It is officially the first full day of summer, which means changing my blog layout to reflect the season. I know many bloggers never touch their layout, considering it their brand. What I have tried to do is keep my photo and font the same, even when I have changed colors and styles.
Well, today’s photo is a little bit different, although it won’t change again. The picture before was a stock photo of books on a windowsill. I decided if it is going to be my brand, I had better use my own books on my own windowsill. And that is what I have done.
So this is my summer theme for now, a hot blue and yellow sky. It is very hot here at the Shore this week, which is good for the merchants and the tourists and bad for most people with MS. Heat affects nerve conductivity and our limbs turn into floppy noodles . My brain turns into noodles too when I am hot, I have trouble thinking straight and have zero strength or energy. I used to spend hours on the beach every day when my kids were little. Here the beach is a way of life. Not any more for me though. Sitting on the boardwalk for a little while after the sun has gone down is more my speed now.
I would have stayed sequestered in my air conditioned room today except I had a futile follow up with Dr. Wonderful about my continuous shoulder pain and virtually useless right arm. At least he attempts to offer me ideas and solutions. And empathy. The three pain management physicians I have seen have treated me like a hot potato.
He didn’t disappoint me. He spent a long time evaluating my range of motion and talking to me about maintaining the strength in my arm and what his theories are on why I still have so much pain. He asked what I am doing to manage the pain. I told him since I am pretty well out of medicine, mostly breathing and relaxation exercises. “Well, keep that up” he said with a straight face. I guess the days of wine and narcotics are over. :( Such a great guy, though. A truly good person and generous doctor. I’m not quite discharged as hopeless yet, but close. I’ll go back in six months.
Ah well. There were worse ways to spend a Tuesday afternoon. It was good for me to get dressed and made up instead of sitting here in a tattered Manhattan College t-shirt , crap pants and fork-in-the-toaster hair. Not working has caused my personal standards to, um, slip a little. To none. I had no idea how simple no standards were until I descended, but it is very freeing.
I really need to pull myself together, but for now I will relax and cut myself a break.
I have been dragging for months and feeling like death on toast.
(Like Death on Toast, a Play after Pirandello in One Act:
Marie: Waiter, I would like some toast please, with marmalade. Waiter: I’m sorry madam, we’re all out of marmalade, we only have Death. Marie: But I don’t care for Death on Toast. Waiter: I’m sorry madam. Marie: I really, really don’t like it. Waiter: I am very sorry madam, it’s all we have. Marie: (pouting) I hate Death on Toast. Waiter: If I may be so bold madam, perhaps if you had not done something terribly wrong in a previous life, we would not be out of marmalade. Marie: It is all my fault, isn’t it? Waiter: I’m sorry madam, yes, it is. Marie: Waiter, I would like some toast please, with Death.
The End )
My broken shoulder has been agony despite three surgeries to try to get rid of the pain. When I tell you I was ready to tell my ortho to just amputate, I am not kidding.
Last week Chris, my PT extraordinaire, had an epiphany and said "maybe your arm pain is referred pain from your neck?".
And I innocently said, well, the Transverse Myelitis caused a large lesion on my cervical spine.
Bingo.
Chris and I looked at each other. It was time for the steroids I hate so much and had put off for so long.
I called my neurologist and told his secretary I thought I could use a course of solumedrol. Dr.H is so awesome. He totally respects my assessments. No questions asked, it was ordered.
At any rate, the visiting nurse came Wednesday and started my IV. I did the first infusion. And within hours I started to feel unbelievably better. The sensation of having been pummeled all over began to fade. My legs and knees, which were so weak and painful that yesterday I was using a walker, grew stronger and steadier as the day progressed. But the best: my arm and shoulder pain, which has been unceasing for almost two solid years, through three surgeries, has gradually eased until I am absolutely comfortable tonight.
Everybody has different experiences with IV steroids. Sometimes the side effects are simply intolerable. They have the potential to do incredible cumulative damage to your body. I have found that they aren’t always effective. Last time it wasn't at all. So I am very careful about choosing it as an option. This is my fifth course in five years, but the last one was a year and a half ago. I figured that was a long enough break. I was desperate this time.
When I went to see Dr. Wonderful for a surgery follow up on Tuesday, I was trying so hard through the whole visit not to cry. My arm is completely healed from an orthopedic standpoint, he told me. There is no reason for the pain, bone wise. And in my head I am thinking “omg omg omg what am I going to do?!?!” Fortunately, he wasn’t throwing up his hands. He is wonderful. He carefully read the PT report about the neck lesion and thought the theory had a lot of credibility. “That’s where all the nerve bundles originate.” He referred me to a pain management specialist. He said “We’ll treat this as a team.” Dr. H.’s secretary is faxing over as much info about the spinal cord damage to the pain guy as she has. What more can I ask for?
While Dr. Wonderful was writing prescriptions, I had nothing to look at but either him or the floor. Of course, given that I have the maturity of a ten year old, through blinking away my tears, it certainly doesn’t hurt that he is cute as a button and dresses impeccably. I was mesmerized by his gorgeous socks and idly wondered if he threw them out after each wearing. Because nothing that pristine could come out of the washing machine. Were they silk? Did his wife wash them by hand? Good thing he wrote fast, who knows where else my mind could have wandered.
By the way, now that you know about his socks, I have permission to use his real name. For the past almost two years I received the most incredibly optimistic, compassionate and skilled care from Dr. Brian Torpey of Tinton Falls, NJ. His real name is Dr. Torpey, but he will always be Dr. Wonderful to me.
So after two days of Solumedrol I have slept a total of five hours. By tomorrow I will be a perpetual motion machine. I will not be able to stop talking, or writing, as you can see already by the length of this post. I am walking without a cane. Nothing hurts. Yesterday I got washed, dressed, made up and was out the door with a cup of tea to Physical Therapy in twenty minutes flat. On Tuesday it took me almost twenty minutes just to wash my hair in the shower.
Unfortunately, next week I could crash and burn. But for these few days I am giddy with the sensation of normalcy.
The day before my surgery last week I shared my unfounded and irrational panic with all of you. Of course it was very real to me at that time. Because that’s what I do. I take true reality, put it away, faaar, faaar away, and roll out unwarranted and ridiculous fears. Let’s face it, it is much more entertaining to revel in dread then to be reasonable and mature. Maturity is highly overrated.
However, something amazing happened. I, a poster child for bad attitude and neurotic overreaction, was presented with miracle after miracle, just gift after gift, over and over again.
All my kids called me in the days before, telling me they loved me and then simply making me laugh with funny stories. They are so great, so much fun.
My daughter Mary Kate brought me to the surgicenter the morning of the surgery. I was a bundle of fear and anger and self pity. Fear over this irrevocable step of having my bone replaced. Anger and self pity that I was facing yet another really challenging and painful situation. Enough already!, I was thinking. And the loss of control had me completely freaked out. I just felt as though I could not take one more indignity, exposure, embarrassment.
But the amazing thing that happened Monday morning was that one by one each professional I met calmed me incrementally with kindness, respect and implications of complete autonomy.
I was given option after reasonable option. If I half jokingly had suggested that I perform the surgery myself, they probably would have at least paused and pretended to consider it. Oh…um….that’s right, I did suggest it. Completely seriously. And Dr. K., the anesthesiologist, treated my proposal as if it was an everyday request, not the most insane thing he had ever heard.
This was not that awful, phony-fake-niceness that costs nothing and, ultimately, means nothing. This was genuine. This was concern for my comfort. Empathy for my obvious anxiety.
Because I was addled with drugs and insanity, I cannot remember everyone’s name. Suzanne I remember, because she has been my nurse the three times that I’ve been there. Suzanne strikes me as a person who would be blast to have a martini or five with, just a fun, fun person. Angela I’ve had twice. So sweet. I think it was Angela who accidentally told me how much I weighed in a pre-surgery call, but, after two days of weeping and about 100,000 mg. of Xanax, I have forgiven her. Even though I can’t remember everyone’s names, I can see their faces and will always remember how amazing they were.
Considerate, pleasant, warm, funny, every nurse was patiently reassuring in every regard. I was embarrassed that my MS-weak legs could not help transfer my fat self from the gurney to the operating table, but they practically gave me three cheers, continually telling me how great I was doing. Or at least that is how it felt.
For many reasons that I will spare you of right now, I have a particular aversion to my body being exposed to strangers. I hesitantly, in a whisper, brought this up to one of the nurses. She earnestly assured me they took great pride and went to great lengths to maintain a patient’s dignity and privacy. And even though I discover upon waking that my right breast is COVERED with betadine, I’m totally buying it. No exposure there, nope, none at all. I am certain they turned off the lights, closed their eyes and daubed in the dark.
The nurse anesthetist was so, so soothing preparing me to go under. While blasting me with oxygen before putting me out and intubating me she said several times, “Ok, are you ready to go on vacation?” Here would be my only tiny criticism. I WASN’T READY!! Nobody had said anything about a vacation! I wasn’t packed. I hadn’t even picked a destination. Did I want to go to London or Prague? I had been promising to visit my friend Manju in Mumbai. Wait, wait I can’t decide…klunk.
I wake up in PACU, more blessings. Almost no pain. Totally patient focused. Solicitous. Professional. It is discovered my shoulder ice pump been has leaking and I am soaked to the skin with ice water. A coordinated dance organizes to get me, someone with limited balance and mobility to begin with, dried, cleaned and changed as quickly as possible. I am seamlessly transferred to a geri-chair and wheeled to the bathroom. Now, naturally, I have to go. One nurse whips off my knickers with the skill and speed of my high school boyfriend. Stands at the ready outside the door with all my dry things. And within minutes I am dressed, warm, and sipping ginger ale as if nothing in the world had ever happened.
I am definitely groggy and believe I am somewhat hallucinatory, because I think I have heard one of the nurses say “Her priest is here.” But that is not possible. For one thing, there are other several other patients there, so it could be someone else. For another, David is incredibly busy. Since we hired him over five years ago, with the mandate of growing the parish, he has literally not stopped for one minute. To the extent that we get worried about him overdoing it. He is so dedicated and has done such a spectacular job our previously empty pews are now packed. He doesn’t have the time to wander around Monmouth County for little old me when there are far more important things for him to do.
However, I am incorrect. David has indeed come to the surgicenter. I am still in surgery, so he stays in the waiting room and holds me in prayer. They let him know when I am done and that I am well, but he cannot come to the PACU. He is on his way to a meeting in New York, but he leaves a loving message.
So this is another blessing. In addition to all the cards and calls I have received from fellow parishioners over the previous weeks, there are all of you, as well. New friends, old friends, acquaintances, readers of my blog. My aunts, my sister, my beloved therapist, my other physicians. Providing e-mails, phone calls, messages on Facebook, offers of prayers, loving thoughts, reassurances.
If there was a package one could buy that said “Super Deluxe Hopeful, Encouraging and Positive Surgery Survival Kit”, these, all of the above, are all the things that would be in it.
Finally, there has been Dr. Wonderful himself. After the initial nightmarish search for care when I first fell, I am so lucky that he was put in my path. There is no doubt in my mind I have received the best medical care possible from this gifted surgeon. There was never a time that Dr. W. was not respectful, patient and compassionate. He took me seriously and he treated my relentless pain seriously. He was attentive yet genuine, a truly caring person. And his Administrative Assistant is a sincere reflection of his values. Maryanne is pleasant and fun to chat with but utterly professional. All my pre and post-op care was in place without me having to do a thing. Over this past 20 months every phone call was returned promptly, every question answered considerately.
There is no positive side to an injury like the one I sustained. There are no silver linings. That whole ‘if life gives you lemons then make lemonade’? Bullshit. If life gives you lemons then you have too many lemons. I don’t even like lemonade.
It is lovely to have my wonderful friendships validated. To discover there are marvelous people out there in the world. But you can get that without having your arm sliced open multiple times.
In the end, I have no words of wisdom, simply praise and gratitude for all the good that surrounded me and continues to sustain me. I have had this plaque hanging over my bed for years and I do believe it.
When I tripped over a string of lights on my patio on March 29, 2008, I hit the cement like a meteor striking the earth. In scientific terms that can be an ELE, an extinction level event. And, not to be too dramatic, that is practically is what it was for life as I had known it up to then.
Yeah, not too dramatic. lol
I had never broken a bone before, but knew the instant I hit the ground that something really, really bad had happened to my arm. The sensation was almost electrical, what I would imagine it would feel like to have lightening strike. The pain was unspeakable.
At the Emergency Room, they told me my arm was broken. What they didn’t tell me was the head of my arm bone, essentially the bottom half of my shoulder, had shattered into four pieces. And, truly, my life has not been the same since.
After a fruitless four day search for someone to take care of me, I found Dr. Wonderful. He was so great, in so many ways. I had my first operation since I was a child, actually almost exactly 50 years earlier. I was patched together in an effort to preserve the bone. And it might have worked. Except for Multiple Sclerosis.
The MS, the theory is going, has kept my arm from healing properly. The result has been relentless pain and little use of my arm since the day I fell. A second surgery was done to clean up the scar tissue that had developed, in the hope of calming everything down once and for all.
No such luck.
I am heading into my third shoulder surgery and will have part of the joint replaced. The theory this time is by taking away the source of the pain, my damaged bone, the pain will be relieved.
Instead of getting easier, this surgery stuff is getting harder and I am practically certifiable with anxiety at this point. I have watched the You Tube shoulder replacement film so many times, I could do the surgery myself. I am contemplating asking them to let me stay awake, just to make sure they are all doing everything they should.
I watched one training film for the surgery where the anesthetized female patient was COMPLETELY EXPOSED from the waist up the whole while her surgeon was talking to the camera. Bastard. So now I am obsessing about my 55 year old boobs, which nursed four children for a total of ten years, that they will be flopping over the sides of the operating table and resting on my surgeon’s shoes. For all to see and trip over.
Not fun. Well, not for me at any rate.
The surgery is done with the patient in a sitting up position. Apparently I had a little airway trouble during the last operation (a little airway trouble=I was unable to breathe), so I had to be intubated, a tube was put down my throat to make sure I didn’t suffocate.
More not fun. Although I suppose suffocating isn’t so spiffy either.
Can you tell yet that I don't want to do this?
I am trying to focus on the possibility that following this operation, I could be without pain for the first time in 20 months. Focusing on the fact that I love and trust Dr. Wonderful. Focusing on how truly kind and professional the staff is at the surgery center. Focusing on how it could be worse and there could be no options for me at all, that shoulder replacement is a miracle of modern medicine. Focusing on...
Wait!!!! Who am I kidding?!?! I’m a neurotic Drama Queen with major modesty and control issues. THAT’S ALL I CAN FOCUS ON!!! AAAAGGGHHH!!!
My bare breasts will be drooping from here to Kalamazoo and I won’t be able to do anything about it! I won’t be in charge! I won’t be calling the shots! I won’t even be freaking awake!
I have no tidy way to end this little rant. I am praying not so much that the surgery goes well, although that would be awfully nice. More than anything when I get there tomorrow morning at six a.m., I don’t want to make a complete fool of myself and totally lose it or something. Cause that’s how I’m feeling. You know, sort of like John Lithgow on the plane in The Twilight Zone.
Because I had a crappy week, I almost did a whole Kafka thing to start this post, about waking up to discover I was a bug, blah, blah blah.
But I realized, as this is my life, I am certain to have even worse weeks in the future, like getting arrested or something. Oh wait, that’s already happened too (I’ll tell you another time). So I’ll save The Metamorphisis for then. It was a tad melodramatic. A giant cockroach. ha ha ha ha Sigh.
This week it felt like everything I touched either broke, got dropped or went wrong. But don't worry. I'll have so much fun writing about it I will end up not minding a bit. :)
My work week, under pressure for hundreds of deliverables, was almost a total wash because I couldn’t access the remote system to my office for three days. Tick, tick, tick….I will probably be working all weekend to make up the work.
Tysabri infusion totally knocked me off my pins this month. I slept for 14 hours straight afterwards.
Then:
Car wreck and insurance issues. Grrrrrr!!!!
Gas company issues. Grrrrrrrr!!!
Mortgage payment issues. Grrrrrrrrr!!!! Although this one was mildly amusing. Two calls received from the mortgage company. That’s odd. I check online bill pay. Yep, mortgage is paid. I call to check on the problem. I tap in my account number as asked by the automatic system and a sweet little recording tells me everything I already know, how much I paid and when I paid it. And an arrears of $7000. I literally dropped the phone. I started pressing ‘O’ like mad to get a human being. And I got ‘John’.
John had a definite accent, but I couldn’t place it. I started blabbering .
Me: $7000! BLAAAH!!!! $7000! BLAAH!!!! $7000?!?!?! John: Oh well, thank you Mrs. Cooper, I will ask you to please not worry about that. Me: BLAAAAH?!?! John: No, thank you Mrs. Cooper, this is nothing to worry about. Me: BLAAH!!! John: No, really thank you Mrs. Cooper, this is not a problem. This was a mistake in the recording. Me: BLAAAH BLAAAH BLAAAAAAH!!!! John: Well yes, thank you Mrs. Cooper, I can understand your anxiety about this unfortunate situation, however this is an error which you are not to be concerned about. Me: Blah? John: Yes, thank Mrs. Cooper, this was a mistake. Me: blah? John: Yes, so thank you, I offer my apologies for the nervousness you experienced.
And at that point I was almost coherent again.
John: However, thank you Mrs. Cooper…
Me: BLAH?
Poor John was experiencing more anxiety and nervousness than I was.
John: …thank you, I am so sorry to tell you this and there is no reason to be upset however there is a $4.02 discrepancy in the statement we sent you and the actual amount that is owed. So we can accept an electronic payment for this $4.02 and as a courtesy we will waive the usual $12.50 fee. Me: $12BLAAAH50?!?! John: Oh no!! No! Thank you Mrs. Cooper it is waived, waived, it will not be charged to you. Me: blah?
It took ten minutes of repetition before he got all my bank numbers because of a very subtle language barrier. Finally I said:
Me: So John, where are you located? John: Ah Mrs. Cooper, thank you for asking that. Our corporate office is in Iowa. Me: But you’re not in Iowa, John, are you? John: Ah, thank you Mrs. Cooper…heh, heh… he laughed nervously…thank you, but we are not authorized to disclose that information. Me: But it is not Iowa, is it? Or even the United States? Or even this continent, is it? John: heh heh Thank you Mrs. Cooper, I am sorry, but thank you we are not permitted to disclose that information. heh heh Me: Ok, well, thank you John John: Oh, thank you Mrs. Cooper. Have I satisfactorily resolved all of you issues? Me: Yes, thank you John.
Except for where in the world is GMAC Customer Service. Hmmmm.
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It wasn’t an entirely sucky week, as I did have an appointment with Dr. Wonderful. Except I had meant to change it but forgot and remembered, while I was in the shower, 45 minutes before I was due there.
I couldn’t not go now.
As if I'd miss an opportunity to get more narcotics. Um, I mean as if I’d miss an opportunity to scope out his adorable self.
So I desperately raced to get ready and burst out the door, ten minutes late, with wet hair and panting like a dog. So off I trotted.
He looked wonderful, as usual. Treated me so nicely, as usual. Listened and totally got it about my pain as usual. And then proposed another surgery. As usual? Oy.
He is recommending a partial shoulder replacement to relieve the pain. So as I am writing this, I am watching a shoulder replacement surgery online on OR Live. So far my favorite parts have been the mallet, the drill and the buckets of blood being sucked out of the gaping wound.
Because I am shallow and immature, my true absolutely favorite part was the huge expanse of bare skin showing on the male patient exactly where my breast would be. Call me crazy, but I just don’t feel like having my boob hanging out in front of a bunch of strangers for several hours. Who knows what kind of bad habits it could pick up? hee hee That was just a little boob joke.
But honestly, would you want any of your naughty bits on display for everyone? While you weren’t even awake to hold it up or make excuses for it? Sigh.
So that was my week. In a tribute to Dr. W. I was going to treat you to the bloody, hammering, drilling shoulder video, but I decided to go in a different direction. No blood, lots of beard. lol
Is it me or does that audience look kind of…anemic? Who doesn’t rock to ZZ Top?
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An update on Joe: still waiting for his surgery due to complications. I was very sympathetic. I said:
Oh for fuck sake!!!! This is ridiculous. Are they waiting for you to die of old age so they don't have to operate at all?!?!
It is ruining my Angel of Mercy timetable because I have to have another surgery too, so I have limited time where I can stand by your bedside wringing my hands and looking like Ingrid Bergman in The Bells of St. Mary's.
I was really looking forward to that too. :( They are spoiling everything.
I know I am wont to be a teensy bit...hmmm...how should I put it? Ok, hyperbolic. I have taken inventory and honestly admitted on my MS message board that my current hobby is...histrionics.
Hey, it's a very entertaining hobby. True, it can be tiresome, I mean tiring, but it has lots of lovely rewards like attention and, occasionally, laughs. There is almost nothing I won't do for a laugh, sad to say.
So today I went to see Dr. Wonderful for a follow-up visit.
I am so used to being in unrelenting pain, that I had run out of ways to even describe it. Except to say that I am terrified I will have this for the rest of my life. I was able to say that to him today, hoping I wouldn't cry. Yes, gentle readers, I did one of these:
But he looked at my range of motion and read the report from Chris, Physical Therapist Extraordinaire and he was...encouraging!!! He totally got it about the pain and renewed without hesitation the medication that keeps me from chewing my arm off. He encouraged me not to give up and to keep up with the good PT work.
Yay!!
I just have one more question...Doctor, will I ever play the violin again?
I had to add this after the fact because Johnny Mathis is, well, wonderful, and the video is so wonderfully awful it made me laugh.
And of course, I never was able to play the violin, so that was funny. Right? Ummm...right?
Once a month I go to an oncologist’s infusion center to be given a medicine called Tysabri. I have no idea where they got this ridiculous name, because it has no resemblance to the generic, Natalizumab. I will readily admit Tysabri is better than Natalizumab. But they are both pretty darn bad.
Tysabri is a relatively new treatment for Multiple Sclerosis. It came out in 2004 with a lot of promise. Studies were showing it slowed the progression of MS by 68% over a placebo. That is pretty awesome. There was one tiny little hiccup. Three people on the drug developed an opportunistic infection called progressive multifocal leukoencephalopathy or PML. PML is a brain infection that is almost always fatal. It was for these three people. And now it is up to eight.
'Fatal' is one of those funny things that you just can’t reverse. Even though they didn’t have to, Biogen, the company that manufactures Tysabri, pulled it off the market. People who had been on it freaked out. They were better on it. And now it was gone.
After a year of research and damage control, Biogen re-introduced Tysabri. With a ton of restrictions. Because of the potential of a fatal illness, doctors were to only consider Tysabri as a last resort drug. Only if a patient could not tolerate or did not do well on the other MS therapies would they go on Tysabri (I fall into this fun category). They had to be registered with the Biogen Tysabri program. They had to complete a questionnaire every time they had an infusion, to determine if they had been on anything that might have suppressed their immune system even more in combination with the Tysabri. These questions were to be asked before the infusion. The infusion, through an intravenous line, was to be every 28 days. There should not be a gap in the treatment schedule. People who were on Tysabri when it was pulled and then went back on after it’s reintroduction were having allergic reactions. It appeared this was something you could not be casual about.
So this is what is on my mind once a month when I go to the oncologist’s office for my infusion. Opportunistic infections. Compromised immune systems. Death.
Ha ha. I’m just kidding!! lol I only think about death.
I went for my Tysabri infusion yesterday, to the same oncologist’s office I have gone to for two years. I really like this office. The first infusion center I went to was also an oncologist’s. They treated me like a cancer patient, doing an exam and blood work at each visit. I questioned the need and was told “This is the way we do it." I objected and was told it was their way or the highway.
Hello highway.
I love the place I go to now. Even though they have kept some of that 'chemo protocol' that drives me nuts, they are good natured and flexible. As opposed to obnoxious and bullying at the first place. The doctor I see (albeit unnecessarily) is very friendly and pleasant and we always have a nice chat about all sorts of things. I love the nurses, who are really, really kind to all the patients. They are just wonderful in a million ways.
On to my issue.
I have been feeling and looking like absolute crap since my shoulder surgery 6 weeks ago. My body has puffed up like the Michelin Man. My legs and feet especially are bad, with my feet oozing out of the straps of my sandals. I'm in constant pain. But no one knows why this has happened. Or what to do about it.
My Physical Therapist is awesome, practically standing on her head trying to come up with a modality that will make a difference. But she doesn’t know what’s wrong. My surgeon? Well, he is Dr. Wonderful, so Be Still My Heart. But he is starting to look just the teeniest bit frustrated that I am not better. When I don’t get better, I have to keep coming back. Keep coming back? That is a failure. In some way, some part of the process has failed and who wants that in their face? He suggested it is an immune response that is causing so much pain. I am totally on board for blaming my body. I specialize in self-loathing. But that is a guess and a guess is the best he can do. He did load me up with pain killers, but they barely touch the pain. I am probably habituated to them now.
But back to the infusion. So I am already feeling like crap. At every appointment I have to get my blood drawn because Tysabri has also been found to be associated with liver damage. (Malignant melanoma too, woo hoo!) The phlebotomist is a very pleasant woman who has long, claw-like acrylic nails, otherwise known as Bacteria R Us. She either doesn’t wear gloves or keeps the same single glove on that she had when I come in the room, from the last patient. I say nothing, because that is the way I was raised. So she is a major danger to me, an immunocompromised patient, and all the other fragile chemo patients she sees ever day.
But I don’t want to get her in trouble. Or make her mad at me. So I keep my mouth shut.
I drag myself into the treatment room and climb into a recliner that is so big my feet don’t reach the floor. It is a large room, probably 50 by 30 feet, with a glass wall divider. There are six recliners on one side of the wall (the Quiet Side) and about 12 on the other side, where there is a television that is always blaring an unutterably bad movie. The ‘Quiet Side’ is a joke. Everyone has someone with them and, naturally, they talk to each other. Because everyone is talking, they have to raise their voices. Some are talking on cell phones. There is a constant cacophony.
One of the nurses comes over to start my IV. No blown veins, so only one stick today. Yay! We chat, she hangs a bag of Benadryl and within about five minutes I am dozing uneasily. The Tysabri gets hung while I am snoozing.
Funny thing, I never remember them asking me the questions on the questionnaire that are supposed to be asked before the Tysabri is given. Hmmmm…
I wake up after about an hour. I haven’t had any lunch, so I eat the blueberry muffin I brought with me. Within a half an hour, I start to feel kind of queasy. A requirement of the process is that my blood pressure is to be taken before, during and after the infusion. Yesterday it starts at 134/84; next one is 145/86; the final is 160/90. I ask her if I should be worried. What I really mean is “Could you please call an ambulance?” The nurse says, wow, that is really high! But that is it. I tell her I feel nauseous. She stops in her tracks. Oh good, someone is going to take care of me! She narrows her eyes and says what do you mean.
And I say “I think I ate my blueberry muffin too fast.” Because God forbid I inconvenience somebody by dying on their shift. She bounces off, back to the six million other things that need her attention. I am thinking there is a reason my blood pressure is supposed to be taken. Like maybe a change in BP is a danger sign? But that doesn’t seem to occur to anyone else.
These are people who are really, really good. They work hard. They never stop moving. They are nice. They are funny. I like them. But I am so lost as a patient, I feel I don’t exist. My body is not doing what it is supposed to be doing, it’s not healing and it’s doing weird stuff, but this isn’t really anyone’s priority. Protocols are left by the wayside. A potential side effect means the staff gets out late. Blood pressure creeping steadily up to dangerous levels? It’s brushed off as being caused by the pain in my arm. Because anything else means extra work for people who are already overworked.
The worst part is, this is not a solitary occurrence. This is an epidemic. Everyone you know with a chronic illness could probably tell a similar story.
It is hard enough being sick and in pain in the first place. It was not at the top of my career choices, but it is equivalent to a full time job. It is almost impossible to advocate for yourself when you are feeling really rotten. And people who do advocate for themselves? They are considered rude pains in the ass.
Sigh.
I don’t know what the solution is. Besides learning to speak up in a way that does not create defensiveness and animosity on the other side. But is that possible? Did I ever tell you that I did that once before with a doctor’s office? Their response: a certified letter saying don’t come back.
When I first started, I asked Dr. H how long I would be on Tysabri. He said “Until something better comes along.” So for now, I will just quietly haul myself in every 28 days. I don’t want to rock the boat. I don’t want to get a certified letter. I am just too darn sick to battle. I don’t want anyone who is taking care of me to be mad at me. I am already too defenseless. That is a kind of vulnerability I cannot withstand.
As I predicted the other day, I indeed awoke from the anesthesia to discover myself full of holes.
Dr. W. did do the manipulation under anesthesia. But then felt a little look-see was necessary. Thus an arthroscopy. Apparently there was so much junk in there he had to do an open procedure too. He went back in through my previous scar, so at least I don’t have a new one.
I have a wicked sore throat, as I was also treated to a tube down my throat to keep my airway patent. Patency can be a problem for people who are upright and unconscious (the surgery is done with the patient in what they call the beach chair position, semi sitting). There might have been some reference also that this tube was utilized if people were so deeply asleep they were snoring. But I know that would not have applied to me because I am a lady and ladies do not snore. As if. Harrumpfff.
I cannot write too much more as it is really hard to type with one hand. In addition to all the above, I have a scalene block, which is a catheter in my neck that is constantly delivering anesthesia to my arm from a pump strapped around my waist. Between that and pain meds, I am pretty comfortable pain wise. An ice water machine is a great help as well. It pumps water through a wrap I put around my arm and the cold gives even more pain relief to the surgical area.
But the rest of me hurts! I am achy all over. I have bruises in places I didn’t know I had places. And I look like the wrath of God. After Dr. W. met with me following the surgery I went into the ladies room. This is what I saw in the mirror:
So now we know he is not nice to me because of my stunning good looks. Further evidence he is a really good person, as my looks were stunning alright, but not exactly good. Anyone else would have a) run screaming for the hills or b) rolled on the floor laughing.
As usual, the marvelous people in my life were enormously helpful. Deacon Gail from church, my friends Dru and Christine, my son James and my daughter Elizabeth have gone above and beyond. That also goes for the professionals providing me care, who have rearranged schedules and made last minute appointments to accommodate me. Thank you all.
Did I say I cannot write too much more? ha ha ha Silly me. Silly you to believe me! lol
One final treat. This is me, catheter, dressing and frownie face. RUN!!
Many of you know that I fell last spring and broke the head of my arm bone into four pieces (see The Accident under Favorite Posts). Dr. Wonderful did an amazing piece of surgery and bolted me all back together. And he managed to look wonderful whilst doing so. Me, I looked like a short, fat fifty three year old who had been run over by about ten trucks. Still do for that matter. Except now I am fifty four. Sigh.
I went through a billion hours of really hard physical therapy, worked just as hard at home, but in the fall simply started getting worse and worse until I was in constant pain and could barely use my arm.
Because I still owed him a quadrillion dollars, I was too ashamed to go back to Dr. W. Then in the mail one day I got a letter from the pratice. I expected the letter to say where is our money you loser deadbeat thief and was cringing as I opened it. But what it said was, we are concerned about you, please come in for a follow up. In the corner was a hand written note from Dr. W. saying please come in and let me make sure you are healing well.
The letter made me cry. I swear, I had a totally crap year, but God put so many wonderful people in my path.
So in I went, but still mortified and remorseful about my financial mess, the result of being out of work for ten months. I apologized to him. Most doctors would do a dance of discomfort and avoid the whole thing. He looked me straight in the eye and said firmly “Try not to worry about it. These things have a way of working themselves out.” His kindness choked me up all over again.
That was in December. More PT, x-rays and tests later and it is determined I have adhesive capsulitis (frozen shoulder) related to the trauma of the fall and surgery.
So tomorrow I go back to the surgery center where a few things may or may not happen. They will put me to sleep (just to sleep, not actually put me to death; hmmm…at least I hope not). Then Dr. W. will manipulate my arm to rip the muscles apart loosen up the adhesions. That could be it. Yay! But if not…
…he would move to an arthroscopic procedure and poke around in my shoulder to try to free up where things are tight. And that could be it. Yay. But if not…
…Dr. W. would re-open my scar and open the shoulder to try and fix things that way. Oh yay. Sigh.
Last year I never for a second thought I would have to have a surgical procedure to fix my broken arm. This year there is not a doubt in my mind that when I wake up tomorrow, I will have been cut somewhere. As distressing as this is, it will most likely help, give me my arm function back and gradually diminish the pain.
Fingers crossed.
And I get to see Dr. Wonderful heaps more times. Woo hoo.
So. This is my 100th post. I have been racking my brain for something witty, poignant, wise and something that will finally get those folks at the We Publish Bestsellers And Will Make You Rich And Famous Forever Publishing House to notice me and make me rich and famous forever. Or maybe to get Oprah to notice my pathetic yet brave existence and give me lots of cool free stuff for being a pathetic yet brave inspiration. Sniff.
Alas. Nothing.
Instead I had a week where Dr. Wonderful told me I probably had to have shoulder surgery again to fix the first shoulder surgery (although he did look wonderful telling me :)).
I had to have a test that involved sticking a six inch long needle into my shoulder joint.
Dr. H. told me he thinks I have a form of MS that is really really bad and will cause me to be blind and paralyzed. Oh, and dead. I have to have a blood test for this possible diagnosis and have been dragging my feet, being of the Ignorance Is Bliss school of thought.
I had my monthly Tysabri infusion on Wednesday, one stick for blood work, two sticks to start an IV (missed on the first; oops sorry about that).
Had an MRI of the brain to track MS progression yesterday. Another stick for IV contrast. Have an MRI of the spine tomorrow. Another stick for IV contrast. Then…I think that’s it for bodily assaults for at least the next two weeks.
My parent’s continue to be in crisis and I continue to be the family pariah amongst my siblings who rejected out of hand my plan for a geriatric social worker to assist us.
Consequences of being out of work for almost a year continue to dog me.
I am still fat.
However, (in my life there is always a ‘however’, otherwise I wouldn’t still be here) I had a perfect cup of tea this morning while I watched the rain.
I have friends who endlessly affirm me and their love for me.
I have children who, despite our issues, I adore. And who, I suspect, have some affection for me.
I have this incredible medium of the Internet, where I have made so many new friends and have been exposed to such fascinating lives.
I sit cross legged in bed with the newspaper, cozy on this gloomy day under a favorite soft, worn patchwork quilt. My knitting is piled beside me, along with skeins of gorgeous hand spun wool I found on Etsy. My bedroom is exactly how I want it, old oak dressers, floral linens, buttery yellow walls, books everywhere. My little dog snuggles against me and heaves an enormously contented sigh.
Met with Dr. Wonderful this week to check on my shoulder. I was delighted to demonstrate my prowess in doing things like…touching the top of my head. He appeared to be delighted as well. And he told me not once, not twice, but THREE times that I looked good. GOOD. With a big smile. No back pedaling. I was quite pleased.
As a matter of fact, about a dozen different people told me I looked good this week. Or even ‘great’. It has been very cool. Although it has left me wondering if there is an epidemic of poor eyesight going around. Hmmm...
Wedding Preparations
Ordered my dress for my son’s wedding. The Herman Melville special, as in Moby Dick, THE GREAT WHITE WHALE. I am dreading trying it on as I have lost two pounds total. Probably in my earlobes. Oy.
So desperate times call for desperate measures and Mary Kate and I are both starting…dunt dunt dunnnnn…Slim Fast tomorrow. Nourish shmourish, I just want to be thin again.
Lonely
My best friend, my sister and my therapist are all either away or going away this week. Oy. I am already decompensating.
Another Operation
I am having surgery next Monday to correct a problem on the eye I lost when I was a child. I am a little nervous about it, especially since ALL MY SUPPORT SYSTEMS WILL BE AWAY. Traitors. :(
Oh, I'm just kidding. They are the best people in the world and no one deserves a break more than they do.
The surgery will affect my appearance, theoretically for the better, by improving the function of the lids on that eye. But it's a little scary to think of something going wrong that would be so visible. My eye surgeon is supposed to be the best in New Jersey and he is very, very nice. I do trust him.
But God knows I don't want Dr. Wonderful to have to say next time he sees me, "You look...hmm...just so-so."
I had a follow-up with Dr. Wonderful this week. He looked handsome as usual. He asked how I was doing and I was thrilled to be able to enthusiastically say “I feel better!” And he said “Great. You look good.”
Now I have to tell you, this is not a statement that a fat, middle-aged, one-eyed woman hears too often.
So I replied with surprised and flattered glee, “Really!?!”. And subsequently observed his face recoil in unmitigated horror as he vigorously back pedaled. “I mean” he stammered, “It looks like you’re moving a lot better.”
Oh.
Gee whiz, it wasn’t like I was going to jump his bones or anything. No orthopedic pun intended.
Oh well. It did feel good for a millisecond.
Another one:
I met this lovely older lady at physical therapy. She is doing exercises similar to mine, but she's doing them better than me.
Naturally, I'm dead jealous and competitive and want to knock this little old lady over so she breaks her other arm and I will outdo her in PT.
Part of my gambit is to gain her trust and give her a false sense of security by letting her think I am a nice person and actually interested in her. So I asked her how long it had been since she had her surgery, because she was doing so well. Her answer: 3 weeks. THREE FREAKING WEEKS. You know how long it's been since mine? Eleven weeks! She's flinging her arm all over creation and I can't even…well, it’s personal, but you get the picture.
So then I ask her, what happened? Oh, she fell too. Only she fell in GREECE. At the PARTHENON!!!!
Not only is this lady running physical therapy circles around me, she has a WAY better fall story.
My friends had encouraged me to make up good stories to explain my massive scar: shark attack; stuntwoman accident; the Jersey Devil; freak onion chopping accident; knitting accident; tattoo cover attempt gone horribly wrong; squirrel attack while drinking martinis (don’t ask). So, they say to me, maybe she is making the whole Greece thing up.
Hmmmm. I never thought of that. Now that you mention it, she did look like a big fat liar even though she was only about 5 feet tall and 85 lbs.
Parthenon my ass.
So then my friend Graea in England says, “Sweet looking little old ladies get away with murder. She probably isn't even very old--just cunning makeup. I bet she's exaggerating her injury, too.” Hmmmm. I never thought of that either.
And best of all Graea says, “And no way can she have a better scar than you. You would make Genghis Khan feel like a big girl's blouse.”
No wonder I love Graea.
I have to go lie down for a little while now and not think about little old ladies with great stories who do better than me in physical therapy. And doctors who look terrified when they inadvertently hand me a compliment.
By that Friday afternoon I was scheduled for an open reduction/internal fixation of my four-part proximal humerus fracture, to be done as a same day surgery at a local surgery center. That comforts me a little. Just a surgery center. Well, it couldn’t be too bad then. The MS was not a complicating factor that would have it done in a hospital. So it would be simple. Sort of like having a tooth pulled or an ingrown toenail taken care of. My biggest concern was that I might have to have a urinary catheter. I am so shallow. Oh, and stupid. As a result of my ignorance, even as a nurse, I am completely and utterly unprepared for what I am in for.
The craziest part is when I called the center to find out what time I had to be there on Monday, the girl turned around from the phone and called to someone “What time is the Open Reduction on Monday?” Open Reduction. She said it. Right into my ear. And “open” means just what it sounds like. I know what an open reduction is. And it still never registered. I was primarily irritated that I had been demoted to a procedure, not a name.
My daughter Mary Kate brings me to the surgery center bright and early Monday morning, nine days after my fall. I am relaxed and cheerful. I am certain I will be sufficiently medicated to be comfortable and that this will fix my arm. Better in a few days, I’ll be. So I have no qualms. What a moron.
The staff is very nice. The nurse anesthetist shows me one part of the anesthesia they are going use, an interscalene block. A catheter will be put in my neck and medicine will go in there that will completely numb my shoulder and arm. With that I will only have sedation for the surgery, not general anesthesia. So I need neither intubation nor catheterization (yay, I can leave on my knickers!). An attached pump will go home with me, pumping medicine to the blocked area for four days, by which time the pain will be reduced. Well, that sounds great!, I think. I am still cheerful and relaxed. Especially since I still have my knickers on. They will give me a little something to relax me while they insert the catheter in my neck. And to be honest, except for a brief memory of being wheeled into the operating room, that is the last thing I remember until I am offered ginger ale in the recovery room. According to my parents, this is six hours later.
Dr. Wonderful appears in the Recovery Room with copies of my x-rays. He proudly shows off his work: a plate and about a billion screws that are holding my arm bone pieces together. I look at it as though it belongs to someone else. “Wow” I say while sipping ginger ale. I feel no connection to that hardware whatsoever. I had no idea there was going to BE any hardware, so it doesn’t sink in.
This is not my actual arm, but it's what the inside of it pretty much looks like now.
What I don’t realize has happened, and won’t until days later when I look it up on the internet, is this: I was placed on the operating table and put under conscious sedation, meaning I was heavily sedated but not completely unconscious. Because of the drugs used, I wouldn’t remember anything. The operating table was then raised into a seated position. Every bit of me, except for my right shoulder, the area to be operated on, was covered in surgical drapes, including my head and face (Can we talk about my claustrophobia? I practically need to be sedated just typing this.).
My right lower arm is swathed in sterile wrappings. With a scalpel, Dr. Wonderful makes a cut from the top of my shoulder six inches down my arm, which is then spread wide open and held in place like that with metal surgical retractors for the extent of the surgery. Muscles and blood vessels and nerves are pushed and/or cut out of the way to reveal the bone. The broken pieces of the head of the humerus were fitted together and fastened.
Dr. Wonderful then decided on the size of the plate needed and number of screws. Holes were drilled into my arm bone with an electric drill, the plate was fastened onto the bone and broken pieces with the screws until everything was nice and put together. Throughout the surgery the surgical site is continually flushed and suctioned to keep blood out of the way. Additionally, my arm was repeatedly manipulated and x-rayed during each step of the operation to make sure everything was fitting together as it should. At the end, I was sutured up and sent on my way.
Alrighty then. Not quite like having a tooth pulled. No wonder it freaking hurts.
I go home. My arm is numb and I have plenty of pain medicine. I sleep off and on over the next day and I feel…ok. Then a few things happen. First, my legs swell up like two giant slugs attached to my body. To the extent that anyone looking at them gasps. There is no delineation from my thighs to my ankles and my feet look like giant marshmallows with little dots where the toes are. Add the fact that my skin is as white as paper, this is not a pretty sight. I look like the Michelin man from the waist down.
I call the surgeon’s office. They tell me to call the surgery center. And to keep my feet up. Which is what I have been doing since I fell, but whatever. So I call the surgery center. They tell me to call the surgeon. And to keep my feet up. I call the surgeon back. They tell me to call my regular doctor. And to keep my feet up. I call my regular doctor. His office is closed for a few days. I am surprised the answering service does not tell me to keep my feet up. I call the surgeon back. They are not pleased that the hot potato has landed back with them. “Ok, well, keep your feet up and I’ll tell the doctor. We’ll call you back.”
And I also now realize that my arm isn’t really numb anymore. The pump was supposed to be effective for four days. This is the third day, but there should be another 24 hours plus to go. Then I notice the neck of my t-shirt is wet. Right where the catheter is. As a matter of fact, the catheter is leaking. The numbing medication that is supposed to be going into my arm is now dripping down my chest.
I call the surgery center about the catheter and they tell me to come in, the anesthesiologist will adjust the catheter for me, and he fastens it with surgical glue. He also gives me a nice bolus of analgesia, which numbs me for a blissful couple of hours. The nurse anesthetist says, “You know, I thought it looked a little out of place when you left the OR.” Oy vey. Maybe THEN would have been a good time to adjust it? But I keep my mouth shut, because otherwise everyone has been so nice to me. She points out my swollen legs to the anesthesiologist. “Hmmm.”, he says. “They weren’t like that on Monday.”, she says. “Hmmm.”, he says, “Keep your feet up.”
At home the surgeon’s office has called back about my legs. Get a pair of Jobst stockings. These are stockings that are about two inches by two inches and you have to get your whole leg into them and they perform miracles. However, the real miracle is getting them on. What no one has taken into consideration, including me before I plunk down $85 for the stockings, is that it is hard enough to get them on with TWO hands. With one, it is impossible.
Before I can even get too upset about the legs, like magic they go back to normal. The interscalene block catheter comes out. And then I settle into my routine of the next four weeks. Living from pain pill to pain pill, completely incapacitated, unable to drive, unable to dress without assistance, unable to lie down to sleep, sleeping in a chair. It will be seven weeks before I can sleep through the night. The pain and the stress have a terrible impact on my MS symptoms, ramping them up, causing major issues with walking, cognition, tremors and numbness. My daughter has to help me put my underwear on and does my hair. My mother and friends and church cook for me. I can’t even spread butter on toast!
The six inch long incision is breathtakingly ugly. Gradually it sinks in that I have had major surgery. That this is going to take a long, long time to recover from. And I become extremely depressed. I feel as though my body has let me down by breaking. I feel as though life has let me down by throwing me this incredible curve when I am already dealing with so many disasters, MS and being out of work. I feel like Dr. Wonderful let me down by not telling me what the surgery entailed. But, to be fair, I asked no questions either. Part of that may be because I was demented by pain, narcotics and lack of sleep, but…they could have given me a clue. The picture of my face in the waiting room that morning should be next to the definition of ‘clueless’ in the dictionary. But here’s a scary fact: according to my daughter, who was with me, Dr. Wonderful did explain exactly what was entailed when we were in his office that Friday morning before the surgery. I just couldn’t hear it.
I have home physical therapy ordered. Janet, who comes to the house three times a week, is wonderful. She is cheerful and no-nonsense, patient and kind. She is tolerant when Bella the Maniac Shih-Tzu jumps all over her like, well, a maniac. She manipulates my arm gently to get back my range of motion. She is relentlessly encouraging and supportive. She tells me to rest and take care of myself and how to manage my arm and pain better. She worries about me and my blood pressure. She scolds me when I do too much. She is a major contributor to my healing process. I love her.
Gradually I start getting out a little, but a simple trip to the supermarket exhausts me. My sweet father drives me everywhere, doctor’s appointments, the supermarket, even a job interview. Yes, I went to a job interview two weeks post-op in a sling. (I didn’t get the job :(). We go to the supermarket and can’t find a parking spot, so we park in the designated “Parent with Child” spot, at 76 and 53 years of age, giggling like two little kids. I do have to say it is a treat spending that time with my father, like I was little again.
After eight weeks, the incision is completely healed (although still hideous). And so are the bones in my arm. Dr. Wonderful gives me the good news: I can drive again! It has been two months since I fell. My life screeched to a halt that day and is very, very slowly creeping back to normal. I am not there yet. I now go to out-patient physical therapy three times a week (Mike is a great therapist, but I do miss Janet!). My arm is gradually, painfully getting strength and motion back. I can dress myself now and sort of do my hair.
It is going to take me a long time to process this experience. There has been a lot of bad, a lot of craziness but much good as well. Many people came through for me, supporting and encouraging me, telling me they loved me and thought about me and were devastated for me. Dr. Wonderful was wonderful. He put me back together. I am trying to focus on all that instead of how hard it was to get appropriate care, how horrifyingly brutal the injury and surgery turned out to be, how this accident impacted my sense of safety and how long it is taking me to return to my interrupted life.
I am getting better every day. And that’s the story!
So. Monday comes, after a torturous weekend. I called the first name on my insurance list, we’ll call him Dr. Smith. I told his clerk I had broken my arm on Saturday and had been advised by the ER I had to be seen right away Monday morning. In a bored voice, she told me they couldn’t see me until Thursday. Oh, I think, she didn’t hear the broken arm part. So patiently I repeated myself and said I needed to see someone today. Sorry, she said. I asked if there was anyone else in the practice. No, she said, sorry.
Starting to feel panicky, I was trying not to cry. I thanked her and called the next name on the list, we’ll call him Dr. Jones.
Dr. Jones’ clerk was very pleasant and told me they could see me that morning. I couldn’t drive, so my wonderful sister rearranged her whole day to take me. We get there and the door says ‘Dr. A. Smith & Dr. B. Jones’. Dr. Smith was in the same office as Dr. Jones. I felt like Alice in Wonderland. Their practices were separate but they shared the office and their appointment clerks sat next to each other. But that first woman, Dr. Smith’s clerk, with utter indifference, turned me away without an appointment. She never even asked the woman sitting next to her if Dr. Jones had anything available.
Dr. Jones was very sweet, very attentive and approximately 300 years old. I know, I’m being silly. He was actually more like 400 years old. He asked me how old I was so many times my sister started to giggle. Then he “lost” my x-rays, coming in and out of the examining room over and over, patting his pockets and muttering “They must be around here somewhere!”. I thought maybe it was a little comedy act he was putting on to help me relax. No such luck. He decided I needed another set to be taken by his technician.
The tech, we’ll call her Merciless Cow, told me to lie on the table, which was almost impossible for me due to the pain. I asked if I could have something under my shoulder to support it. The Merciless Cow acted as though she had never heard of such a request before. She finally roughly shoved a rolled up towel under my broken shoulder, took the x-rays while I tried to keep from passing out, then, without warning, she yanked the towel out from under my arm. I screamed so loudly my sister heard me in the waiting room and I actually briefly lost consciousness. The doctor ran and got me water and smelling salts.
He tells me that the head of the humerus bone in my arm is shattered into four fully separated pieces. That I will need shoulder replacement surgery. That I need a CT scan. That he doesn't do that kind of surgery, someone else will have to. But come back to see him, ummmm, Friday. After I have the CT scan that his office is arranging for Thursday.
My sister and I stumble back to the car in shock. I can hear his voice in my head saying ‘shoulder replacement, shoulder replacement’ over and over. REPLACEMENT!?!?!?! I am only 53 years old. Oh my God. I am in agony. My sister looks at me and says, "If you need surgery and a CT scan and your arm is broken in four places, why the fuck didn't he just admit you?!?!" So I start crying, because now I am in pain AND scared and I say I don't know. So all the way home she's yelling "I'm turning around and taking you to the ER" and I'm saying, "No, just let me go home and take some Percocet" and she's saying "You can't wait another WEEK to take care of four broken bones in your arm!!" Crying and yelling, crying and yelling, all the way home. Where I proceed to almost faint again.
Within a few hours, I give in. Mary Kate takes me back to the ER. Surely they will admit me. Surely they will help me. They give me IV dilaudid, which helped me sleep for about 2 consecutive hours, if nothing else. The doctor never even touches or looks at my arm. He does read the x-ray and tells me, you’re going to love this, “I’ve seen worse”. Come closer, doctor dear, so I can kick you in your testicles and then tell you I’ve seen worse.
At midnight, they send me home with oral dilaudid, promising it would help. I am too exhausted to dispute this. I wake up in pain at 2 am and it was too soon to take it again. Dozed. Wake up again at 3, still too soon. Dozed. Wake at 4, took one, dozed until 4:20, wake up in agony as if I took nothing.
So now I sat there doing Lamaze breathing with fiery knives of overwhelming pain slicing down my arm, which was three times its normal size and dark purple. Everything else, my cut and bruised legs and knees, my scraped hands and wrists, my cut face, are nothing in comparison. I am at my wit’s end.
At approximately 9 a.m. Tuesday, my son calls. His friend is engaged to the son of an orthopedic surgeon in my area, try that practice. I call there and that morning finally meet…Dr. Wonderful.
Dr. Wonderful is pleasant, handsome and take charge. He is also beautifully dressed. The whole package. (What can I say, I’m wounded but I still have eyeballs!) “First thing,” he says, “We have to get your pain under control.” Now I want to marry him. He then proceeds to list all the other things I will need: home care, a shower bench and, best of all, after the pain meds, a raised toilet seat. Heaven! It’s funny how your priorities change when you can’t sit down to pee without shrieking. Surgery is probably going to be needed, but not until the swelling and bruising go down over the next few days.
I float out of there on a cloud of optimism, with a fistful of prescriptions and a soft focus vision of Dr. Wonderful in silver armor on a white horse. Someone has listened to me. Someone is taking care of me. Someone cares!!!
I order my toilet seat and shower bench and they arrive so quickly it’s as though the guy had been standing behind a tree in my yard just waiting to be asked in someday. Because I cannot lie down, I settle, loaded with drugs, into an armchair in my sunroom. It is not too bad. I have the TV, a comfy chair, lots of light and as long as I DO NOT move, I am relatively comfortable.
I am blissfully unaware that I will be living in that chair for the next five weeks.
A sunroom during the day is a cheerful, cozy place, even if the weather is bad. Mine is full of overstuffed furniture to cuddle into whether reading or watching TV. A sunroom at night, when it is after midnight and all the lights are out and everyone else is in bed, is a spooky, gloomy place, full of the echoes of the things that happen during the day, a pair of the girl’s shoes under the bench, a book left by the reader that has slid to the floor. It is also unbelievably noisy. I live on a busy street, on a corner. There is nothing to muffle sound and many cars and trucks go by, even in the middle of the night. And I heard every one of them, even with all the windows closed. I would just start to doze off when some rattletrap would lumber by. It was hard enough to try to sleep sitting up, scootched into the left corner of the chair so my right arm was not touching anything but the pillows I had supporting it.
I went for a CT that Thursday. The doctor wanted to see if the pieces were displaced, or moved out of order. If they were all neatly tucked together, I might be able to get away with nothing more than a sling for a few weeks. I have to say, I was utterly certain this was going to be the case. I did not think, not for a single second, that I would have to have any surgery. That seemed preposterous to me. I was young and healthy. Well, young-ish and healthy-ish. My bones would never be so contrary as to be displaced! Honestly! The idea!
I was so out of it by Thursday, I barely remember going for the CT. I know I went to Dr. Wonderful on Friday too, but I hardly have any memory of that either. The medication, pain and lack of sleep were taking their toll. I know the doctor did tell me on Friday that he suspected the bones were displaced to the degree I would need surgery, but he wanted to check the CT results when he was at the hospital that afternoon. If they were, surgery would be early the following week. “Oh, like Wednesday?” I said. “No, like Monday.” he replied.
Hmmmmm. Well, that’s silly anyway. I’m not having surgery, I think to myself. As usual, as I have said on this site before, I was completely wrong, wrong, wrong.
throwing me this incredible curve when I am already dealing with so many disasters, MS and being out of work. I feel like Dr. Wonderful let me down by not telling me what the surgery entailed. But, to be fair, I asked no questions either. Part of that may be because I was demented by pain, narcotics and lack of sleep, but…they could have given me a clue. The picture of my face in the waiting room that morning should be next to the definition of ‘clueless’ in the dictionary. But here’s a scary fact: according to my daughter, who was with me, Dr. Wonderful did explain exactly what was entailed when we were in his office that Friday morning before the surgery. I just couldn’t hear it.