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 🙌😁💋

Evil Dr. Google

Day 40 – It was a long Monday, filled with testing and feeling exhausted.  I’m not sure why I’m so fatigued– I’ve been eating a lot cleaner maybe my body is detoxing– or maybe it’s something else.

I hate hate hate Dr. Google right now.  I spent a good part of my Sunday being overjoyed at the results of my recent blood work.  I’ve been eating vegetarian for many weeks now and now am eating mostly vegan.

I read books and have gone to lectures that promote a plant based diet for good health.  While I believe all of that, there’s always a small voice inside me that questions it.  ONLY because I have an autoimmune disease and many people find success with controlling it with things like a paleo (meat) diet, a diet heavy in organ meats (YUCK) and bone broth.  So naturally, while my mind and conscious feel better eating this way, there’s always the question, “Am I making my condition worse?”

Well, number one:  My bloodwork showed my Uric Acid is slightly on the high side.  This would support Dr. Tent’s diagnosis of Gout.  It makes sense that crystals form and move around in my feet–probably why my pain moves around.  So I looked up how to lower your Uric Acid and it said to avoid the following foods:

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Well look at that!  I don’t eat ANY of those, hooray!!!!

Secondly, my B12 levels are HIGH.  Mine are 1751, and normal is 200-900.  B12 is something you need to worry about when not consuming animals, so this was nice to see.

I took this as a sign from the Universe that I was on the right path and all is well.  It provided me an immense amount of comfort, as I said before that little voice was always questioning this way of eating.  And another great thing, is that after recently putting on almost 10 pounds, in the past couple weeks that I’ve been eating cleaner and running harder, I lost almost all of that.  I was SO excited about my health.

Enter, Dr. Google….

Mid morning today, I decided to see what to do/what it means when you have a high B12 level.

I did not get the answer I expected.   Liver damage, kidney damage, leukemia and a few other weird (but fatal) diseases could cause your B12 level to be high.

Say What?????

Well, all my chemistries (BUN, CREATINE, ETC) were normal, so I’m assuming my kidneys and liver is ok.

So, it’s official.  I am dying.  My fatigue and weight loss make sense now.

I mean, I’m a little comforted by the fact that when my rhuemy called me to give me results she said all was fine except low iron stores and slight anemia (I sometimes need iron infusions).  So SHE wasn’t alarmed.  But, I don’t trust her to pick up on things.  Like she knows I have horrible pain in my feet, you think she would have seen my Uric Acid and told me to try to lower it with my diet.

So..  I printed all of my results after work and emailed them to my hematologist (who manages my iron/anemia) and stated that I was concerned about the high B12.

And so I wait.  And worry.

I hate you Dr. Google!

—————————————————UPDATE————————————————–

It looks as though I might not be dying after all! Spoke with the nurse at the hematologist’s office.   They are not concerned with the B12 level.  I will stop my supplement and get 2 iron infusions one week apart.  My appointment with the hematologist will be a month after my last iron infusion and she will check my B12 levels.  She did not see any reason to be concerned though.  Furthermore, I read that low B2 can cause the B12 levels to be high.  I have several symptoms of low B2, so I’m going to try to eat more B2 rich foods.   That is all!!!  I didn’t want anyone to lose sleep over my predicament 😛

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