The Faces of Guillain Barré & CIDP Summer Edition- Elizabeth G. Update

My GBS Journey Part 2

Last year when I wrote part one  http://thegimpygirlwhocould.blogspot.com/2017/05/the-faces-of-guillain-barre-2017-day-10.html?m=1 I was 52 and only about 4 ½ months into my recovery from Guillain Barre. We had gone to our annual black-tie event, the Make A Wish gala, and I was in the wheelchair. I was starting to walk again but very carefully and not far—more like if I needed to use the bathroom, I could get in there with the wheelchair but then step to the toilet. Which was huge progress. I had pretty high expectations, in reading what I had written. I had been hoping to be bike riding, gardening and boating—basically, ‘normal’ by that summer.

Make a Wish Gala 2017

Well, fast forward a year and I am still recovering at 16 months out. I am 53 now, and definitely have had huge improvements. I did three more rounds, 5 days each, of IVIG in April, May and June of 2017. I ditched my wheelchair in June completely, though we have it, just in case. The stair lifts were taken out in July, so that’s when I really started using the stairs—no choice! I still have to hold on to the bannister but I am up and down all day long.

In July, I was having terrible back pain, and realized that now that I was walking, I had never had my hip rehabbed—the hip replacement that started this whole thing by triggering GBS. My muscles were so tight it was pulling my lower back way out. So, back to PT this time with the focus on my hip, and that helped immensely. At this time, my blood pressure was all over the place—spiking a lot, so I was put back on 2 different meds for that. GBS really screwed that up for me. In July, I also started to drive again! I still won’t drive a long distance, but I am comfortable around town. What a HUGE sense of independence that gave me.

I wasn’t gardening, much…I puttered but I was wobbly and certainly couldn’t kneel—not sure I would have gotten up! In June, we adopted a new rescue, a 7 month old wild, not trained, black lab named Otis. Our dog Brodie wasn’t sure what hit him and was not thrilled at first, though now they are best buds. I’m not sure what the hell I was thinking, lol, because it was a challenge, to say the least. But we love him! I didn’t start going on the boat until late August, and I didn’t do much but sit and enjoy, but it was great!

In July, my company, Earth Mama, eliminated my position. It was a huge blow. Financially and emotionally. I was the director of sales and really loved that company and the owner. They gave me a very large severance, which to get, I had to sign a release saying I would not sue them. I probably would have had a case, disabled and over 50 woman…but elected to sign and just walk away. My husband said I needed to take some time and focus on me and rehabilitation and recovery. So I did! Once PT ended, I joined the YMCA and started silver sneakers classes.

In November, I started working as a consultant, and now have 4 companies I am working for and I’m really loving it. If I need to go to a class, or a walk, or take a nap, I can! We spent the winter going to Vermont on the weekends. My husband had hoped I’d be cross country skiing….that did not happen, but I snow shoed! One day, over 4 miles, which was actually a mistake because I got on the wrong trail. I was shaking from fatigue, but I did it. I learned if I fell in the snow, I could get up by myself—good to know. I started walking both dogs together, and now every day at lunch we go for a walk. Not far, because my endurance still isn’t great. But we go! My vertigo finally went away for the most part so I am hopeful I’ll be biking. I think that with a kneeling bench, I might be able to garden. I certainly do so much more now—I can clean the house—just not all at once. I can grocery shop, as long as I have rest time after.

My Rheumatoid Arthritis is still not under control and we are struggling to find the right combo of medications for me. My rheumatologist doesn’t want me on biologics because they can cause demyelination. Since my legs/feet are still demyelinated and damaged…well, that could be bad. But I think I’m ready to risk it. My RA is bad in my feet, and I think it’s impeding my nerves healing, so I want to try Xeljanz, which I know some other GBS survivors that have RA are on with great success. I started Plaquenil in January, so am now on two RA meds and prednisone, and my RA is still not managed. Sadly, often the case for most of us with RA. The combination of RA and GBS isn’t fun.

I live for the day that my feet don’t feel like blocks of wood, and no prickly, pins and needles feeling. 16 months with no let up is getting old. The good news is, I have weaned totally off opioids, and am in process of weaning off blood pressure meds. Can’t stop the Gabapentin, I know that from missing a dose! Yikes! I am still way too fat….2 years plus on prednisone has me in steroid induced cushings, but that is reversible if I can ever wean off prednisone. I am doing the Keto diet, but so far only one pound, but, that’s recent so I’m seeing movement at least! I am about to start CBD—just waiting for my package to arrive. I figure, it’s worth a shot!

So, here we are a year later and this coming Thursday I will be flying for the first time since this whole mess started. We are going to Florida for a quick trip to see my parents, just 4 days, but I am excited. I’m a little nervous too, but I put us in the more space seats on Jet Blue and am doing wheelchair assistance. My Mom’s health isn’t good, and I told them to please not plan a million activities—Mom can’t do it and it will be too much for me! I suspect travel will take it out of me a bit. Then the following weekend we are going to the Make a Wish gala up at Mohegan Sun Casino. I found an outfit that I can wear with flat shoes that I think actually looks nice, and I’ll be walking, not in a wheelchair!

Overall, I know I am doing well. My neurologist said, at our last appointment after my last EMG, that he now considers that I HAD Guillain Barre, but now, am recovering from Guillain Barre. All the damage was still from the initial event. They can tell by patterns. Pretty cool. He said he is sure that my RA is impeding healing—inflammatory disease will do that. He also said that considering everything I had going on, Rheumatoid Disease, a hip replacement, three days later, hit with Guillain Barre and unable to walk within a day, then pseudomonas in my hip incision so on major IV antibiotics for almost two months, that I have made a remarkable recovery. He said the word remarkable three times, so, I guess it’s true. I get frustrated, wanting to do more. I remind myself and my husband that I will never be totally ‘normal’ again.

Make a Wish Gala 201

Even if I completely heal from GBS, I have that pesky RA and there is no cure for that. I’m independent, don’t need help for much, can manage the dogs when I need to, can just DO things. So, considering where I was a year ago, I am so, so happy!

The Faces of Guillain Barré & CIDP Summer Edition- Ashley #102

In November my junior year of high school I contracted strep throat. It was the same week as the regional competition for my varsity cheerleading squad and as a classic type A perfectionist I wasn’t going to let it keep me from competing. I refused to go to the doctor fearing that he wouldn’t let me compete. My mother says that she still remembers the fight, and the moment she decided to let me win. I should have listened to my mother.

This is me before I got sick. It was a cheerleading competition that was my excuse for not treating an infection believed to be a catalyst, so I thought this was fitting

The first week of December, I believe it was on a Thursday I woke up and my left knee had swollen to the size of a grapefruit. We all assumed it was a stress injury or that I was tired from my hours of squad practice, on top of tumbling and stunt practice, as well as routine cardio and weight training. Since I was busy that week with an event I had planned for another club I chose to ignore my knee. I was a smug and overambitious teen. Within a few days my whole leg was swollen, a few days later it was purple, and by the next week the swelling had moved to other joints throughout my body and I was struggling with memory loss and brain fog. In a matter of a couple weeks I had become too weak to walk, and couldn’t even lift a mug, let alone toss my friend in the air above me. I watched my team compete in the state competition from the sidelines as my body was slowly falling apart. In one month I lost 15 pounds from my petite 5’4” frame and we had no idea what was happening.

This was in the early 2000’s. I went to hospitals, doctors, specialists and the best they came up with was to give me arthritis medication. My pediatrician finally was willing to think outside of the box a little and tested me for strep. Oh yeah… we had totally forgotten about the strep. We now know that the infection went haywire in my system since it was untreated and settled into the weakest parts of my body, which for me at the time were my joints. This is one of many small miracles in my life, as the infection never made it to my heart, so I am still here to type this. They gave me a bunch of antibiotics and my pediatrician and my mom decided to try homeopathy, as they had no idea what else to do. I never fully recovered from that infection and started to show signs of autoimmune and immunodeficiency but it would be over a decade before I had any answers.

In the spring of my senior year of high school, just as I thought my health had stabilized and I was ready to head off to college I got mono, really bad mono. They discovered that I had it because I broke out in heinous hives all over my body, which I learned is a rare mono thing. This was days before my senior prom, for which I had bought a very sassy and short salsa dress and fabulous shoes. This was the first time I had to rearrange my plans last minute because of my health, something that I have now mastered as an art. In my closet I had an old floor length homecoming dress that came with a satin wrap. I wore that with elegant gloves I borrowed from my mom to hide my hives and flat sandals because my feet were too swollen to fit in my fabulous shoes. It was my senior prom… I made it work. This mono infection sent my to the hospital more than once and was followed by a surgery to remove a cyst from my uterus. I also graduated from high school during all of this. We don’t really know, but it is believed that these infections and stressors on my body were the catalyst for me to eventually develop CIDP.

The fall of that year I moved to Boulder, to start my journey at the University of Colorado. My first week of college I had three different infections, and my health continued like this. I know now that I have a primary immunodeficiency and later developed a common variable immunodeficiency from so many infections, and was born with other immune problems. My health continued to be poor, but my perfectionist personality was louder, and in my mind I had convinced myself that I was healed as long as I took care of myself. This kind of worked for me until the second semester of my sophomore year. While taking a biology exam one evening my left leg and foot started to twitch, and by the time I got up to turn in my exam I had a slight limp. These spams continued in my legs and arms, but I decided not to tell anyone. It wasn’t until a few days later while at the climbing gym was I busted. I used to love climbing, well, bouldering to be specific and was pretty good. However, on this particular day I was falling off of every single route. Even the warm up routes were too hard for me. My boyfriend of the time walked up to me, looked me straight in the face and told me to grip his hand. I couldn’t, and so off to the hospital we went. Everyone thought I had suffered a stroke since all of my symptoms were one sided, but the test results came back normal and I was discharged with no answers.

The spasms continued and over time the damage to my nerves become more and more noticeable. I also started having seizures, but they were not epileptic. As I continued on with my studies my health fluctuated like a heartbeat. I would be okay and then I would suddenly fall apart completely, unable to walk, in desperate pain and developing more and more symptoms all the time. I went to the doctor a lot, and the hospital. They all concluded that I was making it all up for attention. So I went to every alternative doctor I could find, acupuncturists, herbalist, massage therapists, reiki, medicine men, chiropractors, witch doctors (seriously), yoga therapists (this is how I ended up becoming a yoga teacher) and bought a whole lot of snake oil. I also drank scorpion tea once, but for real… it was awful, and didn’t help. I had one doctor tell me that I needed to rewire my brain and that it was simply mind over matter. I spent the next several months studying neuroplasticity and squeezing my friends hands in class, calling my mom and having her just start talking and all kinds of strange things to “distract my mind from the pain”. Neuroplasticity is super cool, but it didn’t help.

In 2009 I graduated and became a full time yoga teacher, barista and retail employee, because it was 2009 and I have a degree in Cultural Anthropology and French language. I lost a lot of barista and yoga teacher jobs because my health would suddenly collapse. I continued to ride the rollercoaster of the unknown and eventually stopped going to western doctors all together after I was told that I would no longer be treated unless I took antipsychotics, antidepressants and a bunch of other stuff that gave me horrifying side effects. They did not do a mental health evaluation at that time and I have since confirmed that I do not suffer from psychotic episodes and was correct in refusing the medications. However, that was then and those were my options. When I was in an okay spell I worked and saved money, I exercised to build up strength, I got ready for the crash I knew would come. When the crash came I nursed myself back to health with the help of family and friends.

 This was my 21st birthday and right around when my CIDP symptoms started to show up.

Then I met Lee. In 2013 I met not only the person of my dreams, but also the person who would be the catalyst to me getting diagnosed. When we met I had been in a good phase for about a year, maybe two. My interstitial cystitis was off the charts bad, but I had been told years before that my bladder just did that, so I thought I was mostly fine. Then maybe 5 months into us dating I had a massive neurological attack, and totally fell apart. Normally this is where people run, but Lee didn’t run. He asked me if I would give seeing doctors one more chance. I put up a fight but eventually agreed. At this time my bladder frequency averaged 50-70 times a day, so we started there. I found a doctor, made an appointment and went in. For the first time in my whole life, she listened to me. They did a scope test and diagnosed me with a whole bunch of bladder and pelvic problems, which I am still working on and learning about today, but the most important of them was Interstitial Cystitis. This meant that I officially had an autoimmune disease and I was suddenly legitimized as a real patient with real pain. I was weeks away from my 27th birthday. She realized that I needed to see someone about my immune system issues and sent me to her colleague who has been my immunologist ever since. After a few months working with him he realized that I needed to see a neurologist and referred me to one of his colleagues. I had seen over 10 neurologists at this point, all of which had concluded that I was crazy, but I promised a cute boy that I would give it one more shot, so I made an appointment.

I don’t remember the details of it all, I remember I was very sick, I was walking on forearm crutches, my feet were sickled, I was in horrible pain and I couldn’t stop having non-epileptic seizures. This neurologist and his staff saw right away that something was wrong. They did CT scans, MRIs, nerve conduction studies, biopsies, eegs, and who knows what else. Then in March of 2014 when I was 27 years old my neurologist told me that I have CIDP, and that he was going to start me on IVIG, which would hopefully stop the deterioration. We left that appointment in total shock; there was something wrong with me. After everything I had been through, I was right after all. I received my first IVIG treatment in April of 2014.

This is me and my partner Lee the day before I started my IVIG therapy. We were at my grandmother's house for Easter, I had been diagnosed about a month before with CIDP.

This was from my first infusion of IVIG. I was so afraid of the bubbles in the medicine, but once my nurse told me it was normal I decided it looked like champagne and that I was going to like it.

 I have had to get my heart checked several times over my life, I have tachycardia, dysautonomia and POTS and they think it is connected to my CIDP. This photo is from when they were diagnosing my CIDP but had to also check my heart.

There is no real before and after to my story, it simply is. One day when I was 17 I woke up with a swollen knee and nothing was ever the same again. My journey of illness has been more of an evolution than a revolution, it happened slowly and not all at once. Over the years I lived undiagnosed I would have periods where my symptoms would go into remission states, and I was able to a lot more then than I can now. It was during these years that I learned how to listen to my body, work with her and take care of her. I was on my own in so many ways that I was forced to step up and take my wellness and life into my own hands. I am so blessed to have found the doctors that I did, and have chosen to never play the “what if” game or think about what I have lost. This is my life, and it has changed in so many ways, so many times that change and inconsistency are my normal. Yes I have residual problems and symptoms, and I probably always will, but I’m also alive. Being alive wins! Being sick is not the worst thing to ever happen to me, in fact it has made me a much better person. This is who I am, this is my body. I have seen the awfulness of GBS as both my father and cousin had it and made full recoveries. I live everyday with the unique challenges of CIDP. I do not see this as a tragic situation though, it is simply different. I am okay with different.

This was my first vacation outside of Colorado after being diagnosed. I have always been a huge traveler, so has Lee and we waited 4 years before I was stable enough to fly somewhere. We went to New Orleans and it was magical.

This is on our most recent vacation to California. I had spent the night before vomiting from pain, but I was in California and I wasn't going to let it ruin my fun. We had to totally change plans that day, but embraced the plot twist and spent the day watching seals... amazing!!! This was my I am a warrior and can rally photo lol

Yes I still have residual problems. One of the most difficult is crippling fatigue. I am know to fall asleep on the floor, or in other strange places.

This is me and my partner Lee now. In this photo we were at a farmer's market and I got a dizzy spell so we had to sit down. We have come so far together and have a really happy and full life even with all the modifications we have to make. I love this photo because even with how sick I was that day, we had such a good time.

This is one of my most recent infusion days. I get my IVIG every 3 weeks at home now. It has become so routine. This photo in in my bedroom hanging with my cat with my IV in my arm. I think it shows how we have accepted this reality as our normal.

• I am located in Denver, Colorado
• I was diagnosed in March of 2014 when I was 27. My CIDP started showing up around age 20 or 21 and I first became ill at age 17. I will be 32 in August
• I have a lot of residuals yes. I don’t live in even close to the same body any more.
• You can email me at ASargent108@gmail.com find me on IG @ashleythesarge or @the_art_of_chronically or my YouTube channel art of chronically or my website artofchronically.com (this is not live yet but will be very soon)
• I am pretty sure I have a variant. I have been told that I do not have a “textbook case” of CIDP and that all of my other conditions make my CIDP more complicated. Also the fact the two family members have had GBS, and autoimmune is very common on both side of my family is something that people like to note in my account.
• My treatments used are IVIG and when needed oral or IV steroids. I have been hospitalized but I don’t remember the treatments they gave me. I also have worked with a physical therapist, and use diet, exercise and lifestyle modifications as one of the best ways to treat my symptoms.
o I also use medical marijuana, which helps a huge amount, and essential oils, which also help a huge amount.