A.S. Face 1838: Walter Geuens

A.S. Face 1838: Walter Geuens



My dear illnesses,

I will be talking here about a great part of my life. This means dealing with illnesses both mental as physical who I came along on my way in life. It has been a journey of ups and downs but this all made who I am today. A person who loves to help other people with my advice and by standing next to them who need it. It’s not because I am a physical invalid that I can’t mean anything anymore for people surrounding me. At this moment I am 52,5 years old and still full alive and kicking my way trough the amazing road called life. Here we go. I was born on the 9th of April 1965. So I’m a true Aries and is mind and soul and proud of it. When I was a small kid I had already troubles with aggression in my head. Where it came from I didn’t know that at the time. Because I was a kind of different from other children, because I loved to go school and learning about everything and I still do that because you never can know enough, I was bullied a lot and didn’t have any real friends. Much of the time I just stand alone and played on myself doing weird stuff in the eyes of other people but I was exploring my inner self and my creative thinking. I’ve always loved to create things. When I was 9 years old I received the news that my dearest Godfather died with his plain over The Black Forest in Germany when he was flying to a meeting in Geneva for the European Atomic Council. He was at that time my only and real dear friend. For me he was a God. He was and still is an example how I have led my life by helping other people anyway I can no matter what. From than on it went downhill in my head and behavior. I had very bad nightmares, could be violent suddenly without any reason, became depressed and suicidal. A lot of night when everyone was a sleep at our house ( not my home never have felt like that), I took alcohol and pills and tried to kill myself, but I never took enough because in my subconsciousness I wanted to stay alive and would be so up to today. When a dear friend of mine died when I was 16 years old I totally crashed in my head. I barely ate food but loved to drink a lot of beer and heavier alcohol. At a moment it was so bad that I have been committed in psychiatry for the first time to get me calm in my head again and stopped drinking. I was youth in a closed ward with almost nothing else than adults. So not the greatest environment but after 2 or 3 weeks I don’t know anymore I came out again. With a lot of pills to take and that would become a part of my life from here on. After that I went to the school of the arts attending the course of art photography. One of the study’s I finally cloud finish because of my mental illness at than. But when I was there on my second year something totally different happened. I was about 18 years when I came out of my bed with a hell of a pain in my lower back and I really had to go to the academy because I had an exam. So I got dressed and went with my bike to there ( the pain getting worse and worse). When I finished the exam I just couldn’t get up anymore out my chair. I fell to the ground with so much pain. I have never felt liked that before at that time. The ambulance came there to bring me to the hospital. We are talking over the 80’s so the beginning of the scanner and that hospital had one, lucky me. There they saw that I had disc-hernia on L5-L6. I had to stay about 1,5 weeks in hospital before sent back to my folks. I had to stay in bed for 3 months than because way than that was th treatment a lot of rest and light exercises with the physiotherapist. From than on the pain came and went. Wen I went to go for my higher study’s in chemistry the troubles began on physical level while even I had really bad times with my psyche of very deep ups and downs, anxiety for losing people, and so on. On a morning I could barely walk anymore. My whole body was in pain but far most my spine and the feeling in my legs. I needed a stick for walking and even than stayed with a kind of limb. At first they didn’t find anything but because the symptoms got worse the send me to a neurologist because they were starting to think that I had M.S.. I knew than already what that meant because my girlfriend’s father at that time had M.S. I took for me a lot of time before the neurologist said it wasn’t M.S. but I had some bad responses in my nerves. They started more test and at some time they said it was in my head, it had to do with the mental illness what wasn’t diagnosed completely at the time.
So more psycho session but the pain never left me. My psych sends me to a reuma -specialist . They saw some inflammation in my blood so he gave me inflammatory medication to get that in control. I went up and down than. More scans and X-rays and nothing they said. I was sick of hearing that so I went back to the neuro-churgeon who handled my hernia. He had an idea what it could be. So I needed to give spine-fluid to make some examinations on it. After a few weeks the results came back and had to go to him. There he told me I had Bechterews Disease or A.S. and I needed intensive treatment and physiotherapy. I had to stop my study’s at that time because I was fallen behind too much. I searched for work and find it as a salesman for photography equipment. I did that for a few years with a lot of sick leave. But at than I struggled trough everything. I saw a lot of my reumy and psychiatrist and psychologist (that still wasn’t totally diagnosed) At that time I got married with the girl I met at a party at the academy. We moved along at a steady pace with a lot of ups and downs on my side. Being at time very verbal aggressive but never physical except to myself. But never ever to a person. I became a salesman on the road for photo-equipment. That was a great job to do but because of my bad health I got my resignation a year later. Because of that I became very depressed and spending a lot of money just to feel better. That depression gave than more inflammation and so I came in a sort of circle until I broke the ring that kept me there and started my own business as a studio-photographer. First I started that at my home but after I year that was to small so I had to move and bought a building and designed it into a highly technical studio with really everything in and on it. There could drive cars in there and so on. It went great I was a lot abroad and just doing my thing I loved the most. And always being with other people (models, designers, assistants, make-up artists) I felt so at home in that kind of world but at regular times I needed shots in my spine against the pain and inflammation but at that time that couldn’t stop me. But I neglected my wife and our relation became kind of death because of me always being with other people and we went for divorce. At a kind of way it also felt like chains falling of me. The woman I was with from than and I went living together. Than I got a very severe depression looking back at it was life-threatening. I stopped eating, drank a lot, became verbal aggressive,,, and wanted to die…. The psychiatrist decided than to put me in a sleep for 3 weeks on baxters with very high doses of anti-depressant. I came out of the sleep just a bit better but had to stay on the I.V. for high doses of medication and had to take a lot of other medication orally. At some time I was taking about 25 pills a day just to get along. Another female doctor saw me walking there like a zombie and she called a specialized center of mentally illnesses and asked me and my parents if I would let me take in there to get some proper help. I went there first In observation and building down my pills so I came back to earth again on a very hard way. I became back very anxious and very quiet. But from time to time coming on the surface again. I had to do a lot of test psycho technical, IQ, and so much more than I can’t still remember because from much of the time I don’t remember anything anymore. I was devastated again after a bad letter I received and had to pull me up again and go further with my therapy I was getting there with a lot less medication. Slowly I came back on my feet again and after the therapy of about 8 months, I started from there to do some voluntary work. I went to work to give legal advice for people who needed answer about the hiring-laws. I did that for about 6 months and went on living apart in a house with other patients to adapt again to society. After being there for about almost,5 years i met the woman I am married today. We had some great times and also up and downs I went back working for IKEA Belgium. It went fine until the stress finally got back to me again. That was the really bad start of my AS what ended up in being an invalid ( but for me it is just a name) for having a chronic illness. About the diagnose at the mental-hospital that was Borderline Personality Disorder and chronic depression. The bps developed mainly because the way my parents raised and took care of me. At this time after the death of my mum due to cancer I totally turned away from my so-called family and that was one of the best decision I have ever taken. This can sound hard for many of you but from than on it went for the better with me. Still with a lot of ups and downs but so much less than. On a time a was hospitalized again for my AS I became getting also other symptoms and they also found out that I also had Psoriatic Artritis so 2 for the price of one. It went very much ups and downs until on one time I got Enbrel to inject to give me a lot of relief. But last year-end of October I got a lot worse and the pain started to come up again and getting worse by the day. I started also to fall because of loss of strength in my legs. I went back to a neurologist with a lot of tests, MRI and that 3 times in about 6 weeks. They saw a lot of broken discs in my spine and neck and started giving me morphine and other painkillers and went in for re-validation. I started walking better again but with a sick again until today. But last week after a lot of back pain again I went to the Netherlands to get CBD-oil ( in Belgium only MS patients are getting that) but there a reviewing it to give it also to reumys. So I started that last week and the results are great for me. I sleep much more, a lot less pain (I downsized on morphine by half on a week time), I can walk better again, I had to do that a lot sooner. I now know a place where I can go here near my home they give you counselling and legal protection because there is a law in Belgium that says that a doctor can give a patient a therapy he sees as necessary. So going there next week to get me registered there. And my psyche : I am real good since last year November when my Psychiatrist gave me a new medication and since than it is only going better and better on that side of the road…….Now I have the agreement to have all the kind of medical Cannabis.
A few weeks a go I collapsed against my back and going backwards again. I’m also loosing a lot of weight (Prof. said that’s a red flag). The morphine is gone up again with again a lot of other painkillers and NSAID and the usual medication. I’m going to have a number of examinations now to see why I’m loosing so much weight and why my spine is having little cracks in it. I’m having a spine of someone older than 90 years. So I’m back on a journey again where I don’t know where it will end. Last Wednesday I had to give up some voluntary work what was very hard for me to do. I find that even harder to do than the pain I’m in at this moment. I will always get up again and go on with my life no matter what. As long as I’m walking around here I will try to help other people; for that are one of the last thing I can do good. For the people who have read my story know that there is always a kind of hope in life. I’m almost all the time smiling because that is also very good against the pain. Crying doesn’t help me any further. I wish everyone who is chronicle ill or just ill both mentally as physical, hope for a good future and know that there are always people over there who want to help and will support you. Know that what the doctors learn from us they will be able in the future to help other people. For me it will be too late for a cure or a manner to go along with AS. In a good and pain-free way. That’s why I also let the doctors take all my info and so on for medical research. I wish you all  the best in life and that you all will be free of pain one day in your life. But always remember to keep an open mind and never give up on your dream.

Walter Geuens, AS, PsA, BPD, Chronic Depression.

I am alive and kicking!!!

A.S. Face 1323: Elisabeth

A.S. Face 1323: Elisabeth









I’m a 36 years old French girl, I lived in Paris all my life except for a few years in Brussels, Belgium, where I live now.
I was diagnosed with AS in april 2009.
The first awful pains started when I was living in Belgium, in august 2008, in my hips and trochanters, after I walked 10km. It was so sudden and aggressive that I really was scared to have such violent pain, I had to lay down for 24h after that, I couldn’t move, and couldn’t walk properly for a few days.
I went to see my osteopath, who told me, after 3 sessions, that something must be wrong as the pain wasn’t lowering. He told me to go and see my doctor (GP).
The first thing my doctor did was to give me anti-inflammatory (NSAID), that really helped, but wasn’t enough to cover the pain. He asked me to take a blood test to define if I had the HLA-B27 gene : I don’t have it. The doctor told me, in a relief tone, “you don’t have AS”. It was the first time I’ve ever heard the name of this disease. The doctor then told me “it must be fibromyalgia”. Again, first time I heard this word.
But as the hips & trochanters pain were still there in April 2009, despite the NSAID, I went to see in France a rheumatologist who was a friend of my family, because I wanted to have his advice on what to do for my pain, I thought something was wrong with my skeleton.
He made me take x-rays, MRI, and told me I had AS : my inflammatory markers were high, and I had joint effusion in the hips. He explained that many people with AS didn’t have the HLA-B27 gene.
At first, I really didn’t realize at all what AS was, and what it meant for my future.
Actually, I’m quite lucky I was diagnosed this quickly, when in France the average between the first pain and the diagnosis is 7 years.
This rheumatologist gave me another NSAID, that was more efficient, and added Amitriptyline, to lower the pain threshold. That also worked for a while. But after a few months, I was terribly handicapped by ankylosis, and the pain in the sacrum-iliac were killing me. He said it was time for me to take anti TNF. For that, I needed to see a rheumatologist in Belgium (where I had my social security at that time), to ask for a hospital prescription.
I managed to have an appointment with the number-one rheumatologist of Brussels, who told me he refused to give me anti-TNF, as I only had 2 joints injured on the xrays (sacrum-iliac and hips), so I wasn’t fitting in the quota (3 joints injured). He even said he doubted I had AS, he said it was probably “just stress”. I was in shock. I left the hospital crying, hopefully my parents were there with me and almost carried me outside the hospital.
I was desperate not to have the needed treatment. I went back in France to see the rheumatologist I first saw, he was amazingly nice and understanding, and also very shocked I couldn’t have anti TNF in Belgium because of quotas reason. He managed to prescribe Enbrel 50 to me (Etarnecept), in France, and so I began having one shot per week in September 2009.
It took a few months before I felt any change, and it went progressively better for a year, before I really felt improvement in my pain and ankylosis. I had to keep one taking NSAID and Amitriptyline, cause Enbrel wasn’t enough.
In May 2010, aftera3 weeks sick break because I was such in pain and couldn’t move, the Belgian company I was working for, fired me because of my disease. I had to give my company car back, and as I didn’t have enough money to live alone without a salary, I had to leave my flat, and go back to France to live with my parents.
I really realized what living with AS meant. I was really not the same person, suffering all the time, not sleeping well, being constantly tired. My friends and family were not supportive, they didn’t believe I was in pain, they thought I was just being lazy. It was terrible to be all alone facing this terrible situation, and having everyone around thinking you’re a fraud. A lost most of my friends, who were not returning my calls, etc… It’s really a terrible way to find out who are you real friends, the ones who’ll stay around you no matter what happens. I ended up having a small depression, cause after a little denial and angriness, suddenly the despair hit me : I had to live with AS all my life; I was not going to get “cured” of it.
Beginning of 2011, I was still not able to work, and i saw a poster for an AS conference, in the rheumatologist hospital department where I regularly went to see my doctor. I signed in for this conference and went there alone in march 2011, and it was a big shock : around 300 people were there, having the same illness that me, I suddenly felt I finally was out of the tunnel and saw the light ! Dozen of specialized doctors and physiotherapists were there to explain AS, talk about the treatments, the pain management, how to live with AS, etc…
I learned a lot about my disease and this conference helped me accept AS. I was surely not going to be cured of AS one day, BUT I knew there were a lot of medical research and innovation, I knew I wasn’t alone, and most importantly, I finally understood all my pains and ankylosis, how the disease worked, and for me that was a huge life improvement, to be able to rationally understand everything that was happening to me.
After that conference, I decided to get involved in the staff of this patients’ association who had organized the conference. I lead monthly support groups for patients and their caregivers, chat with patients on the association’s facebook support group, helped organized the 2012 conference, etc…
I really loved – and still do - being useful to others, sharing experiences of AS, tips, and most of all, being able to give hope to other patients, cheer them up, support them all the way until their own acceptance of their health condition.
In august 2011, I had a key family crisis. My parents weren’t supportive at all, and just said something about me being lazy, hypochondriac, not being able to get a work, a flat, etc… I exploded. I yelled at them like I never ever did before (and never did ever since!). I was crying, screaming all arguments I could think of : the pain, the tiredness, the stiffness, the loneliness, despair, etc… etc… I still remember their faces. That image will be in my head for all my life. They were scared : I was not a violent, screaming kind of girl (and still aint), so I guess they were really surprised. And then, from that moment, they began to understand. They cried after a couple of days, apologizing to me for having giving me this disease, for having not supported me from the start. They felt so guilty and helpless. I had to comfort and support them for a couple of weeks before they were ready to help me fight AS. Wow, what a HUGE change in my life ! To live with people who were finally standing up for me, helping me with anything I wasn’t able to do, and NOT judging me anymore.. It was such a relief. They still got some guilty feelings after that, but I keep giving them info on AS (books, DVDs, …) so they can understand it’s not their fault. It’s no one’s fault. That’s very important for caregivers to understand they shouldn’t feel guilty or hopeless. Their support is so important, even if they cannot act on our AS.

In 2012 I read an article in the Belgian patients’ association newsletter, about a medical center in Bad Gastein (Austria), that was using radon as a treatment for AS and other health conditions. The article was giving clinical proofs of this radon treatment’s efficiency, so I thought it was worth trying it. I went there for 2 weeks in October, had the radon therapy (thermal baths), and indeed, after the normal 4 to 6 weeks’ time after the end of the treatment, I felt a huge relief ! Less pain, no more ankylosis, and most of all, less tiredness !! I was feeling good again, being able to have more activities each day, I started to work a couple of hours each day, I gained so much focusing ability! I am thus going back to that radon therapy place once a year, and my condition has really improved since 2012. Of course I know I will not get my former life back, where I was able to work up to 10 hours a day, go out late every night, etc… but it such an improvement compared to the condition I was in when AS hit me in 2008 !

As a conclusion, I would say that resilience is so very important for patients to have a better life. Acceptance of our disease is mandatory to feel better. And don’t hesitate to shake your relatives a little bit, so they face your disease, and support you.
Don’t lose hope.
Belgium, Europe

A.S. Face 0167: Wendy Roodhooft

A.S. Face 0167: Wendy Roodhooft

My name is Wendy Roodhooft. I’m 32 years old and I live in Belgium, Europe.
I was diagnosed with AS just about two years ago, and have the diagnose of Crohn’s disease for about 6 years.
Since the diagnose my health has been worse, i have been in a wheelchair for a while but now with the TNF-medication I can walk again without a cane!
The most trouble I have is with the people that do not understand the disease.. Yes, I do look fine (I’m awake at 4 every morning because of the pain, I have time to make sure I look fine! ) and I do tend to go to musicfestivals, it hurst, alot, I’ll never let anyone see how much it hurts, and if you see I’m hurting, then it is really bad..
My husband is the best, he tries to understand how I feel, allthough it’s not easy and I’ll never show just how much it hurts.
There are days when picking up a knife or a fork is too painfull (my hands are affected) and going to work is a real effort since my hands are the things I use most at my job (I’m an IT-specialist)
Sometimes the only thing that keeps me going is my family and the love I have for them.
I have no hobbies anymore, I was a sportsfanatic, gamingfanatic, everything that was fun and took alot of energy, but not anymore. The only thing I have is music.. And allthough going to a festival almost kills me ( ) it’s one of the things I do look forward too.. One of the things I’m trying to keep on doing from my ‘old’ life. The music just lifts my spirits.
According to a specialist last week I’m trying to be too strong.. He told me that it is not right to hide away the pain.
But it’s one of the things I have left.. My pride in not showing how much pain I’m in. In my opinion it serves no purpose to let my family and friends know how much pain I have, god knows, they might ‘pitty’ me and that is one of the things I fear most.. ‘pitty’ ..
I was always ‘strong’ and yes, I do take pride in that. I don’t want to lock myself away because of this disease. I will not let this horrible disease let me be locked up and not live life to the max! I’ll try to live my life the way I want (with some adjustments as you, my fellow AS’ers, will all know.. :))
I want to thank websites like Faces of AS for raising awareness for this horrible disease.
We don’t look sick, but you can be damn sure we are all hurting like hell!
regards,
Wendy
Belgium, Europe

A.S. Face 0070: Claudia

A.S. Face 0070: Claudia

My name is Claudia, I am 32 years old and live in Belgium.

I run a small hotel with my boyfriend, we have been doing that for 8 years now. My boyfriend does the breakfasts and I do the rest. The hotel is for sale now, because I can´t do it anymore, I just don´t have the energy…   I was diagnosed with AS 2 years ago, the day after my 30th birthday. It wasn´t quit the present I was hoping for…   I had been having trouble with my back for over a year by then. When I look at the symptoms that come with AS, I remember having them for ages… like little marks on my nails, not able to walk like a model (my family always told me that I walked like a potatobag while I wanted to walk like a runwaymodel…) But the real pain began about 3 years ago.   I first noticed pain after sports. I was doing a lot of sports back then: poledancing, fitness, cardio, aerobics, pilates…I had to give them up one after the other because the pain got worse and worse, and lower and lower… And then it went to my hips. I was walking around like a pregnant woman ready to pop, wiggling around. And sooooooooo tired all the time. My doctor took some pictures of my back and it seemed that I had a scoliose of my lower back, it was very crooked. He thought that the pain was coming from there, that it was pressing a nerve. It would pass with some musclerelaxers and painkillers. My father–in-law was a fysiotherapist and he had a look at my pictures too. He was very worried because it looked really bad. The first thing he said, was that I should forget about having children, because that was a no-go. That was a huge shock for me. I was only 29 at the time and was thinking about a baby for some time then. My partner already has 3 children from his first marriage and I have co-raised them since they were very little, but I was dreaming of one of my own… So the first thing I did, was go to my gyneacologist and show her the pictures. But she calmed me down and said it wasn´t a problem, It would be perfectly possible with a C-section.   But then the pain got worser and I got really stiff, especially at night. If I wanted to turn in bed, I would have to grab the side of the bed, pull and roll myself over. I was in complete agony and I would sometimes just take a hot bath in the middle of the night to relax and ease the pain. Getting out of bed was even worse. I had to grab the wall, pull myself up, hold on to the wall to prevent me from falling, and shuffle my way to the bathroom. I went back to the doctor but he couldn´t find anything else then the crooked back. He was thinking about a hernia or lymes disease. But then I read something about fybromialgia and I recognised all the symptoms. My doctor thought I could be right and sent me to a rheumatologist, but typically, after months of pain and aching, I had a perfect day when I went to see her. She ruled out fibro and planned all kind of tests for me, scans, X-ray, MRI, blood,… but she inmediately thought of AS and she was right… (but I still believe I have fybro too)   At first I wasn´t too upset with the diagnose, I was just glad to know what was wrong with me, but then I heard the consequences… I really could forget about my baby. The risks were too big, wheelchair, 9 months flat on my back, not able to pick the baby up…. So I gave the dream up. I tell everybody that I am OK with that, I already have 3 children, well not my own, but I love them the same, but I am lying… I feel terrible about it. I have become very negative since then, I have even lost one of my closest friends (well I thought she was a good friend) because she couldn´t handle my negativity. Although I try to be possitive. But it is really hard, I am struggling with the accepting that I have AS, accepting that I wont have a child, the hotel still hasn´t been sold (and that is blocking my social life because I always have to be here at work) and AS also puts stress on my relationship. My partner doesn´t always understand that I am too tired to do all the rooms, that I  need a lot of sleep (9 hours) to feel good and to have energy, that I am not always up to cook dinner every day, that I can´t do the groceryshopping every day (I have to do them by bike because I don´t have a car anymore, it was stolen 3 years ago by some guests that scammed us)… but he tries. My rheumatologist first gave me some anti-inflammotory drugs with something to protect my stomach, but I felt really sick from those. She wanted to put me on TNF blockers, but I refused, its chemical garbage. I started taking greenlippedmusselextract and sharkliveroil and I feel great ever since. I have been taking them for 1.5 year now and my doctor is very surprised with the results. I haven´t been to my rheumatologist since then, because she doesn´t believe in my natural medicins. I will look for another one as soon as I get more pain, but for now, I feel good! I also watch my diet, no white carbs or sugar, and that helps too.

I hope you feel good also!!!

kind regards from Belgium!!!

Claudia

Belgium

“Mijn naam is Claudia, ik ben 32 jaar en woon in België. Samen met mijn vriend run ik sinds 8 jaar een klein hotel. Mijn vriend serveert de ontbijten en ik doe al de rest. Het hotel staat nu te koop omdat ik het niet meer aankan, ik heb er gewoon geen energie meer voor…   Ik heb de diagnose “Ziekte van Bechterew” of SA 2 jaar geleden gekregen. Het was op de dag na mijn 30ste verjaardag, niet echt het cadeautje waar ik op gehoopt had.   Ik had toen al meer dan een jaar last van mijn rug, maar als ik naar de symptomen van SA kijk, besef ik dat ik deze al jaren ervoor had… zoals kleine putjes op mijn nagels, niet rechtop kunnen lopen (mijn familie zei altijd dat ik wandelde als een aardappelzak terwijl ik enorm mijn best deed om als een model te lopen… :-s). Maar de echte pijn begon dus 3 jaar geleden.   Ik merkte eerst de pijn op nadat ik gesport had. Ik deed toen heel veel verschillende sporten: paaldansen, fitness, cardio, aerobics, bbb, pilates, bodypump, zumba… ik heb ze één voor één op moeten geven. De laatste zumba les ben ik naar buiten gekropen op handen en knieën. De pijn werd erger en erger en ging lager en lager. Uiteindelijk ging het naar mijn heupen. Ik liep rond als een hoogzwangere vrouw, klaar om te bevallen, net een pinguin. En ik was zoooooooooooo moe heel de tijd. Mijn arts liet toen foto´s nemen van mijn rug en daaruit bleek dat ik een scoliose had in mijn onderrug, het stond flink krom. Hij dacht dat de pijn dus daarvan kwam, dat het tegen een zenuw drukte ofzo, maar het zou wel overgaan met spierverslappers en pijnstillers. Mijn schoonvader was een fysiotherapeut en hij heeft ook eens naar de foto´s gekeken. Hij was meteen erg bezorgd omdat het er echt heel erg uitzag. Het eerste wat hij zei was dat ik mijn kinderwens wel kon opbergen. Dat was een grote schok voor mij. Ik was pas 29 op dat moment en was al een tijdje aan het dromen over een eigen baby´tje. Mijn vriend heeft al 3 kinderen uit zijn eerste huwelijk en ik heb die praktisch mee opgevoed sinds hun peutertijd, maar eentje van mezelf zou het perfect maken. Het eerste wat ik deed, was naar mij gyneacoloog gaan om haar de foto´s te tonen. Ze kalmeerde me en zei dat het met de juiste begeleiding en keizersnede geen probleem zou zijn.   Maar toen werd de pijn veel erger en werd ik erg stijf, vooral ´s nachts. Als ik me om wou draaien in bed, moest ik trekken aan de kant van de matras zodat ik omrolde. Ik verging van de pijn en nam soms midden in de nacht een heet bad om te ontspannen en om de pijn te verzachten. Uit bed komen, was nog erger. Ik moest de muur vastgrijpen, me optrekken en vasthoudend aan de muur (zodat ik niet zou vallen) zachtjes naar de badkamer schuifelen. Ik ging terug naar de arts maar hij kon echt niets anders vinden dan die kromme rug. Hij dacht aan een hernia of de ziekte van Lyme, maar dat was het allemaal niet. Toen las ik ergens iets over fibromyalgie en ik herkende al de symptomen. Mijn arts dacht dat ik wel eens gelijk kon hebben en stuurde me naar de reumatoloog. Maar natuurlijk had ik de dag dat ik naar haar toe moest, een perfecte dag. Maanden pijn gehad en afgezien en net die dag voelde ik me perfect. Zij sloot fibro uit en plande allemaal testen, scans, foto´s, MRI, bloed,… maar ze dacht wel onmiddelijk aan SA en ze had gelijk. (al denk ik zelf nog steeds dat ik ook fibro heb)   In het begin vond ik de diagnose niet zo erg, ik was gewoon blij dat ik eindelijk wist wat er mis was, maar toen hoorde ik de gevolgen… ik kon mijn baby echt wel vergeten. De risico´s waren veel te groot. Rolstoel, 9 maanden plat, niet is staat om de baby op te tillen,… Dus gaf ik die droom op. Ik vertel iedereen dat ik het niet erg vind, dat ik het geaccepteerd heb, ik heb al 3 kinderen, dus het is OK, maar ik lieg… ik vind het verschrikkelijk. Ik ben ook erg negatief geworden sindsdien. Ik ben zelfs één van mijn hechtste vriendinnen (wel ja, ik dacht dat het een hechte vriendin was) verloren omdat ze mijn negativiteit niet kon verdragen. Ik probeer echt wel zeer positief te blijven, maar het is zeer moeilijk. Ik worstel nog steeds met het accepteren van mijn ziekte, het gemis van een eigen kindje, het hotel dat maar niet verkocht geraakt (wat mijn sociale leven totaal blokkeert omdat ik altijd op de zaak moet zijn) en de druk die SA op mijn relatie legt. Mijn vriend begrijpt niet altijd even goed waarom ik altijd zo moe ben, waarom ik zoveel slaap nodig heb (9 uur) om me goed en energierijk te voelen, waarom ik soms geen energie genoeg heb om alle kamers te poetsen of voor hem te koken. Waarom ik niet elke dag naar de winkel kan fietsen om boodschappen te doen. (ik heb geen auto meer want die is 3 jaar geleden gestolen door gasten die ons opgelicht hebben) Maar hij doet zijn best!   Mijn reumatoloog gaf me eerst ontstekingsremmers met maagbeschermers, maar daar werd ik echt beroerd van. Ze wilde me toen op TNF blokkers zetten, maar dat heb ik geweigerd. Dat is gewoon chemische rotzooi. Ik ben op eigen initiatief begonnen met groenlipmossel en haaienleverolie en ik voel me prima. Ik neem ze nu 1.5 jaar en mijn arts is erg verbaasd over de resultaten. Mijn reumatoloog heb ik niet meer bezocht, zij staat totaal niet achter natuurlijke middelen. Zodra de pijn terugkomt, zoek ik een andere reumatoloog, maar nu is het niet nodig. Ik let ook op mijn voeding, geen witte koolhydraten en suikers, en dat helpt ook.   Ik hoop dat jullie je ook allemaal goed voelen en blijven voelen!!”

A.S. Face 0068: Lilith Eden

A.S. Face 0068: Lilith Eden

My name is Lilith Eden, I’m 48 and single. I have 4 wonderful children, I live in Belgium, and I am a face of Ankylosing Spondylitis.
I remember pain, feeling ill.
And Parents who told me I couldn’t be in pain and I couldn’t be sick – because I was a child.
A doctor at school when I was seven who asked me, ‘has anyone told you that your little heart is sick?’
An old family doctor who told me, ‘I’m afraid that when you grow up you’ll be sick and suffer from R A
Angry school teachers, because I couldn’t stay awake in the classroom, after sleepless nights due to the pain.
Gym teachers and kids mocking me because there were so many things I just couldn’t do, and telling me I was so slow at everything
A dead grandmother who was so bent they had to break her spine so they could lay her in her coffin.
Another school doctor, when I was sixteen, who said that I wouldn’t have a long life because of my heart condition.
Parents who said there was nothing wrong with my heart and called the doctor stupid.
A military doctor when I lived in Germany, who came to my house twice a day to ensure I was using the eye drops, as my uveitis wasn’t healing properly.
Pelvic instability when I was pregnant
A husband who told me that he didn’t want a wife who was always sick and in pain.
Back pain that made me crawl on my hands and knees.
A morning when I couldn’t get out of bed because of my neck pain.
Years of unbearable pain in my legs and a doctor who just prescribed magnesium for it.
A locked knee and surgery when I was forty three.
Epstein-Barr at forty four, along with the dizziness, fatigue and forgetfulness.
Almost unable to walk for three days after sex, and my boyfriend saying I didn’t seem interested anymore.
Forcing myself to stand straight, despite the fever, shaking and never ever ending fatigue.
Falling over and people assuming I was drunk.
The total exhaustion
Crying to a doctor while telling him that I couldn’t stand it anymore, and that there was something very wrong with me, and his reply: would I like to see a psych
My boss saying I was lazy and I would be fired if I didn’t work harder
At 46 finally finding a rheumatologist who kind of believed me, but didn’t listen to the full story, as he didn’t have enough time.
After being diagnosed with Ankylosing Spondylitis, tell my boss who said, ’oh, that’s easy to cure, you’ll be back in no time.’
How others say that their back hurts too, I don’t explain anymore.
Disability, no more disability, unemployment, getting poor, unable to do anything about it.
I’m Lilith Eden, I’m a Face of Ankylosing Spondylitis, a disease that has taught me all about love…..and hate.
Belgium