Today is the first day of 2011 and I've resolved to finally start a blog and KEEP BLOGGING. That's the key... I've started a few other blogs but quit after a couple of weeks as life got in the way, and I would really like to continue for an entire year (at least). In order to do that, I've decided to blog about something that, to varying degrees, I think about every day... my several chronic illnesses, and how sometimes it's really damn difficult to fit into a world full of "normal" people (the Normals) with these conditions.
So what are these chronic conditions?
The two that have given me the most grief over the years have been interstitial cystitis (IC) and fibromyalgia syndrome (FMS). I also suffer from chronic myofasical pain, migraines, asthma/allergies, and dermatographism. I think everyone reading this probably knows what migraines, asthma, and allergies are, so I'll skip the description for those, but I'll give you a little info on the others here:
Interstitial cystitis (IC) is a chronic bladder disease that causes severe, debilitating pelvic pain and extremely frequent and urgent needs to urinate. IC patients often have to urinate 60 or more times per day, and the pain of IC has been likened to cancer pain. In fact, some studies have found that IC patients have a lower quality of life than those on dialysis for kidney failure, and many ICers do have to take disability, as they cannot work. IC IS NOT A BLADDER INFECTION. Antibiotics do not help, and drinking cranberry juice only makes IC patients worse, not better. No definite cause for IC has been found, although recently there have been some interesting developments, and there is no cure... just a bunch of treatments designed to reduce the severity of the symptoms. Many, if not all, of us have to modify our diets to drastically reduce or eliminate acidic foods, synthetic ingredients like artificial sweeteners and MSG, caffeine, and other ingredients. Some IC patients have milder cases and find the diet modification is all they need, but many IC patients need to take a number of pills per day and have to learn to catheterize themselves in order to place medication directly into their bladders (including me). Many of us require long term pain management (including me). Some, like me, end up having neurostimulators implanted in their spines to control the constant peeing, and others who have end-stage IC end up having their bladders removed!
Fibromyalgia (FMS) is a complex chronic pain disorder that is characterized by widespread pain that appears to be emanating from the muscles and connective tissues of the body. However, that's usually not all... many fibro patients experience intense fatigue, headaches, sleep disturbances, difficulty with concentration and focus ("fibro fog"), and other flu-like symptoms (sore throats, random fevers, and things like that). There are many other symptoms that can be associated with FMS as well. FMS can easily be confused with chronic fatigue syndrome, and they may in fact be related. In fact, FMS has also been shown to be associated with IC, as many patients develop both conditions like I did!
Dermatographism literally means the ability to write on skin. In other words, if the skin of a person with dermatographism is firmly stroked with an object such as the end of a pen, a tongue depressor, or even a finger, raised patches of itchy red hives will arise where the object has touched the skin. In my case, during a flare-up of this condition, sometimes the presence of clothing is enough to cause me to develop hives.
I know I've some of these conditions since childhood. For example, I remember having migraines in grade school, and what I now know to be my first IC "flare" occurred when I was just 8 years old. I remember bouts of hives and asthma/allergy symptoms even before those. I think my allergies and asthma were diagnosed pretty early - when I was around 6 years old. However, I was not officially diagnosed with anything else until I was in my 20s. The dermatographism diagnosis was first, at the age of about 24, and then I was diagnosed with IC at 29. Fibromyalgia was diagnosed a few months later.
These illnesses are tough for people to understand, because they are "invisible." That means that on the outside, I'm sure I look like a Normal most of the time, and perhaps I can even appear to be one of those elusive Super Normals. After all, I managed to get my bachelor's degree in nuclear engineering from MIT in 1996, and then my Ph.D. in biomedical physics from the UCLA School of Medicine in 2001. My Ph.D. dissertation research was designed to investigate how the brain responds to radiation at a cellular and molecular level, because if those biological pathways can be understood, then perhaps one day we can prevent all of the nasty side effects that we see in patients receiving radiation treatments for brain tumors, like cognitive dysfunction (memory loss, behavioral changes), fatigue, nausea, and other nasty things... and if we can do THAT, then perhaps radiation therapy can be improved so that more tumors can be eliminated. I loved - I mean, REALLY LOVED, that work, and if I may say so, I was really damn good at being a laboratory scientist. I won a number of national and international awards for my work, and it seemed like I was poised to become a really great scientist.
I got a postdoctoral position in a very prestigious lab in October of 2001. I am not going to say where, because it was a disastrous experience, and the principal investigator (my boss) was a complete asshole. Seriously, he was so bad that I fantasize that someday, his constant yelling and berating will drive a postdoc to cut his brake lines, or worse. Despite it, I stuck it out for 3 years.... that is, until the chronic illnesses that had been hiding on the fringe reared their ugly heads and made it impossible.
After that, I took a year off to get my health in order. Once I was at a manageable level of pain and other symptoms, I realized that there was no way I could stay home and let my husband support me or go on disability. I was bored. I was lonely. I missed science. I wanted to work.
So, I found a new postdoc job in another state, and we moved, hoping that I could pick up my career pieces and continue on the path to becoming a professor at an academic institution. Moving was very difficult - if you are reading this, you probably either have a chronic illness or know someone who does, and you know that finding doctors who are willing to continue treatment (or even treat at all) can be very difficult. It was especially difficult for me, because I had been going to an incredible urologist who was one of the top IC specialists in the world, and I was loathe to give her up. However, even though it took months, and I ended up in the ER in severe withdrawal because no doctor would continue the long-term narcotic pain medication I'd been on for a year, I eventually found care with another of the top 5 IC experts in the world, and I thought everything would be okay.
It wasn't. The postdoctoral program I'd signed up with was not what I was expecting. I had no freedom to explore my own ideas, even though it was advertised that this was the point of the program. I had gone in expecting to be guided in writing my own grant to develop my own career, but that didn't happen. Instead, I was a slave to the principal investigator's whims, and I was frustrated. I'm sure that frustration and stress contributed to the worsening of my IC and fibromyalgia symptoms that began to occur, but I also think the disease just began to progress anyway. Regardless, I was miserable, both intellectually and physically. Doing presentations of my work, which is a big part of science, became a nightmare, because ten minutes in, I'd have to pee badly and I'd be in excruciating pain five minutes after that. In late 2006, I was invited to present my work once more at the Annual Meeting of the Radiation Research Society, and I ended up putting in a Foley catheter at my hotel before my talk so that I could get through the presentation without running to a bathroom.
That was the last straw. I went to my urologist, Dr. Robert Evans. He did a urodynamics study on me (a very unpleasant test) and discovered that my bladder function had declined and was, to say the least, very abnormal. Dr. Evans told me that he thought the InterStim, a neurostimulator designed to reduce frequency and urgency of urination, might help that aspect of my IC. He made it clear that I would likely still have pain, but at least I would not be in the bathroom as often. I went for it, and had surgery to have the neurostimulator leads placed. During the time I took off for recovery from the surgery, I did a lot of thinking, and realized that it was going to be very difficult to become a scientist at this time in my life... the 100 hours or more a week required are tough for Normals, and almost impossible for someone with multiple chronic illnesses.
After a bunch of soul searching, I decided to become a medical writer - I've always liked to write, and have always been good at it, and with my science background, I felt I'd be uniquely qualified. Through the grapevine, I heard my current employer was looking for a writer, and I interviewed and got the job, all within three months of my surgery.
I'm happy to say that job is going really well, and so is my Interstim. It sure keeps me out of the bathroom more - I've gone from urinating 35 or more times a day to going about 10, which is a huge difference. I have a lot of time now - so maybe I can blog! LOL I'm still dealing with other symptoms though, so I take medication daily. And of course, the FMS is still around, so I take meds for that and my asthma as well. Only time will tell....
