This is the time of year when we all talk about making our resolutions for the new year. Since spoonies like us cannot resolve to "be healthy" (wouldn't that be nice!), I've come up with a list of resolutions that are applicable for those of us with chronic illness and chronic pain:
Do you have any resolutions for 2014? If so, let us know in the comment section! Happy New Year to all of you!
- Be kind to myself: Yes, I didn't get my to-do list finished today. Maybe I didn't even look at it. But that's OK. Let whatever you accomplish in any given day be enough.
- Be more organized: Go into doctor's appointments with articles and questions at the ready. Keep track of any insurance changes in 2014. Keep all of my doctor's notes, tests, copies of prescription, etc. filed and organized instead of in a pile.
- Fret less: Bad things happen; things change. Adapting without stressing is difficult, but stress and worry will not solve any problems. In fact, they will usually compound health issues. Takes deep breaths, go for a walk, meditate, talk it out, etc. Try not to stew.
- Interact more: Talk more, whether online or in person, with others in the same health situations. Find out how they tackle problems, deal with health issues, etc. In sum, get support from those like you!
Holidays are tough for those of us with chronic illnesses and pain. Typically, hours of travel, cooking, eating, mingling, and pretending that you are fine are expected. Holidays are, in short, a recipe for a pain explosion. I can usually make it through Christmas day OK, but I am suffering (i.e. stumbling from my bed to my couch is the extent of my movement) for the week following. This year, I am going to try to follow my own advice for a low-pain holiday:
Happy holidays to all of you!
- Know your limits! We've all heard this before, usually in the context of drinking alcohol, but it applies here as well. If you know that doing something will dislocate a few ribs, gracefully bow out of that activity. If someone wants to make a nasty remark at Christmas, they are the grinch here, not you.
- Remember allergies/intolerances! Everything on the table probably looks delicious, but if you are like me and have become allergic/intolerant to many ingredients, remember to ask what is in the dishes. I try to bring a few of my own allergy-free (and easy) dishes along to share.
- Take breaks! Have a quiet spot picked out (if you can) where you can retreat for a few minutes to gather yourself. Even a bathroom will work. A few minutes of meditation can do wonders.
- Have a partner in crime! My husband is mine. We have a secret word or look that means that I need a break or I need to leave. He can make the announcement when I'm not feeling well.
- Relax! It is difficult, but try to stay as stress-free as possible. Let those well-meaning comments and suggestions about your health bounce off you. Remember, the people that say these things believe they are being helpful. It's Christmas, so give them a pass.
I've realized that in the past 2 years, I've withstood a ridiculous amount of medical procedures, many of which I wouldn't wish on my worst enemy (chest tube, anyone?). I've also battled with insurance companies, disability, non-believing physicians, and dubious friends, family, and co-workers. Some of these skirmishes are ongoing, some probably will always be there. But even through the frustration and the daily pain, I try to keep moving forward. I have been called a "tough cookie" many times, and I believe that living each day with chronic pain and illness has developed the resilience I now have. It makes sense that spoonies like us have to be resilient; it becomes a trait necessary to survive with chronic pain and illness. Resilience is the only way we can function and live anything close to a "normal" life. It is how we can bounce back after a hospitalization, clean the house during a flare, educate physicians, and care for others. We are spoonies, are we are resilient!
I am going to get a little personal here. I wasn't diagnosed with EDS hypermobility type until I was pushing 30. However, signs were apparent throughout my childhood. Not just small sign either, but glaring, huge red flags. However, no one ever put the pieces together. Add to this story a few more details: my family's favorite line while I was growing up was "suck it up"; sports were revered in my school and by my family; my dad is an ex-football player and coach and really wanted me to be a boy. I'm sure you can guess where this all leads--I was a major tomboy who played just about every sport and ignored every injury. I somehow always managed my numerous sports-related injuries (As a side note, I also became so used to the sports trainer's office at my high school that I was allowed to tape up other athletes). These problems were all was all considered due to my "clumsiness" or "double-jointed-ness" or just plain bad luck. Then, in my senior year in high school when spring board diving, I inexplicably dislocated my patella during a routine warm-up dive before a meet. Still, no one could figure out the underlying problem. And my family, coaches, etc. just kept pushing. I finished that season of diving, and the spring season of track and field.
I'm not a big believer in the "blame the parents for everything" theories in psychology. However, I am sure that if I hadn't been told to "suck it up" so much as a child, and listened to such advice, my joints would be better today. I probably wouldn't be dislocating at the rate I am now. I surely wouldn't have the insane amounts of scar tissue and other "floaters" that I do in my joints. I'm obviously not blaming my parents for not knowing about EDS. What am I hoping to do is encourage those of you diagnosed with EDS (and know there is a 50/50 chance that each of your children will inherit the gene for EDS) will consider the implications of the disorder. Please, if you suspect you child has EDS, do not push him/her if s/he is in pain. Whatever the sport is, your child's health is more important. Remember that for EDS patients, the damage caused now is long-lasting.
Hello and happy belated Thanksgiving! I have not been online all that much recently, as I've been alternatively spending time with family and attempting to recover and heal myself for the next visit. I'm still learning how to pace myself properly during the holidays, so it has been a lot of early nights and later mornings for me. Which is OK--I feel like the holiday season, especially this year with Thanksgiving and Hanukkah overlapping, and and Christmas so close--is a marathon. Your family will want you there for the finish, so remember to take care of yourself!
Validation. It's a word that I've used more and more since being unofficially, then officially, diagnosed with Ehlers-Danlos Sydrome, Fibromyalgia, and POTS (and a plethora of secondary illnesses that go hand-in-hand with both). It seems that even with that piece of paper from a doctor's office with a diagnosis in black and white, getting the type of validation needed from family, friends, other doctors, etc., becomes a Herculean task.
And why should I (and you) care about being validated? Those of us with chronic illnesses need the understanding of others (the so-called "Normals") around us to be properly physically and emotionally cared for and treated. EDSers especially--and others with rarer types of disorders--need the validation that their disorder is real, that their pain is real, and that others believe their disabilities. Otherwise, we are left with "it's all in your head" syndrome.
Thus, validation is important because, without it, no one can truly address our physical and emotional needs. We absolutely need the understanding of physicians in order to get to the root of physical symptoms and to flesh out treatment plans. However, we also need the validation of friends, family, and community to help and support us emotionally. The validation of those close to us helps to get past the frustration of when other Normals find it comforting(?) and/or helpful(?) to say things like, "no pain, no gain!" or "if you'd just get out of the house more you'd feel much better" or "have you tried [fill in the blank] vitamin?". Even when we are coping with illness well, and have come to terms with EDS and the emotions involved, one comment or look can send us reeling back to when we were first sick and dealing all the initial skepticism.
Finding validation from all sources is a difficult and never-ending road. It is, of course, crucial that EDSers find the validation they need from the important sources--mainly the physicians who are in charge of your treatment plan. Having validation from close family and good friends is important; however, you must remind yourself that not everyone is willing to listen and believe. You may never find validation from certain individuals. And that is OK. Remember that the way they respond to you is indicative of something wrong with them--not something wrong with you. And remember that the entire EDS community believes and supports you!
This is the time of year when we all gather around and say (or at least think about) for whom and what we give thanks. This year, for my combined family (my immediate family and my husband's), the Thanksgiving holiday will be a difficult one. Since May, we have lost my husband's great-aunt, my Gram, and his Grandma. We've experienced a number of setbacks with my illness, as well new diagnoses for my father and sister. In all, it has been a really rough year for me--probably the most trying one of my life so far. However, I am incredibly grateful and thankful for my wonderful husband (who I will call "K" on here), who has stood by me through everything. K and I have known each other for year; so long in fact, he actually remembers me before EDS started to have a negative effect on my life. I cannot imagine how difficult it is for him to have to constantly adjust to the new facets of EDS. But he does so, and we have gotten through some pretty terrible times in order to have some fantastic ones together. So this year, I am thankful for K, my match in life. We both realize that, even though our life together has not turned out anywhere close to what we expected, the fact that were together, and working on our love together, is what matters. EDS or not, this is what counts.
It is the phrase that all of us with chronic illnesses want to shout, scream, and cry. "Why me?" "Why did this happen to me?" More than once I have been guilty of yelling it at the stars, as if they would rearrange to give me a good answer. Unfortunately, I still don't have one. But I have decided that having hours, or sometimes a day or two, of being in the "why me" mode is OK. Being diagnosed with a chronic illness, especially one that is progressive, is a huge change for anyone. I went from being a marathon runner to a slow walker (and some days a non-walker), and from being "top of the class" intelligent to a person with massive brain fog, memory issues, and other cognitive problems. So, yes, the "why me" days are inevitable. They will happen, and when then do, relish in them briefly.
I say briefly, because the problem with the "why me" mindset is that it tends to linger and we begin to wallow in it. The longer we feel sorry for ourselves, the harder it is to break that thought cycle. I now put a time limit on my wallowing. If I feel like absolute crap one day, well, then I have that day to curse and moan at the world. However, I need to start looking on the bright side of things by that evening or the next morning by the very latest. (There are some exceptions to this rule--like the time I had a chest tube for three days. I cursed the world the entire time and I would do the same again.) I feel like this outlook keeps me sane and optimistic, regardless of what I'm up against.
I've mentioned previously that I used to power walk through life. I considered myself a city walker, zipping from here to there, quietly muttering at tourists under my breath as I swiftly scurried around them. Now, my walk has no zip. I more so gimp around my neighborhood, and watch as people three times my age easily leave me in their dust. I don't mind the slowness of my gait so much as strangers' reactions to it. More than once, I've been told (usually by older men) to "get out of the way," "quit goofing around" and "stop playing around with your gadgets." I might add here, in none of these cases did I have a Bluetooth or a cellphone on me. Once, I ended up entering the same store as one of the men. I (nicely) told him that I am not "goofing around," but that I walk slowly due to pain and disability. He turned a shade a light tomato, but I'm not sure if he believed me. In all, these situations leave me angry and frustrated. I never know what to do. I feel like ignoring the offender leaves them off the hook too easily and allows them to think that their behavior is OK, but I don't want to have to confront and try to educate every rude person. What is your method of handing these types of situations? Leave your ideas and suggestions in the comment section!
I spend hours on the phone each week fighting with people in order to coordinate and pay for my care. By "people" I mean the poor souls who have the answer the customer line at my insurance company, and my doctors' offices, and the place that takes my blood, and the hospital, and the testing facility...the list goes on. And by "fighting", I mean that I'm too nice, so I really spend hours on the phone each week politely explaining my case to try to make people care about my plight and then do their jobs.
Sometimes my problem is resolved with a phone call. However, usually it drags on and on--multiple long calls are needed, sometimes letters need to be drafted and sent, I even have made personal visits to billing offices to clear up issues (I'm sure they loved that). I noticed that the reason my problems take months to be solved is that they get passed from office to office. No one wants to deal with a problem, especially when I might just give up and pay them. This summer, I had a few x-rays done of my neck by order of one of my physicians. I got the x-rays at the same hospitals where that physician practices. Both the hospitals and the physician were covered by my insurance; however, my insurance refused payment because my "preventative schedule" did not cover the x-rays. I discovered (after calls to my insurance) that the x-rays should have been billed at diagnostic, not preventative. Somewhere along the way, the billing code was incorrectly changed. After approximately 3 dozen calls to the various parties, I still don't know how the mistake was made or who made it, but it was mysteriously fixed and my insurance paid.
I think billing and insurance issues happens to those with chronic illnesses on a regular basis. Mainly because we require more care, but I also sometimes wonder if a handful of others try to take advantage of us. I believe there is always that chance when an ill or disadvantaged individual is involved. My advice to you is to always double check you EOBs and bills: do they match? Also, actually read your EOBs and check the codes at the bottom. Is your insurance covering all that it should be covering? If there is an odd code, don't hesitate to call your insurance to ask about it. Also, find out if your doctor can re-write a prescription/order so that it can be covered. If you are having a problem with your doctor's office, speak to the billing department, and don't be afraid to ask for the office manager.