In Oct of 2016 I was diagnosed with a super rare autoimmune disease called pemphigus vulgaris.
This was a life changing moment because for the first time ever…I Googled mortality rate. It said 5-10 years after diagnosis.
The data was outdated and I had no way of knowing that, but it has been updated since. I Googled it tonight and screen captured it for this post.
So…to say the least, my 49th birthday wasn’t very happy. Today is 5 years later.
December of 2019 was also NOT a very happy birthday. My friends threw me a party the weekend before (the awesome one where they dressed up like it was 1967, sang a song with LALA in it when I walked in, and gave me 52 rolls of toilet paper – not knowing that two months later there would be none on grocery store shelves!) Then I had a doctor appointment the week of my birthday.
I had relapsed in 2018 and it was now a year later, 4 more infusions, still on prednisone, and wasn’t seeing the end of the tunnel. I had gained 120 pounds back and was frustrated that I couldn’t get off the last 10mg of prednisone. I was scheduled for another round of infusion the day after Christmas and in January. He ran a bunch of tests and the week before Christmas he called me into his office.
I had already seen the blood test results…they were bad. EVERY inflammatory marker was HIGHER instead of lower. And lupus antibodies were more prevalent then ever before. I was aware that autoimmune disease is known to ‘cluster’ (which basically means multiplies to effect different organs) but I thought if I was dumping all these chemicals into my body I would be short circuiting that reality. I was wrong.
If I thought a diagnosis of pemphigus vulgaris had changed my life…I wasn’t ready to hear what came out of his mouth next…
“Lisa Ann, we both know when you were diagnosed with PV the average person lives 5-10 years. You are on year 3 and these numbers don’t look good. If this turns into full blown lupus” he just looked down at the floor – then put his hand on my knee (before Covid time) “Our goal at this point is to give you the best quality of life for as long as we can.”
I didn’t even have a response at the time…I was just in shock. I left his office and tried to drive home through the blur of tears.
My friend Eric randomly called and I pulled into a parking lot to answer his questions then he asked what was wrong because he could hear that my voice was funny. I consider Eric to be the big brother I never had…you know the one who actually cares. So I asked him if he was sitting down and I honestly told him what had just happened. I’ve only seen him cry once before, but I could hear it in his voice as it cracked when he asked…so what now? I said I didn’t know. That I had another infusion on the day after Christmas and that I would make some calls for other specialists as soon as I could…but it’s the same treatment protocol so…clearly it’s not working. So I don’t know.
I think that was one of the saddest phone conversations I’ve ever had other than mom telling me that she was going to die…and here I was basically having the same conversation about me 18 years later.
I only shared this information with one other person before Christmas, my pastor via email. He gave me some solid advice to share it with only a few people as soon as I could so that I wasn’t alone in this…but that he understood why I might not until after the new year.
New year’s eve my friends Mark & Jodie called and eventually I told them what was up. Later that same night my friend David also called. He was the friend who had realized how sick I really was in the fall of 2016 and took charge of getting people to pray and help me where they could. So what happened next really shouldn’t have surprised me. He sent me a video.
LOL he sent me a video about HIS dream to escape the world reality of life and just ride a bike!
A long story shortened…the guy quit his job and put a tent on his bike and hasn’t gone back to normal life since, and the last part of his answer to why he’s doing this was…
“Because I want to get to the age of 85 and be completely exhausted because I lived EVERY day as well as I possibly could.” ~Jedidiah Jenkins
While most people think of 2020 as a terrible year…I see it as one of the best years of my life. I made a decision.
I decided that I wanted to get to the age of 82 (yeah a few years less than Jedidiah) and be completely FN (yes I swear a lot) exhausted because I lived EVERY day as well as I possibly could.
Thus I started studying. I asked my research doctors for books, I researched on line, I listened to podcasts, watched videos, and took page after page of notes…and then I wrote a letter to my doctor.
Dear Damian (yes I call him by his first name) Giving me the best quality of life for as long as we possibly can, just isn’t fucking good enough. You can be the doctor that helps me die young or the doctor who helps me live well…your decision. Here’s a list of tests I want run and even if my insurance won’t pay for it…I’ll figure out how to…but I need your help with the scripts. LA
I listed out a bunch of vitamin, minerals, non alcoholic fatty liver ultrasound and allergy tests. He never wrote me a note back…just sent the scripts. He later told me…”What was I supposed to do? I didn’t know why you wanted all those tests…but I knew there wasn’t a point in asking.”
When all of the nutrient tests basically came back low or lower than low plus the fatty liver test was positive I knew what I had to do.
Although ALL of my doctors told me that none of this has anything to do with nutrition, much less gluten…I knew in my heart they were wrong. So I did it with numbers. I decided to do another SED test and went gluten-free for three months. This was right at the beginning of the lockdown. A friend joined me for dinner at a Cajun restaurant the night before and I ordered the most scrumptious Cajun fried chicken ever. The next day was the test and within two weeks I had lost my job in literacy development sales and the world went into lockdown.
Three months later, I did another SED test and had my first virtual doctor appointment. His first question via video chat was…have you lost some weight? You look thiner. ‘Yes…yes I have, about 30 pounds.’ Second question…your SED is actually in the NORMAL range…how did this happen? ‘I told you that I was going to go gluten-free for three months’ he interrupted…you are not celiac, the allergy tests showed that. I responded…I might not be celiac…but I am clearly intolerant of it. That rash on my legs…gone. My inflammation levels…down. My energy levels…up. I’m going to try to ween off prednisone super slowly starting this week.
In July, I sat in my doctors office half asleep, as it was 7am – after closing the store the night before and his office is about an hour drive away…I’m not a morning person. He comes bounding into the room with a smile in his eyes (can’t see his mouth through two masks) and excitedly tells me that I’ve lost over 50 pounds! Then tells me that everyone else seems to have gained 50! He’s a little surprised that I’m not all brimming with joy and I remind him that it’s 7am. LOL. “The number on the scale isn’t my goal…when you tell me that lupus is gone, PV is in remission, my a1c is normal, blood pressure is stable, c reactive protein is good, and fatty liver is no longer fatty…then I’ll celebrate…but until then…losing weight is just a side effect of eating well.” I think he was taken aback by my attitude so we got down to the important stuff and I went home to take a nap.
I didn’t need another round of infusions in July as originally planned. I was completely off prednisone by October 1st. On October 12 my dermatologist put in my records that I was in remission without daily maintenance medication.
There were some bumps along the way as I started brusing easily during the summer and found out that I was on the verge of scurvy…yet another weird side effect of too much prednisone. So more learning, more nutritional adjustments and more success.
In November I decided to try to make it through the month with no high fructose corn syrup. This was WAY harder than being gluten free. But I was determined and I tossed the cheap ketchup and looked at every dressing before I bought it. I learned the different names for that poison and I adjusted.
In December I listened to a podcast called The Drive when he interviewed Gerald Shulman, M.D. about insulin resistance and liver function…I had to listen to it multiple times to ‘get it’ but dang…dang…dang! I have been committing slow suicide since my 20’s! (Ironically…this podcast was published on my birthday in 2020!)
By March of 2021 I was EXCITED about getting bloodwork and the liver ultrasound. By this point I was aware that I had lost over 100 pounds, knew my blood sugar was stable, and was in remission…but what about the ultrasound and the lupus antibodies?
To Damian’s complete astonishment…the lupus antibodies were gone, the A1c was stable, SED was just a little elevated and CRP was lower. FATTY LIVER was reversed and my liver was officially normal size with only traces of fat. One year!
2021 has been stable. I’ve been learning how to cook and decided to start a certification program in functional nutrition. I’m still not financially stable after all the craziness in Wisconsin and then getting sick…but I’ve learned that I can survive on a lot less than the average person and that eating healthy food is NOT more expensive…it’s just more time consuming.
So today, December 7, 2021…it’s 5 years after being diagnosed with PV. I thought I’d be dead or leading a miserable existence, but instead I’m more alive than I think I have been since I was 20.
I bought a new bra for myself as my birthday gift…I haven’t fit into an 18/20 since I was 18/20…but I do now. I had grown out of my size 28 jeans at one point and now I fit into a stretchy 20!
I have survived 54 years upon this 🌎 today. I asked my community to help me celebrate by gathering 54 new pairs of men’s socks, some new underwear, winter coats, and other supplies for homeless men in Buffalo. Exactly 54 pairs were donated. A bunch of coats, boots, and winter clothing as well.
When we help others, I think it puts our own lives into perspective.
I so appreciate the my research doctors at UB who have guided me through using medicine to get my system to stop over reacting. Damian, my PCP, who might not agree with everything I believe…but steps up to help me accomplish the next goal. My friends who have walked this journey with me, strangers and friends who kept my head above water in so many ways I can’t start to explain, and God…I will always be indebted to the centerpoint of my mental and spiritual stability…without my faith I honestly don’t think any of the decisions I’ve made in the past couple of years would have been followed through on.
Happy New Year to everyone reading this long post. May God guide your decisions this coming year and may a large green leafy salad be a part of your daily intake. 😀