My Trip to Puerto Rico, By the Numbers

Transfers In and Out of My Wheelchair: 38

Hours Spent in Airports: 7

Hours Spent on Airplanes: 2

Transfers On and Off Planes in an Aisle Chair: 4

Bodily Injuries Sustained While in an Aisle Chair: 3

Gawkers Staring During Use of Aisle Chair : 37

Airline Preboards for Wheelchair Users: 1

Medical Appointments: 2

Hours Spent at Medical Appointments: 3

Hours Spent Traveling to/from Medical Appointments (including Air Travel): 12.5

Cost of Medical Appointment Co-Pays: $178.36

Cost of Travel to/from Medical Appointments: $859.74

Taxis Summoned: 5

Taxis Actually Taken: 2

Hotel Beds Used: 1

Hotel Pillows Used: 11

Urine Collection Bags Used: 3

Embarrassing Incidents Involving Urine Collection Bags: 3

Birthdays Celebrated: 1

Birthday Good Wishes Received: 57

Other Birthday Celebrations Encountered: 2

Please Release Me, Let Me Go

No, this isn’t a tribute to the old Eddy Arnold/Jim Reeves song that I can still sing by heart after hearing my Mom play it over and over when I was growing up.  This is a plea to the invisible python that’s coiled itself around my midsection and is slowly, but persistently, crushing my organs and making my already difficult struggle to breathe all but impossible.

The name of the reptilian constrictor is the MS Hug.  Despite its name, this evil beast doesn’t limit its prey to people with multiple sclerosis -- it can strike anyone with spinal cord damage.  It attacks without warning by constricting the band of muscles near the bottom of the rib cage and hanging on, sometimes for days and even weeks at a time.  It’s strong and relentless, and so far undeterred by the numerous attempts I’ve made to rid myself of its painful presence and prevent it from ever hunting me down again.

I’d already had some breathing problems earlier today -- after laying on my side for an hour to try and get some sleep, my lungs filled with gunk, making me rattle and wheeze with each breath -- so the arrival of this evil python was even less welcome than usual.  The Hug attacked right after I sat up, making it seem as though it had been patiently laying in wait for me, ready to strike as soon as its target was exposed.  In a matter of minutes, it was tightly coiled around my body and giving no indication that it had any intention of releasing me from its death grip any time soon.

My ability to comfort ably breathe isn’t the only casualty of a Hug attack.  By causing my abdominal and back muscles to become rigid, this monster also impedes my ability to move myself around.  It’s not as though I have the greatest range of motion in my torso on my best days -- my spinal column is fused solid from the base of my skull down to the middle of my chest, which means I can’t bend or flex my upper body above my waist at all.  It looks and feels like I’m wearing a neck brace and body cast.  The Hug makes me feel as though there’s an actual snake wrapped around me, its thick body physically impairing me from bending at the waist.  Even someone with full strength in and control f their arms and legs would be hard-pressed to move about if they couldn’t bend or twist their torso, so you can imagine how difficult it becomes for someone like me who has almost no use of her legs and extremely limited strength in her arms.

I’ve tried just about everything I can think of to force this tenacious predator to release me from its grip, but nothing has brought me any relief.   It’s unfazed by heat and cold, immune to drugs, and unaffected by physical intervention.  It’s as strong-willed and single-minded as I am, and only it will determine the moment when it’s had enough and is ready to move on to its next victim.

Until then, I wait, my breathing shallow and my body stiff, waiting for the morning when I wake to find that this insidious beast has finally let me go and returned control of my body and breath to me as quickly and unexpectedly as it stole them away.

Post Script:  I swear I wrote an entry about the MS Hug in the earlier days of this blog.  But even though I can see it clear as day in my head -- there was a picture on the Michelin Man in it near the bottom of the page on the right -- I can’t locate the post here on the blog or anywhere in my original documents.  If anyone else remembers that essay, please leave a comment and let me know that I haven’t totally lost my mind.

Are You Freaking Kidding Me?

I was supposed to go to Puerto Rico today to see my physiatrist and have my Baclofen pump refilled.  The key words in that sentence, of course, are "supposed to".

Our flight from St. Croix was scheduled to leave at 11 am.  Even though our local airport is so tiny that we can park the car, get me in my chair, check-in at the ticket counter, go through customs and security, and sit down at our gate no more than 20 minutes later, the airport staff refuse to issue boarding passes to anyone who doesn't check in at least two hours before their flight.  So we dutifully hauled ourselves out of bed early this morning -- easier for me than the HipHubby because I didn't sleep again last night, got ready (which was riddled with problems and should have tipped us off that this was not going to be the good day we were determined to have), and made it in to the American Airlines check in counter at 9 am.

That's when we overheard the kind-looking older woman behind the counter tell the people who were attempting to check in that our flight was cancelled. The news hit me with all the force of a Category 5 hurricane. 

My first thought was, "How many days before my pump runs out of medication?"  Fortunately, my alarm date isn't until next week, so I wasn't going to be in any physical danger by not getting my refill today.  We considered the option of trying to get on the 1p flight out and the 9pm flight home if the doctor was able to stay late today to see me, but quickly decided that wasn't an option -- I'd never survive trying to extend my travel day from 12 hours to 17 hours would do me in.  So I got right on the phone with the scheduler at my doctor's office, told her what had happened, and asked her when he could see  me.  Being the wonderful (and talented) many he is, my doctor agreed to make a special trip into his office on Saturday to see me, so all we needed to do was get American Airlines to rebook our flights.

The kind, older woman at the ticket counter was surrounded by frantic travelers who needed to make connecting flights today, so we decided we'd call the AA reservations number and see if we could rebook that way.   After a brief scramble to find the number, I rang them up and to my great surprise was talking with a real person in mere minutes.  I explained that our flight was cancelled and asked her to put on on the same flights on Saturday.

Her reply: "What credit card will you be using for the $100 rebooking fee?"

"EXCUSE ME?  Perhaps you didn't hear me -- *you* canceled our flight, making it impossible to see my doctor today.  The doctor can see us on Saturday"

"Well we can only rebook you for free if you travel today.  Other the standard re-booking fee of $100 applies."

"Buy my doctor can't see us today, he can only see us on Saturday.  None of this is our fault, so why should we be penalized $100?"

"Ma'am, that's the policy.  If you extend your stay, you cannot be rebooked for free unless you travel the same day."

"But we're not extending our stay ANYWHERE except home!  We live here -- we're trying to go to Puerto Rico to see my doctor for a scheduled medical procedure and are enable to go because of you!  Why should we be charged for your screw-up?"

"Hold please while I get my supervisor on the line."

Are you freakin' kidding me?

Fortunately we noticed the older lady had rebook all of the people traveling today and was ready and able to help us.  We told her the story, and she immediately redeemed her entire company.  Not only did she reschedule us for the same flights on Saturday, she issued a $100 inconvenience voucher to each of us.  I was so grateful for her kindness after the horrible morning and lack of sleep that I cried.  We asked her for her name so we could call AA and tell them what an outstanding employee she is, but she refused to tell us, saying that what she did was a no-brainer and we should just go home and get some rest.

$100 charge for changing my flight after you canceled the original flight my ass.  The people working the AA Reservations phone lines should be ashamed of themselves.

Why Is Getting Medical Care Down Here Such a Battle?

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.

I’m Healed!

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!

Leaving Paradise

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!

MRI Interrupted

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!

Broken Legs and Wounded Wings

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.

How I Became the HIpCrip (Part 1) -- The Early Years

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.

I Didn’t Know

I didn’t know, when I rolled into the neurosurgeon’s office four years ago, that I would be faced with such a hard decision: have a dangerous surgery that was almost guaranteed to go wrong or face a slow decline into quadriplegia.

I didn’t know how good it would feel to tell the surgeon “No.” No laser knife, no bovine heart membrane or titanium plates and screws. No more fear of spinal fluid leaks or meningitis. No wondering, when I wake up after surgery, still groggy from the anesthesia, lips dry and cracked, if I can still move my arms and legs. And no long, painful battle with physical and occupational therapy to regain as much as I can of what was lost.

I didn’t know how easy it would be to make that decision. No agonizing, no pressure to do what the “experts” wanted. And, for quite a while after, no regrets.

I didn’t know how much hope I pinned on that decision. Hope that I really wouldn’t get much worse. Hope that if I did, it would be a long time in coming. And hope that when it happened, the decline would be gradual and painless.

I didn’t know how many times that hope would be challenged, or crushed altogether, as new symptoms took hold, pain levels increased, and more function -- and the ability to be truly independent -- was lost.

I didn’t know that the most difficult part of permanently losing control of my bladder would be finding a urologist to help me make the transition to relying on an in-dwelling catheter. Of the two on my island, one doctor never returned any my calls begging for help. The other didn’t like having a woman question him, so he spoke to me through my husband, and then tried to charge me over $600 for an office visit and catheter change.

I didn’t know that I would hate to be hugged. The crushing grip of the MS Hug makes the muscles around my rib cage, abdomen, and back rigid; restricts my breathing and movement; and brings unrelenting pain. I hate this symptom more than all of my other problems combined.

I didn’t know how dark my world would get. On the days when multiple symptoms rage, unrelenting, untouched by rest or ice packs or pain medications or massage or, the most powerful therapy of all, cat petting, the tears flow hot and hard. The will to see another day, normally so very strong, falters, and the craving for relief -- a few hours or forever -- trumps every other want and need. The desperate bargaining -- with god, the universe, my own body -- begins: just take away one of the problems, just give me a break, just let me rest.

I didn’t know that my self-esteem would decline along with my ability to manage my own body. Being forced to leave my career behind was, without a doubt, the single biggest blow to my identity and self-esteem that I’ve ever faced. Forget being overweight, having large scars everywhere, and being a no-necked hunchback -- those issues are nothing compared to sense of loss and shame I feel for no longer working. I miss having a job at which I’m really, really good, and I miss the sense of accomplishment it brought into my life.

I didn’t know how empty some days would be. Too tired to move, in too much pain to focus -- noting but me, sitting in my bed, watching helplessly as the hours and days of my life tick away, waiting to seize and make the most of those moments in which I truly feel good.

I didn’t know how all consuming monitoring a failing body would be. Every day brings new changes, which spark new questions. It is always on my mind -- it dominates my conversations with others. Why is the edema growing worse? Is my abdomen rigid because of muscle spasms or is there something else going on? How can my skin be getting drier when I drink more than a gallon of water every day and live in such a humid environment? And of all of the potential problems that have popped up, which needs to be tackled first?

I didn’t know, when I made the decision to let nature take its course instead of having surgery, that the slow decline in quadriplegia would be as painful as it is. I imagined it to be a slow loss of sensation and movement. Instead, this journey has been filled with pain, seized up muscles, wildly fluctuating body temperatures, and tremors.

I didn’t know it would be so damn hard.

When the Avoidance Bill Comes Due

One of the skills at which I’ve learned to excel is justifying why I don’t need to deal with certain health needs I have. Actually, skill makes it sound so cut and dry -- if I may be immodest for a moment, I’ve elevated this type of avoidance to a highly refined art form. It took years of practice, but I’m now able to come up with a pretty decent list of reasons as to why I don’t need to do something I don’t want to do. Okay, so they’re not always the most solid reasons, but they work well enough to keep me from feeling guilty, and that’s all I need from them.

Problem is, because I’ve now succeeded in delaying certain needs so long that they can’t be put off any more, they’re all coming due at the same time. And it’s starting to freak me out.

At the top of the list is getting MRIs done to track the status of my spinal cord atrophy and tethering, as well as the status of the syrinx in my brainstem. Until recently, I’ve been diligent about having these scans done once every two years, a schedule set for me by my favorite neurosurgeon back in 1985 when MRIs first came onto the market.

But after I decided to refuse any further surgery and let my conditions progress naturally (even if it results in quadriplegia), I just didn’t see the point in going through the stress and pain MRIs cause me. After all, why should I shell out hundreds of dollars for a co-pay for diagnostic tests that won’t serve any purpose except to satisfy the curiosity of my doctors? And of course there’s the reason that sounds the most frivolous but is the most real for me: This will be the first time getting the scans done at our local hospital, and I’m scared of the unknowns -- especially how the patient the staff will be with someone whose body is so uncooperative.

Now, however, my rationale isn’t holding up to scrutiny as well as it once did. My doctors are growing more insistent about seeing if there is some objective evidence of the changes I’m experiencing, especially my ever increasing levels of pain and spasticity. And in all honest, I’ve got my own morbid curiosity about what’s going on, and if it appears that I am objectively growing worse.

So I’ve succumbed, and have a request into my neurologist for orders for the MRIs I need. I’m not sure how busy the machine is down here, but with any luck, I will be able to get them done this month.

On a different front, it seems my body may have made the decision that it’s time to find a pain specialist for me.

I’ve needed to find a pain doctor for ages. My current pain med regimen makes no sense at all -- it relies too heavily on short-acting pain meds. This leaves me playing catch up with pain when the drugs wear off every three hours, and necessitates me taking as many as 31 pain pills a day. Even worse, it leaves me nothing for break though pain because I’m already using the maximum doses of the short-acting drugs as a standard part of keeping my pain levels tolerable. If anyone had really taken the time to do a full review of my regimen, it would think they would have upped the dosage for the long-acting meds and leave the shorter acting drugs for the break though pain, as they were intended.

After having an abnormal liver function test about ten years ago, I became acutely aware of the potential for damage to my liver and kidneys taking so many meds could cause. Since that time, I’ve made certain that I know the maximum amount of each drug that can be taken before damage is caused, and which organs are affected by which drugs. More importantly, I am fanatical about making sure that I never exceed those amounts, even if I am having pain that goes off the scale. I’ve already got more than enough parts of my body that are giving out on me -- the last thing I need is to end up needing a kidney or liver transplant. I’m terrified by the thought of it.

Lat week, my worst fears appeared to be realized. I’d submitted a specimen for a urinalysis and culture after developing symptoms of another UTI. The results were good news, bad news: no infection (a triumph!) but there was an abnormally high amount of protein in the urine, which is a sign of kidney disease. Oh shit. Of course, one test should not a panic cause -- I’ve been retested and will get the results on Monday.

Regardless of the results, this is the red flag that is finally going to get me off my butt about getting to a pain specialist to see about ditching the oral meds in favor of a patch. I know several people who use the patches with great success, so I’m more than eager to try them. Easing the burden on my organs is the main goal, but I’d be lying if I said that I wasn’t also eager to ditch the handful of pill and three hour dosage schedule in exchange for a patch that can last for up to 72 hours.

So on Monday, when I visit my PCP, Dr. G, to get the results of the latest tests, I’ll be asking him if he’ll be the referring doctor for the pain specialist. I’m pretty certain he’ll have no problem with it. With any luck, he’ll even know who I should see.

Imagine that -- a PCP who actually coordinates care between specialists. If that happens, I’m hoping he’ll also refer me to a cardiologist because it will probably cause me to have a heart attack.

Stay tuned.

Drama Queens - and Kings - Need Not Apply

With as many medical problems as I have, drama is never in short supply. I get so much of it, in fact, that I no longer watch movies that are dramas -- entertainment is supposed to be escapism, and the last thing I find entertaining is dedicating two hours of my life to watching fictional problems.

If only ridding myself of exposure to excess -- and even unnecessary -- drama in real life were as easy as turning the channel or popping out a DVD.

Lately I’ve been going through one of the phases in which my tolerance for other people’s drama is at a low point. Don’t get me wrong -- I’ve not become a jerk when friends or family face real problems. There is, and always will be, plenty of sincere compassion to share with those who face troubling times.

What’s pushed my tolerance point to breaking is the artificial drama generated by drama kings and queens. The royalty of misery come in two forms: people reacting way out of proportion with the size of the problem they face, and their more sinister (and trying) cousins -- people who work themselves into frenzies over problems that they don’t have. For some reason, there’s been no shortage of either around me lately.

The over-reactors are easiest to find in people who are sick -- especially men. Give some people the slightest ailment and they act as though they’re in the final stages of plague. Some people I’ve shared a residence with will be quiet when they’re sick -- until they know someone is listening. When that happens, they start in with enough moans and whimpers and grunts to qualify as a messed up opera, and the end up with a dent in their lips because the thermometer takes up semi-permanent residence in their mouth.

But the worst of this crowd are the drama vomiters. This is also a guy thing. Every man I have ever known, starting with my father and ending with my husband, can only throw up if he gags, retches, coughs, groans, and spits at full volume. This is, by far, the fastest way to turn off any genuine sympathy I have for how bad you feel.

Fortunately, the drama sickees have been in short supply lately. Instead, my cup runneth over with the dramatist wannabes -- those folks for whom a crisis and pity are as essential to their . If they have a progressive disease, they start freaking out over the absolute worse happening to them on day one. If their current level of illness isn’t dire enough to satisfy them, they go shopping around for a doctor who will give them the serious diagnosis they crave, and get angrier and angrier when they are old that their condition just isn’t that severe.

I just don’t get it. And you know what? I don’t want to.

Real problems, those I understand. So unless you have something real going on, keep your drama to yourself, please. And if you’re really eager for some, feel free to take some of mine -- I’ve got more than enough to go around.

Half Full or Half Empty? I’m Just Grateful I’ve Got a Glass

I’m slipping into one of those periods when I have absolutely no tolerance for people who, from where I sit, are pretty darn well off yet seem obsessed with focusing on their “burdens.”

The need to take medications on a schedule is a good example. There’s a TV commercial for an osteoporosis medication that only needs to be taken once a month that portrays the alternative treatment -- having to take one pill a week -- as the most complicated, inconvenient task ever. And I recently saw a woman who had been given a new life in the form of a kidney transplant talk about how horrible it was to need to take her anti-rejection medication twice a day. Are you kidding me? I need to take anywhere between 35 and 60 pills every day just to function, some of which are taken every three hours. And I’m happy to do it -- these drugs enable me to function relatively free from pain, spasms, depression and infection. What’s to complain about?

Body image is another hot button topic. I’ve had it up to here with people with the most mild body imperfections whining about how devastating it is for them. The latest was someone with scoliosis (a side-to-side curve of the spine) talking about feeling terribly self-conscious in a bathing suit because she was sure everyone was staring. I have scoliosis, plus a 90 degree front to back spinal curve that makes me look as though I have no neck and thrusts my head forward, scars all over my body, and a Quasimodo-like hump in my left shoulder caused by a muscle graft. If I worried about people staring at me, I’d never get out of bed. I have to wonder how this woman with scoliosis would ever survive if something truly disfiguring ever happened to her.

The one that really gets under my skin is pain levels. My neurological problems have progressed so much that I now need pretty high levels of several narcotic pain medications to manage my pain. Leaving the house for errands or any size, from getting my hair cut to traveling to my doctor in Puerto Rico, come with a price tag -- my pain levels flare for hours or days, keeping me in bed until they calm down enough for me to get back in my wheelchair and start over again.

I’m not angry about this -- everything in life is about trade-offs, and that’s just the trade-off I need to make. What does make me angry is listening to people with a much milder neuro condition complain about how their pain levels go way up after playing softball with their kids, or how brave they are for dealing with their pain without prescription drugs. How can they be so blind to what incredible blessings those abilities are? Yet instead of hearing how thankful they are for still having the ability to run around with kids, or to get by with ibuprofen, conversations with them are riddled with comments about how hard their lives are.

I just don’t get it.

I have a new friend, who has it pretty bad off. She’s my age, and like me uses a wheelchair because of muscle tremors and weakness. But unlike me, her home is not fully accessible -- she must rely on a portable commode chair because she can’t get her wheelchair into her bathroom -- and she lives in severe, chronic pain because no pain medications work for her. But despite leading a life in which she’s lost her independence and her privacy, I’ve never heard her complain. When you talk with her, it’s clear that she’s so far beyond the debates over whether her glass is half full or half empty -- everything she does, every word she says makes it clear that she’s so incredibly grateful to still have a glass.

That’s exactly how I feel about my life. It doesn’t matter most days whether it’s good or bad -- it’s still mine, and I’m damn grateful to be able to wake up every day, even if those days are filled with pain.

I really want to be more tolerant, and to be able to embrace emotionally what I know logically -- that these problems are very real to these people, and that for them, these situations are the worst they have known. But there are days when it’s so very hard not to scream, “Do you realize how good you have it, not just compared to me but to so many people in the world?” I pray that these folks never have to look back on their current lives as the good old days, but I sure wish they’d be able to focus less on what they’ve lost and a lot more on everything they’ve got.

The Days the Earth Stood Still

Everyone has at least one moment in their life that they will remember with absolute clarity -- that point in which time stands still, and when the rest of the world seems to disappear, leaving only you. The most prominent of mine are the moments in which I was told that the doctors had finally found out what was causing all of my health problems, and what needed to be done about it.

The first time I experienced this was I the early afternoon on October 17, 1977. I was 14 years old. The last two years of my life had been a blur of unexplained symptoms (vomiting, weight loss, vision problems, painful stiff neck, dizziness, loss of consciousness, and both hands curled into fists due to profound muscle weakness and loss of control) and visits to more specialists than I can remember -- neurologists and neurosurgeons, orthopedic surgeons, rheumatologists, psychiatrists. Two years of tests that failed to explain anything. And two years of fighting to convince just one doctor that the problem causing me and my family so much misery was physical in nature.

At this moment, however, I had no memory of any of that. All I knew was that I was flat on my back on a hospital gurney, which had been placed into a small waiting room painted that particular shade of institutional green found exclusively in. I was in such severe pain that I was fading in and out of consciousness -- my cheeks were flushed and still wet from my tears. I had just been wheeled out of a radiology suite at Children’s Hospital of Michigan, where my neurosurgeons had performed a myelogram so they could examine my spinal cord for abnormalities.

After being left alone for a few moments, I heard a jumble of voices approaching. There were very few people I wanted to deal with at that point, so I shut my eyes tightly in self-defense and pretended to sleep until I could figure out who was approaching and what they wanted from me. As the group took their places around my gurney, I recognized that my mom and dad had taken up position on my left while my two neurosurgeons stood to my right. They were already deep in conversation as I felt my mothers soft hand reach out and rest across my forehead, a touch she had used to comfort me for as long as I can remember.

Within moments after gathering around me, the doctors announced their findings. “There is a large mass compressing her spinal cord. It’s quite long, and almost completely blocked the flow of the contrast material. We believe this is a cyst, and immediate surgery to drain it is warranted. The surgery is scheduled for Wednesday morning sat 7 am.” My mom choked back her tears and my father let out a deep, sad sigh before saying, “Thank you, doctors” in that tone of voice I now recognize as his logic voice, the part of his brain that takes over whenever his emotions threaten to overwhelm him. Those we the last sounds I heard before I let the shock from what I had just heard and the pain from what I had experienced carry me of into unconsciousness.

I remember very little of the time between hearing I needed surgery and being prepped for the OR except that I spent it flat on my back. (A significant amount of cerebral spinal fluid was withdrawn during myelograms performed at that time, so it was necessary to lie flat for 16-34 hours after the procedure while the CSF amounts returned to normal levels or risk debilitating headaches and other problems).

The morning of my first operation ever, my parent’s minister came to sit with us in the early morning hours before I was taken to the OR. I recall the relative quiet of the hospital at that early hour. I also remember how my mother, father, older brother and I were all equally nervous, sleepy, and upbeat, each doing his/her best to put on a brave face for the others.

Fast forward 24 hours. I was in the operating room for just over 14 hours, and awoke in the neuro ICU unit. My mother was at my bed side, just as she would be for countless days following the surgeries to come in the years ahead. After helping me take inventory -- this was the first of many times I would ask if my toes were moving and break into joyful tears when I learned that they were -- the tone in the room, and the look in my mother’s eyes, switched in a heartbeat from relief to apprehension and sorrow as she prepared for one of the most difficult and disturbing conversations any parent can have with their child.

Over the next hour, my mom broke the news to me that my surgeons had been wrong -- the mass they saw on the myelogram wasn’t just a cyst, it was a tumor called an astrocytoma. The doctors believe it could have been present from birth, growing slowly enough and remaining small enough to avoid causing any problems with or damage to the spinal cord until the tumor bled from the top. This bleed formed a cyst, which is what caused the stiff neck and vomiting/weight loss/vision problems -- as the bleeding subsided and the pressure from the blood-filled cyst eased, the symptoms it caused all but disappeared. A year after the upper cyst shrunk down, the lower portion of the tumor bled -- the cyst that developed caused me to lose the lose of my hands until it, too, stopped bleeding.

The news that it was malignant was saved until after the story of how this invader had ruled the last two years of my life was complete. Only then did my mother tell me that the tumor was cancerous, and that my doctors weren’t able to remove it all because it was so intertwined with the nerves of the cord.

And that was the moment that the earth stood still -- for the first time. I had to go through hearing the news that this cancer was living inside me two more times. And each time it was the same: the earth and time stood still, all sound vanished, there was nothing except me, the tumor, and the unknown.

Trying to Make Me Normal is Going to Kill Me

In the two weeks since I last saw Dr. G, I’ve come to a frightening conclusion: his determination to treat me as though I’m one of his normal patients is going to be the death of me.

Since my first visit with Dr. G, it’s become increasingly clear that he’s a pretty conservative practitioner who believes that the less we mess with the body, the better. He’s given me reason to believe that he feels drugs cause more problems than they fix, and should therefore only be used as a last resort. This, of course, means that the copious variety of drugs I take every day drives him crazy -- as evidenced when a review my current medications caused him to blurt out, “I have no idea why you’re alive.“

These are not encouraging words to hear from the person you’ve charged with your health and well-being.

In addition to his desire to solve problems without the use of prescription medications, Dr. G also exhibits little patience for the unconventional. I discovered this when we first discussed the cellulitis that had popped up on my right thumb -- he couldn’t keep from rolling his eyes and letting out a derisive little snort when I told him how we’d taken care of other outbreaks I’d had in the past year.

Initially, I was fine with giving his approach a try. I’m usually all for conservative when it comes to my health -- with as many odd conditions as I have to deal with and the number of drugs I rely upon, trial and a lot of error taught me that introducing new factors into the equation can throw my body into a state of total chaos. Besides, I desperately wanted to be back in the care of a doctor in whom I could trust, who understood that I knew my body better than anyone else and treated me as an equal partner.

That’s why I agreed to give his recommendations a try. First, he told me to keep the cellulitis protected by a clean dressing, and to stop treating it with anything, including Neosporin or the acetic acid solution we’d used with great success in the past. Second, he wanted to try to put an end to my severe problems with retaining water by drastically reducing my fluid intake and cutting out the diuretics. And finally, he prescribed a ten day course of Cipro, a broad spectrum antibiotic, in the hopes of it knocking out both my urinary tract infection and the gunk that had invaded my lungs with one shot.

Even though these all sound reasonable in theory, they have all proved to be disastrous in practice.

I stuck with Dr. G’s directive to leave the cellulitis alone, doing nothing more than changing the dressing so it stayed clean and dry. Two days later the infection had grown much, much worse -- the original blister area had blistered again, and the entire region was deep red and angry looking. I knew from past experience that I stood a good chance of ending up on IV antibiotics, so I started to treat the area with the acetic acid solution. There was noticeable improvement in less than a day, and it was almost completely healed in less than a week. Unconventional -1, Dr. G -0.

Next, reducing fluid intake. This was a hard one for me -- I’ve trained myself to drink massive quantities of water each day in the hopes of flushing bacteria out of my urinary tract before they can take hold. (Ever since having a dangerous brush with low potassium due to water toxicity, I am extremely careful to make sure I’m eating bananas and other potassium rich foods to keep that from happening again.) This high volume intake seemed to be working pretty well -- I hadn’t had an infection in seven months, a record for me. But per Dr. G’s request, I cut way back right after I finished taking the Cipro for my last UTI -- I went from drinking a dozen 16 oz bottles of water each day plus some cranberry juice down to drinking only four bottles.

What a mistake. I developed a new infection in less than a week. And now that I‘ve started to increase my intake again, I’m having horrible problems with retaining water -- my legs, ankles and feet are horribly swollen, and there’s enough abdominal bloating to restrict my breathing. So I’ve been forced to do another Dr. G no-no: take Lasix to get rid of the retained water. It’s astounding -- within four hours of taking the diuretic I’ve been putting out almost four liters of urine. You *know* that feels damn good. Unconventional - 2, Dr. G - 0.

And then there’s the infections. If I were just trying to knock out a UTI, a 10 day course of Cipro would have worked fine. But I have pockets in my lungs from bronchiectasis, and it’s all too common for bacteria and other gunk to lodge itself down in these pockets and hang on. My former pulmonologist not only prescribed at least three weeks worth of antibiotics for me when I developed infections, he also gave me a prescription to keep on hand so I could start taking the meds as soon as I saw the telltale signs of a lung infection.

Taking 10 days worth of antibiotics just seems to make things worse, which is what’s going on right now. I wasn’t coughing at all or bringing up any junk before taking the Cipro, but started doing so about five days into the antibiotics. It’s gotten progressively worse. I understand that the over prescribing of antibiotics is problematic. But this doesn’t seem to be over prescribing, it seems to me to be under prescribing -- taking too little of the medication to kill off the bacteria which instead ends up helping the little buggers become resistant to the antibiotics. And that’s bad for me now -- having a death rattle in my lungs that’s adding to the breathing problems from my MS hug and the bloating is just plain miserable -- and it will certainly be bad later if these bacteria become immune to oral antibiotics.

Unconventional - 3, Dr. G - 0. Game, set, match.

Now comes the hard part - confronting Dr. G with the reality that everything he knows doesn’t apply to me and may, in fact, be dangerous. I dread it. I have no idea how I will find the confidence to stand my ground, or what I will do if Dr. G doesn’t agree to let me continue with what I know works. I can’t see sticking with him if all I’m going to end up doing is ignoring his advice and getting worse because of incomplete treatments. But this is a small island -- and the medical community is small. I’ve already been told by three doctors on island that they won’t treat me, and I’m not sure if I’ll be able to find someone else. Nor am I sure I could tolerate being rejected again -- it sounds stupid, but it really hurts to be told that you are too abnormal to be someone’s patient.

It’s a real paradox, isn’t it? I’m too abnormal for some doctors to treat me, and the ones that will try to treat me like I’m normal!

My next appointment with Dr. G is in two weeks, but I’ll be hearing from him before then when the results of the urine culture I submitted today come back. Please pray for me to have the strength to stand up for what I need, and to stand my ground until I get it. Hopefully he’ll understand that my 44 years in this body makes me much more of an expert on what it needs to function well than his 44 days of being my doctor.

_______________________________________________________

Update:

Having little faith that the lab would actually send my results to Dr. G (the orders were written by my former physician), on Sunday I decided to send Dr. G a fax to let him know the culture was in process and to expect the results.

As I wrote this fax, I realized it provided me with an excellent opportunity to broach the subject of an extended dose of antibiotics that would take care of my lungs and the latest UTI. So I made my appeal, borrowing liberally from Joderson's well-crafted language about the role of doctors, and sent it off. Some may think of this as the chicken's approach -- I let the fax do the work so I could avoid dealing with this in person. I, however, prefer to think of it as my way of stepping oof the cliff -- now that this was out there, I'd have to talk with him about it.

Dr. G called me early Monday afternoon. He told me he had read my rather lengthy note -- and thanked me for it -- then asked me what pharmacy I used so he could phone in a 21 day course of Cipro. He told me that he didn't even have the culture results in hand yet, but it was important to him to get my lungs (and me) feeling better -- he would deal with the culture later if the results showed the infection wouldn't respond to Cipro.

Throughout the call, Dr. G was warm and funny, and made it clear that despite my maverick ways, he was in this relationship -- as my partner -- for the long haul.

I couldn't stop grinning for hours.

Home Pharmacology at Its Best…and Worst

The HipCrip Home Pharmacy has been busy these last few days.

Despite a five hour island-wide power failure, I was able to make my follow-up appointment with Dr. G on Wednesday afternoon. There was lots of good news: my post-Cipro culture showed that my UTI had totally cleared up, Dr. G didn’t lecture me about defying his orders by using the acetic acid solution to clear up the cellulitis on my thumb, and I’d lost three pounds since my visit two weeks prior. (The latter was a totally unexpected bonus.)

The lungs, however, remain a mystery. All of my blood work looked fine -- no raging infections present, and no problems with low potassium or other blood salts. (My last trip to the ER ended with me spending the night taking potassium supplements via IV and mouth after a combination of lots of water going in and even more coming out -- thanks to the diuretic Lasix -- caused my potassium to drop to a dangerous level.)

Unfortunately, Dr. G had little to offer me by way of relief for my breathing problems. He couldn’t explain why I was suffering from such bad edema, which I told him was compounding the muscle tension constricting my lungs. (I’ve since learned that this “Michelin Man” problem is known as the “MS (Multiple Sclerosis) Hug” and is quite common among people with spinal cord lesions.) So I took matters into my own hands by taking a full dose of Lasix for the water retention and a tiny little bit of oral baclofen for the muscle constriction.

The results have been good, even if the path to get here was a bit rough.

The Lasix had an immediate effect, drawing out three liters of fluid in about eight hours. (With that much fluid saturating my body, I’m hoping I actually lost more than the three pounds that were reflected by Dr. G’s scale.) To avoid another ER potassium crisis, I’m on the two banana a day plan. It’s now been almost 48 hours since I dosed myself, and the water weight has stayed off. Do I need to tell you that I am strictly limiting fluid intake (on Dr. G’s instructions) so it doesn’t come back?

Although I haven’t been prescribed oral baclofen in years, I keep some on hand. Adding a tiny bit of oral medication to the dose has been known to help out in the past when my legs were, as my husband describes them, unbendable steel bars. Now when I say tiny bit, I’m not kidding -- anything more than a few grains from a 20 mg tablet and I’m so groggy that I sleep for the better part of a day.

Which is exactly what happened yesterday.

It seems that my visual guesstimate on the amount of baclofen I carved off of the tablets was a bit off. Instead of just getting the tension in my legs and abdomen to relax, I ended up with a bit of an overdose, which slowed my breathing and made me so stoned I was unable to do anything except sleep for over 22 hours.

It’s more than a little scary to me when this happens, because I suffered a life-threatening overdose when I had my pump replaced last year. At that time, the doctors found and repaired a small leak in the tubing that connects the pump in my abdomen to the catheter implanted in my lower thoracic spine, but neglected to adjust the amount of medication I was receiving. It seems that quite a bit of the drug was leaking out of this hole in the tubing, because I lapsed into a coma as soon as the full dose made it into my cerebral spinal fluid. It was sheer luck that one of the premier experts on Intrathecal Baclofen Therapy practiced at a different facility within the same medical center -- he was called right away and his immediate response saved me. Believe you me that if I try this again, it will be with the tiniest fleck of medication. I’d much rather get almost no relief than go through that overdose situation again.

Today, I’m pleased to report that I’m mostly back to being my normal self in every way. My brain is free of the baclofen fog, my abdominal and leg muscles are more relaxed than they have been in weeks, and all of the swelling from the extra water weight I’d been carrying has gone. And I’m drawing regular deep breaths without hearing that annoying little whistle-wheeze when I exhale.

I go to get my pump refilled on Monday, at which time I’ll have my doctor bump up my dosage by 10-15 percent in the hope that will be enough prevent my legs from becoming rigid and my lungs from being held hostage by the dreaded MS Hug. But there’s plenty of time to think about that, and all of the stress air travel brings on my body and mind, later. Right now, it’s time to enjoy feeling good for a change.

Take a Deep Breath (If You Can)

Tomorrow is my follow-up appointment with Dr. G to check on how well my various injuries and maladies are doing. On the plus side, the cellulitis on my thumb and my latest urinary tract infection seem to be completely healed. But despite taking my 10 day course of Cipro, I’m not breathing any better than I was weeks ago. Normally, that wouldn’t concern me -- since developing bronchiectasis, I sometimes need to be on antibiotics for up to four weeks to get a lung infection to clear up enough to return my breathing to status quo.

But I don’t think a lung infection is the only thing going on anymore. Last week, my DH noticed a new factor in that’s definitely contributing to my perpetual shortness of breath, and I’m worried that solving my problem just got a whole lot more complicated than just taking some additional Cipro.

A little bit of history is necessary to understand where I’m at right now.

When I had my Baclofen pump replaced last year, I discovered that my left leg will act up when some part of my body where I have limited or no feeling at all is uncomfortable. The acting up can take many forms, from twitching rhythmically to one or more muscles tensing up and remaining rigid in spite of our best efforts to relieve the spasms. This has turned out to be a very useful warning device, as it lets me know that trouble is brewing in one of the many areas on my body where I can’t feel sensations like pain, temperature changes and such. (The local nerves, which are healthy, still detect the stimulus, but the signals can’t get to my brain to be interpreted because my spinal cord is so badly damaged.)

When my leg starts acting up out of the blue, I know that something is amiss that needs my immediate attention. The problem could be obvious and easy to remedy (discovering that there’s a large dent in the back of my thigh because I’ve accidentally been sitting on the cap to my bottled water) or more subtle and complicated (internal infections).

Last month, right about the time I first noticed my lung problems, my left leg started developing knots in the calf and thigh muscles that couldn‘t be relieved (think 24/7 Charlie horses above and below the knee). At first, this didn’t concern me -- I thought it was probably being triggered by any or all of the infections that I was battling (lung, urinary tract, cellulitis on my hand). I did my best to cope with the discomfort and looked forward to it going away once I got some antibiotics into my system.

But the antibiotics didn‘t help. And now there‘s new problems that have surfaced, neurological symptoms that may mean that my degenerative spinal cord damage has gotten worse. If that’s really the case, then it may be that no amount of antibiotics will allow me to breathe easy again.

The first change I noticed started last week, after a nap. When I woke up, there was increased numbness in my right arm and left leg (both already suffer from limited sensation related to my spinal cord damage). At first I thought it was just a circulatory problem from sleeping with these limbs extended in very awkward positions. But when it didn’t go away after 48 hours, I reluctantly acknowledged that something bigger may be going on.

The next day, I was feeling particularly constricted around my midsection. I can best describe it as a cross between wearing a Michelin Man costume that‘s a size too small (e.g. feeling like there’s a tight-fitting inner tube or two around my waist) and bending over a 2” x 4” and having it press into your gut. This has been happening a lot in the last month -- I had simply attributed it to bloating from water weight or excess air in my digestive track (an annoying and embarrassing side effect of the problems I have with swallowing). When I commented to the Hip Hubby about this, he gave my belly a poke right below my ribs.

The muscles in my abdomen were rock hard. No wonder it’s been such a struggle to draw a decent breath!

Even though this was a really disturbing discovery (made even more so because it‘s happening at the same time as the other new problems in my arms and legs), it was a relief to figure out why I had been having so many problems that couldn’t be resolved using my usual tactics (diuretics to relieve bloating, etc.)

I’m praying hard that all of these problems are just temporary glitches in my wiring, and that one morning soon I will wake up to discover that my leg hurts less and moves a bit more easily, that my hands aren’t tingling, and that I no longer feel like I’m wearing a metal cummerbund around my waist. But I’m scared -- really scared -- that they’re not an anomaly but instead represent the next level of “normal” as I lose even more spinal cord nerves to the irreversible damage caused by tethering, syringomyelia, and just plain old aging.

I will be mentioning this to Dr. G tomorrow, although I’m not sure what he can do to help me relieve the symptoms. (Who knows -- he has surprised me before.) And if there’s no change by next week, when I go to Puerto Rico for my next Baclofen pump refill, I’ll ask that doctor to up my daily dose in the hopes that it will at least relieve the tension in my legs, and at best get my abdominals to loosen up too. The option of last hope for help is to visit the island neurologist, and see what he may hold in his bag of tricks to make my life more comfortable.

If I may toot my own horn, I’m doing amazingly well in accepting the possibility that there’s a good chance these changes may be permanent. Who knows? Maybe I’ve finally taken to heart all of the advice I’ve given about panic/anxiety/worry/stress not doing a thing except making you feel worse than you already do. It may be small, but at least it means that I learned to do something good as a result of yet another neurological setback: I learned how to take a deep breath.

Body Behaving Badly - The Update

(My thanks to a new online friend, razzle51, for poking me about getting this updated.)

After reaching the end of my rope with being unable to breathe or sleep, I did go see the doctor. Technically, I saw two doctors. The first was a doctor recommended by my former primary care doctor, who retired in September. This appointment was short and sweet, as it turns out that my former doctor never bothered to learn that his chosen successor didn’t do general medicine (she focused her practice on women’s health only).

Even though Doctor #1 wasn’t going to accept me as a patient, she was exceptionally gracious and helpful. After learning that I was there because I was having breathing problems, she gave me a brief . After hearing my lungs crackle and pop and seeing the edema in my legs and arms, this Good Doctor of the West (End of the Island, that is) immediately went about making personal calls to get me an appointment that day with a colleague who could become my new primary care provider. In a textbook example of it’s not what you know, it’s who you know, she managed to get me an appointment later that afternoon with Dr. G, and internist who is also the head of internal medicine at the local hospital. Conveniently, Dr. G had taken care of me when I was hospitalized earlier this year, and already knew that I was a strong-willed woman with a most unique collection of medical conditions.

But the miracles from the Good Doctor from the West did not stop with securing that appointment for me. To make sure that Dr. G would have everything he needed to start treating me at hand, the Good Doctor of the West sent me directly to the Island Imaging Center to have a chest x-ray in time to hand deliver the radiologist’s report to Dr. G. And in a final act of pure goodness, she told us there was no charge. Rather makes me wish she was going to be one of my doctors, you know?

Since moving to our little island, we had become used to…shall we say “laid back” service from doctors. Dr. Former didn’t employ a nurse, and in the three years I saw him he never took my vital signs unless I had brought a specific complaint to his attention. Even so, he only took my blood pressure once (when I told him my last few readings had been high), my temperature twice, and never checked pulse or respiration rates, or asked about my weight. (Since I cannot stand, it’s virtually impossible for any doctor to weigh me, so most settle for asking for my best guess.)

It was apparent that Dr. G never got the memo about island docs being laid back. We were met by Dr. G’s nurse who, after learning I couldn’t stand, lead me to a wheelchair scale! After asking me how much my chair weighed, she directed me onto a rubber mat, clicked a button, and collected a printout before leading me to the exam room. My surprise at finding this very rare piece of equipment in my new doctor’s office quickly became elation when I discovered that I weighed 27 pounds less than I had been estimating for the last few years. How cool is it to lose 27 pounds just by walking into a doctor’s office? WAY FRICKIN’ COOL!

The pleasant reminders about what it’s like to work with a competent doctors didn’t stop there. Upon entering the exam room, the first thing I noticed was the laptop docked at a small desk -- one the doctor actually used to take notes during my exam. (It turns out he has to -- all docs seem to have questionable penmanship but this man writes worse than a quad friend of mine who controls the pen with his mouth.) Before I could finish my nod to my hubby about the laptop, the nurse had placed a thermometer in my mouth, a blood pressure cuff on my arm, and was taking my pulse and respiration counts. The kicker came when she pricked my finger and tested my blood sugar on the spot, which is apparently standard procedure for all their patients as I don’t have diabetes or hypoglycemia. (I wish more doctors down here would do this as diabetes run rampant in the USVI.) Long before Dr. G set foot in the room it was clear to both the hubby and I that we weren’t in Kansas anymore.

The reunion with Dr. G was amusing. He actually said, “Oh no, it is you” when he entered the exam room and saw me sitting in my chair and grinning up at him, a wicked glint in my eye. And then he laughed. When I heard that, I knew that he was willing to work with me, even though he knows that the complicated nature of my health -- and my history of not complying with any advice, rules and/or regulations that I consider to be at odds with my best interests -- will challenge him like no one he’s seen before.

After all of that, the actual exam was pretty ordinary. The lung x-ray should some evidence of pneumonia, and a urine culture I had done the week before showed an infection there, too. So 10 days on Cipro (prescribed in the hope it would be a double whammy and knock out both infections), another urine culture after the last Cipro tablet is taken, and then back to see Dr. G on the 12th.

I also casually mentioned to Dr. G that I was having another outbreak of a recurring infection that had been plaguing the finger tips on my right hand. So naturally he asks me to take off my band aid so he can take a look at it -- and he freaks out. He immediately diagnoses it as cellulitis, and starts worrying out loud that it has invaded the bone. I assure him it hasn’t, to which he asks how I know. And I tell him that I just do -- which I do. Really. I have an amazing talent of knowing when problems with my body are superficial and when they are worth worrying about. Many of my doctors eventually come to trust this (I had a neurosurgeon who told me that he was certain I could tell I was having neuro problems at least six months before an MRI could provide evidence of it). However, being a newbie to my world, Dr. G sent me off for blood tests and an x-ray of my thumb just to be sure. He also told me to lay off treating this infection with anything except a clean, dry dressing -- especially the treatment that worked best, a twice a day application of a .25 percent acetic acid solution.

And with that, off I went.

There’s something about antibiotics that do strange things with me when I have lung infections -- namely, I always seem to get worse after I start taking them. And this last dose was no exception. Even as I watched (and felt) the UTI clear, my lungs got worse. Five days into the 10 day treatment schedule, I started coughing; until that time, I had only been struggling for breath and wheezing upon exertion. It wasn’t a day later before I brought up the first bit of lung gunk in a lovely shade of neon not mean to be found in the human body. And it hasn’t eased up since, even though I finished the Cipro four days ago. The question remains: did the Cipro cause the phlegm or was the phlegm there all the time, and the Cipro just helped to get it out?

The thumb also got worse, and fast. The day after I had my blood drawn and the x-ray taken, it did bad things I won’t describe here to protect the squeamish. As soon as I saw what was happening, I set myself up for my first clash with my new doctor by starting treatment with the acetic acid. That was 10 days ago, and the wound is almost totally healed. I’m not quite sure what made Dr. G so opposed to the treatment Dr. Former had prescribed (it may have been just that: it came from Dr. Former). After all, it didn’t involve more antibiotics (I’m developing resistances and have to be careful about how much and when I take them), and most importantly, it worked. I guess we’ll find out when I see him on Wednesday, when I‘ll also get the results from the blood work and x-ray. As he handed me the x-ray orders, the good doctor assured me that if it showed there were any evidence that the bone had been compromised, “I would be admitted to the hospital for IV antibiotics so fast I wouldn’t know what hit me.” Since I’m writing this from the comfort of my own home, I’m pretty sure I was right about this being a superficial problem.

My appointment Wednesday ought to be very interesting indeed.