D. is 37 years and she has not just one, but 6 auto immune diseases. Her story is at best moving. She’s well educated, intelligent and very positive. She prefers to keep her anonymity as she’s too shy, but she wants to help by telling her story and making auto immune diseases knows together with their symptoms. She is currently living in the UK and this country has been “her chance of still existing” – she says this with sadness.
Hi 😊. Who is D.?
I am a 37 year old female. I am a wife, daughter, sister, friend and I am very passionate about my professional work field. I enjoyed my work choices in life so much so that it never felt that my work is a burden and I have been leading a pretty normal life, an unremarkable one – not that now it is more remarkable, until my auto immune diseases took hold of the way things are looking for me at the moment.
When did your disease/s started? Which were your first symptoms? How did you get to a diagnosis?
In August of 2021 I had Covid for the first time, followed by a surgery done 3 weeks after testing positive for Covid (it was a gastric sleeve surgery as I wanted to preserve my health in the long run and the kilos I had been adding to myself were just piling and piling). After the surgery, my recovery was painfully slow, with intense pains, and compared to my other colleagues who had the same surgery at the same time with me, My recovery was really slow – later on I found out that this slow recovery was due to my auto immune issues.
In December 2021 I started having some unusual symptoms, such as less strength in my hands (as in being unable to use my hands normally, I could not even pick up a pen) and I felt like having sand in my eyes (I supposed I had an eye infection which got treated with antibiotics at first, to no avail), then my mouth and throat started feeling drier and drier, especially during the night time, regardless of my water intake during the day and all these symptoms became more acute. Somehow these symptoms were present in an acute form since I had Covid, but if I looked backwards at my life, they were always an issue somehow. I was always that child that was getting an arm or a leg twisted very easily, even during my sleep. I never got on well with cold and I was always a sick child, with infection after infection. In fact, my health has never been great and I always suffered I was not like others and that I could never trust my body.
During my teenage years I was not able to walk for quite some time and a doctor diagnosed me with a collagenous disease – I never knew of this diagnosis until after my diagnosis that happened this year, from my mum – and he also told my mum that I would never make it into my 40s.
A collagenous disease is synonym with auto immune disease when the dr. cannot differentiate and diagnose a person more precisely, but that doctor never got into details, he never explained my mum what he understood. I won’t mention here my desperation, my hate and my want to hurt that doctor just because he had the power to make things better for me, so I could have had access to a normal life but he preferred to not do anything.
Long story short, I got in A&E by end of February where they prescribed me high doses of steroids for 1 week and 7 days later I was booked to see a specialist in private. In March I started lots of tests, blood tests and many other types of tests, I had a tests pretty much every other day for 1 month.
Towards begging of April they already had an idea of what the problem was, but by then I was almost immobilised and my pain levels were so high that I was biting my teeth to check if they fell off because of the pain. After one of the last test my body decided to stop trying to keep me alive. That test was a colonoscopy, and by then I was barely able to eat 1 apple/day for the week before.
When your body gets so weak, you are not even able to realise how weak you are and you always push yourself that you need to last just a little bit more as on the 7th of April I had one more scan and then on the 11th of April I will see the consultant and hopefully he’ll have a diagnosis for me. My luck was that my colleague from the clinic I work realised how bad I was and she called an ambulance for me. They took me straight to A&E where I got admitted to Major Trauma, then admitted into hospital to High dependency unit, I was almost in a coma. What made the difference to make me think I still can keep going was that I was still very much conscious at that stage.
I spent the next 2 week in hospital, visited and looked after 11 different consultants of different specialities and I got diagnosed with SLE, Myositis, Sjogren and Raynaud.
The nephrology team concluded that I was their little miracle in 15 years of practice as because of my gastric sleeve surgery I ate small amounts and often, but I also drank 2l of water/day, so my kidney function had not been affected. Because of how bad I was they were ready to start me on dialysis and put me on a transplant list for kidneys. But because of my great relation with water, I don’t have any renal involvement at this stage. So when seeing my results and how bad I was, my nephrologist kneeled in front of me and started shouting that a miracle has taken place, her first miracle in 15 years of career – she was of Indian heritage and had no knowledge of orthodoxy and miracles as they are seen and understood by us – so ever since then I call it holly water.
After my diagnosis, although I was very far from being independent, I was released from hospital with carers, a service offered by adult social services in order to help and support me in my recovery and my husband. These ladies were showing up 3 times a day, helping me take a shower, bringing me food from downstairs, changing my bedding, or bringing my meds from pharmacy and many other things to just help us cope. I had this service for 6 weeks for free and it was a condition of my discharge from hospital, and we saw it as a bliss, even though it was hard to just get naked in front of a complete stranger I had met 5 mins before to get a shower.
What treatment were you prescribed? Did it help you?
During my stay in hospital I was put on a treatment – prednisolone (in the meantime I am taking half of the dose I was started on, and the dose I am currently on is considered quite low), hydroxychloroquine sulphate (plaquenil in Romania) and mycofenolate mofetil, plus a long series of specific vitamins and minerals in high doses, so they can help in the long run my body while being on prednisolone.
Mid-summer this treatment proved itself to not work properly for me, or how my doctor put it – although there are some improvements on this treatment, the side effects of these medications and risks of them are too high and they did not make the changes we expected them to make, so while there is improvement, it is not enough to keep them going and a new treatment plan was drawn. So I was prescribed Rituximab. In the meantime I had 2 infusions with Rituximab and I am waiting for it to start working and have some results. I am currently weaker as Mycophenolate is out of my system and Rituximab has not yet started working (my understanding is that it usually takes 10-12 weeks from the first infusion to start working and have some results), but I still hope in a normal that is closer to the norm, although I am aware that my normal will be far different than most of the peoples’ normal.
Because I lost most of my hair before being diagnosed, I was prescribed a steroid shampoo which helped my hair grown and now it is thicker than ever before, but I have been advised to keep as short as possible as it gets thinner as it grows longer and then it will be noticeable.
I have a bit of a round full moon face because of the steroids, but cutting salt completely from my diet has helped me no to retain water and not to put weight on. I actually managed to lose some weight on prednisolone.
Did you also try a diet? Did it help?
I think that everyone making it so far will think that a diet will help her and she would have great results on an AIP diet and etc. But I have a story here too. Before all my hell broke loose I had some major digestive issues which lead me seek help from homeopathy when my GP could not help and I got too tired and concerned by going 10-12 times to the loo, with loose and mucous stools. I did tests (blood tests, allergy tests etc.) and this is how I found out I am gluten and diary intolerant. So I have been gluten free for 5 years and diary free for 3 years, I keep a Low Fodmap diet, which is recommended to those who have IBS/IBD problems since I had issues eating foods such as lentils, beans, peas etc. and I also and histamine intolerant and foods such as spinach, tomatoes are an issue when I am ingesting them. I cut sugar out of my diet in august of last year.
Ever since being on prednisolone I was able to taste things I have not eaten in years, as the steroid treatment sent me to the other end of the spectrum when talking about digestive issues. Also because I have lost so much weight I was asked to stay put on the number of kilos I was. But now I should be losing the last few kilos I still have to lose to get to my target healthy weight and as there are signs that my body has adjusted to steroids.
I don’t eat often processed foods and I don’t microwave my food, I don’t use aluminium foil and everything we eat is home cooked. I don’t use store bought stock because of intolerances and allergies. In terms of meats (chicken, turkey, fish, lamb etc.) I eat quite a bit as I don’t have many options of foods I can eat to sustain me. I rarely eat carbs, but I do eat a lot of beetroot as I love it and cauliflower and sweet potato. My diet does not contain soya which I cut out 4 years ago because of an underactive thyroid. I somehow eat some dairy free products, but that often. Having said this I don’t eat diary free cheese substitutes because of the long list of things they contain – they just don’t feel natural enough to me.
I cannot eat gluten free cereals, so even almond milk is not making my cut that often, and lactose free milk is not something I can have either.
Aside I am trying to keep a nice routine so I can keep my mind engaged and to charge it with positive energy, but there are always falls at times too.
What else, aside from medication and diet, did you try and found it working for you?
I am very much aware of the power of mental health so I am working constantly to keep my spirit up. I don’t watch news or TV. I see a wonderful therapist to whom I have not enough words to thank and I go for confession and Holy Communion very often. I know for the world we live in Confession is a weird choice of a routine, but I found Confession and Holy Communion really working for me and keeping me together to be myself. In those weeks I don’t manage to confess and get Holy Communion I barely make it through and my mental health is at its worst, those week when I Confess, things become bearable, while in those weeks when I do them both I feel like flying and things seem easier to digest and go through.
I was sorry to hear about your article about the necessity of water in one’s life and that not everyone received properly (”Our daily water”). I told you so far about my relationship with water and how it saved me in this past year and how I now call it holy as it’s done a miracle for myself. I as a child I struggled with weight gain and because of this weight gain (I am now able to say so) I was using the loo far more often than other and I chose not to drink enough water as part of my diet. Years later and after 4 pneumonias in 2 years I started working with a homeopath in order to help my immunity cope better and she asked me to drink 2l of water/day. I ended up going to the loo at least 3 to 4 times a night since I had added more kilos in the meantime. But after my gastric sleeve surgery which I had because I had piled many kilos and I wanted to preserve my health for as long as possible – obesity can be a trigger for many types of cancers – I was asked to drink again 2l of water daily. So I managed to listen to this advice and I managed to lose the weight nicely, as it was expected. Now that I have a normal weight, I don’t wake up to use the loo in the night, even though I drink 2l of water a day and I sleep 8-10h/night because of my illnesses and the stage I am in my long road of recovery.
There can be many causes to auto immune disease. Which one do you think have triggered yours?
I’ve been thinking of the reasons for my auto immune disease and what I did to get here., but I do not have an answer, although last year was a particularly difficult year for myself which ended with losing my best friend. But on the other hand, I had hand pains and I was struggling to use my hands doing fine motor skills even during the summer of 2020 when I still did not have Covid and somehow I was good and healthy. I think that for myself this is how it was supposed to be, and I was dealt a bad hand at life that’s making me lose game after game, and although this, I am still trying to win a war, even though I know that my chances are very small.
Do you have an equilibrium by now? How does a day in your life look like, what do you eat and what is your lifestyle?
I am currently eating 5 times/day, 3 main meals and 2 snacks, at specific times. I don’t eat sugar and before this April I was not drinking coffee either.
But ever since prednisolone and morphine prescribed for pain management I am in the other extreme which I did not know before and an extreme I really don’t mind at all. I do prefer this extreme to the other one, it’s easier and brings a more relaxed and organised life with itself. This extreme has offered me the chance to try and taste things I have not touched for years, so I did taste some gluten and dairy products I missed during these years. I am currently fighting to stop eating and craving sweets, using stevia to substitute sugar. And I am debating if I should cut out coffee again from my diet. I have a low blood pressure and I found coffee is actually works at keeping it closer to normal and on infusion days coffee was the big saviour of the day as it was making my blood pressure high enough to be able to have the infusions.
But in order to finish talking about foods: I eat lots of animal protein (as I have no choice of vegetal protein to eat) and I try and eat as many and diverse vegies I can. I also noticed that during the time I tasted everything under the sun (dairy and gluten) the level of my pains was higher, but ever since I am back to my previous diet the level of my pain has decreased and this can be noticed in the number of painkillers I take daily.
This week I looked into using CBD oils to help me with pain management and to try and use even less Morphine than I am currently using.
I’ve always looked into finding a doctor specialised in immunity to sort myself out, but I now know that such a doctor is a Rheumathologist.
There is a schedule for me to start physiotherapy to recover more, but they’re waiting for my disease to stop attacking me so badly so I can start that process.
What do you find the most difficult, talking about a healthy lifestyle and a functional life?
At present each new day is a new try to reach an equilibrium, I have days when things are good and I am starting to think of returning to work and doing this and that, but I also have days when I just need to sleep it off and let the day pass me bay. I miss myself, as I was this time last year when I had a normal full time job, working 5-6 days/week, 10-12h shifts. I am currently at home, just at home. I used to love to cook, but now I struggle with strength and energy. I try to go out for a walk daily, but it does not work like that and there are days when I don’t leave my bed at all, and days when it feels like I am learning to walk once again.
I have days when I miss myself and days when I am holding my heart in my hands and cuddle it so it does not break in million pieces. I have days when I am happy, without a specific reason, maybe just because I still am.
I have learnt that is enough to be and we need to celebrate more the fact that we are! I have learnt not to expect things and to leave myself into God’s hands, as we are never able to plan and know what day is expecting us round the corner.
What advice would you give to people who have just been diagnosed with an autoimmune disease? How would you encourage them?
I am afraid I don’t have any advice, I can only speak of the things that work for me, but I would probably push you to make time for yourselves, for the heart that lies within yourselves and to feed that little heart of yours. During hard times, such as the ones I am currently in, this little heart of ours pushes us through and it feeds us to just be.
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