stick to it as I was trying to run before I could walk and taking too much cider vinegar.
I will go back in 1 month and discuss the next part of my recovery.
She is the granddaughter of Margaret Hills (who passed away in 2003) she is very qualified in nutrition and lots of other things.

She herself had juvenile arthritis at 8 years old and indeed her grandmothers natural route to health via diet and supplements and Epsom salts bath cured her and she is so passionate about it she is now helping others.

I feel so positive about this, I talked about all my emotional problems over the years.   She was so knowledgeable and knew her stuff and explained the cause of all my physical problems and just how it had impacted my emotional and mental state.
To say I will back to normal in 1 years time is like a miracle.  I am so happy.  This time the diet will not be as strict and I don't have to take the awful molasses again!!!  I am so looking forward to regaining my health again.  I feel she is like an angel sent from heaven.   Will keep you up to date with my progress.

Just in case anyone else wanted to have a look this is the website.
http://www.margarethillsclinic.com/  It may cost a bit (about £60 per month) but who cares if it gives you your life back.
The last time I tried the diet I had gone to see her mother at the clinic and the diet was much harder and stricter.

This time I have hope and I know this time I will do it!!!

Tuesday, 2 November 2010

Thoughts about doctors, medication and support

OOOh my joints are sore today.  It's a weird kind of pain, almost like a stinging all over.
I am so fed up with the medical profession I am in despair.  They have been so useless over this disease.  Even the new surgery I just started at messed my meds up.  I asked my pharmacy to collect and for 3 days it wasn't ready.  Then the receptionist lied to my face about the whole thing.  I wanted to scream.  I saw the driver that collects the scripts when I went to the surgery yesterday but he is such an arrogant idiot he just ignored me when I asked was it him that was collecting my scripts.  So I end up a day late taking methotrexate and no-one is responsible, they all blame each other.



For your health to be in the hand of someone who will only see you for 5 mins and just hand you a prescription is pretty scary, but sadly this is how it is.  I am finding out far more info about meds and treatment on the net.  Why are these people GP's paid £50,000 a year? In terms of my health they have misdiagnosed me several times, not had any real time for me and not monitored my health or drugs really at all.  It's a sad state of affairs.But I went to the surgery to get a blood test to check my thyroid in case there are any problems with it.  I am reading the book Eat, Pray, Love at the moment (which is an excellent read) and am at the point where the main character is working alongside a medicine man in Bali.  Part of me thinks there must be a natural cure of solution to these problems we have with our health.  Maybe some banana skins and a few prayers are all it would take (don't mean to trivialise) to cure people but we in the west are at the mercy of the drug companies and all their profits so it's no wonder we don't have access to ancient healing wisdom we so desperately need.It's a sad and lonely life having RA, well at least that has been my experience.  It's been endless days staying indoors alone, then days out hobbling to and from the doctors, the hospitals, and the pharmacy, for blood tests, prescriptions or whatever else may exist to relieve the pain for a while.

I have found a great place for people with RA called
http://www.rheumamisfits.com and am just getting to know the people there.  They seem to be so clued up on the disease.  They are telling me things I didn't even know before like that biologic meds usually stop working after 2 years, why oh why haven't my rheumatologist told me this, what are they being paid for?  You have an appointment, they squeeze your fingers and asks what hurts, check your bloods results, briefly ask how things are and that is that.  Ridiculous!!!!

Anyway thank God for finding this site.  You can ask them anything and they seem to know their stuff. 

My joints are so sore.  I think because I have tried to come off my prednisilone and gone to 3mgs in an attempt to shift some weight but it hasn't worked and my joints still hurt. I don't want to go back up but I think the humira may have stopped working.

I have asked for a second opinion and am going to have an appointment with a rheumatologist more local.  I travelled further because the hospital was newer and bigger but it means there is less time given to patients.  I may ask to try another biologic.  Seriously though whenever I go to the docs or hospital, it's me asking them for a particular treatment, it's me doing their job but I don't really trust them after so many prior errors with my care.

I have started on antidepressants as I couldn't hold out any longer.  I feel a bit of a failure for taking them and had all the feelings everyone has like, I should be able to cope etc etc but as a few people have pointed out, most people with RA have to takes meds for depression as it's such a hard life to cope with and inevitable that long term pain will takes its toll on your mental health. 

I asked the doc for Cymbalta (Duloxetine) as I have read that this can help with physical pain too.  Just one tablet helped and even though I thought they take 4 weeks to work, these seem to have taken effect immediately. 
When you go to the GP for depression they give you a questionnaire to fill in.  The score is out of 27 and most people score 12-14.  Mine was 22!!!!!!! Then I started wondering how long I have been depressed, why no-one else has mentioned it or tried to get me some help.  I then start thinking I have probably been depressed for many years without really realising.  Not the type where you can't get out of bed but the persistent inner turmoil and negative thinking about things.  Lately it has been a lot worse due to being housebound, I cry a lot at night and feel quite desperate at times and ask things like why me, why have I got this awful disease, my life is over what have I done to deserve this, maybe I was bad in a past life, how can I cope, why am I not getting enough support, how can I have a normal life and family living like this and so on and so on.

Its painful there is no doubt about it.

I have my appointment at the Margaret Hills clinic tomorrow and am starting to think I may be able to stick to this specialised diet if I take these antidepressants for a while as I will no longer be tempted to comfort eat.  So I may have a fighting chance. 

The pain is moving around today and my knees are sore and stiff.  I am trying to think why because the Humira had been working ok.  Is it the weather? Is it the recent injections I had for going abroad? Is it the lower dose of steroids? (Even though that happened months ago)  They are worse than they have been for a while now and it's soooooo frustrating not knowing the cause.

I am definitely looking forward to the second opinion and seeing another rheumy. I am feeling hopeful this time and think I will get better care.

Thanks for reading, feel free to leave a comment and remember if you are suffering from RA like me, you are not alone, reach out.

Friday, 29 October 2010

Depression

The past few days have been horrible!!! My joints have been soooo bad.  I am so desperate to come off the steroids but with the weather is making the joints worse.  I have the worst headaches too and I am sure my body is craving some form of exercise.  Yesterday nothing helped as it was that time of the month.  I was feeling very irritable too.  My thoughts are very negative when I am in pain.  I just lie there feeling very sorry for myself and blame everything I can for getting ill, including myself.  How can I be lying in bed with nothing to  do all day long.  My confidence has all but gone.  If you would have told me 5 years ago I would be housebound I would have laughed.  I used to feel so sorry for my elderly nan as she was housebound towards the end of her life and here I am doing the same.  I am very sociable by nature and I spend all day alone.  This is like a living hell.  I wouldn't wish it on my worst enemy.  It's so frustrating being ill and chronically ill not knowing the cause or cure. It leaves you in limbo wondering what on earth could have caused this illness. 



Yesterday I went to the GP and ask for help.  My financial situation is so complicated as I bought a large house before I got ill and now struggle to keep it.  I have managed to but have jumped through many hoops and loopholes to eventually get the support I needed.  I am in a catch 22 financially because every way I there is a dead end.  I have been to the CAB, phoned every debt line going.  the rules states you can't earn over such and such if you are having financial help, you can't sell your house because it would be more debt, you can't rent out because thats against the rules, the bureacracy bollocks just goes on and on.  The government do not take into account people that get ill during their twenties and they leave you in a poverty trap.  I want to work a few hours but if I do other money will get taken away so you think what's the point.  The government needs to wake up and take into account peoples individual circumstances and tailor help accordingly.  All the financial pressures are putting a massive strain on my health.  Sometimes I feel really bitter and angry that I don't have more support and other times I end up blaming myself.  I have even gone to relatives to ask for help but nothing.


Life is so hard at the moment, I just wonder if things will ever get any easier. 
I found out that I may be able to reduce my mortgage interest rate so asked  the gp for a letter of confirmation.  The answer was no because of this reason and that reason and it was my rheumatologist's job but I am afraid she won't help either and so far I haven't seen a great deal of her.  She has to agree to send a letter saying in a years time I will be fit to return to work.  Can't see it happening myself but I need this so badly to get back on my feet.  A year of less mortgage to pay so I can sort out my finances.  I am just scared of making the worng move.  If I sell this house I am afraid I will never be able to get another house like this but it's crippling me financially.  I am also not happy about going back to rent when I am nearly 32 and with not knowing if the house market prices with rise or fall, it's very hard to know what decision to make. 


I could rent the whole house out but I will lose money from the government as even though they rental would cover the mortgage only, in their eyes it's still considered as income. I feel very desperate at times,  I don't want to be in this house because of all the problems here but I am scared to leave.  I am definitely stuck in a rut.  The house is too big to maintain and the stairs are a nightmare too, I could do with living in a flat.  I wonder what happened to all the friends I have/had, why does no-one call anymore?  Was it my fault, did they get sick of me and my problems or are they just preoccupied with their own lives cause I could sure do with some more moral support right now.
My head is a big fuzz and my emotions are all over the place.  I need to go to bed and get some sleep.  I had to take an extra painkiller last night.



My last hope is my appointment at the Margaret Hills clinic in Kenilworth on Tuesday.  I am hoping and praying that I have the strength to stick to that diet, it's my last chance to have a life again.



I have been back and forth to the doctors asking medication for the depression but haven't got any and I don't want to take them but my moods are so up and down and the moment.  My thoughts are quite dark and sad too.  Then othertimes I am fine.  But they didn't give me any medication so I guess it's not mean to be now and I will just have to fight it out.

My Rheumatoid Arthritis Diary