As someone who lives with chronic pain, relief often seems a bit like the leprechaun's fabled pot of gold. It's a nice dream but highly unlikely.
Imagine my surprise, then, to find some welcome relief late last week.
The manufacturer of my RA medication has a patient assistance program to help patients with low income and no insurance. I've been enrolled in this program since shortly after my diagnosis last year. This last month I had to reapply.
I've been on pins and needles waiting for news. This program saves us close to three thousand dollars a month. That's more than my fiance and I see in six months.
Friday morning I got the news that I was approved for another year's coverage.
And so, I'm happy. And relieved.
What's your Happy?
Don't think you have one? Look harder. Something will make you smile today.
We want to know!
Share it with the world on your blog and then link up below, tweet it out (hashtag #DOHMonday #WithTheBand) or share it on Facebook. Whatever you want to do, do it. Just find a bit of happy in this Monday!
Chronic illness can be frustrating and often affects mental health as well as physical.
This is how it affects her life.
I cry a lot.
I'm an emotional woman who wears her heart on her sleeve, who lets herself get hurt to easily, who throws caution to the wind over and over in the event that it might bring me to that all-consuming True Love.
I have diseases. And disorders. Fibromyalgia, Hashimoto's Thyroiditis, Hypogonadism, Raynaud's Syndrome, chronic daily migraines, autoimmune gallbladder disease, Depression, Borderline Personality Disorder (there's that whole caution-to-the-wind thing), Sjogren's Syndrome. I'm probably forgetting something.
I take a lot of pills. They don't help much. But the doctors tell me I need them and that I'd be worse off without them, so I dutifully take them every morning, despite what I think. Nine altogether. Plus a handful of vitamins and supplements. Plus hormone implants every six months.
What's my point?
I'm never going to get better.
There is no light at the end of the tunnel for me.
There's no recovery.
I'm 34 now, and my life will be a steady decline from here until the time I die. This year, I had to start walking with a cane sometimes because the vertigo is so bad I'll fall over otherwise. I'm in danger of losing the job I've had for 11 years, and therefore losing my health insurance. My boss has seemingly endless patience, but I know that even she will run out at some point.
I got a fortune cookie last week that said "Your fondest dream will come true this year." What is my fondest dream? To not be sick anymore. To feel normal again. I wish I'd never taken for granted how good I felt in my twenties when I was abusing my body and probably planting the seed for the things that are wrong with me today.
And how do I feel about this? I'm trying to make my peace with it.
But yeah, I cry a lot. Out of pain, out of exhaustion, out of fear. Because I feel abandoned and alone. Because I hurt all over and nothing helps. Not a damn thing. Well, okay, alcohol does, but then I just feel worse later and I can't very well be drunk all the time. I've tried every medication I can spell and those I can't, and they just don't work...not for me, anyway.
I just went back to college and I feel so overwhelmed. I feel like the stupidest person there, because I have to work extra hard to keep up. The Fibromyalgia and Sjogren's wreak havoc on my thinking, making it difficult to remember and to concentrate, the result being that my hours of studying are often forgotten within minutes, or that I can't absorb the words on the page to begin with.
I'm writing this because I read another post on here from a woman who sounded just like me. I was surprised at her optimism, because I am so negative. I'm depressed and pessimistic about the future, and always have been.
I don't know how to change that about myself. Years of therapy have not managed to do so. I think I've gotten worse. I wish I had a switch in my brain I could flip and become optimistic -- it would make dealing with disease so much easier.
Maybe one day that peace will come. Maybe I'll be happy and content despite my ailments. I sure hope so.
Grieving the potential loss of a dream is as real as experiencing the loss of a loved one.
This is her grief:
I'm 33 years old, with multiple chronic illnesses and chronic pain, which play a role in this post, but are stories for another day on Band Back Together.
Night sweats are the story of the day and a new, uncomfortable symptom I've been experiencing. Night sweats are uncomfortable because, well: Ew. It's freezing cold, but my legs are clammy and sweaty, and all of the sudden I can't sleep with pajama pants on anymore.
The sweat is a feverish feeling, the kind that makes me roll over and take my temperature at three in the morning. I never even get the thermometer to a normal body temperature.
In the larger scope of my symptomology, and given the fact that it
1) doesn't physically hurt
2) isn't disfiguring
3) is the worst at night, when I can lay without pants, it wouldn't ordinarily be a huge concern for me.
Except, what do we most often hear that night sweats are a symptom of, ladies?
Here's where you laugh at me because I'm only 33 years old, and that's some paranoia you've got going on there.
Yes, when I did some research, it turns out that hot flashes tend to be experienced in your upper body during menopause, and that there are a million more likely (for me) reasons that night sweats have begun:
New medications (check), the presence of autoimmune conditions (check), thyroid or hormonal issues (check), certain infections (maybe?), issues surrounding The Pre-Diabetes (perhaps), cancers (hope not), just because (sounds like me), and early menopause, which is, of course what I am fixated on, because: NO.
I can't automatically assume that these new symptoms aren't some weird new manifestation of whatever autoimmune ruckus my body has decided to participate in this month. Not when you consider last month's allergic reaction rash to... nothing in particular, or June's random mouth sores, or November's numbed fingers. I can't put anything past the chaos of is own wacky configuration of unexplainable, largely-untreatable, chronic illnesses.
My mother began menopausal symptoms early - her doctor didn't believe it was menopause because she was only 35. It took another ten years before her symptoms became intense and life-changing, but her random symptoms began in her mid-thirties.
Both of my grandmothers, on the other hand, showed no such early menopausal proclivities - one of them had her four babies between the ages of 25-38 and the other started at 23 and didn't finish until she was 46! And why this is the first time I've actually done the math on that is a whole 'nother thing to think about.
Still, it's a concern.
It's a concern because I still want babies - as unrealistic and far-fetched a pipe dream as that may seem to anybody (including me) who sees how I struggle to get through my life right now. I still want kids, some day. And the idea that some day might not happen is pretty freaking devastating.
I had a near-breakdown a while back while discussing children with one of my sisters; just started bawling, because I know there's a very real chance that this may never happen for me, given that I seem to be getting sicker, rather than better. Plus, I don't ... date or have relationships or do anything besides survive, most days. Not having kids is something I may have to learn to accept.
It's very difficult to accept that having a life-long desire for a baby, that having more than enough love for a child, having the longing for a ten-year-old freckle-faced firebrand of my own, is not strong enough to overcome not having the physical health for a baby. The financial stability for said toddler. The energetic wherewithal for the freckle-faced firebrand.
It is a bitter pill, and it's combined with so many other bitter pills that I just... I can't.
It's not that I'm giving up on all of those hopes, not yet.
It's that I feel like that door is being closed for me - by time and health, by money and relationship status, by living at home, by being able to work or drive, by all the other nameless concerns that I have. I don't know what to do about any of it.
In the meantime, everyone I went to school with, or am related to, is pregnant. Or nursing. Or trying to conceive. Or complaining that their one year-old won't crib train, or their 8-year old won't clean her room.
And instead of doing any of those things, I'm battling my own skin, my lungs, my pain, squeaking out a (smaller, sometimes heartbreakingly so) existence as best I can manage.
I want nothing more than to be there with them, to feel only empathy instead of the jealousy-tinged empathy I feel right now. Oh, to have teething to complain about (she says safely from her child-free side of the fence.).
I don't know how to fight this particular battle, or even if it's winnable. It's just there: something on my mind at almost all times.
There should be a word for the specific kind of lonely you feel when you long for a child and can't seem to have one. It's like being homesick, but for a home you've not yet lived in. For me, it's a spiritual version of my fibromyalgia - a psychic sensitivity to touch, an all-over heartache that appears incurable.
Without tooting my own horn too much, I'm an exceptional Auntie - all my godchildren and nieces and nephews would agree, I hope. I'm good at spoiling and sleepovers; I rock at finding the missing sock or remembering who got to sit shotgun last time. I don't bypass any of the necessary time-outs or disciplining, and I've always got the newest book to read or game to play.
I make weekly phone calls, Facebook tags, "what's news" texts to check in with The Littles in my life. But - even though I've helped raise some of them from the day they were born - at night, most nights, they go home to their parents, and I say good-bye.
And when they leave, their parents decide whether or not they can watch TV or have an iPhone when they're ten; whether they should play soccer or ballet or both; what their family's holiday traditions are and when they can visit their auntie. That's okay - that's how it should be. But wanting that for myself? Wanting to be the Mom, not just the Auntie, is... overwhelming right now.
Do you, The Band, have any advice for her? Any tips for coping with this anticipatory loss?
2012 - what a year.
For some of us, it was a year of dreams fulfilled, questions answered and our way, at long last, found.
For some of us, it was a year of loss, sadness and longing for what we once had.
For all of us, it was a year in which we learned, loved, and grew.
What did 2012 mean to you?
December is certainly a time to be retrospective. There's something about the ending of one year, a new one on the horizon, that triggers the need in me to look back and see how things have changed. Or stayed the same.
2011 was a wicked hard year for us so I had high hopes for 2012. Those hopes flew out the window when five days into the new year I was diagnosed with Rheumatoid Arthritis.
However, I'm not one to regret things. Had that not happened, I would not have found The Band. Had I not found this wonderfully safe place, I wouldn't have made some of the best friends I've ever known. Sometimes, there must be pain before there can be change for the better.
March marked a milestone: my boyfriend and I moved into our first official home together. It may be just an apartment and my neighbors may make me want to scream on more occasions than I'd like, but it's OURS. These walls have our photos, our memories. Whether it's dirty or clean, it's my kitchen. You might not think it's much, but it's my home.
We lost my aunt in the spring of this year, and I learned a bit more about my family. People I had always felt apart from took my boyfriend in and made him feel welcome, and me with him. An odd homecoming, I suppose, but it was a much needed change in family dynamics.
This summer I got to watch my boyfriend bond with my son. A fondue party while watching Young Frankenstein. Two of the most important guys in my life smiling and laughing over video games while I held their tickets - there's not much better than that.
I also got to meet a few Bandmates and got to see The Bloggess. Pasta, books, laughter, and lifelong friends.
I started blogging again this year, and found a new audience as I chronicle my life as a spoonie. I've met an amazing support group of fellow RA warriors via Twitter. Just like The Band says, we are none of us alone. Sometimes it's completely awesome how not alone I am. They may be hundreds or thousands of miles away, but there are people out there that understand my pain and can help me get through it.
Friends I thought would always be by my side fell away; new ones have taken their place. I'm far from lonely, but their departure hurts, as it should.
I've spent the fall of 2012 learning about myself. I'm trying to focus more on the postivity in life and all of my blessings in an effort to dispel the negativity that breeds depression. Some days are certainly easier than others, but it's a path I'm happy to walk.
As I suppose it was meant to be, 2012 has been a year of changes. Some good, some painful, most were confusing at first. I have hope that 2013 will also have some changes. And that I will have the strength to face them, the insight to learn from them, and the peace to make with them.
Such a simple word with such a variety of implications, not a one of them simple.
This month, the Band is focusing upon recovery - from anything. Part of getting through the traumas, the addictions, the mental illnesses is to focus on the light at the end of the proverbial tunnel and focus upon new coping mechanisms, new ways of life, and recovery.
So, The Band, how are YOU recovering? What are you recovering from? How are some ways you cope while recovering?
My back is pissed off at me.
It’s easy to forget how interconnected your spine (and the muscles that support it) are to the rest of your very human body. Then you suddenly remember when you make your back angry and it Hulks-out and then sulks in a corner. Suddenly, there are very few activities you can do without at least a twinge of pain.
I’m no stranger to this. Lower back strains seem to run in my family. Something about notoriously tight hamstrings (I’ve never been able to touch my toes; my father can’t either). When I still lived at home with my parents and younger siblings, it was like a rite of passage to make your first trip to the family chiropractor.
I think I strained my back for the first time when I was fifteen or sixteen. I did it again when I was in college and gamely made the short drive back home to see the same chiropractor. I recovered relatively quickly those times, a benefit of youth most likely.
In graduate school, I managed to drive my back into a full Hulking-out once. I can’t remember what triggered it, possibly the non-ergonomic way I was standing and leaning over my lab bench. But it was bad. The health clinic on campus sent me to a sports medicine doctor, who sent me to a physical therapist who unfortunately didn’t know what to do with me. The deep tissue massage he performed on me left me bedridden for two days with severe muscle spasms and hopped up on muscle relaxers and pain-killers.
When I returned to the lab, I hobbled around with an ice-pack strapped to my waist for a few hours a day and popped ibuprofen like it was going out of style. My colleagues all made sympathetic faces at my pathetic self while I grimaced my way through it.
That was my worst strain to date. With rest, specific stretches, and some strengthening exercises, I was back to mostly-normal in about four weeks. I continued doing the stretching and the exercises for about six months, and then gradually they fell out of my daily routine.
That last strain was about six years ago.
This time around the initial strain was minor, but it has lingered on and radiated to the surrounding tissues in a way I haven’t experienced before. It apparently refuses to fully heal. Then again, the roadtrip we took two weeks after the initial strain definitely didn’t help. Sixteen hours in a car over three days was not a brilliant healing strategy.
It’s now been three months, and I’m sick of having to baby my body out of fear of exacerbating my injury. This time around sitting doesn't bother me that much, but prolonged standing or walking triggers muscle spasms. On really bad days, lying down also made it worse. If I am standing for more than 30 minutes, my back starts to ache. It gets progressively worse. Then it radiates down into one of my hips, usually the left one, and I wind up walking with a slight limp. Some days my glutes decide to cramp up, as well.
Let me tell you, there is no good way to self-massage your own ass that doesn't look completely obscene.
At that point I have to lie down, and my lower back muscles scream at me. I can actually feel them spasming: it is not enjoyable. Not as bad as a charlie horse (goddamn I hate those!) but definitely a teeth-gritting experience. I've discovered that deep breathing and relaxation/meditation exercises seem to relieve this issue the most effectively. Visualizing the tense muscles, visualizing them releasing their tension: it sounds hokey but it works. For the spastic back muscles it usually takes three or four repetitions before I can really feel them relaxing.
As a whole this has not been a debilitating injury, but it is a frustrating one. I’ve been in a low level amount of pain for three months. I have to schedule my daily tasks in such a way that I’m not standing for too long all in one stretch. If I do the dishes for ten minutes, I have to sit down and give my back a break. I can’t jump right into another quick chore like sweeping. Grocery shopping usually takes me an hour, and by the end of it I’m usually limping and leaning heavily on the handle of the cart. Tying my shoes is far more annoying than it should be, since placing my ankle on the opposite knee sends a shooting lance through my back. Thankfully my actual job has me sitting at a desk for eight hours a day, and my chair there is quite supportive. Otherwise I don’t know what I would do.
I’m scheduled to see a physical therapist on Tuesday. I’m hoping she can evaluate my specific situation and help me tailor a stretching and activity routine to speed up my recovery. I’m tired of being limited to restricted activities. I’m tired of being grumpy every few days because I’m in pain.
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