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Hello all. Star’s friend Dee here.

I’ve been dragging my feet, waiting to be able to give you the “happily ever after” version of Star’s post eye surgery report. But, sadly, it’s not forthcoming.

The Big Day (Monday)

We got to the outpatient center yesterday right on schedule – 6:15 a.m. Not too tough for an early riser like Star, but yoiks – that’s early for a sleeper-inner like me!

There were some very enjoyable moments – especially when Star had all the nurses – and even the no-nonsense surgeon — in stitches (sorry – cheap medical profession pun) before she was anesthetized. I mean, she was ON!  Nurses on the other side of the room were looking for excuses to get in a little closer, trying to figure out why everyone was laughing right before this “poor patient” was getting ready to head for surgery. So I advise – hold on to that delightfully Star image for a while.

Two hours later. According to the doctor, who came out to the waiting room to give me the full report, the surgery went very well. According to the nurse, who gave me her full report in the post-op, Star did very well. She woke from the anesthesia right on schedule. We got her back into the car to go home right on schedule. So smooooth. Was this too good to be true?

As the icy gauze pads went on and the eye drops went in and the day wore on, it was becoming obvious that the signs of single vision that Star had been holding on to for all these months just weren’t there. In fact, she was becoming aware that not only did she still have double vision – but it was a different kind of double vision. Now, instead of having things doubling up side by side, things were starting to double up above and below. What was once two heads of me, side by side, became two heads of me, one on top of the other.

This was NOT good. Star was heartbroken, and I was Pollyanna and Annie rolled into one: “The sun’ll come out…tomorrow…”

The Day After (Tuesday)

But then this morning, “tomorrow” was here, and the sun was not.

The surgery has been done, but Star is still seeing everything double – except for hope…which she can’t see at all right now.

I think we all need to start seeing double hope for her right now—and holding onto that double dose for her during the next 2 days, then through her Thursday doctor appointment, and for whatever will be facing her after that.

She’s as down as I’ve ever seen her (and those of us who are faithful readers of her blog know how hard she’s tried to stay “up” through all this – and more!), and as tough as it is for a self-sufficient gal like her, I think she needs to hear from us all & really truly believe we care about her.

If you can take a moment to send Star some genuine thoughts/wishes/prayers (no empty aphorisms or cheerleader platitudes, please!), that would mean a lot right now.

My hope is that we’ll be getting an update from her real soon with much more promising news!

Dee

(tues. 4/19/2011)

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Nine months ago I woke up with double vision.  As disconcerting as that was, I thought, “Well, I’ll get up and in a couple of hours it will be gone.”  A week later that changed to, “As soon as I see the eye doctor, it will be gone.”  And then a month later, it changed again to, “The endocrinologist will give me some medicine and then it will be gone.”  And I was wrong yet again.

As many of you know by now, the double vision led to the discovery that I had Graves’ Disease and its trusty, sometimes companion, Graves’ Eye Disease.  Through medication the Graves’ was quickly gotten under control.  The eye disease – not so fast.  When I was finally sent to an eye surgeon, I was met with the news that yes, it could be helped by surgery, but not until the disease had “run its course.”  That was more months ago than I care to count.

Meanwhile the double vision has changed my life in so many negative ways.  It has made every single thing I do more difficult, from driving to reading to walking down the stairs.  It has affected my self-esteem drastically.  I feel like one of my eyes looks a bit “off” and it has made me self-conscious.  I don’t look people in the eyes like I used to.  Going outside without sunglasses is out of the question because the brightness of all the many images I see tends to make me dizzy.  And when I drive, I have to wear sunglasses with one eye blacked out or I wouldn’t be able to manage at all.  My depth perception has been severely compromised, causing me to bump into things a lot.  And, athough I’ve been determined that I won’t let it affect my friendships, I do find myself staying closer to home more often.

I was scheduled for surgery March 21st and the week before, I ruptured a disc in my back which compressed my sciatic nerve, leaving me hardly able to walk, and I had to cancel.  It broke my heart.

So, here I am again, scheduled for surgery Monday morning.  I have to be at the surgical center at 6:30 a.m. so it will still be dark outside.  Probably by 10:00 a.m. they’ll be sending me home again. It’s odd to think that such a monumental thing in my life will be determined in such a short time.

To say that I’m praying for a complete success is the understatement of the world.  The doctor said that 90% of the time the surgery works perfectly the first time.  For the other 10%, a second operation is required to “tweak things.”  I believe that God is going to see me through this and everything will turn out exactly the way we’re hoping.  And, no matter how red and ugly my eyes look afterward, no matter how much they itch and hurt, as long as I see things normally, I won’t complain.  In fact, I’ll probably be literally dancing with joy!

This IS a big deal.  The surgeon will be cutting my eye muscles, repositioning them and then sewing them back up.  Anything can happen.  And then there’s the anesthesia, which always carries risks.  But I’m not concentrating on those things.  The way I look at it, if I don’t wake up, I’ll never know, so why stress about it?

As for my next post, I’ll play that by ear.  According to my schedule, it should appear Tuesday, but that would mean writing it Monday and I doubt that will happen.  So, please bear with me.  My dear friend, Dee, will be taking me, bringing me back home, and staying a bit to be sure I’m okay.  I’d love to get her to write a “guest post” updating you all, but that will be up to her.  She’s already going over and beyond what I deserve.  So, if I’m a day or so later than usual, you’ll know what’s happening.  I ask for your patience and that you not forget me.  And, if you have a spare prayer or two you could throw my way, I’d be mighty grateful.  Wish me luck.

Love,

 

 

 

 

 

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You can take the title of this either way.  It was indeed a weird encounter.  But I’m also beginning to think it was an encounter with a weird doctor, as well.

I wrote about having an MRI which revealed that I had a ruptured disc which was compressing my sciatic nerve, which runs all the way down my leg.  That’s why I could not stand up straight and why I was limping.  I was sent to a pain management center at a hospital to get a spinal epidural steroid injection.  When I met the pain doctor, he was very friendly, understanding and informative, explaining about ruptured discs and what they were going to do that day.  At the time I was in so much pain that I would have believed the moon was purple. I just wanted him to get on with it!   Right before I was sedated he told me that for some people one shot was sufficient, but for others, it took two to really have an effect.  So he’d see me again in two weeks and we could determine at that time if I needed another.

When I got up off the table (who knows how much later?) my back pain was gone and I stood up straight for the first time in five days.  The leg was different matter.  Long story short, it improved a bit, but then stopped and was throbbing in my shins to the point where it was waking me up in the middle of the night…every night.

As I neared the second appointment, I was pretty sure I’d need the second shot.  Then a funny thing happened the night before.  I was watching TV and was looking up sciatica on the Internet where I read that some gentle stretching exercises were very helpful.  I doubted I could do them, but on the next commercial, I got down on the floor and tried them, VERY GENTLY.  Then I went back to what I had been doing.  A moment later I realized…the throbbing had stopped! And it didn’t come back.  Weirdest thing I’ve ever experienced.

Meanwhile the pain clinic had moved forward, assuming I’d have another “treatment,” even to the point of calling the day before to remind me not to eat or drink after midnight.  When I saw the doctor, I told him what had happened.  He looked surprised and, if I’m not mistaken, a bit disappointed.  He frowned and said, “You have a pretty seriously ruptured disc there and make no mistake, exercise won’t help and steroid shots or medication won’t cure it.  As a matter of fact, if it acts up after a second shot, I think we should call in a back surgeon.”  He then asked me if I wanted to get a second shot “just in case.”  I told him that since I wasn’t feeling any pain at the moment, I didn’t see the point.  I asked him about some pills he gave me and he said I could stop them.  Actually, I think I ruined his whole day.  Now here’s the weird part.  I went home and did some more research and according to many sources, this one being Cedars-Sinai Hospital:

More than 90% of patients who have a herniated disc will improve within six months after nonsurgical treatment. For this reason, nonsurgical treatment is usually tried before surgery is considered. Nonsurgical treatment usually includes:

* Rest, followed by a gradual increase in activity

* Medication to control pain and inflammation

* Exercises recommended by the doctor or physical therapist to help reduce pain and strengthen the muscles that support the back

In some cases, herniated discs heal on their own by a process called resorption. During resorption, the body absorbs parts (fragments or tissue) from a herniated disc that has ruptured.

Surgery may become necessary in only a small number (less than 10 percent) of people who have herniated discs. Surgery may be considered for people who have progressive nerve damage or severe weakness or numbness or for those whose pain has not been relieved by other methods.

Almost EVERYTHING he said to me was contradicted by this, the Mayo Clinic, Web M.D., etc.!  What am I to think?  Oh, and I stopped the medicine he told me to stop and had a very bad reaction a couple of days later.  I found out you’re not supposed to stop it abruptly!  It says:

If you suddenly stop taking Gabapentin, you may experience withdrawal symptoms such as anxiety, difficulty falling asleep or staying asleep, nausea, pain, and sweating.

I had all of those except the sweating.

So what’s the deal?  Who can you trust?  Could it be that this doctor gets a kickback or commission on these epidurals?  Before you scoff, let me tell you what just one costs.  $2,290.63 !!!!!!  No, I’m not kidding.  Something to think about, isn’t it?



 

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Okay, so here’s the deal.  I was going to write a post for my regular “Five Good Things” series and…I was coming up blank.  It’s not that I don’t have good things, but I’ve already written about all the obvious ones like birds singing and good friends and sunrises, etc.  And when you’re looking at the world with damned double vision and your leg hurts with every step you take, and you’re feeling a bit hopeless and unloved, it’s a bit harder to find the more subtle things.  So, I decided to make lemonade out of lemons. So here are my:

FIVE GOOD THINGS

(ABOUT GOING THROUGH HELL)

1) You learn patience. Once you’re sucked into the medical establishment, you’ll soon discover that everything is “hurry up and wait.”  You’re expected to get to your appointments early, but the doctor isn’t necessarily expected to see you right on the dot…or even near the dot, for that matter.  I’ve learned that you can go to almost any pharmacy in the country and be spouting blood through every orifice as you hand the pharmacist your prescription and most likely he/she will say, “it will be about 45 minutes.”  No matter what kind of pain you’re in, never forget, you’re just another number.

2) You REALLY learn who your friends are. Let’s face it, a friend who has a medical challenge that goes on and on is really no fun.  When someone asks me lately how I’m doing, I can lie and say that I’m fine, in which case a real friend can tell I’m lying to them.  Or I can tell them the truth which is that I feel like shit (in hell, remember?) and then what can they say?  That they’re sorry?  I know they are.  It’s much easier to just “forget” me for a while.  I get that.  But, believe it or not, some don’t.  Some check with me regularly and they’re not just being polite.  They really, truly, CARE how I am.  Certain ones, who will remain nameless, get bossy and tell me to get my ass on the sofa and REST for God’s sake!  Such kindness makes me want to cry…and also makes me love them.

3) You become grateful for the smallest kindnesses. After dealing with doctor’s offices and pain clinics and pharmacies, you become used to being just a piece of meat.  After all, they have so many people to see in a day that its unusual for them to become emotionally involved.  The hard part of this is that when you’re really suffering, you feel so vulnerable.  I’ve actually had two or three people go out of their way to be nice to me and let me tell you, it meant the world to me.  There was Brenda, who pushed and begged and wheedled to get me an appointment at a pain clinic that same day so that I wouldn’t have to go a sixth night without sleep.  I know it was her job, but still, she became a hero to me.  And there was Janet, the hospital scheduler who helped me cancel my eye surgery that I had been awaiting so desperately.  She took time to comfort me and assure me that we were only postponing it and that they couldn’t take a chance with my eyes.  She said she knew how hard it was and that her heart ached for me.  A medical person said that!  I was so touched that I ended up telling her that I loved her, not in Lesbian way, you understand, but loved her nonetheless.

4) You become stronger. I know darned well that if I ever make it through these present challenges, it will take a heck of a lot to shake me in the future.  When I’m through with this, I’ll probably be able to catch bullets in my teeth!  And maybe leap a tall building or two.  Just watch me!

5) Your faith kicks in, big time. I have a good friend who says this experience I’ve been going through, what with the eyes and the teeth and then the ruptured disc, reminds him of the story of Job in the Bible.  Job, if you’ll recall is the poor guy who had about every kind of tragedy visited upon him and yet would still not turn against God.  In the end God rewarded him with all that he had before and more. (I always wondered if that meant that his wife and daughters came back to life (which would be creepy) or if he got new ones, in which case the first ones got a bum deal.) Anyway, there have been times when I’ve questioned why all these things have happened to me, but I never thought of blaming God.  I do believe there’s a reason for everything, even though humans often can’t see the forest for the trees.  I’m going to hang in there, no matter how hard it is, because I believe that my particular miracle could be just around the corner. Yep, that’s my truth and I’m sticking with it.

 

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When last I posted I was exhausted from being in pain and walking hunched over for almost a week and being unable to sleep.  I was due for an MRI the next day.  This picks up where I left off…

Tuesday morning I was at the MRI place bright and early for my 7:00 a.m. appointment. When I was undressed and taken to the room, a problem emerged.  I couldn’t lay flat on the table!  Every time I tried, the pain took my breath away and my body popped right up.  They gave me a variety of pillows and pads and nothing worked.  My eyes filled with tears and I said, “I HAVE to make this work!”  Finally, after about ten minutes, I found a position which was still painful, but bearable.  The MRI lasted at least thirty minutes and my back felt every one of those minutes.  After it was over, I limped, hunchbacked, to my car and went home.

Once in a while people surprise you.  When I got home, I called the scheduler, Brenda, and left a voice mail telling her the MRI was over and when the results should be in.  I asked her to please let the doctor know, so that, maybe, just maybe I could get into a pain management center that day.  I really didn’t expect much.  I mean, she’s dealing with many cases and I was just one.  But at 9:50 a.m. she called me and said that she had had to call several pain places and tried to wheedle an appointment for me that day.  Most were full, but she managed to do it!  She said, “You have an 11:15 appointment at the hospital and you must have a driver.”  OMG!  I had about ONE HOUR to get a driver and get there!

This is where you find out who your true friends are.  Iris was the only person I could think of who could make it in the time frame.  But, what a favor to ask!  However,  I had no choice.  I called her and said, “Iris, my dear, dear friend.  I have an emergency.  Can you drop everything, hop into your car, pick me up and drive me to this hospital up North?  I know it’s a lot, but it’s a chance to get me out of pain.”  She didn’t even hesitate, just said, “Let me get my clothes on and I’ll pick you up by 10:30.” And she did, bless her.

After filling out a huge volume of paper work, I got in to see the doctor.  He gave me the results of the MRI.  I had ruptured a disc! He proposed giving me an epidural steroid injection and prescriptions for a different pain medicine than I’d had and a nerve medicine which helps damaged nerves.

This epidural thing is a bigger deal than I knew.  It’s not just a shot.  First they gave me a sedative. Then they took me to a room with a special machine that would allow them to guide the needle to the exact place where it was supposed to be.  They wanted me to lay face-down on on the table.  Another problem.  Every time I tried, my back went into a spasm.  It was a nightmare.  I tried so hard and each time, my body rebelled.  They gave me more sedative and I finally managed.

Next thing I knew, I opened my eyes and a nurse was frowning at me and almost yelling, “What is the number of your pain?”  I was still disoriented and asked.
“Where am I?”  Finally it came to me.  Before I left, two nurses and the doctor had warned me that I wouldn’t magically be cured immediately.  They said that it takes 24 to 48 hours for the steroid to kick in.  Despite that, when I got off the table, I could stand upright!  That part was a miracle! My leg still hurt when I walked, but…baby steps.

Twenty-four hours later my back is still good.  The leg still has pain when I walk, but it might be fading a bit.  They gave me a discharge sheet and number 5 on that list said: “You may experience increased pain and muscle spasm for 24-48 hours after your injection due to the trauma of the injection itself.” I’m hanging on to that.

Now the BAD NEWS and it’s really bad. My eye surgery had to be rescheduled! That broke my heart, but my eye surgeon and pain doctor agreed.  The biggest risk of the eye surgery is infection and the steroid I received lowers the immune system.  It is what it is.  So now it’s scheduled for April 18th.

I apologize that this post is so long and promise it will be the last medical one for a while.  Thanks for sticking with me.

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My Downward Spiral

I usually schedule my posts two or three days ahead of real-time, which is great in keeping me from feeling any stress to “produce.”  But in the present case, you’ve been reading nice, pleasant little pieces in my blog while in real life I’ve been in real trouble, feeling more miserable than I ever imagined possible.

About a week ago I started having a back problem which I just sloughed off as “a catch in my back.”  Then it got to where a couldn’t bend over to put on my shoes without pain and it began to get my attention.  But a couple of days later, last Thursday night to be precise, a very weird thing happened.  The back problem just disappeared to be immediately be replaced by a horrible pain in my right buttock that ran all the way down my leg.  Suddenly, I couldn’t stand up without excruciating pain.  Thursday in the middle of the night I got out of bed to go to the bathroom and it was like I was being electrocuted the minute my right leg touched the floor.  I ended up on all fours on the bathroom floor, scared out of my wits.  Getting up again took courage because the pain was there just waiting.  I finally crawled back to bed, debating whether or not to call 911.  I decided to wait until morning.

In the morning, I looked up the symptoms and came up with something called “sciatica,” which could be caused by all sorts of things, but the one that rang true for me was a pinched sciatic nerve, which runs from the buttocks all the way down to the ankle..  All day Friday I tried to stay prone as much as possible.  When I HAD to get up, I had to walk hunched over, which has become my permanent position.  I did all the things I could think of – rubs, heavy pain pills, heat, cold, and massage.  Nothing helped.

Saturday it was so bad that fear drove me to the Urgent Care Clinic at my doctor’s office.  The doctor who saw me confirmed my diagnosis.  I asked him about cortisone shots I had read about which relieve this kind of situation.  He said that first we had to try medication.  He wrote prescriptions for heavy-duty pain pills and muscle relaxants.  He said if they didn’t help significantly by Monday, he wanted me to call the office to be scheduled for an MRI. I left with hope that maybe all I needed was the pills.

They didn’t work.  They didn’t touch the pain – not even a little bit.  I’m writing this on Monday and I haven’t slept through the night since Thursday.  When I called for the MRI first thing this morning, the bureaucratic red tape kicked in.  The soonest I could get in was Tuesday at 7:00 a.m.  It’s like “So sorry, suffer a little more!”  And if it does, indeed, turn out to be a pinched nerve, I’ve found out the doctor can’t give me an epidural.  O no, that has to be administered by a “pain management center.”  God knows when I can get an appointment there.  Naturally!  It’s like there’s always one more wall between me and relief.

By the time you’re reading this I could either have received some help at long last, or else am still waiting for yet someone else to see me.

But I have to tell you, as I’m writing this on Monday night, I am feeling beyond hopeless.  I’m supposed to have my eye surgery next Monday, but I can’t even think about that, what with all the pain that I feel  just walking through my house.  Sometimes I crawl.  I can not stand up straight.  Picture that for a minute.  I have to hunch over all the time! At the doctor’s office just walking from my car into the building almost killed me.  My world has become the pain.  At night I lie totally still and can feel the pain throbbing through my leg.  I don’t know how much more of this I can take.

I really, truly don’t.

 

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A couple of posts ago, I wrote about how I feared my double vision was now beginning to affect my appearance and how very sad and depressed that made me.  Well, a week ago Thursday I was scheduled for my second visit with the occulo plastic surgeon, Dr. L.,  to have him check the progress of my Graves’ Eye Disease.  On one hand, I was eager to go because anything that takes me closer to being cured is good.  On the other hand, I was worried that he might discover that my eyes were getting worse.  If that was the case, we’d start the checks all over again.  Sigh.

Naturally, by the time of my appointment, the streets, which already had a layer of ice from the night before, were being coated by a heavy snowfall.  But, I gathered up my courage and determination and hit the streets.  When I slid half-way into the intersection at the first stop sign, I wondered how wise it was to keep the appointment, but it had been seven weeks and I just didn’t want to reschedule. What should have been a ten minute drive took almost thirty.

Once there, I was ushered into a room and he came in shortly.  Immediately he started going through the drill.  He had me look left, and then wrote something in his computer, then right, then up, then down.  He then held up his finger and went through most of it again.  On and on he went, not saying much more than, “That’s the same.  That’s the same.”  Finally, he settled down with his computer and started typing.  I’m just sitting there, waiting for him to remember he has a patient in the room while it appears he’s writing his memoirs.  Finally, I could stand the silence no longer.

ME: “Uh, is it bad?”

DR. L.: “Oh no.  Most of the readings are the same as they have been.  I think we’re ready for surgery.”

ME: “Uh-huh.  Wait a minute!  Say what you just said again!”

DR. L.: “I said that I think we’re ready for surgery.”

ME: “Oh.  My.  God!”

I had been praying for this for so long , but when I heard him say it, I felt like a deer trapped in the headlights.  I was stunned.  Absolutely stunned.  I thought I’d be waiting A LOT longer.  All I could do was ask him to tell me about it.

He explained that, due to the nature of my problem, he’d have to operate on both eyes and do it under general anesthesia.  But I was glad to hear that it would still be an outpatient process.  He warned me that Graves’ Eye Disease patients are difficult because the inflammation of the eye muscles often leaves scar tissue.  Consequently, there’s a 10% chance that the surgery won’t be perfect the first time.  He may have to do a second operation to “tweak things.”  But that means there’s a 90% chance it will work out perfectly.  (I want to be in THAT group, please!) He said that my vision straight on and looking down should go back to normal.  Not so for sideways.  But I figure that’s okay because I could drive and read.  I don’t mind having to turn my head.  We left it with him telling me that his scheduler would get pre-approval from my insurance company and contact me in the next several days.

So, I went back out into the snow storm, got into my car, and broke down in tears.  I thanked God for hearing my prayers and then very cautiously drove home.  I’ve wanted to be cured for so long that it still hasn’t sunk in that this is going to happen.  I’m not sure when, but I imagine it will be this month.

So, my dear readers, the ball has started rolling…  I just thought you’d like to know.

 

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