It has been surprising how much mail I've received here and on Facebook from readers regarding my open discussion about living with fibromyalgia, from diagnosis to living with it while doing this full-time blog and holding down a full-time job since 2004. I'm glad that others dealing with this found the research and descriptions of the condition to demystify it ("Fibromyalgia: when your brain is not your friend") useful.
Anyway, it's been a difficult couple of weeks, the "miracle" of Cymbalta hasn't exactly worked out. It was doing the trick to reduce the fibromyalgia pain, but a different problem emerged that has been under pretty good control until the flares started coming back with a vengeance after being put almost 100% at bay by the drug. I was told to up the dose from 60 to 90mg. That gave some relief, but not much.
Some of my other "friends" (nearly life-long chronic illnesses) were getting into the mix, and they are clashing and interdependent in causing the misery on the playing field. First up to bat is my PCOS (Polycystic Ovary Syndrome), something I've had since about 13. What is it?
Polycystic ovary syndrome (PCOS) is the most common hormonal disorder among women of reproductive age. The name of the condition comes from the appearance of the ovaries in most, but not all, women with the disorder — enlarged and containing numerous small cysts located along the outer edge of each ovary (polycystic appearance).Well, the condition wasn't exactly a surprise, as my mother had it, but it "corrected" itself when she had me and my brother. Mine was accompanied by severe insulin resistance, also common with PCOS, making it extremely difficult to lose weight for many, I fall into that category. Or, rather, another "friend" was diagnosed officially a few years later -- insulin-dependent diabetes. I was the first in my family diagnosed. Once I was tagged, then the dominoes fell, my mom and dad had it (neither obese), my maternal grandmother, a maternal aunt, and probably more undiagnosed. I got all the crappy endocrinological genes, my brother, thankfully is free of diabetes.
Infrequent or prolonged menstrual periods, excess hair growth, acne and obesity can all occur in women with polycystic ovary syndrome. Menstrual abnormality may signal the condition in adolescence, or PCOS may become apparent later following weight gain or difficulty becoming pregnant. The exact cause of polycystic ovary syndrome is unknown. Women with polycystic ovary syndrome may have trouble becoming pregnant due to infrequent or lack of ovulation. Early diagnosis and treatment of polycystic ovary syndrome can help reduce the risk of long-term complications, such as type 2 diabetes, heart disease and stroke.
My problem is the PCOS was working in concert to make it necessary to take a lot of insulin for it to work in my body. The flip side of the miracle of life-saving insulin is it often comes with weight gain as well. Yes, can't win. Both maladies made it very easy to eat very little and still gain weight (or rather, not lose it after I reached a setpoint). Only recently have I been dropping pounds, mostly after my gall bladder was removed, and before the fibromylagia kicked in. Lately I've been losing because my blood glucose levels were out of control.
Why? Not because I was shoving Snickers in my pie hole (I was reduced to eating a bowl of cereal for breakfast and an apple for lunch and salad and some protein for dinner) the numbers were topping 300 when they should have been 80-100), but because the excruciating pain of fibro (or any chronic pain) shoots your blood glucose numbers into the sky, you dump the sugar from the body that cannot be processed; in essence your body is feeding on itself. In my case this was confirmed when I began the Cymbalta; the pain ebbed, my sugar levels dropped dramatically and I felt like a new person.
Which brings us back to today. The long run of high blood sugars, plus the fact that I have had very insulin-resistant diabetes now for about 25 years, almost ensures some complications would come into play, even with decent control up to now Thankfully, my eyes are fine (no blindness risk), my kidneys are fine (those often fail for some with diabetes). My dance with doom is diabetic neuropathy.
Diabetic neuropathies are a family of nerve disorders caused by diabetes. People with diabetes can, over time, develop nerve damage throughout the body. Some people with nerve damage have no symptoms. Others may have symptoms such as pain, tingling, or numbness—loss of feeling—in the hands, arms, feet, and legs. Nerve problems can occur in every organ system, including the digestive tract, heart, and sex organs.In July I got an inadvertently inkling of how bad the nerve damage was when I visted the neurologist to exclude some other issues and he performed some tests on my feet.
About 60 to 70 percent of people with diabetes have some form of neuropathy. People with diabetes can develop nerve problems at any time, but risk rises with age and longer duration of diabetes. The highest rates of neuropathy are among people who have had diabetes for at least 25 years. Diabetic neuropathies also appear to be more common in people who have problems controlling their blood glucose, also called blood sugar, as well as those with high levels of blood fat and blood pressure and those who are overweight.
- Sensation/pain test: Using a sharp, pointed device he tried it on my foot and I could feel the pressure of the device poking me, but no pain or reflex to make me move my foot away. When he applied the same pressure up near my knee, it felt like a sharp needle. Way sharp as in it hurt and I jerked my leg away.
- Cold sensitivity: He took a metal instrument and said to let him know what it felt like. He put it on the sole of my feet, asked if it was cold. It felt mildly cool, not uncomfortable. He did it on the top of my feet, felt a little cooler, still not remarkable. He put it up on my thigh and it felt like he had just taken it out of the freezer!
- almost all shoes hurt;
- feet are burning at times every day;
- sock seams hurt now;
- numbness, can still sense, but hot/cold perception is almost non-existent;
- feet unnaturally cold all the time (have to wear socks to bed, and thick socks during day).
All this is going on in addition to the fibromyalgia's disabling pain and almost-out-of-nowhere unnatural fatigue, like hitting a wall. We discussed various options to try to get my BGs down and address the pain; it's such a crap shoot, since there's no one magic bullet with this constellation of syndromes and diseases. You'd think that someone who never smoked, did drugs or even drinks more than a couple of times a year could get a break, but alas, no. I guess the half glass full is that if I did, I might be sitting on the operating table waiting for something to be amputated. But I digress...
So the threshold I crossed today with my FNP -- and she brought it up before I did -- was that it was time to apply for a permanent handicapped placard for my car. I didn't want to hear this. It's too soon to let these "friends" drag me to this place; however, she was frank with me about how I can only slow this by taking care of myself. It's just denial. I know I will adapt. I always have when several life curve balls have been tossed my way. I just have to be realistic, there is not an endless energy supply to run my feeble body and do what I have done each day since July 2004.
But as I sit here weary and wondering why I continue to burn the candles at both ends as my doctor tells me today that this pace is also directly contributing to my declining health, I find it amusing that there's a lot of criticism out there (and I do know who you are) that indy bloggers aren't "doing anything" for the movement (i.e. just spouting criticism from the keyboard). There is a blanket assumption out there that we're only bellyaching and not doing anything offline. I can only speak for myself, but what limited free time I do have I've managed to also:
- speak to young people at gay-straight HS alliances to discuss what it is like to come out and to go out in the professional world;
- give time, money, and energy to state organizations for their programs;
- give and help raise funds to defeat anti-gay ballot initiatives;
- use personal funds, vacation and sick time to travel to places to advocate for rights in Red states and to speak on panels about new media, the political landscape to enhance the fight for equality;
- make the decision to take on even more work - to be the first out lesbian columnist for a major newspaper in NC in order to share with my neighbors that gay is OK.
These days I've had such difficulty getting out of bed -- literally -- that you've probably noticed less-frequent postings. The thought of the pain caused by traveling, lugging bags and the whole airline shuffle makes me loathe it now.
And, btw, I'm not special in any way; many other citizen journalists/activists do more than speak their minds about the movement's flaws and strengths. I guess what I'm really serving up is a big STFU with a swirl on top to those intimidated by these "accidental activists." Your privilege and access are not at risk -- we have been told that we don't know how anything works in the halls of power. So stop fretting and soiling your diapers. Life is too short, equality will come with or without you. Peace out.
On the bright side, I have to give an "I'm not worthy" to my fellow baristas who have been churning out great content while I've been down for the count way too much (and many of the Blender diaries have been stellar)! They are just as valuable as activists, as well as the loyal readers who create, shape and participate in online and offline actions to create change and hold bigots and politicians accountable. You're all worthy. We'll all keep fighting on.