Please consider donating to my medical expense fund. Surgery is expensive. So is recovery! http://www.youcaring.com/medical-fundraiser/carolyn-s-surgery-fund/36820 Thank you so much to everyone that has donated! This wouldn't be possible without your help!!!
______________________________________________________
Today marks 3 weeks since my operation. Yesterday, I got out of the house for the first time--went to Portillo's for dinner with my mom and stepdad. There's a lot of sensory overload in the outside world, but it was really good to get out. This would have been inconceivable just one week earlier, when I was barely conscious all day, wondering if I would ever be well enough to get out of the hospital and get back home.
Today, my mom washed my hair--carefully, with the bandage covering up the incision. The stitches are still in for one more week. Can't wait to get them out!
I've been gradually building up the amount of active time each day. I have to be so careful, because if I overdo it, especially in the early hours of the day, I pay for it later with reduced consciousness. But I have started getting some things for myself (some of my food and water refills). I've also gradually built up my time on the recumbent bike. Today I rode for 11 minutes, two times.
My tachycardia is improving very gradually. But my blood pressure has been stable since discontinuing all muscle relaxants on Tuesday. That means I've been conscious all day for three full days! :) I'm not saying I'm 100% alert all day, or that I would make a great conversationalist at noon. But, I'm awake, aware of my surroundings, and able to respond when called all day. (This is with the help of Midodrine and Florinef, along with salt pills, to keep my blood pressure up.)
The muscle tightness in my neck and shoulders is still problematic, and quite painful. I haven't had a full-blown migraine since Sunday. Just migraine-like pains from the muscle contractures. I'm trying to arrange to have dry needling sessions in May to alleviate this. Until then, it's heat packs, icy hot, and massages.
I've been noticing that I sometimes have started swallowing air with my water again. I'm trying to ignore this fact for now.
The most difficult thing has been that my beloved dog, Jango, has become very sick, suddenly. He has some neurological symptoms, and he frequently cries out in pain. I have cried most of the day today, because it is so hard to watch my happy little buddy become so miserable. We know there isn't much time left for him. Watching Jango in pain gives me even more appreciation for my caregivers. Watching someone you love suffer is so painful. And my caregivers are amazing! I am so lucky to have such wonderful support.
I am also grateful every single day that I survived this whole ordeal. This hospital stay did some damage to me, physically and psychologically. But healing is possible. I will get stronger. The psychological wounds may take a bit more time to heal...
Sorry to end on a down note. I am an emotional wreck. But I am so happy to see little improvements in myself each day. Recovery is slow, as expected, but improvements are still noticeable.
Thursday, April 4, 2013
Tuesday, April 2, 2013
Unpredictable Recovery
Please consider donating to my medical expense fund. Surgery is expensive. So is recovery! http://www.youcaring.com/medical-fundraiser/carolyn-s-surgery-fund/36820 Thank you!!!
________________________________________________________
It's not like this is my first major surgery. But it seems like it, since my body is reacting so differently this time. So many unexpected complications and problems. The primary unexpected problem has been adverse reactions to medications that I tolerated only 3 years ago. I have developed severe episodes of hypotension/loss of consciousness after taking several medications. The medications that have caused this problem in the last 3 weeks are: Morphine, Oxycontin, Flexeril, and Zanaflex. Basically, the good pain meds and the muscle relaxants are all out. That makes recovery very challenging!!! But these episodes are so scary, for me and for my family, that I am scared to take anything for pain and muscle spasms.
It is really hard to face this recovery without pain meds or muscle relaxants. The muscle contractures and spasms are so severe that they are triggering migraine-like pain and actual migraines. So, I'm in a lot of pain most of the time. I use heat on my neck and shoulders, along with topical creams and massages. If anybody wants to give me a massage, any day of the week, I welcome it! I wish I could afford daily massage therapy. It helps reduce the pain dramatically. But, of course, insurance doesn't cover my massage therapy. Also, when I am well enough to go back to Milwaukee, I have a physical therapist that does dry needling therapy on my muscle contractures. I'd really like to get back to her as soon as possible.
The last complication to deal with is the POTS symptoms. I wake up with my heart going 105 bpm. It peaks around 140 standing, 120 sitting. It's worst in the mornings, then gradually decreases throughout the day. By the evening, my heart rate is at a happy 72 bpm, and I can finally catch my breath. I'm taking Florinef and Midodrine for my POTS. And I'm using the recumbent bike to try to improve my conditioning. I also take salt and high fluid intake throughout the day...all just to get my cardiovascular system to calm down. The POTS will take months to improve, but I've gotten better before, and I can do it again.
I haven't ever had to recover from this major surgery without pain meds and muscle relaxants before. So, that is my new challenge. It is a long, long road. So, I'll just keep going. My family has been amazing with their support. I am so incredibly lucky to have them to help me through this. Thanks to them, my attitude has remained quite positive most of the time. As long as I can remain conscious throughout the day, I feel like I can get through anything. Although I really hope to not get another migraine that reaches a 10 on the pain scale. That would bring anyone down.
________________________________________________________
It's not like this is my first major surgery. But it seems like it, since my body is reacting so differently this time. So many unexpected complications and problems. The primary unexpected problem has been adverse reactions to medications that I tolerated only 3 years ago. I have developed severe episodes of hypotension/loss of consciousness after taking several medications. The medications that have caused this problem in the last 3 weeks are: Morphine, Oxycontin, Flexeril, and Zanaflex. Basically, the good pain meds and the muscle relaxants are all out. That makes recovery very challenging!!! But these episodes are so scary, for me and for my family, that I am scared to take anything for pain and muscle spasms.
It is really hard to face this recovery without pain meds or muscle relaxants. The muscle contractures and spasms are so severe that they are triggering migraine-like pain and actual migraines. So, I'm in a lot of pain most of the time. I use heat on my neck and shoulders, along with topical creams and massages. If anybody wants to give me a massage, any day of the week, I welcome it! I wish I could afford daily massage therapy. It helps reduce the pain dramatically. But, of course, insurance doesn't cover my massage therapy. Also, when I am well enough to go back to Milwaukee, I have a physical therapist that does dry needling therapy on my muscle contractures. I'd really like to get back to her as soon as possible.
The last complication to deal with is the POTS symptoms. I wake up with my heart going 105 bpm. It peaks around 140 standing, 120 sitting. It's worst in the mornings, then gradually decreases throughout the day. By the evening, my heart rate is at a happy 72 bpm, and I can finally catch my breath. I'm taking Florinef and Midodrine for my POTS. And I'm using the recumbent bike to try to improve my conditioning. I also take salt and high fluid intake throughout the day...all just to get my cardiovascular system to calm down. The POTS will take months to improve, but I've gotten better before, and I can do it again.
I haven't ever had to recover from this major surgery without pain meds and muscle relaxants before. So, that is my new challenge. It is a long, long road. So, I'll just keep going. My family has been amazing with their support. I am so incredibly lucky to have them to help me through this. Thanks to them, my attitude has remained quite positive most of the time. As long as I can remain conscious throughout the day, I feel like I can get through anything. Although I really hope to not get another migraine that reaches a 10 on the pain scale. That would bring anyone down.
Tuesday, March 26, 2013
Home from Surgery
I have never been so glad to be home!
My Cranio Cervical Fusion Revision on March 14 did not go smoothly. It was the most harrowing experience of my life.
There were several complications. It started off with a difficult intubation. Since my neck is already fused, I have to have a conscious fiber-optic intubation. I remember the difficult process clearly. They spray your throat to numb it, first. Then, they try to put the breathing tube in while you're still awake. It apparently did not go well. My throat was really torn up in the process, causing a lot of inflammation. Due to this inflammation, they had to keep me under anesthesia for 7 additional hours, after a 9 hour operation. Being under for 16 hours was a really bad start.
I woke up at 4 AM the next day during the extubation, which was horrible. But as much as my head and neck hurt from surgery, and as sore as my throat was from being intubated, my number one complaint the first day was my burning eyes. By the end of that day, I had an explanation, which was that during the long operation, I developed corneal abrasions all the way across both eyes. The pain was unbearable. My eyes are still red and healing now, 12 days after surgery.
My POTS (Postural Orthostatic Tachycardia Syndrome- a form of autonomic dysfunction) got a lot worse after my long surgery. There were multiple triggers for my POTS, including 16 hours of anesthesia, changes in medication, fighting off a virus, and a lot of sedentary time. So, my heart rate and blood pressure became very unstable, with episodes of very high tachycardia and quite low blood pressure. My heart is also very reactive to every movement I make.
The hardest part came days 5-7 in the hospital. After making some progress in terms of moving around and starting to heal, I spent Tuesday through Thursday fighting for consciousness. I never got a solid explanation for what was wrong. Could have been severe POTS or a reaction to the pain medication (even though I only took pediatric doses of anything, and I've tolerated these meds fine in the past). I felt like I was under a heavy blanket of fog that I couldn't get through. These days were so long, and the darkest days of my life. I felt my heart straining, with a constant feeling of palpitations. There was a fear at this time that I would never fully regain consciousness. The doctors really never explained what went wrong. I kept telling my family that I didn't want to be intubated again, and I didn't want a feeding tube. "No Tubes!"
Thankfully, on Thursday, late afternoon, I started to come out of it. A substantial part of waking up was my husband deciding to give me my usual dosage of salt for my POTS. They didn't give me this at the hospital. I became a bit more alert and aware of my surroundings. I did my PT. I got the last of 4 drains removed that night. I was released on Friday afternoon-9 days in the hospital. Due to these complications, my family had to extend their travel plans. We had expected to fly home by Thursday, but couldn't leave until Saturday. So, flights had to be changed (which was incredibly expensive) and hotel and car reservations had to be extended. I was just so relieved to be getting out, after thinking that this hospital stay may have lasted for weeks.
Our travel day was difficult. Our flight was delayed, so we didn't get home until 3 AM (which felt like 4 AM to us). The pain was intense.
Ever since Tuesday (4 days after surgery), I had to switch to taking only Tylenol for pain. Any other medication could have potentially contributed to my reduced consciousness. The pain is intense. The Tylenol brings it to a just tolerable level, most of the time. The worst pain is where my old rods were removed (using all sorts of fun tools like bone saws and chisels). There was a lot of destruction in those areas, and a lot of healing is needed. I have a constant ache with frequent sharp pains in these areas. The other major pain is from muscle spasms in the neck and shoulders. This will take months to loosen up, with massage therapy and dry needling. The muscle spasms cause migraine-like headaches.
Currently, my days are really unpredictable. I'm still having trouble with: skull pain, muscle spasm, tachycardia, episodes of reduced consciousness, burning eyes, numbness in various areas of my body, and regaining bladder control.
My POTS is so severe that I require salt pills and water spread throughout the day (basically like receiving IV saline all day). If I don't take the salt, my tachycardia gets worse, I get short of breath, my lungs start burning, and I tend to lose consciousness. Thermotabs are the only thing keeping me going at this point. Hopefully, my dependence will be reduced over the next few months of recovery.
With so many complications, it will take some time to see improvements to be gained from this terrible ordeal. So far:
-Swallowing seems to be improved--I can swallow water without swallowing excess air, and I can swallow pills without contorting into strange positions.
-Pupil reflexes are sometimes improved.
-POTS is worse, for now.
-Migraines are the same--I've had 2 migraines since surgery--The first was day 5 in the hospital. The second was our travel day and the following day.
-Pain and muscle spasm are worse, for now.
-Balance may be improved.
-Digestion seems to be improved--I'm still experimenting, so I'll update more on this once I know more.
Current plans:
Staple removal is this Thursday (just 2 staples where my last drain hole was).
Stitch removal is 2 weeks from Thursday. (They want them in for 4 full weeks.)
No lifting of anything over 5 lbs. for 6 months! It makes me feel completely helpless, but I'm not willing to risk the perfect positioning of this fusion.
I have been traumatized by this horrifying surgery, more than any past surgery. I get a wave of nausea thinking about hospitals and doctors. And I have an intense fear of losing consciousness again, feeling that I'll never be able to wake up.
So, I really hope this fusion last, because I'm not going back. I refuse. I'm too scared. I spent my 20's having surgery, needing surgery, recovering from surgery. I'm hoping to spend my 30's focused more on living.
Wonderful things about being home:
-I get to take my normal daily medications that they did not give me in the hospital, including my anti-depressant and my anti-anxiety meds. I will never understand why they don't administer these meds in the ICU. It's the most stressful time of your life, and your emotions get completely out of control without your daily meds that help you to stay stable.
-I don't get woken up every hour of the night for: blood pressure checks, Heparin shots in my stomach, finger pricks for blood glucose checks, bright lights in my eyes to check my pupils, and medication that I definitely don't need to take in the middle of the night. I get to sleep as much as I want, which makes my POTS more manageable.
-I get to eat real food. Seriously, the first night out of the hospital, it was like a flavor explosion in my mouth!
-My dogs are here :)
My Cranio Cervical Fusion Revision on March 14 did not go smoothly. It was the most harrowing experience of my life.
There were several complications. It started off with a difficult intubation. Since my neck is already fused, I have to have a conscious fiber-optic intubation. I remember the difficult process clearly. They spray your throat to numb it, first. Then, they try to put the breathing tube in while you're still awake. It apparently did not go well. My throat was really torn up in the process, causing a lot of inflammation. Due to this inflammation, they had to keep me under anesthesia for 7 additional hours, after a 9 hour operation. Being under for 16 hours was a really bad start.
I woke up at 4 AM the next day during the extubation, which was horrible. But as much as my head and neck hurt from surgery, and as sore as my throat was from being intubated, my number one complaint the first day was my burning eyes. By the end of that day, I had an explanation, which was that during the long operation, I developed corneal abrasions all the way across both eyes. The pain was unbearable. My eyes are still red and healing now, 12 days after surgery.
My POTS (Postural Orthostatic Tachycardia Syndrome- a form of autonomic dysfunction) got a lot worse after my long surgery. There were multiple triggers for my POTS, including 16 hours of anesthesia, changes in medication, fighting off a virus, and a lot of sedentary time. So, my heart rate and blood pressure became very unstable, with episodes of very high tachycardia and quite low blood pressure. My heart is also very reactive to every movement I make.
The hardest part came days 5-7 in the hospital. After making some progress in terms of moving around and starting to heal, I spent Tuesday through Thursday fighting for consciousness. I never got a solid explanation for what was wrong. Could have been severe POTS or a reaction to the pain medication (even though I only took pediatric doses of anything, and I've tolerated these meds fine in the past). I felt like I was under a heavy blanket of fog that I couldn't get through. These days were so long, and the darkest days of my life. I felt my heart straining, with a constant feeling of palpitations. There was a fear at this time that I would never fully regain consciousness. The doctors really never explained what went wrong. I kept telling my family that I didn't want to be intubated again, and I didn't want a feeding tube. "No Tubes!"
Thankfully, on Thursday, late afternoon, I started to come out of it. A substantial part of waking up was my husband deciding to give me my usual dosage of salt for my POTS. They didn't give me this at the hospital. I became a bit more alert and aware of my surroundings. I did my PT. I got the last of 4 drains removed that night. I was released on Friday afternoon-9 days in the hospital. Due to these complications, my family had to extend their travel plans. We had expected to fly home by Thursday, but couldn't leave until Saturday. So, flights had to be changed (which was incredibly expensive) and hotel and car reservations had to be extended. I was just so relieved to be getting out, after thinking that this hospital stay may have lasted for weeks.
Our travel day was difficult. Our flight was delayed, so we didn't get home until 3 AM (which felt like 4 AM to us). The pain was intense.
Ever since Tuesday (4 days after surgery), I had to switch to taking only Tylenol for pain. Any other medication could have potentially contributed to my reduced consciousness. The pain is intense. The Tylenol brings it to a just tolerable level, most of the time. The worst pain is where my old rods were removed (using all sorts of fun tools like bone saws and chisels). There was a lot of destruction in those areas, and a lot of healing is needed. I have a constant ache with frequent sharp pains in these areas. The other major pain is from muscle spasms in the neck and shoulders. This will take months to loosen up, with massage therapy and dry needling. The muscle spasms cause migraine-like headaches.
Currently, my days are really unpredictable. I'm still having trouble with: skull pain, muscle spasm, tachycardia, episodes of reduced consciousness, burning eyes, numbness in various areas of my body, and regaining bladder control.
My POTS is so severe that I require salt pills and water spread throughout the day (basically like receiving IV saline all day). If I don't take the salt, my tachycardia gets worse, I get short of breath, my lungs start burning, and I tend to lose consciousness. Thermotabs are the only thing keeping me going at this point. Hopefully, my dependence will be reduced over the next few months of recovery.
With so many complications, it will take some time to see improvements to be gained from this terrible ordeal. So far:
-Swallowing seems to be improved--I can swallow water without swallowing excess air, and I can swallow pills without contorting into strange positions.
-Pupil reflexes are sometimes improved.
-POTS is worse, for now.
-Migraines are the same--I've had 2 migraines since surgery--The first was day 5 in the hospital. The second was our travel day and the following day.
-Pain and muscle spasm are worse, for now.
-Balance may be improved.
-Digestion seems to be improved--I'm still experimenting, so I'll update more on this once I know more.
Current plans:
Staple removal is this Thursday (just 2 staples where my last drain hole was).
Stitch removal is 2 weeks from Thursday. (They want them in for 4 full weeks.)
No lifting of anything over 5 lbs. for 6 months! It makes me feel completely helpless, but I'm not willing to risk the perfect positioning of this fusion.
I have been traumatized by this horrifying surgery, more than any past surgery. I get a wave of nausea thinking about hospitals and doctors. And I have an intense fear of losing consciousness again, feeling that I'll never be able to wake up.
So, I really hope this fusion last, because I'm not going back. I refuse. I'm too scared. I spent my 20's having surgery, needing surgery, recovering from surgery. I'm hoping to spend my 30's focused more on living.
Wonderful things about being home:
-I get to take my normal daily medications that they did not give me in the hospital, including my anti-depressant and my anti-anxiety meds. I will never understand why they don't administer these meds in the ICU. It's the most stressful time of your life, and your emotions get completely out of control without your daily meds that help you to stay stable.
-I don't get woken up every hour of the night for: blood pressure checks, Heparin shots in my stomach, finger pricks for blood glucose checks, bright lights in my eyes to check my pupils, and medication that I definitely don't need to take in the middle of the night. I get to sleep as much as I want, which makes my POTS more manageable.
-I get to eat real food. Seriously, the first night out of the hospital, it was like a flavor explosion in my mouth!
-My dogs are here :)
Saturday, March 9, 2013
Wednesday, March 6, 2013
Surgery Coverage Denied!
Very bad news today. Insurance called me and informed me that surgery
is not authorized. I will spend the next 2 days making phone calls, but
it is very likely that surgery will need to be reschedule after
approval is attained. I cannot believe this is happening. Everything
is already set in place. Flights and hotels are booked. Family has
taken off of work. I've discontinued piano lessons with my students and
packed all of my stuff to move back in with my mom. Everything is
planned around this surgery date. I am officially freaking out, and I
feel completely helpless at this time. It will be up to my surgeon's
office to convince my insurance company that surgery is a medical
necessity. I don't know how to handle this one.
Monday, February 25, 2013
The Countdown is On
17 days until surgery!!! Yikes.
Here's a fun list of our expected medical expenses for this year:
Surgery with an out-of-network provider at an out-of network hospital
Flights to and from New York for surgery
Physical Therapy before and after surgery
Lodging for 10 days in New York
Rental car for 10 days in New York
New Aspen Collar
Massage Therapy after surgery
Dry Needling after surgery
DEXA scan before surgery
Also, we found out that our insurance premiums, deductibles, and out-of-pocket maximums have all been doubled this year. In addition, our out-of-network coverage has been lowered to 70%.
If you are able to help in any way with these costs, it would mean so much to us. My medical fundraiser page can be found here:
http://www.youcaring.com/medical-fundraiser/Carolyn-s-Surgery-Fund/36820
We are so grateful for your support!
---------------------------------------------------------------------------------------------
Updates:
Last week was torture. I had a migraine with pain level between 8 and 10 for five days straight. It killed me, and made me really scared for the upcoming surgical pain. But also hopeful that days like these may be less once my skull is stabilized.
Today, I had my DEXA scan. A simple test that consists of a few x-rays that is used to determine your bone density. In a week, I'll get the results to confirm that my bones are still strong enough for surgery.
This week, I have to say goodbye to my piano students, which breaks my heart. I won't be living in Milwaukee ever again! I'll spend recovery in Illinois, then move to Madison, with my husband. So I have to leave my students behind, which is really heart-breaking.
Next week, I have a doctor's appointment for surgical clearance. This is basically a very thorough physical with a complete blood work-up.
We leave for New York on March 12. Pre-surgical testing at the hospital in NY is the 13th. Surgery starts at 7:30 AM on the 14th.
I'll update again soon, as my thoughts are more and more consumed with anxieties, fears, maybe even a few hopes?
Hope things are going well, and thanks so much for checking in!
Here's a fun list of our expected medical expenses for this year:
Surgery with an out-of-network provider at an out-of network hospital
Flights to and from New York for surgery
Physical Therapy before and after surgery
Lodging for 10 days in New York
Rental car for 10 days in New York
New Aspen Collar
Massage Therapy after surgery
Dry Needling after surgery
DEXA scan before surgery
Also, we found out that our insurance premiums, deductibles, and out-of-pocket maximums have all been doubled this year. In addition, our out-of-network coverage has been lowered to 70%.
If you are able to help in any way with these costs, it would mean so much to us. My medical fundraiser page can be found here:
http://www.youcaring.com/medical-fundraiser/Carolyn-s-Surgery-Fund/36820
We are so grateful for your support!
---------------------------------------------------------------------------------------------
Updates:
Last week was torture. I had a migraine with pain level between 8 and 10 for five days straight. It killed me, and made me really scared for the upcoming surgical pain. But also hopeful that days like these may be less once my skull is stabilized.
Today, I had my DEXA scan. A simple test that consists of a few x-rays that is used to determine your bone density. In a week, I'll get the results to confirm that my bones are still strong enough for surgery.
This week, I have to say goodbye to my piano students, which breaks my heart. I won't be living in Milwaukee ever again! I'll spend recovery in Illinois, then move to Madison, with my husband. So I have to leave my students behind, which is really heart-breaking.
Next week, I have a doctor's appointment for surgical clearance. This is basically a very thorough physical with a complete blood work-up.
We leave for New York on March 12. Pre-surgical testing at the hospital in NY is the 13th. Surgery starts at 7:30 AM on the 14th.
I'll update again soon, as my thoughts are more and more consumed with anxieties, fears, maybe even a few hopes?
Hope things are going well, and thanks so much for checking in!
Tuesday, February 5, 2013
A Change is Coming
My surgical fundraiser page:
http://www.youcaring.com/medical-fundraiser/Carolyn-s-Surgery-Fund/36820
http://www.youcaring.com/medical-fundraiser/Carolyn-s-Surgery-Fund/36820
"Any change, even a change for the better, is always
accompanied by drawbacks and discomforts." —Arnold Bennett
So, emotionally, I’ve been dealing with the quickly
approaching major life changes. In
March, I will move out of my home with my husband, and back in with my mom and
stepdad. I will have to leave behind my
small piano studio and my students. When
my surgical recovery is complete, my husband will have moved to a new home
(location yet to be determined). So I
will not be able to return to our home or to my piano studio. When I leave in early March, I have to plan
to live in a new home for at least 6 months, away from my husband.
In the middle of March, I will travel to New York for 10
days for my surgery. As always, this surgery
brings a lot of anxiety. There is, of
course, the expected surgical pain and post-surgical complications. I have a fear of the moment when you wake up
from surgery to your new reality; the pain and new sensations that you feel,
and will continue to feel through the healing process. Along with this fear comes the hope of
improvement with healing. After four major
neuro-surgeries over the past 11 years, I know not to set my hopes too high. There is a potential for dramatic
improvement, and a potential for great disappointment.
So, what is reasonable to hope for?
Not a relief of all chronic pain. This has multiple causes, including EDS-related
body pain and chronic hereditary migraines unrelated to cranio-cervical
instability.
Not a relief of all POTS symptoms. POTS is also associated with EDS. It may improve, and it may stay the same.
Fatigue will probably linger, as well as food sensitivities,
IBS, back pain, and various other symptoms.
What can improve?
Any symptoms related to cranio-cervical instability have the
potential to improve.
The biggest ones I am hoping to see improvement of are the
periods of stupor, reliance on the collar and cervical traction, and increased
endurance for upright activity.
Other symptoms that could potentially improve are:
-episodes of nausea
-enlarged pupils
-swallowing problems, including choking and aerophagia (with
associated bloating)
-nighttime one-sided weakness and paralysis
-double vision, difficulty focusing eyes
-jaw pain and function
-dizziness and balance
Okay, I’ll stop there.
I don’t want to get carried away.
The surgery will take many things from me. I will miss out on at least 6 months of my
life for this. I will undergo more
traumatic times in the hospital and pain and discomfort after surgery. I will not be able to live with my husband
for at least the first 6 months. Also,
depending on where he moves, I may have to endure much of the recovery without
seeing him. But l know that it will be worth
it when I think through the things that should get better, and the many, many
things that could get better.
If I have improvement in just a few major symptoms, like my
upright endurance, my periods of stupor, and my dependence on traction, this
surgery will be worth it. With those
improvements, I could live a much more functional life. I could have more than one hour upright every
day. I could probably teach more piano
students and spend more time with friends and family. That would make it all worth it.
So, I’ll do everything I can to make that happen. I have to try.
Currently, my focus is on scheduling pre-surgical testing
and getting insurance issues worked out.
The cost of the surgery is so daunting, since so much of insurance
coverage is unknown. I’m also just
trying to enjoy the month I have left of my regular life.
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