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.

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 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.


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.

My Rheumatoid Arthritis Diary