Eleven Months with Guillain-Barre Syndrome

It’s the start of a new year, but the legacy of 2012 will not go gentle into that good night. Eleven months ago, I was in the critical care ward in a local hospital, trying to figure out exactly why I had no feeling in most of my body, and why my eyes were beginning to fail as well.

My eleven months of recovery has had its ups and downs. December was no exception to that pattern. I felt stronger at the end of the month than I did at the beginning, but I am also coming to terms with one inescapable conclusion: the effects of GBS will be around for a lot longer than I would like, and I will have to find a way to deal with this fact.

At this point, I still have some residual numbness on my face, in my fingertips and in my left leg that comes and goes depending on physical, mental and emotional stress. I knew about the physical and mental part, but I had one stunning moment this month that confirmed that emotional stress can cause a complete numbing of my face in just seconds. That was disturbing in the “oh great, now I can’t even get upset without GBS getting in the way” kind of way, but it also helped to figure a couple of things out.

I saw a different neurologist in December—one very familiar with both GBS and Charcot-Marie-Tooth disease. We spent a good amount of time reviewing my case, and, with the information about how my emotional ‘episode’ factored into my numbness, he was able to give me a little better prognosis and understanding of my condition. In his words, the connection between my peripheral nerves and my brain is like a frayed wire. Stress and exhaustion can cause this wire to enter an agitated state, like a short-circuit on your car that only causes issues when the road gets bumpy and the wire touches the frame. It doesn’t seem to be doing any further damage (and isn’t CIDP), but it is annoying. The good news is that there are some medications (like Cymbalta) that can help to mitigate these nerve issues. The bad news is that I tried Cymbalta for two days right before Christmas, and it completely messed up my body and my mind. I’ll be talking to the doctor again after the holidays to see if there might be something else with fewer side effects.

In December, I also began seeing a physical therapist to try to figure out how to fix my neck, and the migraines I suffered when it ‘went out’. As I’ve spent more and more time on the couch over the last two years, the frequency and amplitude of these headaches increased. The range of motion turning my head from side to side became severely limited. Within two appointments—doing stretching and massage and exercises—I had nearly full range of motion restored. Now I do the exercises daily, and the muscles are really beginning to come back. I’ve slowly expanded the workouts in both intensity and by adding other exercises, and soon I hope to be squeezing some cardio work into my day as well.

The other big thing that happened, GBS-wise, in December, was final resolution on my Long-Term Disability claim with Guardian Insurance. My claim had been initially rejected because my doctor inaccurately filled in a form. I then appealed that decision, and filed new paperwork. That appeal took until mid-December to resolve. Guardian agreed that I was disabled until the beginning of June 2012, but at that point, I had returned to work for too many hours per week to continue to be qualified as disabled (despite the subsequent loss of ability through August and September). So after the 90 day exclusion (per the contract), the only payment I ended up getting was from May 3-June 3, and only a partial payment for that, since I did work part-time. So the final payment, after 8 months of processing was less than 1/3 of a paycheck for me—not exactly what I was hoping for.

Below are a few lessons learned from my case for anyone else with GBS who has to deal with insurance companies for an LTD claim:

  1. Do not let any subjective paperwork go directly from a doctor’s office to an insurance company without first looking over it yourself. Guillain-Barre’s symptoms are very difficult to quantify. You could try to work 30 hours a week immediately following your discharge, but you’d be comatose after the first week. It’s not like a physical trauma, where you can measure the healing, and the insurance forms are all based on quantifiable measurements. The doctors will have medical records they can send directly, but if the insurance company sends you forms to be filled out by the doctor, review every line and checkbox yourself before you put it in the mail, and understand what each line implies. Make a copy of the blank form before you give it to the doctor, and if there is anything you disagree with on the form, have the doctor fill it out a second time. It sounds like a pain, and it is—you will have to review a lot of paper during this process—but better to do it in the initial filing than to subject yourself to the subsequent delays caused by the appeals process. Simple things like indicating that while your vision is 20/20, your ability to stay focused is limited to X hours per day are critical in the paperwork for vision impairment.
  2. Read and understand your LTD policy. Know what the insurance company calls a full return to work. Is it full-time for a day? A week? A month? A pay period? Is it 80% of your normal work level? Are there salary limits on your claim? What happens if you go back, and then can’t continue to work?
  3. If you are approaching the threshold for payment (i.e. the 80% of normal hours), be sure that you can continue doing that for the rest of your life before exceeding it. There’s no going back if it breaks you after two months and you need to take more time off. Hold steady below that threshold until you are absolutely sure you are better. If you haven’t had a cold virus yet since your recovery started, wait until your first one is over to see how your body responds. Mine tanked and took weeks to get back to normal.
  4. The insurance company is never going to ask you how you are doing. They don’t care how much stress going through the appeals process adds to your life. They don’t care that going months without a paycheck may force you to go back to work before you are ready, or the strain that it adds to your family life. They won’t ask for clarification from you about anything. They also won’t ask for clarification from your doctors. If it is not on the paperwork you (and the doctors) file, or in the medical records at the time of treatment, it doesn’t exist.
  5. The insurance company will call your employer, so make sure your employer fully understands the implications of everything they say. If they say the work is completely sedentary (like typing) and your doctor says you are approved for sedentary work, the claim will be denied. There is no level of sedentary when it comes to office jobs (not like lifting heavy or medium or light boxes, x number of times per day). Ask to be in the room when the call happens, or conferenced in. They can’t stop you from being there. Don’t take no for an answer.
  6. The insurance company will regularly browse your web site (if you have one) looking for reasons to deny coverage. I will miss the bump in stats I got from my insurance company going through every one of my posts from 2012, and checking back weekly. If you blog regularly (or even irregularly), be prepared for that activity to be held against you, even if you do it on the weekends. They will not pay attention to dates or days of the week. If you did something nine months after your initial illness (say starting up a consulting company to try to get part-time work because your old job went away), it will show up as a disqualifying event on the denial letter without reference to circumstance.

If it sounds like I’m bitter about the whole experience, I am. When I’ve had any other dealings with insurance companies, I’ve always felt like their goal was to make sure I was taken care of… that the process of evaluating a claim was designed to be as hassle free as possible, so I would continue to be a loyal customer even after the claim. They seem to understand that you’ve likely already gone through a trauma of some sort or other—why make the situation worse?

But in dealing with Guardian, from the very first envelope I received, to the tone of the denial letter sent at the end of the process, everything was set up to make me feel I was committing fraud, and it was their goal to prove it. I’ll admit that I lost my temper the last time I talked with them on the phone (that was the emotional incident that led to my whole face going numb in just a few seconds), but I’ve haven’t felt so poorly treated by any company since I nearly had to send lawyers to a financial services company back in 1997 to get them to execute a trade I ordered six weeks earlier. Nothing Guardian said or did was criminal as far as I know, though I did talk to someone at the Washington State Insurance Commissioner’s Office to verify. But why would I ever do business again with a company that makes me feel like a criminal from day one of my relationship with them? As much as I am disappointed in the outcome of the appeal, I am glad that the whole process is over, and that I will never have to deal with them again.

So now we start 2013. I’m still actively recovering, rebuilding endurance and trying to figure out what my long-term limits are going forward. Maybe we’ll be able to find some medication that helps to alleviate the numbness without any side-effects. Perhaps that will lead to some sort of return to normalcy. Or maybe this is the new normal. Or maybe I just need a few more months of healing, and by 2014, GBS will be a distant memory.

Time will tell.

2 Comments on “Eleven Months with Guillain-Barre Syndrome

  1. Joe, this was a very interesting read for me, not only to keep apprised of your condition and experience, but because it also hits close to home in many ways. This month marks 3 years for me of living with a serious bilateral repetitive strain wrist injury. For the first year and a half, I was very limited in what I could do, and it seemed that everything I enjoyed and that lifted my spirit was beyond me: writing, cooking, crafting, even holding my infant granddaughter for any length of time. My employer was understanding (this was a work-related injury after all) but the productivity and quality of my work suffered, which affected my feelings of self-worth. I would come home from work and not be able to touch the keyboard for anything beyond bill paying and the like. I experienced social isolation because emailing and texting friends hurt. We rarely communicate by phone these days, and besides, it hurt to hold a phone. (Yes, I finally invested in speaker phones.) It even hurt to read a book (I can’t hold one for long) and you know how much reading means to me. Yet, I never took a single day of health leave from work for this (in retrospect, a mistake because a period of rest at the beginning might have helped; or maybe not, but now I won’t know). My insurance experience was supportive at first, providing referrals to specialists and physiotherapy, but as my symptoms lingered on there was a shift to the negative, such as trying to find an underlying condition to account for my injury (sorry folks, there isn’t one). My insurance claim is not yet resolved.

    After lots of different therapies, an incredible level of support from my partner and significant expenditure to purchase services to make up for what I couldn’t do (e.g., house cleaning, yard work), I began to see improvement and to integrate some of the activity that I love back into my life. This was so important to my overall well-being. I began blogging because it’s writing in small pieces, and I was able to cook again, taking care and with help when I need it. I told very few people about my blog at first, afraid it would somehow be used against me.

    I am much better than I was in the early stages, but I continue to struggle both at work and in my personal time. I experience flare ups, sometimes because I’ve simply overdone it at work or home, and sometimes for no apparent reason. For instance, even though I’m on vacation right now I’ve been in pain all week. Anyone who lives with chronic pain is familiar with the drag it causes on your life. I also experience the flare-up response to high emotion that you described. I live in a state of constant modification and adaptation to my injury. I do feel fortunate to have regained the level of function that I have, don’t get me wrong, and am determined to live fully in spite of what now appears to be a permanent condition.

    I am happy to see you’ve been continuing to improve, Joe, and so understand the ups and downs of your ongoing recovery. I hope you don’t mind me sharing my story here, which I’ve done in support. I do understand that my condition is not as serious as GBS, but we share a certain similarity of experience. I wish you ongoing improvement, and hope you soon achieve a state where GBS is only a memory.

  2. Mar, thank you so much for your response. At times, the problems caused by not knowing how long these things will go on often exceeds the pain / discomfort of having the condition in the first place. I pushed way too hard to recover back in the earliest stages, and if I could do it all over again (not that I ever would), I’d take 6 months off and do nothing except heal. I take solace from the fact that I am able to do a little more each month, and that life is slowly resuming some sort of normalcy. While it’s disturbing that you are in pain on you vacation, hopefully you can get some rest and recharge your entire system.

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