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." 

F-word of the Day: Friendship

Song of the Day: Family Affair by Mary J. Blige

One of the hardest parts of living with chronic conditions is the fact that it forces you to reassess who your real friends are. As someone who spent much of her young-adulthood surrounded by "friends," this was a particularly bitter pill to swallow. As my condition worsened, most of these friends drew further and further away from me. Some automatically assumed that I was either faking or exaggerating because I "didn't seem sick." Others accused me of being flaky when I would have to cancel appointments at the last minute. Eventually, everyone just stopped calling. At the time, the stress of having to pretend to be okay or deal with their assumptions and lies sent me on a downward spiral of pain and depression. There are also those people whom I deliberately cut out of my life because their friendships were toxic and taking a toll on my health. In still other cases, I cut people out simply because I didn't have the time or energy to spend on maintaining their friendships.

Today, I only keep a very small number of friends around me. I really liked the picture (below) when I saw it, but the quote isn't entirely accurate. My best friends are people who have been there for me unconditionally, but they are also the ones that have known me the longest. 

My female best friend, let's call her Linda, is someone I have known since I was four years old. She knows everything about me, which comes in handy on the days when my cognitive symptoms are really bad and I can barely remember anything. Our friendship is one that defies description. We can go for months without talking, and I will still know that I can pick up the phone and call her, and it will be like we never stopped talking. There will be no recriminations of "How could you not call me on my birthday?" or "Why don't you ever call me?" She knows that I would if I could, and if I don't, it's because I can't. And that understanding is the greatest gift she could give me.

My male best friend, let's call him Joe, is someone I have known since I was twelve years old. He is the reason why I am a big believer in platonic friendships and the need to have one BFF that is of the opposite sex. He has been my date to work functions, we've traveled together (a lot), and he will come and take me out for ice cream in the middle of the night when I can't sleep. He was the last person to hug me before I walked down the aisle with my dad. We've been to weddings, funerals, and lots of parties together. He is always on my side, but he also gives me tough love when I need it.

While I have other friends that I love and am close to, these are the two people who are my go-to support people. Every person who struggles with a chronic illness should have at least one such person in his or her life. I consider myself doubly blessed because I have two such people. 

The one thing I'd like to point out to anyone who is struggling with a chronic condition is that you can't always blame those who don't stick around. This is a bumpy road that we're on and you can't blame those who don't want to come along for the ride. The only thing you can do is buckle up and hold on tight to anyone who does join you.

If someone in your life is struggling with a chronic condition, try not to judge. Check out articles like the one below to gain a better understanding of what's helpful and what's not.

Health Central - Top 10 Things Not to Say to A Fibromite

F-word of the Day: Family

Song of the Day: Ode to My Family By The Cranberries

I haven't been out of my room in days. Along with everything else, I have a lot of allergies. I get particularly severe reactions to pollen, grass, sun, and trees. So you can imagine how much I like spring. A particularly bad bout with allergies resulted in allergic asthma and a very bad flare - the first I've had in several months. Being sick and stuck at home was starting to get me down today when my dad brought me fruit and ginger ale - the same remedies he has always brought me during times of sickness ever since I was a child. A few hours later, my mom brought me oranges and soup.

So even thought I haven't stopped coughing and wheezing, and I have had a fever for nearly a week, I smile and begin to feel better. And then my lovely husband comes home with ice cream and I feel a sense of joy that I haven't felt in weeks.

And that's why the F-word of the day is "family."

F-word of the Day: Fertility

Song of the Day: Unpretty by TLC

I always think if only. If only I had known these things when I was younger. If only we hadn't wasted so much time before trying. If only I hadn't stepped foot in that particular therapy clinic. If only my doctors could have gotten me better faster. If only I had met my husband a little earlier. But these things aren't possible; I shouldn't torture myself by thinking of them; there are reasons why we are where we are. There is nothing that we can do. These things are out of our control. I comfort myself with the thought that God knows what He is doing. Still, I walk around with part of me missing most of the time and I push it away. I carry the battle scars of my fight against infertility beneath the surface of myself with me everywhere, only allowing thoughts of babies and prenatal anything to bother me on those days when yet another friend announces yet another pregnancy. I hate the fact that I can't be completely happy for them; this selfish witch isn't the person I used to be.

My fight against infertility included 3 miscarriages; 486 visits to the reproductive endocrinologist; 448 blood tests; 322 transvaginal sonograms; $3,368.44 spent on ovulation prediction kits; $4,127.36 spent on home pregnancy tests; and a whopping $82,400 spent on visits to the doctor, exams, and procedures. This list does not include all of the time and money I spent on holistic treatments and natural supplements, and it fails to address the countless hours I spent poring over books and websites. Nor does it include the emotional toll the process took on my husband and me. Each failed cycle ended in debilitating depression. 

I can vividly recall the last time we found out that we had had yet another unsuccessful cycle. It was a rainy spring morning; after returning home from the clinic, I lay in bed listening to the raindrops hit the window and air conditioner. Each clap of thunder seemed to punctuate the end of our fight to become parents. I was exhausted and bereft of the energy and motivation to keep fighting.

At first, I woke up each morning and the first thought that entered my mind was that no matter how hard I tried to fill things up with light and sun and laughter, there was still this tiny, tight knot of sadness within me, and no matter how much I hid it or rubbed away at it, I couldn’t seem to make it disappear. 

I won't lie. It still hurts at times, but making the conscious decision to stop trying and to focus solely on regaining my health helped. A LOT. It also helped when I stopped trying to pretend it didn't bother me. That entailed withdrawing from some of my well-intentioned but tactless friends who automatically assumed that my childless state made me the ideal candidate for babysitting and baby-shower-throwing. I've thrown 17 baby showers and I have 23 godchildren and commit to remembering milestones and spending time with them. I have the sweetest nieces and nephews who call me everyday (mainly about homework) and who provide me with all of the cuddles and kisses an aunt can ask for. On top of that, I love and remember every single one of the sweet and lovely students I have been fortunate enough to work with.

Now, I'm frequently amazed at how laid-back I have become about being childless. And I like it. Even though we aren't parents, we can still dream about the future and we can still be happy. I don't need to have anyone by my side in order to be fulfilled; and if I did have to choose someone, it would be my husband (and my dog). When he (my husband) senses that I am depressed or stressed, he holds my hand and hugs me and I think, "Yes, this is right; this is the way it should be,"  and I can see that life is good - F-words be damned.

At the same time, I understand that others may not feel the same way. My heart aches for everyone waiting breathlessly for their good news. I did an email blast for Fertility Friends earlier today. If you haven't already, please take a minute to donate. Everyone who wants to try to conceive should be able to do so without having to worry about finances. With the help of a good friend, we will be matching every dollar donated.

Return to Work

 

Song of the Day: Thank You by Dido

I accepted a regular full-time job today. Yes, I was a sell-out and decided that I wanted to give a boring 9-to-5 job. As most of you know, I've always worked at least 5 jobs since I was a freshman in high school. While this was difficult physically, I enjoy every minute of working. I was blessed in that I was able to attain all of my dream jobs... all at once. It's an amazingly lucky problem to have, so I made the brilliant decision to accept all of them. Fortunately, I have amazing bosses who have worked with me to accommodate my schedule and who constantly go above and beyond to support and mentor me.

At the same time, I've been feeling ill for a long time and I think that I would do better if I focused on one job. I struggled for months to decide which job I would continue, but I decided that I want to start over from the beginning on a new career path.

That doesn't mean that I'm stopping all of my activities. I'll still be at the Autism Speaks dinner, so I want to see you there! We're just $1,200 short of our fundraising goal, so please come out and support us. To sweeten the deal, I've partnered with Autism Speaks to offer the following incentives to the top five donors:

Your choice of:

- Single, couple or family portraits in pencil, charcoal, oil, or watercolor
- A photography or music video shoot at one of the locations from my Martha Stewart Weddings shoot
- Dinner and press access for one person to see the Yankees play in the Bronx

Keep your fingers crossed that this will be the beginning of a new and productive life for your favorite funnygirl. :-)

Expectations

Song of the Day: Under The Bridge by Red Hot Chili Peppers

When Hurricane Sandy hit New York last month, I was stuck at home for more than a week. I don't think I can do the severity of the storm justice with my writing, so I'll just say that the stress of having to deal with the aftermath led to a particularly bad flare that still hasn't disappeared completely.

For me, flares tend to include endless migraines, chills (read: frozen hands and feet), backache, alternating pain and numbness in my arms and legs, insomnia, depression, cramps, indigestion, ringing in the ears, restless legs, and crippling fatigue. I still can't understand how this condition works; it makes you crawl out of bed because you're dead tired and sore all over but unable to sleep. Like a hurricane, a flare can hit you suddenly and cripple you if you aren't prepared for it.

While I'm still learning how to cope with and overcome flares, I can say that I have gotten better at handling them now. I take nice long baths, watch something funny or listen to relaxing music, order in food, and curl up in bed. I don't push myself to go to work or do housework because I have done it in the past and know better than to push myself now. If I can't sleep, my lovely husband holds my hand and we just talk all night.

And in this way, I take control of my condition. And now, I think I'll pause here to change the soundtrack.

New Song of the Day: Lazy Song by Bruno Mars

There, that's better. This post was turning out to be darker than I had intended it to be. My point is that having chronic conditions suck - and that's putting it politely. But you have to keep trying to get better. It's crucial that you stay well-informed on your condition(s) so that you can avoid triggers and stay healthy. The Internet is filled with useful resources and information about support groups, doctors, and patient advocates. Most importantly, remember to smile. Laughter does wonders for your mental and physical health.