Friday, March 28, 2008

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.

Thursday, March 27, 2008

Flying the Crip-Unfriendly Skies

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.

Saturday, March 15, 2008

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.