CHRONIC TONIC posts on Thursdays at 9 EST, it is a place to share stories, advice, and information and to connect with others with chronic health conditions and those who care for them. Our diarists will report on research, alternative treatments, clinical trials, and health insurance issues through personal stories. You are invited to share in comments (and note if you'd like to be a future diarist). In addition to our weekly diaries, please join us for ongoing conversations at the Kossacks Networking site.
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Please remember to visit the Thursday Night Health Care Series, which posts Thursday evenings at the same time.
Today's diary by: All of Us
Good evening, everybody.
Tonight is an introductions-and-updates kind of diary. I requested that our regulars write a few sentences about who they are and where there are in their particular battles, and I’ve pasted the responses below. If you didn’t get the email, please post a comment with a few sentences about yourself! If you’d like to be added to the email list, please let me know in the comments.
BFSkinner: I am BFSkinner, I have SLE (Lupus) which has led to: Seizure Disorder, Arthritis, Osteoporosis, a heart attack, OAB, and multiple cognitive issues. I am currently in a holding pattern, waiting to see what the next steps will be--probably a brain biopsy, to determine exactly what is going on neurologically.
MsGrin: Had recent cardiac imaging with much better outcome than a year ago... difference? Last year, I was off meds, so we now know what kind of shape my heart is in without them - it wasn't pretty (yikes - I've been excellent with compliance, and now I have even greater incentive to keep it up!). Am grateful to know that with meds my heart is in the range of normalcy since without 'em am within spitting range of something they call 'failure.' Dysautonomia has made it difficult to be able to assess what has been caused by what - knowing that Lyme has been the likely trigger of what's caused both dips and rises in blood pressure helps me feel more confident that we can continue to get things under control. Have been having days were I feel kinda ok - not like I want to dance a jig or anything, but I'm having fewer spells of confusion and disorientation - and that's been saving a lot of wear and tear on me.
Alexandra Lynch: Alexandra Lynch is a writer and cook, who believes that life is beautiful and fascinating. I live with fibromyalgia, an underactive thyroid, Raynaud's syndrome, obsessive ADD, some Aspberger's traits, a touch of generalized anxiety disorder, some Sjogren's trait, IBS, sacroiliac problems and lumbar scoliosis, a dislocated pubic symphysis, torn ankle ligaments, and a dislocated tarsometatarsal joint. I am pagan and strongly progressive. I manage my issues with hot water, stretching, frequent rest breaks, meditation and distraction,and my friends Tramadol, Lyrica, Ambien, Valium, and Synthroid.
I spend my time doing everything from making evilly good food, brewing wine, sewing and crafting in historical ways, researching medieval bastardry law and writing essays on pagan theology, and loving where I will and how I will. I live with my husband Bear (who has his own set of health issues) and make my contributions as a housewife and by editing other people's books. And maybe I'll finish and sell one of my own soon!
UnaSpenser: UnaSpenser here. I live with Persistent Lyme Disease which triggered Dysautonomia and Chronic Inflammatory Demylineating Polyneuropathy. Symptoms are too numerous to list. They range from cognitive dysfunction to physical pain, hypersensitivity to sound and light, tremors, seizures and so much more. Because Lyme Disease is such a politicized topic, I went to the doctor only to land in the epicenter of our health care crisis. I don't want to be at that epicenter. I don't want to be debilitatingly sick and having to testify in front of my state Congressmen as the only hope of getting care. Recently, the little care I was getting - weekly antibiotic injections - was retroactively denied by the insurance company. So, now I'm not getting treatment and I'm further in debt. And I'm mourning (that may not be the right word, actually) the recent death of my father. I'm damn cranky and wallowing in self-pity these days. The one sign of hope at the moment, is that the only neurologist in MA who will see a Lyme patient turned out to be present when I testified at the State House. After nine months of trying to get an appointment, her office finally returned my doctor's call. I will be seeing her in December. With any luck, she will know how to submit the orders for the treatment I need. As it costs $15k-$20k per month and is needed, possibly, for years, I can never have a chance of recovery unless we can work the insurance system, which currently routinely denies any treatment beyond a few weeks antibiotics for any patient who is diagnosed with Lyme. Chronic Tonic has become the once place I can "go" each week and "meetup" with people who not only understand what it is to be continuously not well, but also the systemic and political challenges that I face.
Triv33: Hi, triv33 here. I've been in on this little group since BFSkinner first suggested it and I haven't missed a Thursday night yet. I suffer from intractable migraine, fibromyalgia, CFS, IBS and lichen planus. I've probably left something off that list, but I'll blame fibro fog and leave it at that. I wrote my one and only diary here at Daily Kos back in January under the Chronic Tonic UID and it tells a little bit about my struggle to get treatment for chronic pain.
Spedwybabs: Hi- Spedwybabs here. I'm here mostly for the community. I first found this when a friend wrote a diary and I love the support and care that flows in this series so I stuck around. To me, groups like this are what the whole DK world is about. Pools of sanity in an insane world. {{{}}} to everyone.
Stranded Wind: Neal Rauhauser, known as Stranded Wind on DailyKos, picked up some sort of tick borne illness in either 2006 or 2007. Running out of water hiking in the Sandias in 2007, the resulting dehydration tipped him from fighting off the infection into a downward spiral. The worst of it was chronicled under the name One Brave Kossack. He recently began treatment for his tick borne infection with Dr. Charles Crist of Columbia, Missouri. Dr. Crist's recommendations regarding the chronic fatigue like symptoms worked and Neal returned to work full time the last week of September, 2009.
Boatsie: I write and research about mental health issues here at CT and run a blog Brainzaps, (www.brainzaps.wordpress.com. in my dogged pursuit of alternative non-pharmaceutical treatments for diagnosis of major depressive disorder. I am a dedicated supporter of those whose interactions with the world are often compromised or limited by living with a chronic condition . One of the initial Chronic Tonic group, I have been strengthened by the support and friends I have found here on Chronic Tonic and view many members of this group as my most ardent supporters in life. CT has supported me through some really rough times and I always know that help is just an email away.
Within the Kos community, I am a contributor to the ongoing series DK GreenRoots, EcoJustice, and the Feeding America blogathons. I also recently creaed BrokenRoots, a series on homelessness in America, which I run with Miep. In the 'other' world, I am a free lance writer and editor, (I actually again finally have some real work!), a member of the WiserEarth advisory council, and a tutor for Experience Corps.
Like most of us here, the ongoing battle with a chronic illness has its share of good days and bad days. I am fortunate through this group to have finally found supportive people who are constantly there to cheer me on, to help me face the tough times with hope, and to propel me forward outside of my own pain to help others deal and search for ways to more comfortably live with, within and beyond their individual conditions. Checking in with the folks on CT is a regular part of my life. More than anything, I dream that this group will eventually attract a following of experts in mental and physical conditions who can advocate for us, join in our discussions and that our virutal community can move beyond the confines of cyberspace to forge connections and support in real space. And there already are examples of that happening here.
Chauconne: My name is Heather and I was born with a genetic condition called Turner's Syndrome. What it means is that whereas most women have two x chromosomes, I have only one. This has caused a whole bunch of effects and disabilities on my body, including: I have only a tiny uterus and trace/non-working ovaries. I have been losing my hearing over the last twenty years or so, and began using hearing aids about twelve years ago or so, graduating to digital sophisticated aids 3 years ago, because the other set weren't doing the job, because my hearing had declined so much. I lost most of the bone that was supposed to hold my teeth in, so in November of 2005 I had all my teeth removed and now use full dentures.
I have arthritis in my hips, knees, ankles and fingers, and osteoporosis in my spine. My husband, Dan, was a US Vietnam vet who survived torture. He was a diabetic, likely as a result of being sprayed with Agent Orange, and had Congestive Heart Failure because he had Rheumatic Fever as a baby. dan was disabled by a really bad American doctor in September of 2001, and spent 2 years in and out of the hospital, and the last 2 years of his life on dialysis. He had a fatal heart attack on June 12th, 2005. For those last four years, I was his fulltime caregiver. I am now in college, and on the many year journey to get my Master's in Divinity.
andsarahtoo: I'm a mother of two boys, ages 4 and 6, and at the moment I'm a stay at home mom and a full time undergraduate student. After two years of mystery illness, I was diagnosed with lupus (SLE) in September of 2008. Though I was recently told that I'm in remission, I've still having some trouble with fatigue, pain and opportunistic infections. Still I'm fifty times better than I was a year ago at this time, and I'm ever so grateful. Chronic Tonic has been a godsend for me, allowing me a space in which to celebrate progress and whine about setbacks with a group of people who understand and really care. Thanks, everybody.
Katie71: My name is Kate and I live in Dallas. I have psoriasis and psoriatic arthritis (I wrote the diary last week). Even though I’ve been looking for a job for the past year, only lately have I felt like I’m actually capable of going back to work, I was a data analyst in a previous life. I also do stained glass and fused glass for fun, definitely not profit. I’m a dog person and I’ve been married for 13 years to the most terrific guy. I was super involved in a lot of things before I got sick and now I stick a lot closer to home.
If you didn’t get a chance to watch Keith Olbermann’s Special Comment on health care reform yesterday, you missed a fine hour of Keith in action. UnaSpenser had taken some time off from diaries, but she was moved to write this diary http://bit.ly/... , which made the rec list and touched a lot of people. Una suggested we might use Keith’s show as a jumping-off point for discussion, and I asked permission to reference her diary.
I know a lot of people are taking the health care reform debate seriously—people on both sides of the argument. But I think it means something particularly special to people like us—people who need treatment and medication in order to live or to live well. Una writes in her diary about the treatments she needs that have been retroactively denied, and the impact that has on her and on her family. I am fortunate to have health insurance through my ex, but that won’t last forever and I have to get my lupus under control before it ends. I recently had a rather public fight with an ex-boyfriend about health care, on my Facebook page--he’s a regular old death-panel-you-lier—and it was hard to keep myself from tears. I wanted to shout at him—you don’t understand, I could die—but I didn’t want to be accused of drama.
Tonight, let’s get it out there. Bring on the drama and let’s talk about it.
Upcoming Diarists:
October 15: Diarist needed
October 22: Were Bear
October 29: Diarist needed
November 5: Diarist needed
Please indicate in comments your interest in being a diarist