My Autoimmune Disease: Living with Rheumatoid Arthritis

I wrote a similar post over a month ago now on how I’d been diagnosed with Rheumatoid Arthritis and as it was all new to me, I felt really alone with it all and was hoping there were others out there who could share their stories with me. Almost two months later and I’m ready to do an update!

If you haven’t read my last post which I’ll link here, and you’re unsure what Rheumatoid Arthritis (RA) is, here’s some info:

RA is a chronic and progressive autoimmune disease that mistakenly attacks the healthy cells in your body, causing inflammation (painful swelling) in various joints of the body. It can also affect and cause problems in organs such as the heart, lungs and eyes. Long term, it can result in deformity and immobility.

At age 20, I had a left knee injury which caused the onset of my RA. My knee became seriously inflamed and swollen and very painful. Walking let alone anything else became a task. A year later after many tests, x-rays and MRI’s, I was told I had RA and at that time, it had spread to my right knee. A month later, it had spread to my right elbow and the left side of my jaw. Typically, RA is more common in hands and feet but it can affect all joints.

The inflammation, swelling and pain is called a ‘flare’ and flare ups can happen very frequently or every now and again. RA is genetic and my dad was diagnosed with it several years ago yet he’s only experienced one short flare up in his wrist. Whereas I on the other hand, feel as though I’ve had this flare for roughly a year now. Shortly after my knee injury when it became inflamed and began to swell, it has never gone away. I only have bad days or better days.

Generally I’m happy, smiling and getting on with life and as much as I don’t want this to come across as a pity post, this can be a very serious disease and I want to share my honest story so far. The mornings are always the hardest. Because I’ve been sleeping for several hours, my joints become very stiff and I dread the morning stretch because it’s so painful for me now. My legs and right arm can no longer straighten properly so where my body naturally wants to stretch out, the swelling and inflammation acts as a painful barrier. I can barely open my mouth first thing in the morning because of my jaw so I try to keep yawning to a minimal. I practically crawl to the bathroom in the morning where getting up and down from the toilet seat is like mission impossible and I’m currently trying to learn to use my left hand for most things like brushing my teeth.

Honestly, I hate having to do things early in the morning because it doesn’t allow my joints time to ‘warm up’ so it’s all very painful. I’m very slow and can’t fully focus on whatever I should be doing. On bad days, it can affect my whole body because for all my affected joints, I usually have to substitute another part of my body so although my knees are inflamed, a lot of the time my legs generally ache because I’m shifting my weight and the pressure elsewhere. I often have a lot of pain in my hips and lower back too.

By mid afternoon, I’m usually back to my idea of my current normal self and I’m a lot more active and can move around more freely however as of lately, I am really struggling with fatigue. I feel exhausted all the time even with a decent amount of sleep. One thing I really have to focus on is my diet and what sort of foods I’m eating. There are a lot of inflammatory foods such as take away meals, fried foods, alcohol, bread, fizzy drinks and any processed foods. It might not sound a lot but on a daily basis it can prove a little hard to control. There are certain foods/drinks I have to have to help reduce inflammation such as fish, ginger, garlic, chai tea, green tea and fruits.

I’m currently waiting for my next few appointments to discuss treatment going forward. I’m expecting to take steroid injections mainly for my knees but as my disease has progressed I’m hoping to receive another medication for pain-relief too. I have been lucky enough to have private healthcare for the past few months which really has helped to speed up the process and answer a lot of questions for me. I’m sure I’ll do another update once I’ve started my treatment!

elisekirsten xo.

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Another Diagnosis!

I usually write posts like these as a way of raising awareness as well as reaching out to others who can relate to my life, and know they’re not alone in this! This post follows a similar theme except this time,  I’m the one who needs to feel I’m not alone in this and hoping there’s somebody out there in the same boat.

My long term readers will probably know that almost a year ago now, I had a sports related injury that affected one of my knees and a lot of my day-to-day activities. Well, a quick little update – all the swelling and pain of my left knee (the originally injured knee) also happened in the right knee! This was a cause for concern which left Doctors absolutely confused. Over time I’d had nurse’s, GP’s and doctors take a look at my knee and now roughly eight months on from the initial injury, my specialist doctor looks me in the eye and admits he’s never seen a case like this.. GREAT! I was referred to a knee surgeon because we were now looking at the possibility of at least keyhole surgery.

From the pictures you can pretty much see how over time, my knees have completely changed and swelled as well as how visibly obvious it is that I’ve lost almost all muscle tone. By this point, I’m exhausted. It’s been almost a year of constant pain and no answers, no treatment, no cure and not to mention it was all getting worse! However, one visit with the knee surgeon and he was ready to diagnose me… with arthritis! I was told I have Rheumatoid Arthritis, but what is it??

Rheumatoid Arthritis – a chronic progressive disease causing inflammation in the joints and resulting in painful deformity and immobility, especially in the fingers, wrists, feet, and ankles.

In layman’s terms, my immune system attacks the cells in my joints, causing inflammation, swelling, thickening of the tissue and pain! The only thing that really runs through my mind is, I’m 21 and I have arthritis! There’s a lot of things I feel I can’t do anymore, or when my friends say “lets go and do *insert activity*” I have to think, can I really do that? It’s great that I now have a diagnosis because I can finally begin treatment and working towards regulating my flare ups. I’m aware I have to change my lifestyle by avoiding certain foods, taking different vitamins and reintroducing light exercises but honestly, it all feels quite surreal. There’s still a number of unanswered questions and as much as I understand RA, I still feel so unsure about what this means for me and what I can expect long-term. Especially as it’s now spreading to joints other than my knees, I can’t help but worry about how far this will go!

I would love to hear your stories! Especially if you’re around the same age as me. If there’s any advice you can offer or anything you feel I should know, please get in touch! I’m also more than happy to share more of my story so hit the contact button my lovelies!

elisekirsten xo.