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!
