The Misconceptions I Had About Remission
When the doctor told me I had lupus, the first question I asked him was if I was going to die. He responded that he would do his best to make sure that didn’t happen. I next wanted to know if there was a cure. He said there was not and that the best I could hope for would be remission.
As soon as I started asking for more information about remission, the doctor said what I imagine many would say. He basically told me to deal with the fact that I had lupus and that remission may never come. If you’ve been reading my column for a while or following me on social media, I am sure you laughed at his response, because to just sit down and accept what someone else tells me is not at all in my nature.
From that moment on, my pursuit of a better life took me to places and had me doing things I would never have imagined. I took my healthcare out of the hands of U.S. doctors and moved to the other side of the world. I was a surf-and-turf girl who initially became a vegetarian and now am plant-based. I have been chasing remission from the start.
I recently shared that my last doctor’s visit yielded remission numbers in the bloodwork. This news came at a pretty low emotional point for me, and I was shocked and happy at hearing it. I STILL haven’t truly celebrated it. I have many reasons for not celebrating, but because this news has come, I want to share some things I thought were going to happen and what actually has happened.
I thought I was going to be well. I know that sounds crazy, but let me explain. I thought remission meant no pain, no more fatigue, a possible weening off of medications, and that I would be “normal” again. Keep in mind that this is only one round of bloodwork. In the few days after that, my numbers could have gone haywire again. But I’m optimistic and think things are starting to look up.
What actually happened is that the pain has diminished, but the fatigue still loves me. I didn’t get out of bed today until about noon, despite usually being an early riser. I still have pain, but it’s not as intense. My tummy troubles are still tummy troubles, and Raynaud’s disease — which I REALLY wish would go away — is sitting strong.
The biggest benefit to me so far is that my brain fog isn’t clouding my thoughts. I have been able to really focus, and that means a lot. I earn a living creating content for others and teaching online business, so a foggy head complicates things. Usually, when fatigue kicked in, the fog would be heavy. I’m happy to say that fatigue has been hanging around but has not brought the fog with it. I call that a victory.
Many of the symptoms I’ve been battling remain, but have reduced. The selfish part of me wants to be unsatisfied with this, but another part feels truly victorious. I have had a difficult time sticking to my regimen because I ask myself: If these feelings will only reduce, is the sacrifice worth it? I had to remind myself that nothing happens overnight, and the longer I am dedicated to the regimen, the hope is that things will diminish even further.
I don’t think the Raynaud’s itself will reverse, but the pain and fatigue may go away at some point.
I will keep moving forward. It took three years to see this progress, and I hope to continue sharing great news and encouraging you to maintain a positive outlook and continuously move toward your goals.
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Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to lupus.
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Comments
Peaches
Good Day,
I have a question... Do you consider Lupus to be a form of cancer? Before you answer, if it is not, why do they treat Lupus patients with chemotherapy pills or chemotherapy by IV?
This question is also for Doctors out there.
Kellie McRae
Good morning Peaches, thank you for your question. First I do not consider lupus as a cancer but I cannot answer why it is treated with chemo because I am not a doctor and that is not one of my treatments. To try to expand on that would be from a place where I have no real knowledge. I can say that they share in common a lot of things in the fact that once you have it, you can go into remission and it can cause problems in your life even after remission comes. I also know that if you have been diagnosed with cancer and you beat it, that it has a higher chance of coming back. Lupus has no cure but if you can find remission, there is some definite relief. I can tell you my pain levels are tolerable, my energy levels are higher than they were although I still battle with fatigue but it's not as debilitating and the brain fog has become almost non-existent. If chemo is the treatment they are recommending for you, I would definitely research the daylights out of it and know the risks and benefits, ask a ton of questions and ask about other options as well to be sure you're getting the best for your body. All the best and thanks for the great question.
allison kirkland
Peaches,
Lupus is an auto-immune disorder, meaning the immune system is attacking healthy cells in the body. Cancer is the abnormal, or out of control, growth of cells in some part of the body. They are very different diseases.
Chemo drugs are used for autoimmune diseases in much lower doses than cancer. The reason chemo is used for diseases such as lupus, rheumatoid arthritis and psoriatic arthritis is that one of the side effects of a chemo drug is a weakening of the immune system. A less active immune system isn't going to do as much damage.
Effectively managing lupus means doing a number of things, including eating a healthier diet. Diet, or any other measure currently available, won't cure lupus, but will help managing symptoms and potentially lead to remission.
The thing to keep in mind, when it comes to lupus, is that it's ever-changing nature makes it difficult to study. As a result, it hasn't been possible to effectively develop treatments specific to lupus.
Currently, there is no magic bullet, but the combination of healthy lifestyle choices, stress management, regular visits to your rheumatologist and the appropriate medication(s) will go a long way to managing the disease.
Peaches
Hi my lupus community. Hurricane in Heals
It is said that no one should die of cancer exept out of carlessness. So if we treat lupus with cancer medications, why not use the so called cure for cancer......
1. stop all sugar intake. (it is believed that cancer cells would die naturally without sugar).
2. blend a whole lemon fruit with a cup of hot water and drink it for about 1-3 months, first thing before food and cancer would disappear, which is also believed to be better than chemotherapy.
3. drink spoonfuls of organic coconut oil, morning and night.
Note: you can choose any of the two therapies after avoiding surgar.
Remember above is something a doctor sent in circulation as a cure for cancer, why not for lupus....
Hurricane in Heals - please private message me.
Kellie McRae
Hi again, Food is a trigger for lupus and I can say for me, going full plant-based has been a huge help but keep in mind, we are all different. What works for one does not necessarily work for another. Some forms of lupus are more aggressive than others but I agree, we should start with what we do know about the diseases. We know that stress is a trigger, we know that food is a trigger, we can do our best to control both of those but even in doing so, there are no guarantees that things will be better, we can only forge ahead and hope.
Linda
Which blood tests and levels show that you're in remission?
Kellie McRae
Hi Linda,
I had a test called Complement which measures C3 and C4 which are basically parts of the immune system that shows up to help fight off bacteria and viruses, our bodies are in overdrive doing this so the levels are important. Also, the ANA numbers are tested, mine were still within the lupus range but my complement numbers were normal. This was the first time in 3 different countries that I'd heard of this but apparently, if you monitor this frequently, it can show if you are even heading for a flare and they can adjust the medications to do what they can to keep it from happening. This excited me greatly when the test was initially explained to me. I am sharing a link that I found that pretty much explains it to you the same way the doctor explained it to me. I hope it helps. https://www.hss.edu/conditions_understanding-laboratory-tests-and-results-for-systemic-lupus-erythematosus.asp
Linda
Thank you for the link, that's helpful. My C3 and C4 have not been off since I was first diagnosed - in fact, my rheumatologist never checks them. But my Anti dsDNA and ESR are always elevated, as well as a positive ANA. When my rheumatologist sends me for bloodwork, the only thing she consistently checks monthly are Anti dsDNA, ESR and CRP. Although these numbers remain mildly elevated and above normal range, they are not as high as they used to be, and I've wondered if the lowered numbers indicate a possibility of remission. (Of course, she also occasionally orders a CBC and CMP periodically, as well as urinalysis.)
Kellie McRae
My pleasure. Well I have been battling for 3 years and the first time I ever heard of this test was back in October or November. Perhaps she hasn't considered the ways that knowledge could help. I know that it sounds like one of those crazy commercials to say "Ask your doctor about..." but perhaps ask her if she can start to include this test because as you can see, if they monitor those levels, it could help them manage our flares a little better. I will take whatever edge I can get to avoid the pain that lupus brings.
TC
Dear Kellie --
Please be patient and give both lupus and your body time to heal.
Our lupus didn't get to the low point of all pain and no energy overnight, and neither will our remission get to barely any pain and good energy overnight.
I've been trying to get to full remission -- with an emphasis on "full," meaning complete, meaning remission comes in degrees -- for the last ten years and have made dramatic improvements. My muscle weakness was so bad, I could barely walk ten years ago, and now I beat most guys 40 pounds heavier than me at the gym (I'm under 100 pounds at 5'5) and I'm still not there -- but I'm better, much much better, and I'm happy with better.
I've been vegetarian for 25 years and vegan for 3, but didn't go fully raw and oil-free until about a year ago, and going raw AND oil-free has made the most dramatic improvements of all.
"Goodbye Lupus: How a Medical Doctor Healed Herself Naturally With Supermarket Foods" has been a helpful guide on this journey, and I hope you'll find it of benefit to you as well.
Spirit-wise, "Gray Matter: A Neurosurgeon Discovers the Power of Prayer . . . One Patient at a Time" is a revelation and has changed my attitude towards lupus (and my doctors) completely. I hope you'll like it too. (I take that you're a fellow Christian.)
Be better :)
Kellie McRae
Hey there, I want it now <---- said in my 2 year old having a tantrum voice lol I know that you are 100% right, I just have no patience but lupus doesn't care does it? I can totally agree with the statement that I'm happy with better. There are still some tough days (yesterday, I was walking like a cowboy, those hip joints were not cooperating) but pain and energy wise, I can definitely say things are looking up. Thank you for the encouraging words, I promise, they are often needed. I'm glad you are doing much better (and are keeping those fellas on their toes). I think I've been doing something with my 10 squats a day (I'm calling it the Build-A-Booty workshop) :-) I will check out both books and thanks again for being so encouraging. I have been going more oil free (except with popcorn, can't figure out how not to burn it without a little oil) but hadn't gotten bold enough to go totally raw...yet. Its on the radar though.
TC
LOL, I can relate the "I want it now" -- because I do too!!!
Trying to swallow "only remission and no recovery -- ever" has been hard. Having to give up on so many things (foods etc) that I swore were what made life worth living has been hard too.
But every life has its own hardships, and by trying to see the grace in the trials I've been through, I can see the life lessons that I've stubbornly refused to learn that lupus eventually forced me to accept, and I'm sorry to say I'm an all-around better person because of lupus. My lupus probably wouldn't have got to where it was if I had learned the lessons earlier. That would've done wonders to my chronic stress level and would probably have helped me skirt a lot of the disasters. But better late than never.... :)
Huge congrats on your beautiful bloodwork results. They are AMAZING. (And squats are amazing too <3) My numbers ain't there yet! I can totally see you leading a completely different life a year from now. Just don't be so hard on yourself and your body RIGHT NOW because both you and your body have done AMAZINGLY well. :)))
Kellie McRae
Oh how I wish I could say I can't relate to so much of what you have shared. The food! OH I MISS CHEESE lol I have to agree with you on the lessons learned. Several months ago, someone was interviewing me for a podcast and asked if I could change anything in my life would I. I told them no and of course they asked about my battle, lupus is not nice but it really has given me perspectives on things that I know I would have never come to without it. It has also made me a more compassionate person. I'm glad you learned some lessons, better late than never for sure. Thank you for being super encouraging and sharing your story. I love hearing the positive stuff, especially because I know being positive is truly both difficult and a choice.