F-word of the Day: Fibro Fog

Song of the Day: Lightning Crashes by Live

I have been taking on a lot of new projects at work during the past few months. I've also slowly been transitioning out of the "honeymoon" phase at work; I see the cons as well as the pros more clearly now. I don't want to talk too much about my job or the people I work with. Let's just say that with more responsibility comes more stress. It's a natural part of having a career; the problem is that my body doesn't react naturally to such changes.

My fibro fog has been getting worse. I have been trying to stay on top of things by keeping my meds in one of those "one a day" organizers. The problem is that a lot of the time, I can't remember what day it is or where I have put the organizer. 

I also purchased the 2014 Action Day weekly planner. I love love love it so far. It has sections for weekly tasks, projects and goals. Unfortunately, I constantly forget where I have put it so I tie it to my chair when I am at work and try to remember to tie it to my handbag when I go home.

Fibro fog really freaked me out when I couldn't remember how to get to my sister's house the other day. I have driven there every weekend for years, so it was frustrating, to say the least, when I couldn't find my way there.

My neurologist (who is also a psychologist) had me take some memory tests, but the results didn't indicate anything other than the ADD and memory retrieval issues that are "compatible with FMS/CFS." He discussed my results with my rheumatologist and they put me back on Lyrica to see if that will help. I know that Lyrica is supposed to make people sleepy, but it seems to be making my insomnia worse, so we'll see what the doctor says when I go back for my next visit. 

F-word of the Day: Functional

Song of the Day: All Star by Smash Mouth

Some people have asked me why I am so secretive about my real identity. The main reason is that I haven't told many people about my conditions. In particular, I am trying to keep it quiet at my workplace. Please don't judge me or take this the wrong way. I am not ashamed of the fact that I have medical conditions that include fibromyalgia and chronic fatigue. I have my reasons; I don't want to share all of them, but there are a few that may help you to understand where I am coming from.

First and foremost, I don't want fibromyalgia or CFIDS or any of my other conditions to affect people's perceptions of me at work. I have always been a bit of an overachiever and my career is no exception. I work hard at my job and I do it well. It isn't easy though. 

I work Monday through Friday, and my company hasn't yet embraced options like flextime or telecommuting. My job is also very detail-oriented and can be stressful; by the time I get home on most nights, I am unable to wash or dry my own hair, let alone cook dinner or do the dishes. I often plan to relax or do something fun on the weekends, but it's rare for me to do anything other than rest and watch TV. I am that tired. 

Working in Human Resources, I know that I have the right to request accommodations. I choose not to request them yet, but just knowing that I have options helps me relax and get through each day. It is also hard for me to bring up the subject to my boss, who is absolutely wonderful, but also a big skeptic of people who claim to have FMS or CFIDS (I know this because I have heard him talk about it). He is a good, but ignorant (in this respect) person and I just don't feel comfortable bringing it up to him just yet.

Another big factor is that I have changed doctors a few months ago. As I wrote in a previous post, my new doctor has been incredibly thorough. I am getting a lot of tests done and he has referred me to other excellent doctors for my overlapping conditions and he communicates with them regularly about my status. Once they finalize a treatment plan for me, I will see if/how that will affect my work, and then I will discuss it with my boss. I just want to have all of my ducks in order first. 

As someone who works in Human Resources, trust me. It's always uncomfortable to have to discuss your health with your employer, but it's a lot more helpful when you are armed with documentation to support your claim and a proactive plan that details what reasonable accommodations you will require. Keep in mind that your requests should be reasonable and try to think of a few different options for your boss to choose from. If you have questions or need more information, try visiting some of the sites below or leave me a message and I will see if I can answer your questions.

Resources

Job Accommodation Network - Fibromyalgia 

Job Accommodation Network - CFS

F-word of the Day: Found

Song of the Day: How to Save A Life by The Fray

Something that every person who has struggled with an invisible illness knows is that it's incredibly hard to find a good doctor. Most of the doctors that I encountered along the way were either ignorant or skeptical about my conditions. It frustrated me to no end when I would describe my complete inability to dress myself, shower, or even get out of bed only to be told that I was being lazy or that I needed more exercise. One of my primary care physicians actually refused to give me a referral to a rheumatologist or neurologist because no specialist will be able to figure out what's wrong since you have so many random symptoms. Other doctors attributed my pain and peripheral neuropathy to the herniated discs in my neck and lower back. They assured me that the discs could heal themselves, prescribing Celebrex and physical therapy. And most of you know how that went.

Eventually, I gave up trying to find a physician who would take me seriously or not make things worse. I wasted years by stupidly accepting the theory that I had a "weak constitution" and that it wasn't anything more.

Everything changed this past November when, armed with a comprehensive employer-sponsored medical insurance plan, I sought out my current doctor. As soon as I had access to my insurer's site, I started to research doctors who treated weird conditions like mine. Not wanting to waste any more time, I decided to go straight to the top. I had heard from several knowledgeable sources in the healthcare industry that the best doctors in New York were at the Hospital for Special Surgery. Browsing through the hospital's website, I found a doctor with impressive credentials and who specializes in treating patients with my conditions. I can't really explain it, but when I called the next day and secured an appointment, I was filled with a new and strong sense of hope. 

I was reminded of that feeling four weeks later at my first appointment with my new doctor. He spent nearly three hours with me during that first visit. He asked me countless detailed questions and really listened when I described my symptoms. His follow-up questions just confirmed that he got me. He didn't just tell me to exercise; he gave me very specific instructions and taught me a few simple exercises. In fact, he showed me each exercise multiple times to make sure that I would remember them because he understood my memory issues. He gave me a very low-dose prescription but focused on more natural ways to deal with my symptoms (i.e. using a soft cervical pillow and a travel pillow to help me sleep comfortably). 

Since then, I have seen this doctor a number of times. He has continued to be thorough and attentive. He always hands me copies of my notes at the end of each visit and he mails me copies of all my test results. But what I have found to be most important is the fact that he takes me seriously and he will keep trying to help me get better. 

So, to those of you who are also struggling to find a good doctor, hang in there. They are rare, but they do exist. Check Internet reviews and make like Morpheus from The Matrix and keep trying to find "The One."