It’s happened again -- I have an infection and I can’t get treatment!
The lab culture results came back positive on June 11 -- as in almost a month ago. And these results show that I don’t have just any old everyday infection -- this one is only susceptible to IV or injected antibiotics. Great.
The results were faxed by the lap to my doctor. When I didn’t hear from him 10 days later, I personally faxed the results to the doctor and requested on the cover sheet that he call me. Not response still. So I called the doctor’s office and left a message asking him to call me. Nada. I refax the results with another request to contact me. Nothing. Another call, another message, and then another. Still nothing.
Finally, on June 30, the doctor FINALLY calls me and asks me what’s up. I tell him that I h]ave an infection that will only respond to IV antibiotics. He is annoyed when I cannot tell him -- off the top of my head at 7:30 am -- what specific drugs it will respond to. He orders me to call him back in an hour to read him to drug responsiveness list. Of course when I call, he is unavailable.
When he finally calls me back two hours later and I read the list of drugs to me (he still can’t find any of the THREE copies that had already been faxed to him), he tells me that they are all IV drugs. Excuse me? Didn’t I just tell you that the first time you called??
So then he tells me that I have to go in the hospital. I tell him no, I am not going to do that for the following reasons:
- It is unnecessary because there is a home health care agency on island who can do the IV therapy in my house. Why should I take up a hospital bed (which are always filled) for something that can be done just as well in the comfort of my own home?
- I cannot afford to go in the hospital. (Medicare would bill be a $1000 copay plus 20 percent of the balance due.) It would be cheaper for everyone involved for me to be treated at home.
- The hospital cannot provide me with the daily meds I take. They make me bring my own, then try to take them from me so they can give them to me when they feel like it.
- The hospital does not have a shower bench for their accessible shower. I would have to bring my own bench from home or go without showering for the entire time I am in there. Who go through all that humiliation when I have an accessible shower at my house?
- There is only one accessible bathroom I can use in the hospital. It is located in the x-ray department, two floors below the patient rooms. I have to ask permission to leave the floor to go use it. Again, accessible bathroom at home that I can use whenever I feel like it.
After heaving a deep, resentful sigh, he tells me that I MUST go in the hospital because he doesn’t like the home agency. I tell him I do like them, and trust them, and have references to back me up, and then ask him to write the orders. He tries again to tell me no, but I hold firm. Finally he succumbs -- or so I think -- and tells me to have the home agency contact him for orders. As I thank him, he blurts out, “No, this is wrong” but then sighs, tells me to AGAIN fax him a copy of the oab results and repeats that I should have the home health people call him.
Thinking I am finally going to get some treatment started, three weeks after a diagnosis was made, I call the home health agency. The owner there informs me that it is against Medicare rules for them to contact a doctor asking for orders for someone -- doing so is considered solicitation of business and strictly forbidden. The owner was familiar with my doctor (and agreed with me that he is passive-aggressive and difficult to work with), and confirmed that the doctor KNEW that it was illegal for them to call him on my behalf,
At this point I am angry and frustrated as all get out. In a final attempt to get this doctor to help me, I fax him a fourth copy of the lab results with a cover page that thanks him for his cooperation and asks him to contact me when a referral for home health care was ready to be picked up. What a shock -- I haven’t heard from him since (the fax was sent last Tuesday).
So tomorrow I start the hunt for a new doctor. I have been rejected my doctors on this island before for being too complicated, and I just dread the thought of having to go through another fight just to get a doctor, and then perhaps even more battles to get them to prescribe the home-based IV therapy I need.
I cannot believe that getting a doctor to cure an infection through] the most cost-effective and logical means possible is so frickin’ hard. What is WRONG with this island???
Should anyone wonder why we’re leaving Paradise as soon as we can get out of here, refer them to this blog entry.
My Mom died three years ago tonight. I miss her so much.
On the one hand, it seems like forever since she's been gone. It's getting harder and harder to remember just how good it felt to hug her, or how lovely she smelled when she was getting ready to go out. I can still see her smile, but I'm losing the feeling of joy that I used to get when I saw her flash it. Don't get me wrong -- the memories will never leave me, but their vibrancy is starting to fade slightly. Thank goodness I can still hear her voice now and again just be calling her old cell phone (my Dad now uses it) -- we left her original recordings of her outgoing messages in place just so we could keep that little bit of her near enough to ring up when we needed to hear her voice. Sometimes I find myself calling my Dad and secretly hoping to get his voice mail just so I can hear my Mom one more time. It's been a lifetime since I talked with her.
The hurt from losing her, however, is just as raw as it was the day she died. I often find myself crying because it just hurts too damn much that she's not here with us anymore. They say that time heals all wounds, but I don't think the "they" who coined that phrase had ever dealt with losing their mother. That's a wound that will be open in me for a long, long time.
My parents' song was a WWII classic called, "We'll Meet Again." I can only hope that's the case, and that I will be able to be near her again -- somewhere, sometime. She brought too much to me to be ready to let myself believe that she's gone away from me for good.
I love you, Mom. Thank you for everything, especially the unconditional love. You mean the world to me.
One of the many details related to moving that is weighing heavily on my mind is how in the heck we’re to be able to transport it from the island back to the states since our auto insurance coverage is valid in the USVI only. Most policies down here are like that -- at least for people who are relatively new to the islands -- insurance companies will only extend coverage for you within the territories themselves.
The second you take yourself or your car off island, your insurance policy is nullified and you are hung out to dry unless you secure other coverage (such as those incredibly expensive rental car policies that are offered). That option works fine when it’s just the drive that needs insuring, but doesn’t help at all when it comes to protecting your vehicle.
So I’ve been taxing my brain on how to get coverage for our little Saturn so that it’s protected for every bit of it’s 2500 mile journey back to Michigan. Getting a policy from a mainland insurance provider turned out to be a no-go -- they won’t write coverage until you can provide proof that you already live in the continental US. With some miracles of timing -- namely closing on our new house before we ship the car off island, that might have worked out, but there’s just too many ways that could go wrong and leave us without insurance while our car is taking its long boat ride across the Caribbean Sea and Atlantic Ocean.
I was running into so many obstacles that I had started to wonder f this was a sign from the fates that making this move wasn’t a good idea. You see, every time I make a major life decision, I start receiving little signs from the universe as to whether the decision I made is the right one. I’d been waiting to see what the fates had to say about our decision t move from the USVI back to the great white north, and was starting to get seriously worried that this might be the first sign, and that it fell squarely into the DON’T DO IT/BAD IDEA column.
Just as I was about to declare hopelessness to the HipHubby, an envelope containing renewal info for our auto insurance coverage arrived from our insurance agent. Our agent was pleased to inform us that for the first time since we arrived on St. Croix four years ago, we actually had a choice of policies this year -- we could either continue with out same USVI coverage only or, for a mere $16 more per year, take out a policy that covered us in the territory, on Puerto Rico, and in the US and Canada.
And that, my friends, is just the sign I’ve been waiting for. We’re definitely doing the right thing.
Next on the signs list -- meeting with out realtor to go over what price we can expect to get for the house and how long he estimates it will take for it to sell. This meeting should be happening in the next four or five days. If those numbers end up being what I hope they will be, we are full speed ahead for the move from Paradise back to the Great White North.
If you have a minute, ask the fates to think kindly of us over these next few days. I could use a few more nods from the Universe letting me know that we’re doing the right thing at the right time.
Today was my last appointment -- and best -- appointment to check on how well broken leg has healed. And it was nothing but good news -- a wonderful, and often rare, occurrence for someone who lives in this unreliable body!
The whole experience started out better than ever before -- we actually got called into the exam room only 30 minutes after my scheduled appointment time. For this doctor, that is nothing short of light speed relative to our past experiences -- we’ve never made it out of the waiting room in under an hour, even when we were one of the first appointments of the day. It’s nice to know that the doctor takes his time with every patient, but you’d think they’d be able to schedule to better accommodate that.
Of course, as soon as I was called in I was shuffled into their teeny, tiny x-ray room for films. Usually getting x-rays is torture for me and the tech due to the limitations on how my leg can move and the fact that the films need to be shot from my chair. But the tech at this office is a creative genius. So getting x-rays taken at this office can even be fun. Today was definitely a good time because they were training a new x-ray tech, and I *love* being a teaching tool -- if someone can survive working with me, they can cope with darn near anything. I’m pleased to say that not only did the new guy cope, he nailed both films on his first try. And he was fun. I can’t ask for much more.
The x-rays look fantastic. The bones have continued to knit since my cast came off six weeks ago. You can barely see the original fracture lines, and the new bone looks nice and solid, instead of the fluffy little wisps that appeared on the first x-ray, taken only four weeks after I broke it.
The best part of the appointment, though, was getting the news from my doctor that I had healed extraordinarily well for any patient, and beyond his wildest expectations for a wheelchair user with osteoporosis. The bones have aligned perfectly on one of the two planes, and the alignment is only five percent out of whack on the others -- something he never thought possible without putting my leg in a full cast (which is what should have been done if he treated me by the book and thereby left me incapacitated), let alone without the surgery he was certain I needed. He even admitted that I was doing everything right for my bones with diet and whatnot, and that I shouldn’t change a thing. That, my friends, felt good, and I cannot tell you how glad I am that I refused the surgery.
So as of today, I can officially declare my broken tibia and fibula part of my past. Hallelujah -- I am healed!
One of the aspects of having multiple medical issues that I just can’t seem to come to terms with is that I now have to pay a price for doing normal everyday activities.
After being cooped up for the last two weeks battling an infection, I’d reached my tolerance of staring at the same walls all the time and needed to get out and see something -- anything -- different.
The HipHubby and I had been talking about going down to check out the Boardwalk in downtown Christiansted, so we headed there first. It’s not a bad place to take a stroll and look at the boats, but it’s definitely geared to tourist trade -- unless you’re interested in getting a meal or doing shopping for souvenirs or jewelry, there isn’t much else to do. We did spend quite a bit of time watching the critters that live in a shallow reef adjacent to the boardwalk -- there were some gorgeous, brightly colored crabs and oodles of tropical fish, including a pair of stunning bright blue fish that looked like a saltwater version of carp that were at least three feet long. Although the HH pushed me a great deal of the time (the power-assist aspect of my chair is dead, making it a 70 pound manual chair), I did self-propel quite a bit across the bumpy boards
After our stroll on the Boardwalk, I decided we should hit the “good” KMart and pick up a few things we need to put the house on the market. So across the island we went, where I proceeded to wheel myself around the store while we shopped. Fortunately, there wasn’t much on our list, so we were in and out in under an hour and then on our way home.
This little outing, which only lasted a few hours, has now cost me two days of extra sleep and more pain than I’ve had in the last two months.
It’s frustrating that just being normal comes with such a high price tag attached. It’s embarrassing and annoying to have to figure in large recovery periods for simply taking part if your own life. Not only can one activity -- especially if it’s any outing that involves transfers from my wheelchair in and out of the car -- cost you the better part of a week once you’ve accounted for the extra time you spend sleeping and nursing your body through the increased pain level, it can cost you relationships. Even your loved ones can get tired of having you go comatose for two days just so they could go out to dinner with you, and it takes a very rare and special friend to understand why you fall off the radar screen just because you decided to go to the grocery store.
I don’t mind paying with my body But paying the price with relationships -- that’s just too much to charge for leading a pseudo-normal life.
It’s one thing to make the decision to move, but it’s a whole new thing once a Realtor gets involved. Today our move from Paradise became a whole new thing.
I started the search for a Realtor earlier this week by sending out a few emails to various firms across the island. This was part one of the test because, if you can believe it, email hasn’t really caught on down here yet. We found that out the hard way when we were in the process of moving here four years ago -- and to my great dismay, it seems nothing much has changed since we arrived. What’s annoying is that every Realtor web site includes information about how to contact them by email -- I mean why bother to include that info if you’re never going to respond to email inquiries?
Today, to my great relief, we received a call from an agent at a well-known local firm. Score one point for the man who reads email -- this gives him a leg up on his competition from the get go. We had a long conversation about the property, and he’s agreed to do a competitive market analysis for us, and then come out to look over the property, tell us what remains to be done before we list the house, and talk strategy (e.g. getting max price vs. making a quick sale). He’ll start his research by looking through island records on the property and his old appraisal files. (Did I mention he was an appraiser for 20 plus years? Score another point.) We’ll meet with him in two weeks, after he gets back from a trip off-island.
Even though we’ve talked about moving every day, and have devoted all of our spare time to getting the house (and us) ready to list, it just didn’t seem real until that phone call this afternoon.
We’re really going to move.
Yikes.
My motivation has been lost and I am desperate to get it back. After all, there couldn’t be a worse time to have it bail on me than at the beginning of a 2500 mile move from St. Croix to Michigan.
My motivation was last sighted about a month ago, just prior to my most recent battle with a raging infection and a fever that just won’t let go. It appeared happy and healthy at that time -- at least it didn’t give me any indication that it was about to vanish into thin air. I’m absolutely baffled as to where it went and why it decided to leave me now.
It’s my hope that when it sees how much it’s needed -- my to do list, as you can imagine, is a mile and half long and growing -- it will show up one morning, a little worse for the wear after being gone for so long, but happy and healthy and glad to be back.
If you’ve seen any loose motivation running about, please nab it and send it back to me. Of course, I’d be happy to accept a loaner until my own shows up. A generous reward is offered -- if I can get around to pulling it together.
The HipHubby and I reached a painful decision -- it’s time to leave Paradise.
The tension between the life I want to have here and the one I can have on an island of this size had been building for a while. Recently, however, that tension became one, giant, never ending battle to acquire the resources I need to lead a quality life in the face of ignorance, prejudice and outright stupidity. And I snapped.
The straw that broke the gimp’s back? Being told I could not purchase a membership to the only health club with lift equipped pool because their legal department didn’t have provisions for dealing with “people like me”, and that even if I could join, I would be forbidden to use that lift because it’s use was restricted by law to rehab patients only. But that just the setup for the breaking point. The actual shattering of my spirit came when I was unable to get the ONE attorney who knows anything about disability rights law to phone me back when I called her for a referral to an attorney to fight this obvious violation of the Americans with Disabilities Act and local civil rights laws.
That’s when I lost it. The rage I felt opened my eyes to the reality that living a good life in a wheelchair is a daily battle, but trying to do so here -- where there are inadequate medical resources, poor accessibility, and lack of choices in general -- makes that daily battle ten times as hard as it would be elsewhere.
So even though neither the HipHubby nor I want to take on the enormous task of relocating our little family back to the mainland, it has to be done. So far, we’re doing a pretty good job of not being totally overwhelmed by the sheer volume of work involved:
- getting this house on the market and sold;
- finding, buying, and furnishing a new house, and renovating it to be wheelchair friendly along the way;
- dividing our belongings into three action piles of sell/donate, pitch, and pack (followed, of course, by selling/donating, throwing out, and/or packing everything in those piles); and
- moving two people and ten cats at least 1500 miles without anyone losing their minds or going broke in the process.
No problem, right? ~LOL~
The decision about where we go has been the subject of much discussion.
Our criteria for the ideal location are a bit different than most couples. While we’d love to keep a warmer climate at the top of the list, there are other factors that trump it outright -- all of them related to my health and well being. I need access to a doctor to manage my Baclofen pump nearby. I also need a general practitioner, a neurosurgeon and an open MRI machine, a urologist, a pain management specialist, and a pulmonologist to help me manage my various health conditions. I need access to a Medicare supplemental insurance plan because the Medicare co-pays are driving us toward bankruptcy.
Since I no longer drive, I’d like access to a Para transit service so I could actually leave the house on my own, without having to drag the HipHubby out with me. And I would love to have access to a health club with a wheelchair lift for their pool and staff that understand being disabled and wanting to be healthy isn’t a crime.
After our experiences with moving to DC and down here -- both places we had never been before -- neither one of us has a lot of enthusiasm for going to a place that we have no practical experience with and trying to figure it out from scratch. That, of course, pretty much eliminates a warm climate from the running since neither one of us have lived any further south than Washington DC. And since neither of us have any desire to return to DC (housing prices alone take it from the running, but there’s also my 9/11 PTSD and the city’s poor air quality to make it a definite NO), our choices are looking more and more narrow -- and more and more northern.
So after a lot of discussion about surviving winters and weighing snow against access to doctors I know, trust, and with whom I have existing relationships, we made our decision: when we leave the US Virgin Islands, we’ll be moving back to my home state of Michigan -- specifically Lansing, Michigan, the state capital. It offers everything we’re looking for medically, and housing prices are so low we may be able to buy a home outright (depending on how much we can get for our USVI house). In addition, the last time I live there I was working in the disability community, so I already know the area and what is has to offer to crips. And the big kicker: my family is nearby, something that has become very important to me since my mother passed away.
The moving process is already underway -- we’re doing what we need to do to get this house ready to sell (e.g. making minor repairs, cleaning and packing up personal belongings, and starting to stage the house). Next week we’ll start bringing in Realtors to do competitive market analyses to see what we can reasonable expect to sell this house for and how long that will take (the scariest part of it all for me). After that, we’ll decide on one to represent us and get the house officially listed.
I’m overwhelmed because there is so much work ahead, but incredibly relieved to know that I will finally be going to a place where I will have competent doctors nearby, places to shop other than Kmart, choices of service providers, and all of the restaurants we don’t have down here!
Lansing, Michigan, here we come!
A truly amazing woman who is both a friend and an inspiration to me needs help. Keesha T., who is a fellow moderator (and one heck of an advocate) on the www.asap.org web site is in the hospital AGAIN and struggling to pay the bills.
As some of you may know, Keesha and her family are already drowning under medical debt because she's undergone 14 major operations, many of them invasive brain surgeries, in the last three and a half years. Unable to work and now newly diagnosed with a severe seizure disorder, Keesha was admitted to the hospital the night before Mothers' Day -- and just one day after winning a Mothers' Day Makeover from a local news station. The makeover was the first haircut she has had since having her head shaved for surgery 19 months ago, when haircuts became a luxury her family could no longer afford. She's so strapped with medical debt that she's even taken out her own stitches after shoulder surgery because they just didn't have the money to pay for an office visit to the doctor.
Keesha has given so much to so many, and now those whose lives she has touched want to help her. Our goal is to raise $1000 to pay the Medicare deductible for this latest round in the hospital.
If you can help, please do. Friends, this is one of those, "there but for the grace of the gods go I" situations. Keesha shares many of the same medical conditions I struggle with, and I could easily find myself in the same situation with my next major hospital stay.
To help Keesha out, just click the PayPal DONATE button below. (You do NOT need to have a PayPal account to make a contribution.) All donations will be deposited directly into Keesha's account. Every little bit will make a big difference in the life of this amazing woman -- please give what you can and let others know that they, too, can make a difference.If you'd like to add the DONATE button to your web site or blog, let me know how to send you the code! It's a very simply cut and paste operation.
I miss you.
I’m afraid my body is going through another period of decline. There’s been too many of these coming too fast over the last few years, and it scares me -- a lot. Most I have been able to handle or compensate for, but this most recent one -- if it really is a permanent decline -- won’t be so easy to work around.
Over the past few months, my arms have gotten weaker. I am no longer able to press up using the arms of my wheelchair as high or for as long as I used to, not am I able to maneuver my body around the bed (to get in or out) as easily as I once could. Some days, when I am really tired or having a lot of pain in my left shoulder, I cannot move myself any real distance at all. It’s frustrating and depressing, as it means I am one step closer to becoming totally reliant on others to do that I need to do.
I’ve known for ages that this may happen -- okay, I’ve been told to expect this may happen -- but that doesn’t mean it’s any easier to accept that the time in which it occurs may be here. There’s always going to be a small part of my spirit that refuses to believe that what the doctors predict for me (total quadriplegia) is really going to happen. After all, I’ve defied a lot of predictions in my life, and I think I’ve become a little bit cocky about being able to do it again.
There’s something about this particular loss of ability that’s more frightening to me than the others I’ve gone through. Throughout everything, my arms have always worked pretty well -- they became my legs when I needed them to on that first day I sat down in a wheelchair, and they have gotten me to where I needed to go ever since. They are the reason I have any freedom and autonomy at all, and the fear of losing that chills me to the bone in a way that mere words cannot explain.
The truly good news is that this may not be permanent. (Fingers and other body parts crossed for luck.) This decline in arm strength correlates almost perfectly with the timetable for damaging my right rotator cuff and breaking my leg.
Since those two things occurred, I’ve been babying my upper body. This is partially by choice -- in the hope that my damaged shoulder will heal on its own -- and partially of necessity because I just couldn’t get around on my own the same way I had before now that I had to drag along a leg encased in a fiberglass cast. During the period I had my cast on, I relied heavily on the HipHubby to help me transfer in and out of my wheelchair, which gave my upper body a long respite period from having to move my full weight around. Now that I need it to maneuver me about again, it’s not been able to respond in the same way it did when it was being used all the time.
I’m rather hoping that this little vacation from being the workhorse can be reversed. This week, I’ll hopefully be starting physical therapy to help repair the damage to my rotator cuff. Once I feel more confident that bearing my full weight on my right arm won’t mess my shoulder up any worse than it already is, I’ll be able to start swimming again. It shouldn’t take long after that to determine if the loss is temporary and can be regained through training, or more permanent in nature, the result of my nerve damage. Even if I cannot regain my full strength, I should be able to tone myself up through the PT and exercise programs, which will hopefully delay the progression of the nerve damage for as long as possible.
These periods of decline are getting harder and harder to handle mentally. Thank goodness there’s reason to believe that this one may not be anything more than just slacking off (okay, so having a broken leg isn’t really slacking off.) Wish me luck that with a little hard work in PT and a lot of laps in the pool I can get back to be the buffest HipCrip possible.
I can’t believe another birthday snuck up on me. Okay, snuck up is totally the wrong term -- leapt out from hiding and pounced on me is a more accurate description! What happened to shift the passage of time that now makes birthdays and new years come at you at lightening speed, when it used to be that, as a kid, time absolutely stood still when you were expecting a special day like a birthday?
Anyway, last Monday, I turned 45, and I couldn’t be happier! It wasn’t because I got the greatest birthday present I could ask for (the cast on my broken leg came off that day -- woo hoo!) -- although that didn’t do anything to hurt my mood, either -- it’s because for me, even more so than most, being here to celebrate another year is truly a blessing of the highest order.
You see, I never expected to live this long.
When I was 14, I was diagnosed with a kind of cancer that kills 95 percent of the people who get it within five years of diagnosis. With those kinds of odds, I really never expected to live past 30, let alone make it into my mid 40’s. But I did!
I’m here, and even though my body feels like it’s 145 instead of 45, and my brain feels like I’m still 25, I AM HERE! Every day that I can still say that is truly a gift of bonus time, to be savored like rich chocolate, and to never be taken for granted.
In many ways, getting that diagnosis was a gift. It taught me early on that life is too short to be taken for granted -- every bit of it needs to be feasted upon instead of allowed to pass by, un-tasted. Very few people are able reach that realization before it’s almost too late to do them any good. But I was lucky, I learned it early, and have done all I can to practice it every minute of every day.
And on my birthday, I savored it all! After getting the cast off, the HipHubby and I went out to play and enjoy our time together. We headed over to the Casino to collect my complementary birthday T-shirt and rack up some of the double reward points offered for gambling on your special day. The gods of good fortune must have been on alert that we were coming -- they sent us home with $100 more than we started out with. While the money was a nice surprise, it wasn’t what made the night a winner -- we had a wonderful time just being together, laughing and sharing our experiences, and that is, by far, the most valuable prize we take away from any casino visit.
When we were done playing, we enjoyed dinner on the beach at night, listening to the waves lap on the shore and watching the stars come out. After dinner, it was a scenic drive along the shore and under the night stars back to the house, where I savored my first shower without the cast, then slipped into a bed made up with crisp, clean, ultra soft sheets. I can’t imagine the better birthday than that.
And that, my friends, was a perfect celebration of my special day. But the real gift to me is not the activities in which we engaged, although I am so very grateful that we have the resources and stamina to do them. My gift was, and is, the time that I have been given here. No matter how trying life can get, no matter how draining and frustrating my medical conditions can be, I AM HERE with the people and animals I love. Good days or bad days, it’s all bonus time, and I cherish every minute that I have.
I had a wonderful day yesterday, a day of exploration, fun and firsts.
It was date day, also known as the "Get the HipCrip the Heck Out of the House Day," and so the HipHubby and I piled into the care, rolled the windows down, turned up the radio, and headed off to explore.
Our destination for the day was Frederiksted, the smaller of the two towns on island. 
Frederiksted is located on the west end of the island, just north of Sandy Point, the largest breeding ground for leatherback turtles in the world.
We had no real agenda for the day, so we made our first stop at the waterfront. Just north of Frederiksted, there’s a large family friendly area called Rainbow Beach. In addition to being a great place to swim and snorkel, Rainbow Beach also has a large playground with swings, slides, and monkeybars -- it’s one of those places where I really wish I wasn’t stuck in my wheelchair so I could run about and get silly with my husband. But since we couldn’t play on the toys, we sat in the shade, held hands and watched the seagulls. The water was so sparkly it looked like it was covered in diamonds.
As we sat, we noticed that there were a few people out on the pier, so we decided to go check it out. This pier isn’t your typical fishing pier -- it’s 1526 feet long, and was designed to moor two cruise ships at the same time. It’s also one of the most spectacular dive and snorkel sites on island because the new pier was built on top of the remains of the old pier, which was destroyed in 1989 when category 5 Hurricane Hugo leveled the island -- and the pilings from the old pier are slowly being absorbed by the coral reefs that abound on the clam west end of the island.
We had a chance to see firsthand why people flock to the pier to snorkel. The water there is dead calm and crystal clear -- we were easily able to see urchins and other small critters, including a small sand robin, on the sandy bottom, which we estimated was at least 15 feet below the surface. Then, as we walked along the right side of the pier, the most incredible thing happened -- a large blue sting ray came swimming along the edge of the pier, not more than three feet from the surface. The ray was at least five feel long from his snout to the tip of his tail, and he had a wing span of at least four feet. I just don’t have the words to describe his brilliant blue color or the incredibly graceful movements he made as he slowly cruised by us. It was awesome, and made me more determined than ever to find a way to get in that water!
The rest of our time on the pier was a mixed bag of good new and bad news. On the positive side, we learned that fishing was allowed -- all we needed to do was to get our own gear and head on over. One the down side, getting out to the end of the pier might be challenge -- the only handicapped access seemed to be through two gates that appeared to be kept locked. And even though there were ramps on both sides of the pier, they clearly weren’t there for crips to use because they lead directly to a small flight of stairs.
Even though we were unable to walk the full length of the pier, 
it still offered us a terrific vantage point from which to view some of the local attractions. Unfortunately, the photos we took of Sandy Point and Fort Frederiksted just don’t to justice to what a gorgeous day we had, nor how truly beautiful the scenery on our little island is.
On the way home, we stopped for ice cream at a little shop that I discovered the first day we landed on the island. All of the ice cream is hand made, and most are flavored with local tropical fruits. Let me tell you, pink ice cream plus a blue sting ray equals one perfect afternoon.
For the first time in my life, I find myself with nothing to talk about. No rants that need to spew forth. No musings about the nature of life, the universe and everything. No questions to be answered, no answers to be questioned. I got nothing.
For someone as verbose as I typically am, this is a very uncomfortable state in which to find myself. Words have never failed me before. Okay, that’s not totally accurate -- like everyone in my age range who takes as many medications as I do, the occasional “brain fart” will slip past, taking with it the one perfect word for which your brain has searched, leaving you tripping over your own tongue and sputtering. This is usually when the words, “Thingy and stuff” start to dominate your vocabulary.
But brain farts aside, my words have never vanished into the fog the way they have now. I actually feel empty, as if a constant companion has gone away.
So the question then becomes, how do I get them to come back? I suspect that the key lies with] my emotions, which are also taking a brief hiatus. When I can find my passion for something -- anything -- my words will likely return to me.
If you’ve seen (or heard) from either my words or my passions, please tell them I miss them and need them to come home. It’s lonely here without them.
For those who have never been to tropical climates like Florida or the Caribbean Islands, there are little gecko-like ground lizards EVERYWHERE. 
They provide a great service for us people by eating mosquitoes and other small bugs, and by keeping our cats endlessly entertained as they crawl up the screen, perch on the window louvers, and skitter from place to place. They rapidly become a pretty benign factor of life, and are, as the Hitchhikers’ Guide to the Galaxy describes the Earth, mostly harmless. Annoying, especially when they manage to get into the house, but mostly harmless.
Today, however, the HipHubby (HH) ran into a lizard with a major attitude problem, and a suicidal disregard for the odds.
After doing some routine yard maintenance -- mowing, whacking the weeds, and beating back the infiltration of tan-tan trees (garbage trees that are the scourge of the island) -- my HH sat down on one of the chairs on our front porch for a few minutes before coming in to shower. As always, there were dozens of lizards sharing the porch with him, including one teenage male sitting on the rail directly across from where HH had plopped.
Something about this particular lizard caught my Hubby’s attention, and their eyes locked. His brilliant orange throat pouch started to flare (the lizard’s, not the HH, who doesn’t have a brilliant orange anything), and the little guy started to engage in what we call the humpy dance, a combination of lizard push ups and head thrusts, with the occasional tail flick tossed in or good measure.
Not wishing to be rude, or perhaps suffering from a bit of heat stroke, the HH responded in kind -- bopping up and down in his chair in perfect time with the lizard, and never breaking eye contact.
And then something in this lizard’s tiny little brain snapped. Even though he was only about four inches long from the tip of his snout to the tip of his tail, he jumped down off the rail and, once at ground level, closed the distance between himself and my Hubby by half. His beady little gaze never wavered. Once in position, he started to dance again, this time bouncing a little more aggressively. The little guy’s throat pouch kept time with his bopping, and my HH kept time with them both.
Apparently this just pissed the lizard off. He again narrowed the distance by half and resumed his little war dance, this time keeping eye contact by craning his neck back so far the white of his chest was visible each time his orange pouch deflated.
This, of course, cracked my HH up. After regaining his composure (it would have been rude to laugh out loud at this gutsy -- not to mention foolhardy -- challenge), my HH leaned forward and asked the lizard, “Are you sure you want to do this?”
As if to answer, the lizard stopped dancing just long enough to run forward and take up a new position, directly between my HipHubby’s heavy work boots. The little guy may have a tiny brain, but you gotta give him credit for having the cajones of an iguana.
The HipHubby’s amusement at the situation was wearing thin at about the same rate that his concern over having a lizard run up his pant leg was growing. It was time, the HH decided, to put this arrogant little guy in his place. With his big blue eyes still firmly locked on the lizard’s little black ones, the HH picked up his right boot and brought it down with soft thud, quickly and firmly, right next to where the little reptile stood, still doing the humpy dance.
It didn’t so much as flinch, let alone move. It just stood there, doing little lizard pushups and puffing out its colorful throat balloon, now dwarfed by the large grass-stained leather boot only inches from the tips of its gangly little toes.
After complimenting the lizard on his chutzpah, the HH decided to have a little chat with the little guy about what was and was not a good thing for a reptile of that size to do when it came to interacting with humans. After firmly grabbing the lizard around his midsection and lifting him up to eye level, my HH raised the index finger to wag while he lectured, and the little pocket-critter bit him!
That was the end of the HH’s patience. After prying Gordon Gecko’s jaws off of his throbbing index finger (these tiny beasts could give a ferret a run for its money when it comes to jaw strength and sheer determination), the HH calmly informed the lizard of his “one strike, you’re outta here” policy. Incredibly, the lizard was still attempting to humpy dance and assume an offensive posture -- not at all easy to do when one in suspended in mid-air, but you’ve got to admire the effort, right up until the moment of his departure.
You’ve heard of the Highland Fling? We’ll down here we do what’s known as the “Island Fling” -- which basically involves turning lizards into unwilling Frisbees. Points are awarded for style, altitude achieved, and of course, distance. Although I wasn’t there to see this particular Fling, the HH assures me he scored straight tens for his success in lobbing this little ground lizard clear into our neighbor’s yard, easily clearing the eight foot fence along the property border
The score for this Lizard Challenge: HipHubby wins by a fling out.
In no particular order:
- Being closer to my family and friends.
- Home mail pick up and delivery.
- Stores and pharmacies that are open 24/7.
- Arbys. The HipHubby misses Burger King.
- Having a choice of doctors, especially specialists. Or having access to even one specialist that I need.
- Cottage cheese that costs under $5 for a large carton.
- Being certain that the stuff you want to buy over the Internet can be shipped to you.
- Free shipping (it’s a continental US thing only).
- High speed Internet access.
- Hospitals where you don’t need to spend three days laying on a gurney in the ER before a bed becomes available and you don’t need to bring your own blankets.
- Streets with names.
- Cable shows on demand.
- Home delivery of food -- everything from groceries to pizza and Chinese.
- Department stores that aren’t Kmart.
- Knowing that the abbreviation for my state will appear in every drop down list of addresses.
- Oil changes for my car that cost under $40.
- Toll free numbers that work.
- TIVO.
- Seven-Eleven and Slurpees.
- Real newspapers.
- Having checks clear in less than seven business days. (That’s how long it takes checks from the main land to clear in or local bank account.)
- Real estate agents who actually believe they work for the buyer, not the seller. (Even agents who assist buyers down here feel beholden to the seller since that is where their commission originates.)
- Stores that carry the items you need.
- Dairy Queen and Baskin Robbins.
- Real book stores and libraries.
- Voting for president and having real representation in Congress. The latter still doesn’t apply, of course, to the District of Columbia. (Grrrrrr.)
- No kill animal shelters.
- Less animal cruelty and neglect.
- Quality doughnuts! Most baked goods down here taste awful.
When it comes to sleep, I don’t seem to have a middle ground -- it’s either I get almost none and exist as a zombie, or I sleep so much that I feel like someone slipped me a poison apple.
The tides turned for me this week. For the last month, maybe more, I had a bear of a time getting any sleep at all. I just couldn’t seem to drop off for any reasonable length of time. When I finally did manage to sleep for a little bit here and there, it was always during the day time, never at night.
My schedule had become totally turned around -- I was awake all night, every night, and slept for a few minutes here and there during the day. Relationships with people in my same time zones? Forget about it! I was always unconscious, or too tired to function, when they were awake and ready to talk or do something, and I was then awake all night when my local friends (and the HipHubby) were sound asleep. Thank goodness for the Internet and friends in Australia!
I finally decided I had to do something drastic, and started taking a prescription sleep aid. I started with a low dose, and actually got a few hours sleep at night. So if a half dose does that, a full dose ought to give me the eight hours I dream of, right?
Oh, so wrong.
It turns out that when you add a full dose of Ambien CR to all the narcotics I’m already taking, the sleep aid downer becomes an full-blown amphetamine upper. I become wide awake, complete with a pretty good approximation of the same jitters that come from having a cigarette and a Mountain Dew for breakfast. Definitely not a good thing to happen ever, but really bad when it happens at 4 o’clock in the morning to someone who can’t even transfer out of bed on their own (thank you, stupid broken leg).
After scaling back to the half dose earlier this week, life was grand. I managed to get nine hours of uninterrupted sleep for the first time in I can’t remember how long. I FELT GREAT! I was alert, and I was taking a lot less pain medication. The only down side was that I was sleeping in later than I liked, not by choice but because I just couldn’t stay awake. I repeated the dose for the next two nights with the same results -- great sleep all night and into the mid-morning, and even a few naps during the day.
Feeling confident that I was now well rested, last night I decided to forego the sleep aid and see what happened without it. I initially had a few problems getting to sleep and staying asleep (the staying asleep part has been a major challenge in the past), but I finally managed to drop off and slept peacefully for another nine hours, a full hour past the time when the HipHubby got out of bed. That NEVER happens. Not only did I sleep in, I slept all afternoon and well into the evening, and I’m feeling a bit sleepy now (it’s just after 1 am).
So it seems that sleep has become another item in my life that is a case of no middle ground, it’s either feast or famine. This living in the extremes has been such a recurrent issue in my life that the first tattoo I got -- way back in 1988 -- was of the comedy and tragedy masks (it’s over my right shoulder blade -- I’ll see if I can get a decent photo of it to post). I figured that they were an appropriate symbol for me since my life was either all good or all bad.
Now that this theme has extended to sleeping and I either seem to be a total insomniac or a functional narcoleptic, perhaps I ought to get my masks tattoo updated to give the happy mask a pillow and add a few “ZZZ”s (since I am at my best when rested) and add a few dark circles under eyes of the tragedy mask. Hmmm, I’m actually liking that idea more and more.
Off now to see what will happen tonight. Any wagers on what will happen over these next few days?
I have been cooped up in my house for way, way too long. It’s not for lack of desire to get or, or for trying. It’s just one of those things that you have to adapt to when your body becomes as unpredictably uncooperative as mine (and occasionally, the HipHubby’s).
Having the cast on hasn’t exactly made getting out of the house any easier. With the cast in place, I can no longer sit in my favorite position, which happens to also be the most comfortable for long periods of time. Without being able to change positions, get wet, get sand down the cast, it’s been a bit of a challenge trying to get the heck of out dodge.
Today, though, all the barriers were mowed down and my desire to break free finally triumphed! The HipHubby and I went out and spent a fun afternoon at the casino.
Our local casino is no Atlantic City or Vegas, that’s for sure. It’s a tiny little place on the desert-like east end of the island with a dozen gaming tables, a few hundred machines (all slots except for eight video poker machines) a small (and as yet unlaunched) sports book area, a snack bar, and a bar that hosts live bands on the weekends. But if you enjoy gambling (as we do now and again), it’s more than enough to have a good time for a few hours.
Which is exactly what we did today.
The drive over, which takes between 20 and 25 minutes (it’s a 15 mile drive, far closer as the crow flies), was GORGEOUS. The sun was shining brightly, and the only things breaking up the endless blue sky were a few widely scattered cottony clouds. With the arrival of spring, everything is in bloom again, and there were flowers everywhere you looked.
But most beautiful of all was the water. The majority of the drive between our house and the casino runs parallel to the coast, and the views of the water can be breathtaking. They were nothing less than that today. There had to be half a dozen different colors visible, including fluorescent turquoise near the reef shallows, pure white as the water breaks over the reef formations, and the clear deep blue of the open water. Just seeing this was more than enough to shake off any traces of cabin fever.
Since we hadn’t been out in so loong, I wanted to commemorate the occasion by getting our picture taken in front of the dolphin fountain at the entrance to the casino. 
The HipHubby recruited a sweet man who works security to snap the photo -- our photographer du jour thought it was great that after four years of living here, we were still silly enough to play tourist now and again.
The day just got better from there. We enjoyed a tasty lunch of popcorn shrimp (a snack bar specialty), then hit the machines since the HH’s game of choice, roulette (which he has cleaned up on in the past despite it being the table game with the worst odds), isn’t up and running in the afternoon. No big wins to speak of, but we did play a couple of penny machines for a few hours on about $7.50. Cheaper than going to a movie, for sure.
We stayed under our budget for the day, I came home in no real pain, and we managed to get out of there before the heavy smokers arrived. In my book, that’s a jackpot win all on its own.
Sharing a basket of popcorn shrimp, fries, and a soda: $9.50.
Two hours of play on the penny slot machines: $7.50.
The gallon of gas that got you to the casino: $2.89.
An afternoon out of the house, having fun with the love of your life: PRICELESS.
...sitting in a wheelchair is not the end of the world.
It’s different, for sure, and it’s BADLY misunderstood, 
but it doesn’t mean that your life is at an end.
Yes, my life was different when I could walk well. But those walking well days came to an end, and it reached a point when every step was a struggle. I was a prisoner of what my legs were able to do, and that sucked.
Then I got my first lightweight, rigid frame wheelchair. Not one of those old, heavy, fold up the middle, footplates falling off, rattles when you move, nursing home models -- a shiny, purple, sleek, swift, goes-15 feet-on-one-push sporty model made by people who sit in wheelchairs for people who sit in wheelchairs.
It took me less than five seconds after sitting down to realize I was FREE!
First thing we did was go to the mall. I covered all three levels, under my own power, "walking" next to my husband. I had never done that with him before.
From there, we just went. First stop, Las Vegas, where we got married. No pics, though -- I was on steroids at the time, had moon face (in which your face swells and looks like a full moon cartoon), and weighed about 50 pounds more than I was used to, so I vetoed any photos.)
From there, we went to Disney World, and London, and back to Vegas, and then Kauai, and then St. Thomas to snorkel. The year after that, we moved to the USVI. Not one of your Top 10 (or Top 1000) accessible islands, but who cares? Life is for the adventurous!
We 
haven’t been on vacation since -- not for any reason except where do you go when you already live in Paradise (and have a dozen cats you need someone to take care of when you’re gone? ~lol~)
I may prefer being healthy, but you know what? I’m not. So I deal with it, I make the best of it, and I find ways to do what I need to do. It’s not the end of the world, or the end of my world.
What’s hardest, for me, is listening to people tell me (indirectly, of course) that they’d rather die than be me, or that their greatest fear is becoming me. I know logically that it’s fear of the unknown speaking, but what statements such as "I’d rather be dead than use a wheelchair" make me think and how they make me feel are two different things. They make me feel bad, They make me feel angry. I mean, how would it make you feel if someone looked at one tiny piece of your life and said, to your face, "Geez, I’d rather be dead than be you." Not good, right?
So 
the next time you’re tempted to say, "I’d rather be dead than X" stop and take a good look at your life. Wouldn’t you rather roll into the stadium to see your kid score that winning touch down than not be there at all? Hopefully, the answer to that question will make you understand why my life looks, on most days when the pain isn’t too bad, pretty darn good to me. Different, for sure.
But as the Arby’s commercials say, Different is Good. At least to me.
Being saddled with chronic medical conditions -- not just the disabilities, but the seemingly never-ending stream of infections, skin damage, and intestinal problems that go with them -- has deeply affected my ability to show compassion for others.
On the one hand, I have developed an ability to show deep compassion for people that wasn’t there earlier in my life. I understand now what it means to hurt all the time, to be at the mercy of a body that’s in revolt, and to often have no idea why certain things are happening or what to do about them. These experiences have softened my attitudes towards others facing long-term, serious medical issues.
The flip side to this coin is my attitude toward those typically healthy people who come down with a short terms illness. In a nutshell, it sucks. Okay, so that’s a bit of an exaggeration -- but not much.
Don’t get me wrong, it’s not as though I can’t feel for people who have the flu, or a cold, or food poisoning. I’ve had all of those things, too, and I know they can make you absolutely miserable. And I understand that these typically healthy people aren’t used to pain and discomfort, so what they experience is magnified. I know their pain is real, and I can respect that, and extend them empathy and sympathy.
To a point.
While I’m generally okay with being the doting wife/friend/daughter for a few days when the healthy folk in my life take ill, there comes a time when some of these sickos start to grate on my nerves. That time occurs when the whining and obsessing set in.
Sexist note: this phase typically begins much sooner in men than in women. In fact, in some men, the beginning of my intolerance occurs at the moment their first symptoms hit. This is especially true when the illness involves vomiting.
I just can’t stand the drama of it all. After living with chronic illness, you learn pretty quickly to hide your pain, to mask how you really feel because people get tired of hearing it. This, dear readers, is a lesson the TI (Temporarily Ill) should learn to embrace -- everybody loves a trooper, nobody likes a whiner.
Especially me.
So if you’re in need of tender loving care the next time a cold hits, or you eat some bad sushi, I’m probably not your best bet after the first day. From then on, if you need me, you can find me in the book under B, as in “Bitch, Stone Cold.”
There, there, it will be okay.
Some days, it’s hard for me to hang out at the ASAP.org forums because there are so many posts from people who grieving over what they cannot do, what they’ve lost. Most of these folks are relatively new to the worlds if illness and disability, so their need to mourn their old lives is a natural part of the process. In my head, I get al this. But in my heart, I sometimes have trouble being supportive or even holding my tongue when there is post after post focusing on what you can’t do anymore, and none that expresses gratitude for all you can do.
To be honest, it’s especially hard for me to relate to people who are so much better off than so many, yet who feel deep down in their hearts that they’re suffering terribly. Don’t get me wrong -- I feel bad that you have a syrinx that has affect your life and brings you some pain. But it’s impossible for me to get all worked up over the fact that your pain is only bad after you play basketball with your kids, or participate in your Wednesday night soccer league. And it doesn’t help that this “severe” pain of your can be managed by an Advil and a good night’s sleep, or that you won’t even need to stay home from work the next day.
I want to be supportive to these people -- I really, really do. And I try.
But to often, their posts -- as necessary as they are to helping these individuals come to terms with their post-disease lives -- do little more than set my own acceptance of my life, and my limitations, back.
I work ever single day to be grateful for what I have left, instead of mourning for what I have lost. Some days it’s easier than others. These are the days when my pain levels are at their lowest (the pain never goes away, but sometimes it fades enough to be little more than background static), my husband is at his happiest, my kitties are being the most loving and cute, and the island looks its best. At these times, all that matters is that I am here to enjoy it with the love of my life, and to take in all that being alive has to offer.
Every now and again, it’s just not possible, and I break down and have a “poor me” day when I cry, whine, and complain about how it’s so unfair that there are so many bad people who escape unscathed while so many people like me, and several friends (Janice, this means you) who do their best to do good are burdened with severe disability and unrelenting pain. And it’s on these days that I lose my patience with the people who don’t seem to understand how relatively well off that they are.
I‘ve learned to be good at biting my tongue when it comes to this type of grieving. What triggers the need may be something as casual as a remark about how horrible it is that they couldn’t do something that‘s on the frivolous list (like getting a seaweed wrap), or as serious as people who seem to be disease shopping -- the kind who are always looking for reasons to believe they have a condition with which they have already been told they don’t have. Either way, these are just reminders of how much I have lost, and as awful as it is to admit, can get to me and distract me from my gratitude that I am not worse off than I already am.
I hope that, in time, the folks who are at this point in their grief over losing the life of a person free of chronic disease will reach a point where they, too, can be grateful for the things they still have, instead of looking only at what’s gone. Until then, on my good days I’ll try to help them see that life is not over just because you need to do some things differently -- and they there’s a lot to be grateful for not matter how bad things can get. And on my bad days, well, what are a few more teeth marks in my tongue?
This morning I went for what was supposed to be my first MRI in four years. Key words in the sentence: supposed to be.
I should have known from the get go that this wasn’t going to be the best day to get this done. There were plenty of warning signs, every single one of them ignored by me.
One big clue was that I had not slept at all the night before.
For some odd reason, my sleep schedule has been horribly messed up for months now. I cannot get to sleep at night unless I use a prescription sleep aid, and even then I usually only sleep for a few hours. Sleeping during the day -- no problem at all. I drop off easily and naturally, and sleep well, the kind that leaves you feeling as though you’ve slept for a day even when you’ve only been asleep for an hour or two.
When I haven’t slept well (or at all), my pain levels go crazy, my emotions grow raw, and my ability to focus goes away. And that’s exactly what happened this morning.
Memo to self: thinking, “I sure hope my pain meds kick in better once I’m in the scanner” is not a good thing. My pain was quite manageable yesterday -- I even managed to skip two of my regular doses of meds, which I usually need to take every three hours. I was feeling great -- until midnight. At that time, my pain levels went to a 10, and I spent the rest of the night trying to get them back under control. It didn’t help that I had taken a dose timed to be in fell effect at the time of my appointment, only to have my appointment bumped back for almost two hours (right about the time the current dose expired) because an emergency case was using the scanner.
The pain and the raw emotions weren’t helped by the fact that the first thing I thought of thought of when I saw the MRI scanner isn’t the four poster bed the HipHubby had described. To me, it looked more like a cheesy little plastic stand I had to raise my monitor up a few inches. 
Compared to a torpedo tube closed MRI, this machine is WAY open, but it was still a little too close for me. Once the tech (a wonderful, caring man named David) had wrapped this 2 inch wide flexible coil twice around my neck after finding out I couldn’t use the “hockey mask“ type coil because my kyphosis was too severe, I had serious doubts about my ability to handle this.
Between the pain I already had, the new pain triggered by hitting my bad shoulder on the “hockey mask” coil when trying it out, having the flexible coil rub against that same bad shoulder, being uncomfortable from my cast, and then being shoved into this tight space, I couldn’t do it -- and I lost it. My mouth went dry, my lips chapped up, my pain went nuts, and I started to have my first full blown panic attack ever.
And that was before the first part of the scan (pre-contrast) ever started. ~sigh~
So I had my DH get nice tech David to pull me out so I could get a drink, get some air, put on some lip balm, and try it again.
I’m used to having my scans is place where the room was wired with speakers so the tech can talk to you, and you can talk back. Here, you have to wear headphones to have that option, and for some reason, they didn’t fit on me that well and I couldn’t hear the tech at all. It’s maddening to me to not be able to get reports on how much longer I need to hang on. Yet even so, I tried to just listen to the radio and forget where I was.
This time, I actually lasted about 10 minutes before a whole lot of pain -- and a little panic -- forced me to call it all off, for good for that day.
I am so embarrassed I could just die. Even though David and my DH were both very nice about the whole horridly embarrassing decision, I can’t help but feel I’m being a huge wimp about the whole thing. I’ve never backed out of a medical test before, but for some reason I knew that there was no way I was going to make it through this one.
I’m supposed to go back next week for a thoracic scan. David, tech extraordinaire who thanked me for breaking up his boring days, thinks that he can do the cervical and the thoracic at once. That would be awesome, as long as my stupid body cooperates and my brain can get past my failure.
I know now to take extra pain meds with me to the hospital in case the scanner is occupied well into the time of my appointment, and I’m going to call my neurologist and ask him for an anti-anxiety drug to help me through it. I really don’t want to let this stupid test defeat me.
Wish me luck next week-- I’m going to need it!
Five weeks ago, I broke my right leg, just above the ankle, while attempting to reposition myself in bed. My legs, which are usually crossed right over left -- Indian style -- when I do this. While up on my knees in that position, my right shoulder gave out and I collapsed, face down, on the bed. (Apparently I seriously injured some muscles in my right shoulder late the night before, but because I have no feeling in that area, I didn't know it.)
Unable to get up on my own, my HipHubby managed to help get me back onto my knees, but in the process my legs uncrossed themselves and then re-crossed in the opposite direction. This put her left leg directly over her right ankle, and when she came back down, we heard the bones go ~SNAP~ ~crack~. What a sickening noise, one I never hope to hear again. Both bones (tibia and fibula) are fractured.
I opted to forego letting them operate on my ankle, even though it means the break won’t align properly when it‘s healed, but that‘s okay. I don't really use that leg anyway -- it's not my load-bearing leg so even a misalignment won't be debilitating. Fortunately, no shoulder surgery was needed, either. When you have no legs to rely upon, your arms do double duty -- I have no idea how I would have survived it they had to take one of my arms out of commission for weeks so it could heal from surgery.
The ortho surgeon seems quite annoyed that I wouldn’t let him operate, even after I told him (in no uncertain terms) that my last experience with surgery on that leg was not that good because of the nerve damage to that leg. It‘s so hypersensitive to pain that pain control was almost impossible in the past, and given that this new guy is already “scared“ of the amounts of meds I take to function every day, I have serious doubts that he will give me what I need to be comfortable. Add to that all of my lung problems (general anesthesia is hard on me).
The ER experience was a nightmare thanks to a BITCH of a doctor, who decided that because I was in a wheelchair, I should not be treated as a person and, in fact, should be treated with great suspicion, if at all.
Yes, folks, Because of my wheelchair and my meds for my chronic pain, I was tagged DRUG SEEKER when I went to the ER. I was assured by the triage nurse that they would give me pain meds before I got xrays. But when she went to tell the doctor about me, the doctor’s response was, "Well what does she want from us?" The doc denied me any drugs, saying she needed to see the films first. Well the xrays were hell, and the tech stopped taking them because I was in such agony from her trying to get my foot in position that I was sobbing and close to screaming.
That crying jag prompted the doc to finally give me some Toradol. By the time I had that shot, I was already in less pain and I was able to stop crying simply because no one was manipulating my broken leg anymore Of course, this b-word doc too the fact that I was able to stop crying as proof I was a drug seeker, saying to my nurse, "Well I was right -- look at how fast she stopped crying when I know that there's no way the drug worked that fast." We yelled back at her that I was able to stop crying because I wasn't moving and the fact that I was in pain was finally validated. Finally, we confronted her about her labeling me a drug seeker, and she said, "Well when I see people like you come in here, I get suspicious." Um, which people likie me would that be? The ones with a history of extensive spinal cord surgery? Wheelchair users? People with broken legs?
Doctor Drug Seeker went on to try to wash her hands of me by calling the ortho doc, and so I had to sit there in pain until just before the ortho guy came, even though she knew I'd fractured both bones in my right leg (just above the ankle) and, they thought, my right clavicle. (Thank goodness that turned out to be a wrong diagnosis.) Finally, just before the ortho gut arrived, she relented and FINALLY gave me some Demerol. I am writing a lot of letters, and enlisting the help of the patient advocate to try to get her fired.
As of today, I’ve been in a cast for four weeks -- make that two casts, as the first one was put on sloppily and was causing a pressure sore so it needed to be removed. My ortho guy, who has no clue about what people in wheelchairs are like, tried to get out of replacing it by cutting it into two pieces (top and bottom), then holding it together with an ace bandage. (He thought this would hold because of course, I didn’t move at all -- when I really bang the heck out of that leg because I can no longer control where it goes.) When I finally convinced him of this (he thought I was a whiner and told me he’d never had so many problems with a cast in decades of practice), he finally decided to recast me, and took his time doing it so it fit right.
Yesterday, I went for x-rays to see how I’m healing. Before revealing the big news, I’ve got to take a second to salute the guy who took the x-rays for his creativity in getting my casted, muscle-spasm maimed leg into the proper places to shoot an x-ray. He not only was undaunted by the limitations, he got both shots of his first try, thanks to the bible of x-ray technicians, a book called, “Radiological Positioning.” (No, he didn’t look up my problems with getting my leg to bend just so in the book -- he used the book to prop my leg up just so. It was incredibly clever and funny as heck)
The news was TERRIFIC. Not only am I healing well, I am healing as well as someone who can walk, an outright miracle since legs usually need to bear weight in order to heal and absorb calcium. Yet even though I cannot use my leg, even in its usual minimal capacity thanks to the cast I’m wearing, the fractures are knitting and developing callous, visible on the x-ray as a sort of fluffy shadow. My ortho doctor is amazed at the progress, probably even more so after seeing that I also have osteoporosis and can barely move the leg, let alone put the stress on it needed to draw the calcium to the injured areas.
My shoulder has improved, but I still have mobility problem. I have a great deal of difficulty lifting it into certain positions, like those needed to take shirts on and off or to wash my hair. Once my leg is better, I’ll nag the ortho about ordering PT for me so I don’t lose any strength or range of motion -- this is critical since my other arm is already impaired in that same way from the trapezius muscle flap.
It’s been a rough road and a real learning experience to discover just how much work one of my remaining limbs does for me.
With this level of progress, I’m set to get my cast off one month from today, on my 45th birthday. I can’t imagine a better present to get than that.
This week, we made another of our quarterly journeys to Puerto Rico so I could get my intrathecal pump refilled with baclofen, have the dosage adjusted to try to offset some leg spasms and the new “MS Hug” problems I’ve been having, and pick up my next round of prescriptions for the pain medications that keep me functioning.
As I believe I’ve mentioned previously, air travel wipes me out. It is physically exhausting, causes increased muscle knots and discomfort in my legs (and now my arms), and can wreak havoc on the skin graft that covers my left shoulder blade -- too much resting against the seat and the friction creates an open spot that can take ages to heal properly. And that’s on the good trips.
We were fortunate that this weeks, everything was going right for us: the lifts were working at both airports for both legs of the trip. And best of all, they actually had big, strong men who listen on hand to drive the aisle chair. You’d probably be shocked at how often they send the 110 lb. women to do the heavy lifting while them men watch, and often criticize what’s going on.
Our last journey was not one of the good ones. In fact, I think we experienced just about every crip-related problem out there.
It started when we arrived at the airport and discovered that once again, the lift used to board passengers who cannot walk up the prop jet stairs was out of service. This is becoming a common problem -- this year the lift has been broken far more than it’ s been in service. That’s annoying in and of itself, but the truly frustrating aspect of it for me is that the lift itself isn’t malfunctioning -- it just has a flat tire that prevents the airline staff from rolling it out and aligning it with the plane’s door. Try as I might, I just can’t understand why it’s so hard for the airline to fly in a new tire or, heaven forbid, keep a spare tire on site. Perhaps extra tires have gone the way of the cheesy little paper-covered pillows and have been eliminated as part of their cost-cutting efforts.
For those of us who cannot walk, getting on board a prop jet poses a threat to our bodily integrity when the lift is functional. When it’s out of service, this process literally becomes a threat to life and limb because we must be carried up and down the narrow steps by whatever personnel are on hand while strapped into a horribly uncomfortable L-shaped metal dolly that’s narrower than the aisle in the coach section of the plane.
Here’s how the process works. The Hip Hubby and I are escorted out onto the tarmac first, where I’m met with the aisle chair. We position the aisle chair parallel to my wheelchair on my left.
If I were in charge of the world, it would be mandatory for all airline staff who might be called upon to hoist my cute little gimpy butt on and off of planes to experience what it’s like for themselves. Unfortunately, I’m not, and so the majority of people who wind up on aisle chair detail have no idea how to carry out this assisted boarding process without causing their passenger physical and/or emotional damage.
I’ve learned from experience that I’ll be able to tell what kind of ride I’m going to have within 60 seconds of transferring from my nice comfy wheelchair into the hard, narrow aisle chair, and it’s all based on the attitude of the people assigned to help me. If the boarding crew looks me in the eyes and talks to me instead of my husband (you‘d be shocked at how often that happens), there’s a good chance that it won’t be too bad because they will actually listen to my suggestions and preferences, and generally treat me like I’m a person instead of a piece of baggage. Those who don’t speak to me, or even acknowledge me, mean a bad time is ahead.
One of the reasons that the attitude of the staff makes such a big difference is that the Hip Hubby has been well-trained over the years. He knows my strengths, preferences, and “no touch” zones. He respects my preferences for how things are done instead of treating me like I’m luggage that needs to be “handled”. We have all the moves needed to get me from place to place down to science -- as long as good intentioned outsiders don’t try to impose help that’s not needed (nor wanted) into the process. We can tell from the moment we arrive whether or not it’s going to go well.
Last time was luggage handlers all the way, both ways. The personnel assigned to carry me up the ramp -- assigned, or course, actually means those who weren’t quick enough to scatter when they saw me roll up -- consisted of the aforementioned 110 lb. women and big burley male baggage handlers (literally). They were horrible listeners (who kept trying to “help” by grabbing me despite our ever louder protests), bad drivers (I kept getting jostled and banged up and down the steps, my feet driven into corners, and my hips rammed into the armrests and seatbacks. Thank goodness we always reserve the seats just two rows from the door -- I don’t think I’d survive the trip if we had to travel any further into the plane in the “care” of the airline personnel!
Sadly, it didn’t improve once we were seated.
Being claustrophobic and, before my catheter, a frequent visitor to the restroom, I’ve always preferred the aisle seat. That preference became a full blown need when my legs stopped working as well as they should. Try wrapping your legs together in duct tape, attaching 20 pounds of weights to your feet, then scooting yourself off of an aisle chair and all the way over to the window seat using your arms only to get an idea of why.
It’s clear the airlines’ policy writers have never done that, for the official rules say that’s exactly what I’m supposed to do. They try to claim it’s for my safety, but who are they kidding -- it’s so I don’t trap the healthy one who have a chance of escaping if the plane gets in trouble. (Ever hear the private briefing crips get when we fly? It explains in no uncertain terms that it’s my job to wait for everyone else to exit, and then it’s my husband’s job to get me out of there. I always respond by telling them that’s it’s just faster -- not to mention more honest -- to just say that I’m screwed if the plane gets in trouble. I finally got one flight attendant -- a great one, BTW -- to admit it on this last trip.)
Last time, we were stuck with by the book attendants on both legs of the trip. So after getting banged around by others getting to the seats, I then had to bang myself around getting over to the window. This time, we were blessed with flight attendants who either totally understood my situation, or felt sorry for me because of the cast, and let me have the aisle. It made a huge difference in my ability to recover from the trip -- I was only down for two days this week, as opposed to the five it took me to recover when we went in December.
Because this is already so long, I won’t even go into the lack of respect they show my $9000 wheelchair. It doesn’t register to them that they’re effectively stowing my legs, and should treat it with the same respect they show me…uh, strike that…they should treat both of us like we were their mothers!
Until the airlines are ready to retrain their personnel and either give crips the free upgrade to first class or redesign planes to make the seats and aisles wider (HAH!), the skies are likely to remain one of the more unfriendly places a crip like me can be. Thank goodness there are a few good ones working for the airlines -- I don’t think I could stand to fly if I knew that there weren’t a few out there who really get it.
A profound thing has happened -- I met another astrocytoma survivor. We seem to have a lot in dommon, so she has requested that I create a summary of what's made me me. It's something I've been meaning to do for a long time now anyway. So WhiteAngel, this is for you. Thanks for being my motivator.
Additional parts will be posted as I complete them.
April 1975 -- Developed a stiff neck. Diagnosed with scoliosis and hemiatrophy (one side of the body being significantly smaller than the other). I was 12 years old and just finishing the sixth grade.
June 1975 -- Started vomiting and losing weight. Neck was so bad I had to sleep sitting up. Put on muscle relaxers and over-the-door traction, and a lift is added to my right shoe to make up a 1.5” difference in the length of my legs.
September 1975 -- Stiff neck getting better, but vomiting and weight loss getting worse. Have lost 25 percent of my body weight at this time.
February 1976 -- After orthopedic surgeons and neurologists fail to find anything, diagnosed with anorexia nervosa and sent to a psychiatrist. Placed on Mellaril, an antipsychotic medication. Not sure why any sane person would prescribe someone who is totally lethargic and unable to move about something that makes them lethargic. But I guess it would make sense to someone who also thinks that a girl who is throwing up against her will and not doing anything to try to lose weight (especially exercise) is anorexic just because she’s 12 and a high achiever who happens to vomit every day.
1975-1976 (Various times) -- Hospitalized for dehydration. Also suffered from drastic vision changes (was almost placed into bifocals as my first pair of glasses) that resolved themselves spontaneously.
February 1977 -- Vomiting has ceased, and have gained a healthy amount of weight. Symptom free -- visits to psychiatrist end and I am taken off Melarill.
May 1977 -- Started to lose strength and control of both hands. By July, friends are calling me “Wrists” because my hands are curled into fists that cannot be opened. Back to sleeping sitting up.
August 1977 -- Taken to a new psychiatrist, who recognizes that the problems are definitely physical is nature, not mental or emotional. Referred to neurologist, who conducts an electromylogram (EMG), a nerve conduction test in which needles are inserted into the muscles of the hands and arms. The muscles are then stimulated electronically to see if the nerve damage is local or based in the spinal cord. Results show my nerve damage is spinal cord based.
October 1977– A myelogram (a precursor to MRIs in which contrast dye is injected into the fluid around the spinal cord to check for blockages) shows a large “mass” in my cervical and thoracic spinal cord. At the time, doctors believe it is a cyst. Surgery, which includes a laminectomy of the affected vertebrae, reveals it is really a malignant tumor called an Astrocytoma Grade II-III, and extends from C5-6 to T4. There are two blood-filled cysts attached to the tumor -- the one at the top is what caused the stiff neck, and the one at the bottom caused me to lose the use of my hands. Doctors succeed in removing 70 percent of the tumor during a 14 hour surgery. I spend less than a day in Intensive Care, and walk out of the hospital five days post-op.
November-December 1977 -- Treated with 6000 rads of radiation. Treatments run Monday through Friday for six weeks. Lost my voice, had a horrible sore throat, and suffered from bad “sunburn” on my throat.
September 1978 -- the tumor is back, as evidenced by weakness in my legs and profuse sweating without exertion. I am forced to leave school at the beginning of my sophomore year while the diagnostics start again. At least this time, there’s no one who is even thinking that a psychiatrist needs to be consulted.
October 1978 – Another myelogram, laminectomy, and excision of the Astrocytoma Grade II-III. This time, the tumor has grown up toward my brain, and now extends from C2 to C6-7. The 15 hour surgery leaves me paralyzed from the neck down for two weeks. I spend nine days in intensive care. My right arm and left leg have no feeling, but my left arm and right leg are so hypersensitive that a teardrop or puff of air feel like butcher knives are being plunged into me. I suffer from a bad bout of fecal impaction because no one is watching my bowel function properly. I suffer from morphine induced hallucinations about neon signs flashing “DEATH” and smothering when thousands of lizards stand on a large plastic sheet and press it against my face and body so I can no longer move or breathe.
After 13 days, I lay in the dark (my mom next to me on her cot in my hospital room) and I talk out loud, telling my body and God that I just can’t make it anymore -- I am too tired to keep fighting. My mother can’t even hold my hand because it hurts to much to be touched on the one side and I can’t feel it on the other, so she instead lightly scratches my head, a move that can calm me and comfort me almost instantly to this day. After begging for help to get me though this, I awake the next day to discover that I have finally regained some movement -- I can extend the middle finger of my right hand. I take great pride in showing off my new trick to as many people as I can!
Six months of PT and OT get me back walking again. I never regained feeling in my right arm and had, but the hypersensitivity in my left arm and right leg, and hypersensitivity to noise, calm down enough so that I can function without taking Quaaludes, valium, and two other downers I needed to be pain free. Am pretty sure Mom and me flushed part of my college education down the toilet when we got rid of all of those drugs. Bet there were some pretty stoned frogs out there in the eco system for a while, though. I return to school FT in April, 1979 and graduate 23rd out of 326 in 1981.
