What remission means to me.

Remission in medical usage is the absence of the activity of a disease within a patient who has chronic illness or disease.

I have reached a place just over 2 years into my hashimoto’s/celiac/antiphospholipid syndrome that I am symptom free unless I am triggered by external events like stress, being ‘glutened’ or other disease occurring.

So most days I feel good, I have energy, I am pain free, happy and feeling well. In fact, I feel better than I have in a very long time as my diseases were a long time manifesting so that the slow onset of symptoms felt ‘normal’ to me.

It’s been a long trip to remission. I want to share some of the sign posts for me along the way.

You can see from my picture here the puffy face, the extra weight that had suddenly come along with no real reason or explanation. Unbeknown to me my hashimoto’s was coming into full bloom as I struggled with feeling tired and unmotivated on and off, energy suddenly disappearing as if someone had pulled a plug. At the time, all of my symptoms fit menopause so I blamed it all on that and waited to get through it.

 

 

Looking at this picture hurts my heart still. I am posing with one of the plates from a new dinner set my children gave me for Christmas.

I was so sick I was barely functional. The crash came suddenly in November and I went from thinking I had a very bad virus to being dangerously ill. You can see the jaundice in my skin, my lovely yellow tone from my liver and kidneys being at such low function.

My face and eyes are still swollen, my hair is half it’s volume and my smile does not reach my eyes. I felt weak, sick and awful.

This was before I ended up in hospital a few weeks later on a heart monitor and found out that the thyroxine wasn’t working and my TSH was going way back up. At original diagnosis it was 129 and dropping very slowly. When I went to hospital my TSH was 56. I felt like I was dying.

 

 

Five months later all wired up for 24 hours to make sure my heart was ok. It was healthy and functioning, the issue was that I didn’t have enough T3 circulating through my system to keep it pumping as it should. I was experiencing chest pain, heart fluttering, very low heart rate and very low blood pressure.

You can see though that my skin colour is much better, I have life back in me again and the AIP diet and natural desiccated thyroid were really beginning to kick in.

I was still low and slow but my days were getting better. My body was beginning it’s healing journey and I was in such awe at what it was able to do when I met it half way and gave it what it needed to work effectively. My hair was still falling out (diffuse hair loss) and not long after this I cut it short.

Its only been in the past few months that I have felt really comfortable claiming remission.

For a long time I equated remission with being ‘cured’ which didn’t seem to fit someone living with 3 chronic illnesses.

Remission for me is that when I look back at the long, long list of symptoms I was having, from the swollen feet with the soles feeling like they were bruised, wanting to sleep all the time, zero energy, anxiety, depression, hair loss, dry flaking skin, joint and back pain, brittle nails, zero focus or motivation, weight gain, puffy face and eyes and being disabled that I don’t have them anymore.

I feel more motivated, energised, focussed and happier than I have felt for years. In fact, in many ways, I now feel better than I have ever been before. It’s like lights in my brain that I didn’t know I had, have begun to light up and my old belief that I was just lazy, unmotivated and undisciplined are being blown away. I had been living with chronic illness most of my life, totally unaware and it’s only looking back now in hindsight that I can see just how much of my life that it had been affecting me.

When I finally felt better, my biggest fear was that any little flare would send me right back to where I was. I was afraid that my feeling good was just a momentary thing and it took me a while to trust my body that it would continue to heal.

Even with my recent issue with an infection under a back tooth, lots of dental work, high doses of antibiotics, pain and stress, my body bounces back magnificently and I feel better once the flare is done.

Remission is different for everyone so I was lucky enough to have Astrid, Jo and Lexi share with us what remission is to them.

 

Astrid Fox. Ulcerative Collitus.

http://www.healmeinthekitchen.com/

When and why did you feel ready to say you were in remission?
In March 2016, Our family took our first “big” trip since my diagnosis to Mexico, the trip was a true test and a big accomplishment on my part.

After the trip I was inspired to continue moving forward with my healing. A month after adding nutritional ketosis into my AIP was when I saw remission on the horizon. You can read more in these posts

http://www.healmeinthekitchen.com/2016/06/happy-3-years-diagnosis-and-gutsy-walk.html

http://www.healmeinthekitchen.com/2016/09/my-latest-health-experiment-nutritional.html

What were your criteria for remission? 

My criteria for remission are minimal gastrointestinal issues like having full control of gut functions, no more pain in my gut or in my joints, having brain fog lifted, and experiencing a sense of contentment  to fulfil my day to day duties with energy. 

What does remission feel like to you? 

Remission feels Amazing!!! It feels like a rebirth, a second chance, Groundhog day ” the movie”, The “Ah-a” moment of I finally get what a working body feels like. 

Does a flare mean you are out of remission? 

When I was a month into remission, I had a little tumble and hurt my tailbone. The injury brought on some minor digestion upsets possible from the interrupted sleep, inflammation and pain. When I went to see my GI, despite the discomfort, she did not qualify that I was having a flare.

So I haven’t really experienced a real flare since proclaiming remission. In my opinion, if I was faced with signs of a flare, I feel confident that I have now gained enough knowledge about my body to calm my gut and body down. I have gathered wonderful tools and support, in my figurative healing bag, to turn things around.

Does remission mean that you are back to normal? 

Being in remission has introduced me to a new “normal” where I am stronger and happier than before my diagnosis. I did not only change my diet, I changed my lifestyle and general outlook on life. 

How would you explain remission to others? 

It is hard to explain remission to others who has not experienced the debilitating lows of a flare, but I would describe it as being locked in a confused body. From those close to me who witnessed my rock bottom, the look on their faces is priceless when they describe what they saw. Gratitude. 

Did you have any fears about saying you were in remission?

Yes, it took me a couple months to finally say it out loud in fear of jinxing it. But as time pass, I saw more and more evidence that my body has healed beautifully for me to use the R word. 

Jo Romero. Psoriasis

http://www.comfortbites.co.uk

I used to think that remission meant you were completely free of all your symptoms and I used to look forward to when that day would come for me.

But having healed my psoriasis over the last three years I think that it depends more on the person. Changes to my diet and lifestyle meant that I have healed the psoriasis from my legs, feet, elbows, knees, most of my scalp and face.

I still have a tiny patch of psoriasis on the back of my scalp that’s so far refused to budge. I’m coming to terms with the fact that although it doesn’t give me any problems – it’s improving slowly and rarely itches – that this is what ‘remission’ might look like for me.

I also feel like accepting where I am now instead of fighting for total remission reduces the stress and pressure on my healing. I just take each day as it comes.

I prefer to say that I’m 95% in remission – the psoriasis that’s gone hasn’t come back – but it’s better for me than saying I’m not in remission yet. It allows me to recognise and put positivity on how far I’ve come.

Lexi Haverley. Hashimoto’s/Reynaud’s

https://aycetobetterhealth.com/

Remission with autoimmune disease brings up a lot of debate. Can it REALLY be achieved? In my opinion it can, with a few factors.

For me, remission with autoimmune disease means that that the chronic illness is lying dormant and the host can live a “normal” lifestyle where they have moments that they may even forget that they are carrying this chronic illness around inside.

It does NOT mean a person has to go medication/supplement free, as autoimmune disease can cause permanent internal damage. For me with Hashimoto’s, I will have to be on thyroid medication for the rest of my life because there has been damage done to my thyroid prior to being diagnosed. My antibodies, however, have pretty much completely disappeared and my numbers are now the same with those that do not have Hashimoto’s.

For Reynaud’s, I have one finger that still loses circulation on occasion due to damage, but overall, it hardly happens and it’s not widespread. At my worst, my hands would be in pain with almost every grocery trip. It sounds crazy, but I recall a trip where I was on the verge of crying by the time I reached the check-out area due to frustration and pain. The fact that it does not happen is remission in my book.

For most, it also means that to reach and keep remission, we must keep up a strict diet for management. Just like there is a place for medication and/or supplements, the permanent damage may cause us to continue reacting to various foods, and that’s ok. While food sensitivities sometimes do go away, for some they linger on – in remission or not. These things do not define us.

Unfortunately, just because you are in remission and your illness is dormant – it does not mean a flare up cannot occur. Remission does NOT mean your illness is gone, it means that it is not active for long enough that you feel like your pre-ill self. Since reaching remission, I’ve had two flare ups – one after “trying” gluten and one this past spring, that I haven’t been able to explain.

In fact, during my last flare up, my thyroid antibodies were still perfect and doctors told me if I’m still feeling bad in a few months, to come back. I conquered that one by going strict AIP again and all resolved within a few weeks. On occasion, I still feel random “autoimmune” symptoms, but I can usually link them back to eating something or pushing myself past my limits – such as not sleeping enough or not eating enough nutrition.

Sometimes I hesitate to say that I have reached remission because I wonder if people will question me, but I feel better now than I can ever remember feeling and I can do most everyday activities without limitations – therefore, to me my illness is in remission and is not actively disturbing my life.

Yes, I still must be careful with how much I push myself and I’m currently in my second go of reintroductions for AIP, but I can hear my body when it doesn’t like something and when it whispers for me to slow down. I am also careful as to what I consume, as well as the products I use and know I need to focus on nutrient density daily.

With autoimmune disease, our bodies just need a little extra TLC on a regular basis. With it, they stay calm and collected and help us overcome the little bumps along our journey.

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I hope that these stories of ‘what remission means to me’ have given you some inspiration, hope and insights.

warm wishes

Kerry