Jackie's Story- updated

Jackie’ Story


When I was a teenager, I begin having lots of aches and pains. The doctors labeled them as, "growing pains". After having constant pain in spine I hopped from doc to doc yet, they could find nothing wrong, and they basically said it was all in my head. Eventually, I was diagnosed with Ankylosing Spondylitis. as my doctor believed there was a problem so kept sending me to different hospitals, different specialists. By this time, however, there was severe damage and fusion in spine which was why it was spotted on the x-ray. I was told they had not been looking for AS as it a mans' problem!!! This was early 1970's. By this time I was married and in my early 20's. One of the things I was told was that my spine was not strong enough to carry children. For the next few years, I was continually taking painkillers and had several stays in hospitals with major flare ups.  The consultant at my rheumatology hospital, The Northern Hospital in Edinburgh (sadly no longer there) reviewed my drugs. He expressed his concern and disgust that a) I had never been referred to the hospital before, and b) that I had never been on anti inflammatory meds.  After the appropriate meds(Naprosyn) were prescribed for use with standard painkillers (co-proxymol), the pain was managed much better, even though I had spent unwanted time in the hospital. I did continue to go there on a regular basis for checkups, until it closed.
The next major event in my life occurred a few years later on New Year’s Eve, I decided I was not going to drink alcohol, as my friend and I were simply going round the neighbors in the wee village we lived. While walking about, I slipped on the ice and was carried home by two drunk men. Fortunately, one was a fireman so knew how to carry me safely.  The next morning I called my doctor, he  insisted I go to the ER hospital.  As it turned out, on falling, I had smashed a vertebrae. It was contained so as there was no danger, I insisted on going home, even though it was very painful. I was informed by my doctor that if I had been drunk, I would probably have been far more relaxed and therefore, would not have done much more damage to my spine.
The next incident, involved my left eye.  My eye looked strange and felt as though there was something in it, after a few days I went to see my doctor.  He found nothing amiss, however two days later, he arrived at my door and insisted I go to the Princess Alexandra Eye Pavilion in Edinburgh, where I was kept for a week.  After reading up about AS, my doctor had  spotted the connection between my eye irritation and the disease, and realised that speed was essential  I had developed iritis and since it had not been treated promptly, it had become worse. I needed injections administered directly into my eyeball, as drops did not work, what happened is that the iris had become stuck and could not dilate, the injection made the iris dilate and kept it dilated while the treatment was carried out. The treatment for iritis is by way of steroid drops and at this stage I needed them every hour, gradually decreased during the week to around 2 a day. Unfortunately I react badly to the steroids so the reduction in the dosage has to be very gradual to prevent pressure building. From then on I had iritis on average 3-4 times at least every year, involving treatment lasting in average 2/3 month. Eventually, both eyes were affected,and on a few occasions both at the same time!  Each time, I detected a flare, I went straight to the eye hospital, as I learnt my lesson from the first incident. Thankfully, I only had two additional hospital stays due to my iritis.  I got to be so good at recognizing the signs of the condition that, I ended up in a few arguments with nursing staff who told me there was no sign of iritis. After I insisted on seeing my doctor, he would confirm that indeed my eye was infected.  In over 30 years, I have only misdiagnosed myself once!  As I am so reactive to the steroid eye drops, the eye presuure has to be monitored carefully, otherwise it is possible the pressure can turn into glaucoma, and damage the optical nerve, and there for the vision.  On one occasion I actually lost my sight completely in one eye for a few hours and was rushed to eye hospital. The doctors were rushing around frantically before giving me an injection, and follow up pills to reduce the pressure in my eye unfortunately the pills also did not agree with me. They actually made the pressure in my eye soar. My eyes are now very sensitive to light and I have lost some peripheral vision in one of my eyes and will most likely need surgery at some stage. That is if I continue with as many flare ups of iritis, but fingers crossed since giving up work they decided to try giving me tiny amounts of the steroid drops to take continually. So far this has worked well, the pressure is a normal level and although there are iritis cells in both eyes, they are not developing, so the maintenance programme is working, I do go to the eye hospital every few months for check ups, so the situation can be monitored.
A few years later, someone pulled away a chair that I was about to sit on it.  I fell hard and the next day I was in great pain.   The doctor insisted it was a flare up of AS, or a bad bruise. (For I was not screaming and crying when I saw him) I told him it wasn't, as I know my body.  However when I went to see my consultant at the Rheumatology Hospital, he took one look at my face as I walked in and sent me immediately to x-ray which turned out to be break number two.  The third time was five years ago as I bent down to pick up a bit fluff on the floor, I heard a crack. Again I was told by my doctor that I had pulled a muscle or torn a ligament. My doctor decided to send me to a physiotherapist. It was an interesting journey there crouched in the back of a taxi, for you have no idea the number of potholes in Edinburgh!! Anyway the physio sent me home as they refused to touch me as I was in so much pain. They made arrangement for an x-ray and insisted that they would need to come to me until they were satisfied with my situation, so I would not need to travel.   As well as confirming another break, they found that I have osteoporosis.  This bone condition, combined with the AS, means I have to be very careful of falling over etc.as my back is very vulnerable – fused bones with osteoporosis.
In December 1999 the rhumatologist decided to operate on my back as I was becoming very badly bent over. As it happens I had been made redundant with the company I worked for had split so it was a convenient time for me. This meant opening me up from shoulder to bottom, breaking the spine in a couple of places, placing metal rods at each side of the spine and inserting hooks to pull everything into alignment. This took place in yet another hospital no longer there, The Princess Margaret Rose Hospital in Edinburgh. The 6-7 hour operation was on a Tuesday and I was put in a plaster body cast on the Friday. (It should have been longer before applying the plaster, but it was coming up to Christmas and the holidays so they hurried the procedure along.  It was the worst thing ever!  If you can imagine, I could only sit up being held by several people, I was in extreme pain and experienced dizziness, plus of course my spine was very delicate. The nurses placed huge amounts padding all around me, it went from under my arms, up to the base of my throat, and then down to my hips.  I was given morphine injections whenever I wanted one. Then there was the scaffolding. I was carried over and laid on this structure, with pipes running under my knees and under arms. There was material banded around my neck pulling my head into place and the same ones on my feet so my back was being pulled as straight and flat as possible. When they finished the plastering, I was untied and carried back to the trolley, and sat up as they had to make sure the plaster wouldn't be too high to choke me, when sitting, or too low to hurt me. Then they laid me down on a trolley and sent me to x-ray to make sure everything was in the right place. I was then put on a morphine drip and was in hospital for a month. There were a few unhappy instances in hospital, for example the morphine drip was fitted incorrectly so the morphine was going into my muscle and not veins. No one would listen to me saying I was getting no relief, at least until my arm started to swell alarmingly – then they apologized!
I had to learn to walk, to get washed without wetting the plaster etc.. After a few weeks had to go back to hospital as there was a black discharge, leaking out the bottom of the back of the plaster which my mum noticed when she was bathing me. It turns out it was an infection in the wound on my back because the plaster went on too early. I was taken into a wee room in the hospital to let a doctor see, and he decided to take the plaster off, they didn’t think ahead, so I had to stay in that same wee room for the week I was kept in. I had to lie flat as I couldn’t move in case I damaged my spine, and each day the wound was cleaned and dressed. There were no further problems, but I had two further changes of plaster, each one a little lighter than the last, over a 10 month period. After all this, I was fitted with leather and metal strap-on body brace.  This switch was bliss, as I could take it off at night and when I bathed.  I needed to wear the brace for a year.
I began to suffer from extreme fatigue and when I saw my doctor, he sent me to the Western General Hospital in Edinburgh for tests. There they carried out my first endoscopy – camera on an endoscope put down the throat to see what is going on in stomach. It was found I had a hiatus hernia and lots of lesions in my stomach due to taking the anti-inflammatory drugs over such a long time. Blood tests also found I have an under-active thyroid.  I now know this is very common, interestingly, the thyroid and AS both have one of the same side effects – extreme fatigue. I describe my continual exhaustion is liken to "Walking through treacle, all the time." This of course meant I had to stop taking the anti-inflammatory drugs and was limited to only basic painkillers. I was also anaemic.
A few years ago I read about a very new injection which had been used for similar conditions, called Enbrel.(one of the new TNF drugs)   I qualified to be given the medication so started with initially twice weekly self injection. The dosage was then doubled, so I could receive it once a week.  However the anemia was becoming a problem and I needed to be rushed several time to the emergency room for blood transfusions. The average blood count is 120-150 for a woman. At one point my count was 50, it was also discovered that my red blood cells were much smaller than normal. My doctor now gets excited of my count is in 3 figures!!
Despite several endoscopes, colonoscopies and a camera pill evaluation, there was no obvious reason for the ongoing severe anemia.  It was determined that it is a common situation with someone with long term chronic disease. As iron was found to help, I now take iron tablets most of the time.
So I take painkillers, injections, thyroid pills, hernia pills, iron pills, calcium pills, osteoporosis pills and eye drops. I get a shopping bag full with each prescription, luckily as I don’t pay for any prescriptions! In Scotland now no one pays, but prior to that  because I have thyroid problems it meant all prescriptions were free.
There has been the almost inevitable depression at times, mixed with loss of confidence caused by the way I look (now very bent over again).  At times I have the feeling of being such a nuisance when out with friends, for I can't walk far or for long.  I don’t want to go out much as I always need to have a seat before long, so I no longer have a social life. What I do enjoy is having friends over for visits. This too can be difficult, as I worry that I can't manage to have my home as nice as I'd like it to be.  My true friends will understand my limitations.
The AS was also a contributing factor to the breakdown of my marriage. It is a very difficult condition for a patients' partner to understand.  This is even more challenging when ones partner is young and active, as in my case.  Work life was also very difficult due to the constant medical struggles, and after the association I worked for merged with another, they moved offices.  This meant hours of travel each way with 3 changes of buses.  After 3 years of working with the new company, I simply knew I couldn't go on any longer and one day just got up and went home. My HR manager and my doctor were very helpful and guided me through it all.  Thankfully, I was signed off sick for a year which meant I could claim early retirement on health grounds. I remember going to see my doctor with trepidation. After explaining the situation to him, he quietly said, "I can’t believe it has taken you so long to get to this point".    He told me he admired my determination to work, and didn't have any idea how I had managed to go on for so long. Well that was it, several boxes of tissues later we got organized. Again I think I was especially touched at this rare moment for AS patients are so used to people not really getting it.  We feel we have to defend ourselves from being considered lazy. Presently, I don't get the old age pension as I am too young, and I could not have been able to give up work without the support of my partner and my mother.
I had major surgery last year, as I was finding it more and more difficult to breathe. I was taken off Enbrel while they investigated my chest/lungs. What they found was my entire stomach and part of my colon had moved through the hernia into my chest cavity and they were squashing my lungs.  This happened mainly because of my bent back.  The surgeons opened me up hip to hip in order to pull everything back into place and then stitch my stomach to the abdomen wall, so this will not happen again! Unfortunately while in for this procedure, I caught MRSA and a throat infection, so my 2-3 days or maybe 5-6 ended up being over 2 weeks. I was also told they could not find my hernia so did not close it, as they couldn't get me flat enough, so after all that still have a hiatus hernia!.
Another problem which has manifested itself this last year or so has been a twitch at my left eye, which became stronger and eventually moved down my face. This caused my lip to twitch as well and become a bit twisted up, so I look like I might have had a stroke.  I was given Botox, several times but did nothing to really help. The doctor in the Eye Hospital who gives me the Botox, suggested an MRI to see why this was happening. It was all arranged that I go in to have the scan of my head, however as the table part is very hard and flat so therefore It was too painful to lay on it.  So I must wait for them to come up with a better way of diagnosing this problem. In the meantime I am continuing with the Botox.
I got back on Enbrel in January 2011, however I have been disappointed with the results.  It's as though it's not as effective as it used to be. I have also noticed my hands are very painful now, with the knuckles swelling, and some morning they are completely numb. The doctors are thinking perhaps it is carpel tunnel.  My knees are also in pain while I am walking. Feet, ankles, and sciatic nerve are all in pain too.  My neck is bent very badly and is fused, so I have to strain to try and look up the whole time I am walking.  This is very uncomfortable, as you can imagine. I have now started on a different injection regime, Humira. So far I am finding no great improvement, but it can take several months to kick in.
These are the "highlights" of the last forty years of my life. There are too many to go over each one of them for there have been many over the years .These days the depression is more disabling, partly because I am just so tired of it all and partly because in all honesty, I don't have much of a life. As I said earlier, no social life in the evenings, too much is involved when planning, transportation, seating etc..  I don't think it's fair to make plans with a friend and then call off at the last minute.  During the day, my friends are all at work and my partner now works nights.  So even when I have visitors over, we have to be very quiet as my partner sleeps during the day.
I go out as often as weather allows usually with my Mum, as I am not too confident on my own any more. I think the affect of years of living with a chronic disease, is often thought of in terms of the affect on the body alone.  It also equally affects the mind, family, and friends of those living with the disease. Ones life becomes AS, as it controls every aspect of your person. People treat you differently than those who are healthy and it affects every decision you make.
I would like to make known that having joined various groups pertaining to AS, and by starting my own for group for AS' Peeps, has been the best thing ever. I've met so many fabulous people out there, who are a pleasure to know. These people are from all over the world. All have a generous spirit.  They are the ones who listen to my concerns and support me.  We all exchange ideas, treatments, hopes and dreams, my life is much richer for these new friends even though I shall probably never meet them. But the big thing, the HUGE thing, is they all know, understand and accept everything you have to say because they LIVE IT.  I wish social media, would have around in the olden days when I started on this journey, as it would have detracted from the loneliness and isolation.
What a joy there has been in the new friendships made because of this horrible condition! That has been one of the major factors in me getting more involved and active in spreading information about AS. When I hear all the different stories, (and many similar conditions), the huge delay in making a diagnosis, I can understand what these patients are going through.  Some were diagnosed late, which allows the disease to do severe damage before any treatment has been given. This delay also allows the mental wounds to fester.  Those that don't understand have hinted that we are simply seeking attention or have a mental illness. In my case if it was not for my doctor  who doggedly kept sending me to specialist after specialist, until the final x-rays showed a very damaged spine.
I also started doing the chronic illness specific blogs recently - as so many of my friends, people I have known for years, have read my story and told me they had no idea all that was involved, and friends on FB and twitter have read and have thought about their friends and family who have some form of something similar, and it has made them consider their attitude.
I always joke about my hair/make up/jewelry/scarves/handbags etc as my way of trying to grab peoples interest with the top half so they  don't notice the rest so much, but a friend, years ago, told me that she could always tell how I was by my makeup. Being made up and well dressed etc meant I was a little below par, not too much of anything meant I was having a good day, the full works and I was in full hiding behind the mask mode - ie not good at all. I laughed at the time, but I can see now she was quite right.)  I would put these two paragraphs in your biography
Below is taken from the NASS (National Ankylosing Spondylitis Society)

Ankylosing Spondylitis (AS) is a painful, progressive form of inflammatory arthritis.

It mainly affects the spine but can also affect other joints, tendons and ligaments.

Ankylosing means fusing together. Spondylitis means inflammation of the vertebrae. Both words come from the Greek language. Ankylosing Spondylitis describes the condition where some or all of the joints and bones of the spine fuse together.

Entire fusing of the spine is unusual. Many people will only have partial fusion, sometimes limited to the pelvic bones.

Other areas such as the eyes, bowel, lungs and heart can also sometimes be involved with AS.

What happens in AS

Inflammation occurs at the site where certain ligaments or tendons attach to the bone. This area of the body is known as enthesis.

The inflammation is followed by some erosion (wearing away) of the bone at the site of the attachment. This is known as enthesopathy.

As the inflammation subsides, a healing process takes place and new bone develops. Movement becomes restricted where bone replaces the elastic tissue of ligaments or tendons.

Repetition of this inflammatory process leads to further bone formation and the individual bones which make up your backbone (vertebrae) can fuse together.

The pelvis is most commonly affected first. The lower back, chest wall and neck may also become involved at different times.

AS is a very variable condition

Some people with AS have virtually no symptoms whereas others suffer more severely.

AS tends to affect men, women and children in slightly different ways.

Men

The most commonly affected areas in men are the pelvis and spine. Other joints which may be involved are the chest wall, hips, shoulders and feet.

Women

In women the involvement of the spine tends to be less severe. The most commonly affected areas are the pelvis, hips, knees, wrists and ankles.

Everyone is different, and there is no way of knowing how you will progress, so the priority is to get pain management in place that works for you, and try to stay as mobile and upright as possible.
I have now put on too much weight due to going a long time with little exercise. It is difficult to exercise with my breathing problems, recent surgery.. I am hoping to get out and active soon and start a healthy diet. Hopefully this should help me shed some of the excess weight. The only exercise I am allowed to do is to walk, with the fused spine and neck and osteoporosis it is too dangerous, I am not even allowed a massage!
The other main symptom of severe fatigue  can be a real problem as people can look well and so appear to be lazy! One day you can be severe pain, the next fine, but very tired. This again, is what people find hard to understand about AS. One doesn't get ill, get treated and get well.
I think the situations when someone tells us that they understand as they have a pulled muscle in their back, or similar, is both irritating and condescending, but we usually just smile and sympathize.
I hope my story might be of interest, and show that there are so many similar health issues, we are all different, and all have different stories, but so much in common.