Wednesday, July 1, 2009

Suffering No More, Safe At Home

Last winter I attended an Evensong service at my beloved Parish, Trinity Church, Asbury Park (please follow the link for more information about our loving and dynamic congregation). Our Assisting Ecumenical Pastor, Rev. Bill Forbes told a marvelous parable about suffering. I asked him if I could reference it and he generously e-mailed me his sermon transcript.

Rev. Forbes knew about suffering. He had been battling pancreatic cancer for the past five years. Yesterday, his suffering ending and he went home to his Father's arms.

He was an ebullient fixture at Trinity since he and his wife found us several years ago upon their retirement to Ocean Grove. Now mind you, Trinity is an Episcopal Church and Rev. Forbes was a Presbyterian minister. But, as so many do, they fell in love the minute they walked through our doors. He was fond of describing Trinity, a haven of diversity, as "God's Great Experiment. A place where everyone is truly welcome, even a Presbyterian!"

As someone who is living with a chronic illness, I was inspired by the humility and grace he demonstrated in his own journey through uncertainty. Today in one of several published tributes to him, I noted this quote. Rev. Forbes had written, in the summer of 2008, “None of us knows how many days we will be granted. As you look into the mirror each and every day, take time to marvel that you have been created in the image of God. Count your blessings often…Share yourself abundantly with those who need encouragement, hope, and care…Keep that twinkle in your eye and help the world learn to laugh ... May God continue to bless you and keep you as you claim the gift of life each day!”

That really says it all. I am grateful to have known him.

Here is part of my post from last year:

Evensong this past Sunday was a gift of tranquility and grace. Candle lit, with the voices of dozens of guest choristers resounding through our century old church, it was beautiful physically and spiritually.

Our parish’s Assisting Ecumenical Priest, Rev. William Forbes, delivered a moving homily and related this parable:


There was a woman whose happiness was shattered by a great and sudden sorrow. She was torn apart by the death of her only brother, a fine man, who died suddenly in the prime of his life. In her anguish she cried out, “O God, why?” But there was no answer—only silence. She couldn’t live with the silence and she decided that she must go in search of an answer for herself. She thought that she would seek the wise counsel of the holy one who lived in the uncharted wilderness. And so she set out on her journey. She hadn’t gone too far when she came upon an old man sitting alone on a bench beside the road. He was weeping. “Why do you weep, my friend?” said the woman as she paused next to him.


“I have suffered a terrible loss,” he replied. “I have not enjoyed good health for some time now, but the joy and meaning of my life was my dear wife and, unexpectedly she has now died and my heart is broken. I don’t know if I can bear such pain.”


“I, too, have suffered a great loss,” said the woman. “Tell me, do you know why God allows such things to happen?”


He replied, “Some of my friends tell me that I am suffering for my own misdeeds. ‘God is just,’ they say, so my loss must be what I deserve.”


“Do you believe that?” asked the woman. “No, I do not. . .” he said.


“Nor do I,” said the woman. “Come, join me in my search for truth.” And, she took him gently by the arm and they went down the road until they came upon a man who seemed to be wandering aimlessly. “Come, walk with us,” said the pair.


“You will not find me to be very good company. My heart is heavy because I have suffered a great loss,” said the stranger. “And what is that?” asked the old man and the woman together. “My wife, who gave purpose to my life, has left me for another and I am alone in the world.”


“That is a sad and great loss,” said the old man. “Have you found meaning in your pain?” “My friends said that God is wiser than I and must have done this thing to make me stronger.” “Do you believe that?” asked the woman. “I try, but I cannot.” he said.


“Then come with us and let us seek answers together.” And so he joined them and they continued until they came upon a young woman sitting in front of a small cottage. She held her head in her hands and they could hear her sobbing. “Why do you weep?” they asked together.


“My baby has died,” she said. “She was only three months old. She was ill from birth and now my arms will never hold her again, nor will my eyes see her grown up.”


“We will weep with you,” said the woman. “Tell us please, has God revealed to you why we must bear so much pain in life?”


“No. . .my husband says that there can be no God in a world where babies die. He says everything happens by chance and that faith is only for fools.”


“Do you believe that?” they asked.


“I don’t want to. . .” and her voice trailed off.


“Then come with us and we will seek answers together from the holy and wise one.” Together they walked for a very long time. At twilight they reached a bridge. On the other side of the water they could see the figure of the holy one coming toward them. He was clothed in light. They were frightened and they covered their eyes. They wanted to run away, but as they uncovered their eyes and the light grew slightly less bright, and they beheld a face as care-worn as their own. It was a face that had seen as much as life offers anyone. . .


“You have come a long way. What is it you seek?” he asked.


“We seek the truth of suffering. Why does God visit such tragedies upon his children?” There was no reply. They studied his face and drew back as they saw tears running down his cheeks. At length he spoke. . “Forgive me. My heart is heavy, for I am bearing much sadness. I weep for one who has lost a brother; for a mother and father who have lost a child. I grieve for a love which once delighted but is now over. I weep for a love-filled marriage that lasted for many years and is now ended by the death of a beloved wife.”


As these words were spoken, they were all moved with an overwhelming sense of compassion. The woman took the arm of the holy man. The young woman came forward to wipe the tears from his cheeks. The old man grasped his hand tightly and the younger man put his arm around his shoulders.


The woman asked, “Why do these things happen?” He said, “God’s dominion is the dominion of the heart. There pain cannot be prevented. But it can be healed.”


“But what is the purpose of suffering?” said the old man.


“It has no purpose,” said the wise one, “it can only be endured.”


“How can we endure it?” asked the young mother.


“Only by sharing it,” was the reply.


“Show us how,” said the young man.


“This I have done. . .” He said no more and suddenly, he was gone. The woman looked up and saw that they were holding on to one another and caring for each other.


We all experience suffering in our lives, some big, some small, some that takes our breath away with its randomness and cruelty and unfairness.


But one redeeming feature of the pain we endure is our connection with others. That is why I am happy you are here and reading these words. I need your support on this road and I hope you are feeling mine.


Thank you Rev. Forbes for your generosity in sharing this poignant message of wisdom and comfort.


Amen to that. Thank you Rev. Forbes.


Photobucket

Wonderful, Wonderful

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.

Photobucket


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.

Photobucket

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:


Photobucket

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.

Photobucket

Yay!!

I just have one more question...Doctor, will I ever play the violin again?


Photobucket



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?



Photobucket

Thursday, June 18, 2009

Commonplace Medical Care: Good Enough?

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.

Photobucket

Sunday, June 7, 2009

Some Thoughts on A Speech in Cairo

If only...

If only this extension of the arm of peace rather than the arm of war can take hold.

I admire and respect our president, although I will emphasize I am not naive enough to think he does not have as many flaws as you or I. I am not a blind follower. But I have to have hope. By leaping on every perceived flaw, a far-reaching disservice is being done to our head of state and to the world perception of the United States.

Flaws, criticism, politics, rhetoric and ideology aside, I believe President Obama is doing what he can to make the slimmest of beginnings in restoring our national honor in the eyes of the world. He is attempting to chip a tiny crack in the wall of hatred and fear that has grown between the peoples of our world. This place we live on looks like a big blue marble from space. But it is small. And very fragile.

I want to believe there are more righteous people in our world than not. And that they will stand up to people who kill, maim and terrorize in the name of God. There is no religion on this earth that believes in such a hateful and cruel deity. There is no religion that sanctions terrorism, no matter what the cause, whether it is the Protestants and Catholics in Northern Ireland or the ubiquitous ‘Islamic terrorist’. Those who kill indiscriminately are committing evil, pure and simple. Evil is not pleasing to any God. But there are individuals, and groups of individuals, who are pure evil and who hide behind an excuse of religion in order to kill.

"Mutual respect" was what Mr. Obama called for in his speech. From a man whose father was Muslim. Mutual respect is the only path to peace.

I believe in a merciful and loving God. I pray that He will empower the hopeful to stand strong against evil. And that He will inspire the hateful with temperance and restraint.


Photobucket

Saturday, May 30, 2009

The Hermitage

What length of self imposed home confinement qualifies one to be a hermit? Is bathing factored in to the answer?

Between one thing and another, I am not getting out much these days. Relentless pain has a funny way of slowing one down.

It also has a funny way of making one particularly un-funny. It also has a funny way of making one refer to oneself in an oddly detached third person manner.

Which one am I again?

_____________________________


Prince Charming, Willing and Forbearing has not responded to my proposition as of yet. However, I received multiple offers of adoption from marvelous prospective parents. Thank you all for that! LOL Cats proved to be a deal breaker for an otherwise ideal (and only) gentleman. Although, to be realistic, he also has a Mrs. Ideal. Thanks anyway Crotchety Old Man.

Sigh.

Will I never hear the clattering of hoofs on my front steps?

And now that I put it that way, do I want to? Because with my luck it would be the Jersey Devil. Or those rabid wolverines that are supposed to be so rare in New Jersey. Hah!

Photobucket

Saturday, May 23, 2009

Love For Sale OR Is There a Spouse in the House?

Once Upon a Time

When I bought my adorable house, a 1930 Craftsman style bungalow, I was as healthy as a horse.

Buying my own home was beyond a dream come true! It was more than I ever had imagined I could possibly accomplish on my own. But I did. I was a single, widowed mother of four. I had driven past this house hundreds of times in the twenty years I had lived at the Shore. It was a real coup to get it. Everyone adores it. BUT, it needs constant maintenance. And I do mean CONSTANT.

I bought the house nine years ago and I was the Constant Maintainer. It was such fun. I really was elated when people seemed amazed that one little person could keep everything up by herself. But I did. Then, as if in slow motion, those balls I was keeping in the air started dropping as I lost my strength. One. By one. By two. By three…

The roof ball dropped first. Then the ceiling ball. The plumbing ball went. The gardening ball. The painting ball fell. The floor mopping ball. Each one hit the floor with a God awful, reverberating crack. Each crack reminded me of a new loss. CRACK! Dependence. CRACK! Neediness. CRACK! Desperation. CRACK! Weakness. CRACK! Deterioration. CRACK! CRACK! CRACK!

Subsequently, my self pity and loneliness have known no bounds.

Things that Make You Say “Hmmmmm…”


Yesterday, I read about a man who was widowed 17 years ago, when his only child was two. He was overwhelmed by grief and didn’t know how he would survive. Then he realized that the one thing keeping him going was fatherhood. So, against all odds and sense, he adopted first one, then another child. In the ensuing time, Larry Shine has adopted six more children, including some with special needs. He took himself from a bereaved, overwhelmed widower to a happy, fulfilled single father of nine. You can read about them here.

I found his story amazing and thought provoking. Even Larry’s name speaks of hope and love: “Shine”.

Hmmmm. (This is the thought provoking part.)

Larry Shine likes to help people. I’m a people. And I need help.

Maybe, I thought, just maybe...could there be a Larry Shine out there for me?!?!

So I have decided to put myself on sale.

There has to be someone out there who would find me attractive wouldn’t find me too revolting. Someone? Anyone?

The Pitch

My strong points:

• I am an excellent cook.
• I love to laugh.
• I love to clean.
• I am a total know-it-all wise ass very smart.
• I think I am very funny.
• I can knit you lots of lovely things. Even underwear if you work, say, in the North Pole. Or its closest southern neighbor, Wisconsin. I don’t think it would be too scratchy?
• I am a complete nightmare a delight to live with.
• I hardly ever never act neurotic or worry about the worst case scenario, like a home invasion by rabid wolverines (the probability in New Jersey is low; I checked). However, you know, it is never a bad idea to be prepared.
• I love movies and know A LOT about them. You will never again need Google for an obscure fact. I know them all. Obnoxious on someone less modest, but charming on me. :)
• I hate people am a total people person, even when it comes to your old college roommates who wear Tasmanian Devil t-shirts and have hair implants and do war whoops like nine year olds as they drunkenly cannon ball into the pool.
• I am over well educated. I can impress all your buddies at the bar with my skill at Jeopardy when they are trying to watch the play-offs. Would that be interrupting? That wouldn’t be a problem, would it be?

The Follow Up Pitch


• I have been in therapy for most of my adult life, but I should be self actualized any second now. Then, once I get over being madly in love with my therapist, I should be radically well.
• I am mature and self sufficient. Well, mature except for thinking LOL Cats is hilarious. And I am relatively self sufficient except for occasionally having to be reminded about that whole electricity/water thing.
• I do not cling or believe my significant other is the be all and end all. Unless you really want me to. Then I think I could do clingy. Hmmmm. Thinking…thinking…clingy…well, ok...but it would be a stretch! HA HA I love puns. That is the kind of sense of humor I have. LOL Cats and corny puns. What can I say, you could do worse. You could get someone who thinks Nancy Grace is an intellectual powerhouse of an investigative journalist.
• I never cry. Pretty good in a woman, eh!?! I simply hold it all in until I explode in a short lived but embarrassing, inappropriate rage have a calm and rational discussion until we clear the air.
• I do not love long walks on the beach and flea markets and sunsets. I hate shopping. And children. ha ha Just kidding. I love sunsets.
• I never know when to keep my mouth shut am very quiet and discreet. Because of this, I frequently say inadvertently offensive things to people I have just met, I am well liked from the minute I am met.
• I have rowdy wild possessed enchanting curly hair and green eyes.
• I am short and fat chubby pleasingly plump round.
• I do not smoke.
• I LOVE to drink like to drink would have a central line to deliver vodka straight to my liver if I could drink moderately.
• I was was almost wanted to be at Woodstock.
• I am hopelessly dorky a total nerd geeky beyond belief boring to anyone who has an actual life incredibly cool.
• I love my dog, but you don’t have to. Just don’t drop kick her or anything. But showing too much interest in her might be interpreted as a tad creepy.

Now I will just sit back and wait for the proposals to roll in. It better be fast. Because a rainstorm definitely is rolling in and that pesky roof still is leaking.




Photobucket

Friday, May 22, 2009

Bruce on Wheels

(Cover your eyes, Crotchety Old Man) Christine and I went to see Bruce, et. al. this evening. They are the best. He is such an entertainer and puts on a great show. So much energy! Everyone in the band looked awesome. And the play list was really eclectic, a great mix of old and new. He closed with Rosalita as an encore. Such fun. The soundtrack of my college summers. A local boy. A good guy. He’s not perfect, but heck, who is? He does a lot of good around here that people never know about.


I watched the concert from the handicapped area, sitting in a wheelchair. It was my wheelchair debut. I have given up so many of the things I love because I can’t walk very far anymore, I am deciding it is time to buckle (ha ha, no pun intended) and take advantage of wheels.

It definitely felt strange, awkward and uncomfortable. I was very self-conscious. And separated from everyone else, because my eyes are now at crotch level. Not the ideal anatomical area to start a conversation with. Or smile at. (My dear friend Marc hilariously points this out in his films at www.wheelchairkamikaze.com .) But parking was a snap. I would hold up my handicapped placard and we were instantly directed to close, plentiful parking. At one point I breathed to Christine “It’s like…magic!” And we both cracked up.

Everyone on the staff was very nice and helpful. It was fun when Christine raced me through the empty hall after the concert started and we went to the ladies, taking a turn practically on two wheels, the two of us giggling like mad. And how lucky am I to have a friend who is just so matter-of-fact about the whole thing?

But I have a lot to think about as I adjust to a new stage in my life.




A wheelchair. Who’d a thunk it?


Photobucket

Monday, May 18, 2009

What's Going On

First I have to say, I am so envious and in awe of bloggers who write wonderful posts every single day! I lead a much more boring existence…I am not nearly as prolific or witty. For that, I apologize to my loyal readers who keep coming back to the site!! Thank you all for being part of my life. I am trying to write more often, but this day-to-day stuff just keeps getting in the way!

_______________________________________________


There’s Something Happening Here…

It has been rough going since the operation. I just haven’t felt right. If I had stopped to consider it, I would have realized I hadn’t felt right for quite some time. But this is how I deal with not feeling right: I ignore it.

I dragged myself to my den and got some work done each day, but kept falling asleep sitting there at my computer. I went to Physical Therapy, but sensed I made little progress because of the pain. I did my home exercises and started to feel depressingly certain that I would never regain total function.

As I am an obsessive glutton for punishment, I watched YouTube videos of shoulder surgery over and over, cringing at some of what I saw. Oh, not the cutting or the blood or anything like that. That I expected. I cringed at the stuff you tend to put out of your mind. Like how much of me was going to be exposed. Like how my body was going to be pushed and pulled, an unconscious dead weight. That there would be writing on my boob. No, not “Dr. W. was here”, which actually I think I would have found funny. No, these were lines indicating anatomical landmarks. So if the lines were used as anatomical landmarks, guess what had to be showing for the bulk of the surgery?

I cringed at the idea of the breathing tube down my throat, my eyes taped shut, my head strapped to a head stabilizer, my entire body, including my head and face, covered with surgical drapes. Everything covered except for the bits I would have preferred to be covered, however. The more I watched, the more upset I got. But I didn’t let that stop me!!

I also continued to feel crappy, very MS-y, twitching and wobbly. Then, just like last time, my legs blew up like two gigantic marshmallows. And it started to get a little hard to breathe sometimes.

You don’t have to be a nurse to put these pieces together and come up with this brilliant diagnosis: something is wrong here. But I just kept on my jolly way. Well, not so jolly. Just kept on my way.

…What it is ain’t exactly clear…

When I went for PT on Tuesday, my Physical Therapist Chris took one look at my legs and insisted I call my regular doctor before she even touched me. I called Dr. B., who I adore for his gentle and compassionate demeanor. But dealing with his front office person is a nightmare. Even though I told this loathsome creature I had just had surgery, my legs were swollen and I had shortness of breath, she intercepted any discussion with the doctor and gave me an appointment for two days hence.

I was just too exhausted to fight with her. Chris was pretty shocked, but she kind of shrugged. We did our PT session and I lived.

The next day I had an important meeting. I work from home, so I almost always wear sweats. But for this meeting I pulled a suit out of the closet and pressed a nice top to go with it. Went to put the slacks on and found there was a FOUR INCH GAP between the button and the button hole. It would not button. It would not even touch. Not believing my eyes, I dropped them, pulled them up again and, lo and behold, a four inch gap. I just wore this suit on Easter. Comfortably.

Little alarms began to jingle in the back of my head. This was not an ordinary weight gain. There was something wrong here. (Hmmmm…I detect a pattern…)

But in the meantime, I still had to get to this meeting, dressed in a professional manner. I yanked every suit and dress out of my closet. Nothing fit. I stood in the middle of my room, surrounded by clothing and howled:

FUUUUUUUUUUCCCCCCCCCCCKKKKKKKKKKKKKK!!!!!!

Because everyone knows that makes clothes fit better.

I finally dug up a knit pants set that was presentable at least. And stretchy. But my heart was pounding with fear. This was a pretty alarming sign. When I got home that evening, my daughter and I eyed my legs, which were now about three times their normal size. I was having trouble catching my breath. She looked me straight in the eye and said, you are going to the emergency room. I didn’t argue.

…There’s a man with a gun over there telling me I got to beware…

Here is a scary realization...I am starting to love the ER. They were super nice to me and did every test known to man. Tests that would have taken days, if not weeks as an outpatient, and yet I was home within 3 hours. Findings: no Pulmonary Embolism, no Deep Vein Thrombosis, no cardiac problems, no pulmonary problems. They chalked it up to positional, because I was sitting up for the surgery, and to a reaction to the anesthesia. I wasn’t so sure about that, but I was so relieved to have the other things ruled out I didn’t care.

Went to my regular doctor appointment the next morning. Told him my sad saga. Illustrated with my horrific legs. As he was asking me about what tests they had done, he was flipping through my chart. And there he finds a five month old lab report documenting a major issue with my thyroid being out of whack! A major issue that needed to be addressed then, no delay.

…Paranoia strikes deep…

I am really upset this was missed. For months I have felt like crap, for months I have blamed the MS. Now it seems as though I have a problem with a relatively simple fix that should have been/could have been initiated before the beginning of the year. It is going to take weeks to find the right balance of medications and in the meantime I feel like death on toast.

Although on the other hand, I get to say, in all documented truthfulness, “It’s not fat, it’s glandular”!

I soldier on.

…Into your life it will creep
It starts when you're always afraid
You step out of line, the man come and take you away


It's time we stop, hey, what's that sound
Everybody look what's going down
We better stop, hey, what's that sound
Everybody look what's going down
Stop, hey, what's that sound
Everybody look what's going down


-- For What It's Worth
Buffalo Springfield
1966


Photobucket

Friday, May 15, 2009

Techno-Crash!

A problem with Photobucket has made a God-awful mess of my blogs.

I apologize and ask you to bear with me while I try to straighten things out!


Photobucket

Wednesday, May 6, 2009

The Whole Shebang

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!!




Photobucket

Sunday, May 3, 2009

The Shoulder Returns

So about the shoulder thing…

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.


Photobucket

Saturday, May 2, 2009

I AM a Writer

It has been a relatively uneventful few weeks, if you don’t count the sewage outflow pipe bursting open not once but twice, my car languishing, pretending it was sick, HAH, until I ransomed it from the mechanic for $855 and my shoulder hurting so much that by three o’clock every afternoon I just put my head on my desk and weep. Oh and there was a three inch flood in the basement too, that put out the pilot to the water heater. And I can't get down on the floor to relight it because of eff'ing MS. But my friend Peter came to do it for me. Thank you Peter.

I did have dinner one night with Christine and Peter, my wonderful friends, along with Christine’s sister and brother-in-law and approximately one million six adorable children. It is a good, good thing for me to go there because Christine loves me, waits on me hand and foot (and let me tell you NO ONE in my life has EVER waited on me hand and foot) and even better we laugh so much together my face hurts when I leave. Everyone should be lucky enough to have friends like Christine and Peter.

I have done a ton of writing, including writing that I AM BEING PAID FOR.


Photobucket


I whisper it to myself now, barely daring to say it out loud: “I am a writer”. Imagining someone asking me “What do you do?” and I can reply, “I am a writer.”

I am a writer.

Photobucket

Sunday, April 26, 2009

A Little More of Me

Because I apparently have an awful lot to say, I’ve started a new blog.

I love to read. Love it, love it, love it. In case you didn’t get it, I love it. And naturally, I love books. I have hundreds of books and I have bookcases in almost every room in my house. To me a book is not only beautiful, but full of promise. Either a brand new adventure or a fond and familiar place to get lost in.

I was going to do some posts about books here, and then I thought, heck, I will just start a whole new blog, about nothing but books.

Aren’t I full of myself the brave one?!

At any rate, you can find my new book blog at The Shore Bookworm. I plan to focus on books and reading and the impact of both on our lives. I am looking for guest posters, too. If you have something to say about how books are important to you, drop me an e-mail!

Stop by, have a look and be sure to leave comments!!





Photobucket

Saturday, April 25, 2009

A Great MS Walk!

Many, many thanks to everyone who supported Team Cooper in last Sunday’s MS Walk. There were 20 of us on the walk this year and we had a great morning. As usual in April, it was cool and windy on the boardwalk, but we had plenty of sunshine and super company. About 2000 people take part in the walk in Belmar, so the atmosphere is full of positive energy.

The best part is we are over 2/3 of the way to our goal. We have raised $2019.00 out of the $3000 we are shooting for. It is not too late!! I can still collect donations until June, so if you are so inclined, I would be incredibly grateful (click here to donate).

But I am still thrilled at the generosity of everyone who contributed, in person, financially or in spirit!! Thank you for bringing us that much closer to a cure for Multiple Sclerosis.



Photobucket

Saturday, April 18, 2009

A Shameless Plug

Tomorrow is the 21st Annual MS Walk and Team Cooper is taking part for the fourth time.

Normally I am a total cynic about things that are MS group related. Call me crazy, but I have a Bad Attitude towards the disease that has devastated my life. It is one of those I-don't-want-to-belong-to-any-club-that-would-have-me-as-a-member things (with apologies to Groucho). Granted, there are worse clubs to belong to. But this one is pretty sucky.

However, the MS Society does do a lot of good work, both in directly helping people with MS (they loaned me the power chair I use for the walk, cheerfully and without question) and in supporting research. The walk is my tiny way of feeling proactive. And, believe it or not, it is actually fun. We walk on the boardwalk, we have a great group and it a terrific way to feel like we are doing something positive.

In my dreams, more than anything, I would love to have everyone of you incredibly wonderful people who read my blog come with us. To meet you all in person and be able to talk and laugh together would really be a thrill. Sigh. I know that is not possible, but how much fun would that be?!?!

Although, anyone close enough to Belmar is more than welcome!!

Barring that, any donation you could make to the MS Society for our team would be humbly appreciated. You can connect to my page here. We are more than halfway to our goal this year. Last year we exceeded it. I would love to be able to that again!

But finally, if you could just pray for us or keep us in your thoughts, that would be the best thing of all. Pray that we have good weather. Pray that we reach our goal. Pray that we find a cure for Multiple Sclerosis. Pray for everyone who has to deal with illness and hardship.

Thanks everybody!!!

Photobucket