Colitis (IBD) and Diverticular Disease are awful. Painful. And it means I am always aware of where all the bathrooms are in a twenty mile radius and what foods I can and can’t eat. It has been staggeringly painful and has been very embarrassing many times. Many people take going to the toilet and eating for granted unless you are forced to have liquid diets and spend hours on the toilet doubled in pain. Then you realize what role your bowel really does. I have not had long periods of remission from this AI and so it has dominated a lot of the past 10 years. I am grateful I haven’t had to have drastic or emergency surgery, but each procedure for these illnesses (scans, endoscopy etc) are not pleasant experiences, no matter how many times you have them. I am so grateful to belong to an amazing support group who understand everything that happens. There is no cure for these diseases and generally speaking a scan or endoscopy is usually done every several years unless a major issue arises.
Rheumatoid disease is evil. People think that RA is just a bit of stiff joints, like their grandma, but it is NOTHING like it. You don’t realize where all your bones, muscles, ligaments, tendons and bursa’s are until they are inflamed and torturing you. Sitting, standing, sleeping, moving, grooming, toileting and living becomes a daily ordeal. And that is just one of the symptoms. RA is a systemic disease, which means that it affects your entire body and not organ specific. I have had needles inserted into joints and areas that I didn’t even know could be so painful. The pain changes the way you live your life and what you can do. It is a progressive disease and I dread the thought of needing surgery and replacements in the future. I hate living with RA. It feels like your body is being run over and crushed. The fatigue is also a terrible part of life and it also restricts your life terribly. There is no cure for this disease. I have weekly low dose chemotherapy drugs for the rest of my life, daily steroids, sulphasalazine, plaquenil and I have tried three biologics drugs that have pushed me beyond breaking and I have had to discontinue them. I don’t know what I would do without my RA family who understand the hell of living with RA. I owe them so much. I am currently not able to weight bear as my feet, hands, hips and back are torture. I have a Rheumatologist for my RA and Sjogrens and MRIs every year.
Sjogrens is NOT my favorite disease either. It is another systemic illness and it can spread throughout your body. My eyes are constantly dry and I must apply drops every 5 – 10 minutes. I get infections in my eyes easily and I may have to put plugs into my tear ducts. I don’t make enough saliva either. Quality saliva is needed for healthy teeth and digestion, so my teeth are now suffering and I have terrible digestive pains whenever I eat. I must constantly carry water to sip on. My skin is always dry and so sufferers must constantly apply lotions to our skin. I have used oils, lotions, creams and anything that will help protect me. I must carry all these things wherever I go. Sjogrens has also spread to my pancreas (EPI) and I no longer make digestive enzymes, which means I must also take meds (CREON) to help me digest and absorb food. Without it I have terrible pain, malnutrition and deficiencies. It also causes extreme fatigue, brain fog, memory loss and nerve pain… so I don’t like that one either! I also take plaquenil and antimalarial drugs for this AI. There are no other treatments at this time. The support groups are few and far between but are a life saver.
Pernicious Anemia (Autoimmune) is a relatively new diagnosis for me and essentially means I don’t absorb B12 like everyone else. Is this a stand alone disease or a byproduct of one of the others? I don’t know. B12 is so important for normal everyday life and energy but it can effect so many other things too. I must have B12 injections for the rest of my life. There is currently no cure for this illness. I guess I can say that I am getting used to living life as a human pin cushion so perhaps this one might be winning?… not sure.
MS (or MS Specteum disorder). What is something nice I can say about this autoimmune disease? Hmmmm … well, I have met the most amazing people in my life in these support groups. They truly make my life possible. This is a progressive illness for me and it was the hardest to diagnose and the longest to diagnose for many reasons. The symptoms were spread out over decades and in the early stages I used to hide the symptoms from everyone, which only delayed things and prolonged my confusion and suffering. You see this disease is truly so diverse and affects everyone differently. Why? I don’t know. Nobody does. Not even the neurologists. It is a mixed bag of pain, problems, frustration, disability and can leave you shaking your head some days. Literally. The possible problems it can cause is limitless! I am currently only treating the symptoms as they come along and it can be hard to keep up with them. I take meds for tremor, general pain, spasticity, weakness, numbness, nerve pain, bladder issues, antiseizure meds, muscle pain and have taken strong immune suppressants and IV steroids in the past. It has caused me to lose my balance permanently, impaired my vision, lose my bladder control, endure bouts of trigeminal neuralgia (torture) and nerve pain throughout my body. It also means I can’t walk, run, drive and be the person I would dearly like to be; again. There really is nothing nice about this disease except the fellow sufferers. There is a saying amongst sufferers that “you don’t know until you know.” It also means that combined with my RA I have to rely on wheelchairs and disability aids to do even the simplest of things.
This year my face has been breaking out in butterfly rashes (mallar rash) and so I have taken pictures of it for my GP (primary carer). I have had the rash for several months and she believes that it may be evidence of an impending diagnosis of Lupus (SLE). The rash has happened many times in my life but I simply just endured it. My previous Rheumy had suspicions that Lupus was lingering around in my body but I didn’t want it confirmed at the time, and the drugs I take are the same as I would need to take for Lupus anyway. I know that sounds strange, but I am sure there are some that can understand why I feel as I do. Lupus would also account for all the UTI and kidney issues I have endured over the past 20 odd years. There is no cure for Lupus and the medications are all the same ones that I am currently taking for all the other AIs anyway. There are many similarities in treatments and overlaps between illnesses that it is staggering.
And oh the fatigue!!
I am currently not part of any lupus support groups but I know many Lupus sufferers through my time spent with other chronic sufferers. They are truly amazing people and I treasure them. All of them.
I have also endured gynological issues for many, many years and this year, when I am physically able, I will see a gynecologist as I have many symptoms of endometriosis. Sigh. If you have read all this so far than you are probably forming a picture of someone that isn’t at all in good shape. Not someone you would want to be yourself. I don’t blame you. But I like to think I have developed a pretty good sense of humor about it all because what else can I do? Life, as they say, must go on… Endometriosis is not fun and recent papers have suggested that it is also an autoimmune condition. Go figure! Well this diagnosis is yet to be confirmed but the symptoms I have is the stuff of nightmares! Thank god for analgesics and antispasmodics!!
… Absence seizures! That’s it! I have finally realized which diagnosis I like the most! Although this diagnosis might actually be caused by anyone of the other illnesses, my neurologist has been treating it and referring to it as it’s own identity. Since I can’t control them, they don’t last long (under a couple of minutes) and they don’t hurt, then I would have to say, without any question, this is my favorite illness of all. Incidences of the AS have increased each year and they do tend to leave a nasty headache and tiredness in their wake. But nothing as horrid and as painful as many of the other things I contend with. My husband simply waits for them to pass and it’s like someone pressing pause for a few minutes. I have been perscribed meds but not all medications play nicely together. And some are disastrous together.
Did I answer the question? Probably not as it was asked, but through a process of elimination of the ones I don’t like, I can say which ones I prefer.
I have discovered that there are no limits to how many illnesses one person can get and I am sure there are those who have more than me.
Any chronic illness is life changing. Any medication can be extremely difficult. We are all so different. And no two sufferers are alike. Illness has reinforced how unique we all are and has made me appreciate some people in many different ways; sick and healthy.
I don’t consider myself worse off than anyone else I have met in my travels, and I wouldn’t wish these illness on anyone. Anyone.
But I am hopeful of somethings too. Hopeful of change in the way we are treated and accepted. Hopeful of love and kindness no matter what lies ahead. Hopeful of better medications. And. Most of all, hopeful of cures one day.