When A Doc Gets It

Of course it's been nearly 2 months since my last entry...what else is new?!

In my defense, my computer was virus-stricken during that 2 month period. It just returned to me, thanks to my Ninja-Warrior Brother-in-Law who also happens to be a PC repairman. Here's some unsolicited advice (this is my blog, after all): Back up your files, especially pictures and videos of your loved ones. I managed to recover most of what I lost, but it was no easy feat.

When I last wrote, I was not-so-patiently waiting for that darn cast to come off. I'm happy to report that it was removed as scheduled and that I've been hobbling on two feet, assisted by my trusty walking boot and forearm crutch/es for some time now. Even better, at my 2 month follow up, my ankle appeared to be solidly fused. That was great news, as solid union wasn't really expected until about 4 months. I'm all for speedy healing.

I had a milestone birthday this year (complete with a fabulous surprise party), but I'm not too broken up about it. I don't feel any older than I did last year, and despite being a mama and hobbling around like an 85 year old great-grandma, I still have difficulty seeing myself as a real adult. (College students just seem younger each year—what gives? And high schoolers—don't even get me started!) So getting older didn't bother me too much. What did bother me that day was the news Cam brought home from the hospital about my orthopedic surgeon—that he was leaving the practice and moving out of state.

I spent the rest of the day with a lump in the back of my throat. Ortho-Doc has been my only specialist up until this year. I started seeing him the year after he joined the practice here, right after he finished his fellowship. In the beginning, he was very eager to fix me, to do for my right shoulder what no one had been able to do for the left. And while he always respected my wishes when it came to treatment, to surgery, it wasn't until my first (or maybe second) right shoulder surgery failed that he began to truly understand how I ended up with a left shoulder fusion at the ripe old age of 19. Since then, he's let me make all the decisions. When I want to go the surgical route, we come up with a procedure. When I want to try injections or pain management or physical therapy, he facilitates that. In a most un-surgeonly way, he actually listens and involves me in my own treatment. The thought of having to find someone else to deal with me (especially when many surgeons don't want to touch an EDSer with a 10 foot pole) was most unsettling, especially since I'm still in need of more work on my shoulder.

Turns out all is not yet lost. When I actually went in to see Ortho-Doc, he confirmed that he is leaving the practice, but he'll only be about 2 hours away. While I've been quite spoiled over the past few years by being able to roll out of bed ½ hour before my ortho appointments, I'll take the drive if it means not having to deal with someone new! Thankfully my new insurance covers out-of-state specialists. I'm angry and eternally grateful all at once...grateful that I have doctors who are actually willing to [try to] figure me out, treat my pain, and treat me with dignity. STILL, I am angry that this disorder and the thought of losing one of the members of my “team” reduces me to an anxious mess (on my birthday, no less) and that the anxiety isn't unwarranted!

Every doctor should be like Ortho-Doc. Every doctor should “get” it, should treat patients well, involve them in their own care. I'm finding that more and more doctors are at least minimally informed about Ehlers-Danlos Syndrome and are eager to learn. I've had fewer “Oh, so you're a circus freak,” remarks recently. I think we're getting there. Still, I'm going to hold on to the good ones I have!

Be well!

*Xan

Rainy Day Rant

Someday I'd like to believe I won't have to apologize for the length of time between posts. (Absence makes the heart grow fonder?) I am sorry, though. My dear Puggle (AKA my sweet daughter) had a few rough months, but is feeling better. Nope, I haven't updated her blog either. She does have a CarePage, so if you want to stay slightly more up-to-date on her medical stuff, send me an e-mail. Now let's get to it.

I wrote an entire post about my ankle fusion, which went off without a hitch on April 28^th. I'd like to think it was informative, so I'll probably post it sometime in the near future. (I'm guessing some of you have bad ankles, too and might like to know a little more about the whole ordeal. Short synopsis: it wasn't so bad. I think I'm in more pain from having been on crutches for 19 days than from the surgery. I may have a different opinion once I start walking on the screwed-together ankle, I suppose.)

But for now, I have an entirely different agenda. If you'd like a totally feel-good post, you might want to read elsewhere. I may have mentioned earlier that I'm not always a most cheerful person. Although I've brightened up considerably since my emo-ish adolescent days, I don't quite fit in with the other PTO moms. And if I were to pick an alternate title for this post, I'd borrow the words of a bendy friend and go for: “Dear EDS, Fuck You.”

I'm not sure if it's the 19 days of hobbling or the 3 days of rain or the 2 sickly children, but I've had enough. I've had enough of the damn cast, the hospital bed, the feeling of impotence as I watch my family live their lives from whatever seat I'm consigned to at the time. I miss my bedroom, located on the unattainable 2^nd floor of our house. I miss the time when traveling from the living room to the kitchen didn't require prior planning. I miss feeling like a contributing member of anything.

I went in yesterday and had my stitches removed and a new (hopefully final) cast put on my ankle. If all goes as planned, in two weeks, I'll be out of this cast and back in a walking boot (although there will likely come instructions not to do much walking.) This will give me the freedom to climb stairs, carry the Puggle, and do a whole lot more without difficulty (drive, shower, etc.)

Why, then, can't I just look forward to the nicely-fused, cast-free future (i.e. May 31^st @ 9 am, not that anyone's keeping track)?

Because EDS just hasn't given me a break—EVER. Every time I thought, “This is it; I'm done,” out popped some new symptom to be dealt with. Dislocations or pain or dysautonomia or migraines or seizures or reflux or medication intolerance. It's been a long time since I've felt like ME...sometimes I don't even know how that's supposed to feel anymore.

Then again...just when I've resigned myself to a certain level of disability, hope does seem to shine through. Last year, I thought I was wheelchair-headed for sure, but now I don't know. I managed to walk pretty well for a while this year. My new knee brace is promising. My new ankle is promising. I finally found a medication that stopped the headaches. And while I may not be able to eat bagels, my stomach and I are on slightly better terms than we were last year.

So here's the truth—I'm scared. I'm scared of what the future holds. I'm afraid of failure. I'm afraid I will never be able to stop crying.

That may not be very encouraging for those of you who are newly diagnosed or wanted something uplifting, but that's the truth. I want a life that is more than a collection of diagnoses and a laundry list of (failed) surgeries. I want a life in spite of it. I have 4 children who need me. When I was first told I had EDS, at age 19, it meant little to me. It explained my crazy joints and rationalized a shoulder fusion. I had no idea how great the impact would be. I don't think my doctors knew. Ugh. (And if they could see me now!!)

A rheumatologist I saw had this to say about EDS:

“We used to call EDS 'Benign' because it doesn't destroy the joints in the same way as say, Rheumatoid Arthritis, does without treatment. We no longer call it benign because while it may not destroy your joints, it destroys your life.”

True.

But while I'm glad ecstatic for the understanding, and while I am afraid of what the future holds, I refuse to let EDS destroy my life.

And while I don't knock any of the following, I just wish there was treatment besides writing, crying and camaraderie. And joint fusion.

-Xan

P.S. I will have better things to write about in the near future. So thanks for reading and I'd by honored if you continued to do so!

Staying Well When Life Goes Wrong

People who know me in real life would probably laugh at the thought of me writing a feel-good blog post. I'm not a negative person, per se. I'm just, well...intense. Passionate.  A hell raiser. I'd like to think of myself as injustice intolerant.

Recently, it seems many people I know just haven't had a break--whether their troubles are their own health, that of a loved one, financial difficulties, grief and loss issues or some combination. Beyond that, there have been a number of devastating events reported on the local, national and international level. Here in New England, it's bitterly cold, which only seems to magnify the pain.

But while I could probably give a million reasons NOT to be happy, I'd actually like to change focus--not to the million reasons to be happy, but to the importance of taking care of yourself when nothing seems to go right.

I know, I know--you've heard it before. It sounds hokey. And the fact of the matter is, I'm no expert on the subject of self-care, self-soothing, etc. You could Google either of those terms and probably get lots more ideas than I will provide. But here's a reminder to do it! Do something nice for YOU. Do something that makes you feel better and be ok with that.

Want ideas from a twisted sister? Fine. These things help me:

·         curling up on the couch with my Snuggie and watching something completely mindless

·         taking a bath

·         playing around with photos on Picnik

·         drinking coffee, sometimes even flavored

·         looking through/organizing old photos

·         sleeping

·         reading the Onion, finding articles with stumbleupon

·         finding new blogs, feeds to read

·         buying new socks--especially patterned!

Again, find something for YOU. Find something that makes you feel better and schedule it into your day. Make yourself a priority, even if only for 15 minutes. And if you're able to get physical activity, I'd highly recommend it. I was a competitive swimmer for many years and being in the pool improved my mood like nothing else. And even after that, before my body really couldn’t hack it, I felt better after getting out of the house and running. Or walking. Or hobbling.

Also, for those of you with chronic pain or fatigue, I cannot express how important it is to maintain human contact. As hard as it can be, especially on a bad day, to pick up the phone and call a friend or a relative, it can make such a difference. I love spending time with my best friend because it helps me forget about everything else in life for a while and just feel normal. Even if you don't feel like calling anyone you know, make a point to go out in the world. Smile at a stranger. We're all in this mess together.

When people don't seem to understand us or our children or our situation, it hurts. Sometimes it's easier to avoid talking about the difficult topics than it is to confront the people in our lives who mean well but just don't get it. (This sort of gets into that whole, "But you don't look sick..." issue, which I’m also not the authority on.) It takes time. I was diagnosed with EDS 11 years ago and it's still a work in progress. I'd like to believe that people have the best intentions. I know that my own independence (and stubborness, and shame...) is often what forces people to keep their distance. I also know that when people are so upset by a situation (e.g. the death of a child or the illness of a once-strong adult), they react in ways that seem counterintuitive: by shying away rather than embracing, by remaining silent instead of comforting. Humans are odd, imperfect creatures.

So again...if you're struggling right now for any reason, please know that you're not alone. Take care of yourself, allow yourself to be cared for and if the burden is too much ASK FOR HELP. It's ok. It doesn’t make you weak to need someone. It makes you human.

I don’t know why I felt so compelled to write this instead of sleeping, but I really hope that someone reads it at the right time.

Hang in there and keep raising hell!! You’re all in my thoughts.

Cyber-hugs from the non-hugger,

Xan

After re-reading, I thought I should also note:

If you [or someone you know] are really at your end and feeling as though you may hurt yourself or someone else, get help NOW. A mental health emergency should be treated like any medical emergency. Call 911, emergency services or get to an ER or mental health emergency service location. Need to talk to someone first? In the US, the National Suicide Prevention Lifeline is 1-800-273-TALK (8255). I'd like to think that life's worth living, despite all the hard stuff, but sometimes it takes a little help to get there.

Still Twisted

Sometime in November, my laptop decided it hated me. As in, I shut it off one night and it decided it just didn't want to work AT ALL the next morning. I just got it back from Dell with no indication as to what was wrong in the first place, but it's working again, so here I am.

(I wish I could have slept through 8 weeks!)

Actually, the "Holiday Season" was fairly pleasant! There's nothing like Christmas with 4 little kids. I had more than a fair share of painful, rotten days in November and December, but they were improved by cuddling on the couch and watching Christmas movies with my kiddos. On the better days, we did all the things we set out to do this year. Cam and Old Boy decorated the house with Christmas lights, we went to a number of events, made cookies, decorate gingerbread houses, got a real tree...Good stuff. This was the first year without Atiyyah that things didn't feel soul-crushing, the first year in this house and hopefully the first of many more good things! Now that Christmas and New Years are over, we're headed into New England's deep mid-winter of frozen gloom, but I'm glad to have the laptop back and to re-connect with my "friends in the box."

I received a Snuggie and slippers for Christmas, so my couch days are now a bit more comfortable. The Snuggie was sort of a gag gift from Cam, but after I let her borrow it one night, she went out and bought one for herself. I would highly recommend it for anyone who's spending as much time on the couch as I am these days. To be fair, there's not a lot to it...it really is just a "blanket with sleeves". And blanket is a bit of an over-exaggeration. It's a single layer of fleece with sleeves and a pocket or two. If I didn't need to spend so much time being horizontal, I could certainly sew one. "I bet I could improve it too!"--bonus points if you can guess my favorite movie from that line, without Google-- But alas, EDS has got me down these days, and I'm thankful for my pre-fab Snuggie.

Other than the couch and the Snuggie...thinking about a few surgeries. Fun, right?! But, seriously, I need an ankle fusion, as my left ankle is a dislocating disaster. I went through a big made-up surgery for it last year, but it showed early signs of failure that have progressed to constant pain despite non-operative treatment. Cam is starting classes with the hope of changing careers and the Puggle has some invasive procedures/surgery ahead, so we're thinking late August 2011, which will give us some time to prepare, get through the Puggle's struggles and for me to be off crutches by next winter.

But for now, I'm more concerned with the day-to-day than with anything 7 months away--major surgery or not. The Poodle is now a walking maniac, the Puggle is becoming more playful, Monster and Old Boy are enjoying snow days and hot chocolate and wintery things while I seriously consider moving to a more temperate climate.

I hope you're all comfortable in your bodies in your life. And to quote the first line of my favorite Christmas letter this year, "I hope this finds you well and if not, that 2011 is a better year for you!"

Disability!

There have been about a million things that I've wanted to blog about in the past few weeks, but by the time everyone is taken care of, fed, changed, medicated, and in bed, my fingers are just too tired.

Big news for today: my Social Security Disability was approved! First time. No re-application, no appeal, no court, no fighting. What a relief!!! I should get the official letter with the detailed information within the next few days, which is good, because I sort of spaced out during the phone call after I heard “Approved.”

I have not felt too confident about the SSDI application these past few months. Almost everyone I've talked to told me horror stories about years of appeals, court, invasion of privacy, impartial medical examinations. I was only being treated consistently by one specialist, and while he's an awesome doctor, he wasn't immediately willing to send back the letter of support requested by my attorney. All through the process, I got the feeling that my attorney wished I had a mental health condition rather than a physical disability. Even when I communicated with a disability specialist, I felt as though I'd done everything wrong. Every time I carried my child into my house out of pure necessity, no matter how much pain it caused, I worried about a disability spy watching from the bushes, ready to deny my claim.

Thank goodness all of that is over.

Now life goes on. On one hand, it hurts that the government has deemed me unable to work any job by nature of my disability. I know that this isn't a death sentence—this is what I wanted: the ability to take care of myself. So that's the other side of this, the positive. I did the best I could for a long time. This is what I need now.

Besides that big news, I also went back to PT to try to decrease the frequency of my migraines. My PT and I spoke a bit about cranio-cervical instability, as one of the orders from my neurologist was for cervical traction. (In the words of my PT, “If I did that to you, I'd probably take your head right off.") There's a new spinal surgeon starting at the orthopedic group I go to; my PT thought she might be worth seeing to talk about cervical flexion/extension fluoroscopy and treatment. Never a dull moment.

Unprepared

So yesterday I implored the general public to be generally nicer...and today it happened. So you'd think I'd be prepared, right?

In the words of my 3 year old, “No, nope, never.”

I was actually outside the preschool of said-3 year old when it happened. It was 20 minutes before closing and I had been driving for an hour, having left Old Boy's outpatient OT appointment right at rush hour.

Puggles and the Poodle were sleeping in the van.

Monster's preschool is in a large building in the back of an old mill complex. Since there is no view of the parking lot from his classroom and picking him up is often an unnecessarily long process fraught with odd rituals and delays, I am uncomfortable leaving the two little ones alone in the car.

Since I can't walk well and neither of them can walk at all, the only choice the three of us were left with was to use the double stroller. Luckily, our double stroller is light (enough). However, I was completely exhausted, so the thought of lifting anything more than a banana felt overwhelming. And I knew that getting the stroller out was only the first of several undesirable steps including probably waking two children, rushing in to pick up my anxious toddler (who hates being picked up when “the sun is sleeping”), then repeating the whole process to get back into the van and home.

I must have looked as tired and miserable as I felt at the moment that I opened the rear door of my mini van and pulled out the stroller because another mom a few cars over asked, “Do you need some help?”

I was so taken aback by the question that I didn't quite know what to say. I'm fairly sure I stared at her blankly for a moment.

 

--Am I dreaming? Is someone actually offering help?--

Of course, I graciously accepted stammered something unintelligible before saying, “No, I'm ok.”

She gave me a look of complete non-belief.

“I just have to pick up my son,” I continued, as though the sling, brace, limp, and obvious exhaustion were commonplace... “My two little ones are sleeping and I have to bring them in with me. It just takes a little longer, that's all.” Oh lies, lies, lies.

“Oh, ok,” she said, probably half-relieved and entirely confused. “It's just that you look so--” Disabled? Exhausted? Forlorn? All three? “But as long as you're alright.”

“I'm alright,” I parroted. “Thank you, though.”

She drove off and I slowly got the little ones into the stroller, managing to keep the Poodle sleeping and Puggles hooked up to her feed. I hobbled in to get Monster, who ran happily to meet me, which temporarily eased the exhaustion. I gladly chatted with him and piled everyone back in the car in what I felt was a reasonable amount of time.

Still, I could have accepted this kind stranger's assistance. I could have asked her to stand with the kids for a minute or to run into the preschool for me, or something. For goodness sake, I'm a mom and beyond that, I'm human. If I had seen anyone in the shape I was in tonight, I would have offered to help them--and not just out of obligation, but because I'd genuinely want to do so. Instead, tonight I was just too me—shy and stubborn and independent and leery all rolled into one.

Jeez. No wonder people drop the door on me.

Week in Review, My Thoughts on Public Hobbling

 

This past week has been crazy-busy with appointments of every kind for me and the kids. We also seemed to have wrapped up the week of stomach-yuckiness, until I was stricken yesterday afternoon. I think I made out much better than my poor kids and wife, though. Everything has stayed in, perhaps as a result of the many painkillers, but I feel gross. Thankfully, the big guys had school today and Cam took the Poodle out with her, so Puggles and I just maxed and relaxed. It's funny—Puggles is exclusively tube fed as a result of her genetic disorder and dysmotility. (I will eventually get her blog to be more than a figment of my imagination), but I swear sometimes she wants to eat. Either that or she's teasing me. Today, as I was forcing myself to eat Saltines and sip ginger ale so that I could take my regular meds, she was practically wiggling out of her seat whining at me. Out of common courtesy, I offered her a cracker. She looked at me like I was crazy!

So aside from my current stomach woes, I've actually been getting out of the house recently—to places other than the hospital and pharmacy, no less. It's still a work in progress. Some days I feel fabulous. On Sunday, we had the Poodle's birthday party, and I had so much fun.

We have some pretty awesome friends and family. One of Puggles' little friends, Skye, came over after the party with her parents, and we all enjoyed feeling normal for the evening.

I notice now when I go out in public (right arm in sling, left in brace, limping with a crutch), I'm met with one of two reactions:

1. The Over-Reaction
   People keep their kids away from me and generally treat me like I'm dying. Also, like I'm deaf. A very strange conversation took place behind me at Stop & Shop. It was between two women trying to figure out how to pass me in an aisle and was **VERY** dramatic. I felt like turning around and informing them that I was able to hear them or like whacking them with my crutch as they attempted to rush by. I didn't.
2. Complete Ignorance
   People either have no common courtesy, are completely oblivious to what goes on around them or think that a person with a physical disability would be appalled at any offer of help. This past weekend I went to Old Navy to get a Halloween costume with Old Boy. After shopping for a while and standing in line, he was even more wired than usual; I was even more tired. We walked to the doors with a group of people no more than three feet behind us. Instead of taking a step forward to grab the door for me as I struggled with a large bag, a crutch, a heavy door and a hyperactive child, the group pushed into us and huffed.

For cripes sake. It isn't that difficult. To the over-reactors: If I were in some critical condition, it's unlikely you'd find me at the grocery store or Old Navy. You don't need to whisper near me or avert your eyes. To the second group: have some decency. I'm not suggesting that anyone make a big show out of helping a person with a physical disability if they appear to be doing fine on their own, but if someone seems to be struggling, it doesn't hurt to ask if they need a hand. Furthermore, this doesn't just hold true for a person with a cane, but for any person. (After all, I'm still disabled on days when I'm not wearing the sling and using the crutch.) What's the worst that could happen? You might get snapped at. But chances are, you won't. And as a person with a crutch, I've really appreciated door-holding recently!

So overall, a pretty good week. I actually had two very productive appointments with new providers (for myself.) I have a great deal of anxiety when it comes to seeing new providers, especially since I am prescribed a lot of pain medication and have had some unpleasant experiences along those lines. To my pleasant surprise, both the neurologist and the gastroenterologist took the time to research EDS and were thoughtful and kind. Wow.