I Tried to Cure My Autoimmune Disease, and it Nearly Killed Me

It’s finally occurred to me why I can’t get myself to workout (besides the occasional slow walk) or work on my diet.

It hit me during a conversation with my sister. I was telling her, that I just can’t do it. But why? She would ask. You loved working out before- and it was a major saving grace when it came to fighting my depressive and/or anxious thoughts.

I then thought about how I haven’t wanted to die for awhile now. It’s a nice feeling to want to wake up in the morning. I should note that this wasn’t due to mental illness, but a painful physical illness, brought on by my (healthier) dietary restrictions.

Last summer, towards the end, I had had enough. I didn’t know why fluid kept accumulating in my legs and I had no idea on how to fix it- and doubted any health professional could help me.

I knew it could be due to a blood clot, and that it could be deadly. Instead of scaring me, it offered me the hope of relief.

I saw Dr. Jeff in October, and this would be the beginning of the end (hopefully forever!) of my swelling problems. Throughout the months of getting better, I kept thinking of the half-marathon I’m scheduled to run in two months from now. It was so exciting that I was finally getting better and I couldn’t wait to start working out again.

By the time school let out for Christmas break, I felt good enough to start with Pilates and light runs and/or run/walks. I didn’t do anything during the two weeks while I was on break- except for a slow walk on the last day.

I rationalized that it’s easy to be in a routine while working during the week- so I’d rest for the two weeks and resume my workouts in the new year.

Now we are a month into the new year, and I’ve got nothing.

I’ve also wanted to work on my diet- maybe not as strict as before- but experimenting so that I can hopefully feel better. Dr. Jeff recommended that I give up dairy (can inflame joints), so I did for a few days before caving into the easiness of eating without checking ingredients.

I have no excuses. A few weeks ago, my favorite Peloton instructor did a ride with one of my favorite 80’s band and I was so excited to fit it into my schedule. But I haven’t even penciled it in yet. 🤦‍♀️

My knees have been still slightly stiff and painful and Dr. Jeff said that cycling is one of the best things to do, plus I could easily do the ride with little exertion and ease into it slowly, so I truly have no excuses!

I’m still proud of my actions last spring and summer. I think of last April, when I fearlessly dove into all efforts to heal my RA. I spent so much time shopping, meal prepping (haha, remember that GIANT lunchbox I had to start bringing to work with all the containers of fresh food?), and even began to eat meat after 3 years of being vegetarian.

I felt good for the first few weeks, then it went all downhill. I continued to be healthy throughout most of July, then eventually stopped altogether as my legs swelled and I could barely get around.

During that conversation with my sister, I realized something- I had acquired a ton of anxiety in regards to that healthy lifestyle I spent so much effort living. As much as I do want to go back (it felt so good mentally, and honestly the healthy food DID taste different – in an awesome type of way), I’m terrified.

I don’t want to downplay the disease, or offend anyone, but it does seem like I have PTSD relating to the efforts to heal my RA.

Maybe my efforts need to not think about RA at all.

Maybe my efforts should focus on feeding the inside of my body nutritious foods, regardless of how the outside feels. ‘Maybe my efforts should focus on feeding the inside of my body nutritious foods, regardless of how the outside feels.

Last spring and summer, I refused to identify as someone who has RA. I told people that I had “symptoms” or RA or joint disease and was trying to cure it with diet.

When I went to Dr. Jeff, he asked me a question that perplexed me a bit.

“Do you have the real, like old school RA?”

What the hell does that even mean??

I said, “I don’t know- isn’t RA just a collection of symptoms anyhow??”

I don’t remember what we said after that but he never really explained himself and I didn’t even want to ask. He did refer me to a new rheumatologist who he said was more holistic than most.

I saw the new rhuemy, Dr. Dowd in early January.

As he looked at the deformities and swelling in my hands and feet- he asked about my RA factor and if it had been checked recently and told me that my symptoms don’t even look like RA and he wasn’t convinced I had it. He said osteoarthritis was likely (and also caused by eating too many carbs/insulin resistance).

I thought that was funny since all spring and summer, I declared that I don’t have RA 🤣😂🤣

He ordered blood work and xrays and a follow up appointment a few weeks later.

Well, two (or both-I don’t know how many there are) of my rheumatoid factors are sky high, so it looks like I have it. Probably the “old school” RA- whatever that even means.

Dr. Dowd added Methotrexate to my biologic medication. It’s an injection that stings and I HATE it. I’m hoping it helps the pain I’m still having. The last thing I wanted was more medication, but I give up.

SO, if I change my diet because I want to be healthier, treat my body with respect and love and I want healthy food to taste so yummy again– then it seems less intimidating. To focus on my health without worrying about the pain or RA at all is a completely new concept and I think might help me overcome the mental and physical ailments this disease is causing me.

So.. moving forward…

I will take my RA meds diligently.

I will try to think of my disease and health/healthy habits as separate entities.

I will hop on the Peloton this weekend, and I will commit to a regular workout regimen.

If I need help with my diet, I will reach out to one of the coaches I’ve been following. I’ve been considering working with a coach, but apprehensive because they will likely know nothing about my disease, AIP diet, workout limitations, etc. So basically, I was way too smart for a coach.

I feel differently now.

When I sat down to write this out this morning, I didn’t have a solution. I think writing it out made me realize that I need to look at this differently. Taking more medication doesn’t mean that I’m giving up- or can’t live a healthy lifestyle.

Maybe I do have the old school Rheumatoid Arthritis- but that doesn’t even matter.

I think to start being more healthy, I’m going to spend a couple of weeks getting back into a workout routine (very slowly) and paying attention to my water intake. Too many work days go by and I still have a full water bottle at the end of the day. I should have drinken it all and filled it up a couple more times throughout the day. But I drank coffee instead 🤦‍♀️

I’m better than this.

Alright blog, I’m counting on you to keep me held accountable 🙌😁💋

Thank You, Body

It’s almost springtime and I am super pumped for the half marathon I signed up for nearly a year ago. Man, life was so different back then! I remember for awhile during the summer, wondering if I would ever be able to train for this half, or even attempt it– or if I’d have to take the financial and mental loss.

I’m happy to report, that not only do I plan on finishing this half, but according to the stats last year and my current pace, I’m likely to place in my age bracket! The only real goal I have for this is to complete it, but it would be frosting on the cake if I placed, and so I’m hopeful, and so very excited.

Sometimes my thoughts ponder on the last year– my biggest growth year– in every way possible. Simultaneously, the most rewarding and most frustrating– the happiest of times riddled with pain and suffering, and I am so grateful.

Boy was I frustrated with my body at times! The end of the school year was tough with my physical ailments. Finally, when school ended, I was able to purposely move my body daily via hour long leisurely walks. I was slow, but so proud to get out there daily. And then my legs stopped working.

I was getting used to, and accepting that my body is the boss. I also had to accept that I was expecting my body to fully heal itself– really a miraculous (but totally doable!) expectation. I took it as a sign, I was still moving too much and needed more rest. And so I rested, and rested, and rested.

I listened to my body, and took proper care of it, for the first time in my 45 years. Just like quitting alcohol, 30 days in felt like eternity, and my brain expected that my body should be back to normal already.

No brain, you drank everyday for like 10 years, 30 days isn’t going to fix it. Realistically, I think my body truly started to heal from alcohol after abstaining for about a year. There are no quick fixes. After 30 days on the autoimmune protocol, I was discouraged to still have pain– and sometimes be much sicker than I had been. This made no sense to me at all. For the first time in my life I was eating the proper nutrients– fresh food, fresh produce with clean protein daily, and I continued to suffer with pain and fatigue.

So many times I wanted to throw in the towel, with the excuse of, “It’s not working. It’s making everything worse!” At least that’s what Betsy was telling me. That little devil was so sneaky, she even tried to get me to start drinking and attempt to drink in moderation. During a time with desperate feelings in June, I came close to relapsing. Thank God I didn’t– thanks to my support system– but was uncomfortably close.

I knew in my heart that drinking would not only take me back about 100 steps, it would be so bad for my physical and mental health. I also knew that giving up on the AIP diet would be detrimental to my health and that regardless of how bad I felt, I needed to continue. I also knew that all of the new flairs and pain were somehow a part of the healing.

I complimented my good diet with spiritual wellness practices. I visualized healing during meditation, did reiki on myself regularly, said daily affirmations, went to sound bath healing meditations, got acupuncture.

I joined new facebook groups and learned all about iron deficiency anemia and how extra iron can cause arthritis symptoms- was this a missing key? I also learned that some people ingest Borax to kill the pain. I would leave no stone uncovered in my mission to heal.

I’m so glad I stuck with it, as there was a stark difference in my health when comparing the beginning to the end of the summer. It was like after 90 days of the autoimmune protocol diet, everything started to click. I was able to correlate problematic foods more easily, now that I had a clean slate to work with. By August, I felt like a brand new woman.

June 2022

My body is the boss of me. Thank you, body, for showing me the way.

Day 1131 & My AIP Life

This coming week will be week 4 of being on the AIP (Autoimmune Protocol) diet.

On one hand, I can’t believe that I haven’t had caffeine & sugar, and gluten & dairy for this long. On the other hand, I can’t believe I’m not really feeling any different 😬 I would have thought that I’d feel amazing by now.

I keep telling myself that my gut’s been leaky since at least 2013/2014 & that it’s just going to take time to heal.

On the flip side, I’m eating some super delicious foods. I think my tastebuds have changed and I highly enjoy the most simple things like chicken soup.

Eating meat has been fine. I’d still rather have beans. But health comes first.

I think my favorite thing in the world is fresh spinach leaves. I eat them with everything & in smoothies. I love to steam the leaves with cauliflower rice & coconut amino/ginger seasoning. But really, they’re good with everything, and delicious hot or cold.

My workouts these past few weeks have been few & far between. I’m spending a ton more time in the kitchen preparing meals. Also, since I love sweets, I usually spend hours on the weekend making AIP approved goodies. I know that if I don’t have them on hand, I’ll end up cheating, so it’s mandatory.

I’m not hating my time in the kitchen. It feels good to cook & eat fresh & I’m loving all the produce on display.

Lunch for one day

Dessert

It’s easy to see now, how my struggle and subsequent abstinence of alcohol has helped me with this diet (Geez I hate that word, protocol, instead maybe?). The alcohol journey has taught me to be more receptive and respectful to my body when examining how things make me feel. No more dragging myself through horse shit- that ship has sailed.

So it helps to be honest with myself and that’s a big part of what I’ve learned.

So thank you, alcohol journey. You truly are the gift that keeps giving.

Joint Control

Day #1046 – Pity Party Post

Hey look ma, No Hands!!

Autoimmune diseases really suck.

I had a flared ankle and foot for over a year, until I asked for physical therapy, actually went and worked through the problem. My ankle muscles plus all the supporting muscles got stronger and after awhile I was no longer walking with a limp.

This was back in 2019. Now my hand/wrist/thumb joints on that same side of my body have been flaring since the start of Covid, back in spring 2020. I finally and recently started physical therapy for that, and I thought it was going well.

This time it’s so much harder. I dread going in, as my therapist cranks on it in every which way. But I usually feel better and my hand/wrist is looser afterwards.

It’s been a few weeks and my grip is still very weak. It measured a “zero” the first day, and now it’s up to five, my therapist was hoping it’d be at 10, but said we’d keep working. For reference, my good hand, my non-dominant hand, measured a 50. My therapist said the dominant hand should be around 60, 10 more than my left hand.

I didn’t ask him if my disease would or could, prevent my healing or progress. I didn’t want his opinion, unless it was completely optimistic and I’m not confident he is.

It can be really hard without the use of a hand. Especially in the kitchen. I feel like I’m constantly needing help opening things, or even cutting things on a bad day.

But… with PT and a hair test I recently signed up for, I was feeling optimistic. I knew that I could get better, just like my ankle problem- right? The hair test will give me some specific information about my gut health and toxins in my body (that could be causing these flares).

A few nights ago, I woke up with excruciating pain in my right hip. It felt like bone on bone, and it was painful to lay in any position- and tossing and turning made the pain even more unbearable. A couple times hubby rolled over and put his arm over me. The weight of his arm pulsed through my hip and I felt like a crazy person crying out in pain and telling him that just his touch was too much.

The next day, luckily, was much better. I had a hard time going up and down stairs for the first half of the day, but then it was painless.

I’ve also felt weird pains in my elbows lately- which is new. They aren’t too bad and have been short lived, but alarming regardless.

My theory is that as physical therapy loosens up the toxins causing this, they are circulating and going elsewhere. This happened a little when I started Pilates classes, but went away after a couple of weeks.

Yesterday, I woke up with my other hand/thumb swollen and painful. It’s just as bad today. I have no idea if this will get as bad as my other hand.

I’ve been using leftie for nearly everything these past couple of years. How will I open a door or pick up my cup if both grips are non-existent? I’m in this weird place of having a disability – but am majorly missing accommodations that would be helpful in certain situations. With one bad hand, I can manage, but two? 😰

It feels like my disease is laughing at me.

“Oh yeah? Catch me in this hand!” A classic cat and mouse chase. I give up. I can’t keep up with its pace.

My RA is a complete bastard!

That’s my rant. I’m very lucky that I will hopefully have a direction soon with the results of the hair test.

I’m holding onto the belief that I don’t really have Rheumatoid Arthritis, but have all the symptoms from a leaky gut and or imbalance instead. I can help myself get rid of this. I’m grateful for my body/systems, and will be even more so when I can use all my parts again.

And if that’s not in my future, at least I can say that I looked at all my options and tried my hardest, but must have more to learn.

I’m going to try to spend some time reading Louis Hay’s book, Heal Your Body, and type up corresponding affirmations to hang around the house.

And continue with my home exercises- this time with both hands.

This is a tough test, but I’ve got it 💪🏻