Find a Friend

Having a chronic condition can get exhausting. It can dominate every thought and action. It can make you angry as Hell itself! It can even cause a sense of self pity if you let your negative thoughts ruminate too long. Some days can be just too hard to deal with. Sometimes that inner strength feels completely sapped. You can feel helpless, worthless, guilty and on occasion hopeless. You feel judged because so much is expected, yet you feel you just can't deliver.

I have gone through this "stage" of chronic illness numerous times throughout my life. It can stick around as little as a day, or as long as a couple of weeks. Plain and simple "It SUCKS".  However, I have come to realize that it's all part of the growing process. It actually helps you learn to cope.  It gives you stamina for the days ahead. Sounds a bit crazy doesn't it?  Well, it's really not.  There is a scripture that reads "all things work together for good..." Even those horribly bad moments in our life have a wonderful purpose. They mold and shape us into better and stronger people IF we allow it.

I find that when I'm going through those very hard moments in life it's so incredibly helpful to talk to someone. It can be a close understanding friend or extended family member, a counselor or support group member.  If you don't have someone in your life who will listen without judgement, then SEEK someone out!  You owe that to yourself.  My confidant is my childhood friend Mimi. She has MS.    We are always there for each other. We listen when the other is weak. We rarely give advice unless it's absolutely necessary. We just offer an ear and open heart. And we pray for one another. I feel it's healthy to have someone on the outside. The home can be stressful as it is and a family member such as a spouse or child may not be the wisest choice. If you are confined to your house and don't have anyone to talk to, seek out a support group on-line. There are so many options out there. I have benefited from this type of support many many times throughout my life.

I hope and pray that you find that special someone. It's imperative to have a friend to lean on and help you get through those very tough times.  And when you are feeling stronger, you in turn can return the support.

GMO's Is our American diet making us sick?

I have discovered some pretty amazing things about the foods we consume and perhaps why we feel so sick after we eat them.  It's been quite the process of elimination.  I first discovered that anything made of corn really bothered me. I would feel sick and really bloated shortly after eating. Sometime later, I decided to start an elimination diet.  I slowly stopped eating corn, then gluten, soy, some milk products and some fruits and vegetables. Strangely, I didn't feel any better.  One thing about our food is that these harmful ingredients can  hide in just about anything .  For Pete's sake, vitamins contain soy!
I then starting thinking hard about the way our foods are grown, and the way our animals are feed.  A light bulb went off! It's not the food, it's the GMO's!  So I read a few articles about genetically modified organisms. It seems that most of American grown corn, wheat, and soy are genetically altered. I began eliminating those foods along with processed sweets and white sugar. All I can say is "WHAT A DIFFERENCE IT'S MADE!"  My family who is gluten intolerant can now eat wheat as long as it's organic or imported from countries that ban GMO's.  It's also important to know that most of our zucchini, summer squash, and sugar beets are also GMO.  Read labels, all these products hide.
What I have found is that white sugar causes major inflammation in my body.   If I bake with organic sugar and organic flour I don't feel the side effects. Be aware, we are what we eat!

I think I've turned a corner.

Being diagnosed with EDS(Ehlers Danlos Syndrome) has brought many emotions to the surface of my life.  Part of me is relieved that my search is over.  There is a strange sense of closure.  I have had to accept some difficult realities.  I allowed my nursing license to lapse.  I have accepted the fact that I will no longer be able to return to my profession.  Even though in the back of my mind, I knew it was a long-shot, I still clung to hope.  Hope is a wonderful thing.  Even though things don't always work out the way you'd like, hope keeps you going in a positive direction. By nature I am a realist so I am accepting my limitations and trying my hardest to work within them.  I don't know what my future holds so I have to grasp each day and make the best of it.  I no longer want to postpone anything.  I have always wanted to visit Italy. It's my heritage and has fashioned me into who I am today.  I can't allow my limitations to stop me anymore.  I will figure out how I can accomplish it by my 50 th birthday.  My husband is concerned because I have trouble walking, but I feel, where there is a will, there IS a way.  I don't want to waste any more time.  Time has become very precious to me.  I want to spend it with those I love and with those who love me.  I no longer want to engage in anyone else's drama.  Drama causes stress, and stress causes more pain and even time spent in bed.  Over the past year I find myself less tolerant to stressors and stressful people.  I just don't want to be bothered with petty issues.  I want my life to be filled with purpose and laughter.  I want to be around positive, fun people.  Negativity is something that I have always easily absorbed from others.  I actually feel it physically. Perhaps some of these new found feelings and attitudes are a result of my accepting my condition and perhaps some just come with growing older.  I am beginning to feel a sense of freedom I have never experienced before and I think I like it.

And the winner is...........? Elhers-Danlos Syndrome

It's been many months since I blogged.  I can pretty much put a cap on it now.  I was referred to a geneticist in Cambridge Mass.  His name is Jeff Milunsky MD.  I went to his office in late March for an exhaustive exam.  They checked every square inch of me.  They took a very detailed exam of my family tree and all the major and minor symptoms from both sides of my family. They took blood.  My insurance would not cover some of the tests (but that's another story).  Anyway, the Doctor feels I have symptoms from two different types of EDS (Elher's Danlos Syndrome). Type 1 and Type 2.  Based on my mom and dad's history and symptoms they both must also have EDS, just different types..  I mentioned this in another post a few months back.  There is no cure and my personal treatment options are slim because of my drug sensitivities.  However, it puts a close to what seemed like the longest, never ending chapter of my life.  This may or may not help me but it certainly will help my children.  The condition has a 50% chance of passing to offspring. That explains a lot.  I am taking both of my girls in September to be evaluated.  Perhaps with an early diagnosis, they will be spared the pain and anguish I had to endure trying to convince doctors that there was something legitimately wrong with me. Both my girls have quite of few symptoms, although some are  different from my own.  I have noticed over the past year I have developed more issues with my joints. I surmise Father Time has a little something to do with it. I went to a Physical therapist and found out that the joints were subluxing. That simply means that they partially dislocate.  This causes a pain much like a tendonitis.  I am trying to learn how to put them back into place. The trial and era can be brutal. Once the joint gets put back in place, a massive inflammatory process begins.  This knocks my socks off.  Then roughly 24-48 hours later, my wrist or ankle or shoulder feel normal again.  The problem is that each day I awake with something different out of alignment.  It's annoying and tiring but I am going to have to learn how to deal with this.

Combatting Inflammation with a LOW CARB Diet

Well I got through the Holidays. Ate way too much junk. Gained a few pounds and payed the price with lots of inflammation.  I had the ALCAT Blood Test done per my Pain Doc.  The results made me sad. It took me a couple of months to accept the reality that I was sensitive to Sugar, Gluten, Garlic, Onions, Peppers, Artichokes, Coffee and a host of other beloved foods. I am now ready to give the new diet a shot.  I decided to do a high protein, low carb diet. This choice seems to fit best.  Having Chronic Lyme throws the immune system out of whack. Inflammation runs ramped. I was reading that not only do these food sensitivities cause inflammation, but Lyme bacteria feeds off sugar.  So I believe this approach may be an answer.  I have been on the diet for five days. It's tough!  I didn't know I was a sugar addict until I began.  The cravings are brutal. I also get headaches and increased body aches.  I read that this is all normal because I'm DETOXING.  I actually have moments that I feel like a true addict. I have to talk to myself and convince myself not to eat the gorgeous cupcake sitting on my counter.  I never looked at myself to have an addictive personality.  But man, this is hard work.  I take one day at a time. I draw on the support of the 4 F's.  Faith, Friends, FB and Family.  I need to do this. Not only for the weight but for my health. If it proves to work then this will need to become a lifestyle.

Being Thankful Regardless.

I couldn't get out of bed for a few days. When I mustered the energy, I went to see my primary physician who is also my Lyme doctor.  I told him the brief history from the summer months on. I explained about the oral surgery, the steroids and the antibiotics.  He totally agreed with me. Man, how often does that happen? We as patients can usually figure things out for ourselves. We live with the pain and symptoms every day.  Anyway, he told me that steroids are one of the worst things a doctor can give to a Lyme patient. It makes sense, because it shuts the immune system down and the bacteria go on a growing spree.  That's exactly what was stirred up in September.  After starting this second round of Doxycycline for the re-infected bone graft, the Lyme started to die off  and at the same time overloaded my body with toxins. This is what causes the classic Herxheimer reaction.  It basically feels like your body got rolled over by an 18 wheeler.  It's brutal. I just need to rest and keep flushing with fluids. So, at the very least, I know it's not the food sensitivities causing me to have this extreme pain. Although, I am sure my immune system will be much happier if I eliminate and cut back on certain foods especially sugar.   Now I just need to stay focused on getting through this flare.  Been down this path many many times.  Thank God I am going to my brothers for Thanksgiving.  I know I couldn't handle the holiday myself.  With all that goes on in a chronically ill persons life, there is always something to be thankful for. We have to work very hard to turn our thoughts away from our aching and broken bodies and look to all our blessings.  In doing that, it offers a bit of pain relief because our brain is only capable of  focusing on one thought at a time.  So count your blessings despite how crappy you feel.  ;)

A name for my other Mysterious Disease?

I know it's been a long time since I've blogged.  I was quite busy planning my daughter's wedding. It was a good distraction. The wedding was beautiful and the couple is very happy.
My "Lyme " pain persisted and the herbs did not work. I tried to ignore it and threw lots of pain killers and muscle relaxers at it. The warm weather moved in and I felt pretty good.  In August I needed a bone graft for a tooth implant. An infection eroded the bone in my jaw.  For 2 1/2 weeks post- op I was symptom free for the first time in like FOREVER!  I had no idea why but I was so incredibly excited. That excitement soon turned into disappointment when I figured out that the oral surgeon had given me dexadron.  Dexadron is a steroid. Steroid's reduce inflammation.  All my inflammation was gone, at least temporarily. But when the steroid wore off, the pain was back with a VENGEANCE!  I couldn't move my shoulder or elbow. At first, I wasn't thinking Lyme.  Lyme does not tend to stay to one joint. It tends to jump around.  The pain persisted and grew in intensity. Not even my pain meds were working.  I went to see my pain doctor. After talking and crying to him, he said he really felt I had EDS ( ELHERS DANLOS SYNDROME). It would explain a lot of the problems I've had all my life. All the crazy undiagnosed signs and symptoms. It's a genetic disorder. No surprise there. The collagen (the stuff that gives skin and tissues its elasticity and strength)) does not form properly. This explains the tethered spinal cord, the intestinal bleeding, the enormous amount of scar tissue found during my brain and spinal surgeries, my pre-mature old looking hands and a host of other problems like my stomach and esophagus issues.  BUT, my doc said it does not explain the severity of my pain in the joints. He felt the pain was too severe for EDS. So he was thinking that perhaps it's food sensitivity.  He sent out blood work (ALCAT) for testing.  Well, I almost started to cry when the results came back!!!! I actually didn't cry, but I wined for days!!!! I'm still whining.

Lyme Disease...It's Baaaaaaaaaaaack.

I had been feeling pretty good and seemed to be making some strides and then it happened.  I awoke with pain in my elbow.  What in the world could I have done? I thought maybe I just pulled a muscle. As the days went by, the pain began to creep. It moved to my back and then leg muscles, and then my knee and ankle joints started to hurt. The fatigue started to take hold. It was getting more difficult to get out of bed in the morning. That all too familiar stiffness snuck it's way back into my life. I tried to ignore it, but it persisted. After two weeks of not feeling any better, I drove to my Doc.  Yup....The Lyme was raring it's ugly head again. I had been symptom free for 3 years. I asked the phyician, "could my stomach problem possibly be caused by Lyme also"? To my surprize, he asnswered "yes".  He explained that there was a co-infection called Bartonella and that they are just beginning to explore this tricky little bacterium.  He said it can hide out in the mid-spinal region and reek havoc in the stomach.  I wonder if this is part of my problem.  I just had a bout of constant stomach pain and needed to have my esophagus dilated again.  It seems to be feeling better since the procedure.  I wasn't interested in taking antibiotics again. Been there, done that. Plus, antibiotics are so tough on my already cranky stomach. So, my Doctor put me on some Chinese herbs that are known to kill Lyme.  One of which I took years ago.  Today I started  taking the herbs again in hopes that the Lyme will leave me alone!  For those who are curious as to what I am taking....Houttuynia Cordata, Artemesia and Magnesium Malate.  Let's hope it works.....

Walking in the Windy City....

I really am happy. Although my pain is not completely gone, it is now tolerable and that is an awesome step in the right direction. I was very pleasantly surprised to have been able to walk as much as i did when I went to Chicago. My husband and I flew to the windy city to meet up with our son for "parent's weekend". We had gotten bus passes and what I thought was a hotel close to my son's apartment..... Our hotel was 5 blocks away!! I panicked slightly. I thought it was going to be too taxing on my body. I could not believe the amount of walking we did. But what was even more amazing was that I was capable of doing it. I think we must have walked at least 5 miles each day for 3 days! Now that may not seem like a big deal to you, but just months ago I needed a wheelchair to get through our small airport. I was in such bad shape that I couldnt even walk around the block without agonizing pain. Although I still had to take a little pain medicine, I was able to do it. In fact, my husband complained more about aches and pains the next day than I did! I am now down to Physical therapy every other week. I am riding my stationary bike daily without any discomfort. I have definitely made some pretty amazing strides and I pray I continue to do so. The surgery was a Godsend and I would do it again in a heartbeat.

The Negatives always seem to stand taller than the positives.

So this is my first post in over a month.  Things have been going quite well for me overall. I decided to write because I've been feeling like crap for 5 days now.  It's important to document the bad days so that others going through this aren't taken by surprise.  The Negatives always seem to stand taller than the positives, don't they?  Anyway, my body has been experiencing shooting nerve pain everywhere. This morning I awoke with an all too familiar feeling. My body hurt so bad that it even hurt to take a deep breath.  I have not felt that way in quite some time.  I am hoping that this is just a temporary setback and that it is simply a result of the crazy weather we have been having.  I have always been a barometer and I doubt that will ever change.  The other contributor might be that I have spent an enormous amount of time in my car.  I forgot to put my "Tush Cush" pillow on the seat and maybe the positioning threw me off.  I hate driving!  It causes me more pain than any other activity.  I do feel bad for my kids though, because they never really understood why I had to refuse them when it came to driving them here and there.  The weather is much dryer today so I am hopeful I will begin to feel better. I may never be completely healed and that is something I will just have to accept. I am just grateful for all the things I am able to do now that I have not been able to do in almost 20 years!

The Beginning of the End?

Well it's been a little while since my last post.  Life has been crazy. Probably the busiest summer I have ever had in my life.  Getting ready to bring my son to Chicago to start college.  Bitter-sweet. Well, actually more bitter!  I am NOT liking this stage of life right now!  The hustle and bustle of the summer has set me back just a bit. Of course slipping in my bathroom and landing in a half split hasn't helped either.  A lot of major stressors have been thrown at me lately and I do believe that when one is bothered mentally or emotionally, then it effects the physical body too.  So, I am going to give myself a  pass here and just wait it out.  Still going to PT and that helps tremendously.  I am starting to feel the difference in my strength.  On the days I feel crappy, I just take it easy and try to free up my calendar. I still need the pain medicine more than I'd like, but I need to be patient about that too.  Being anxious never helps any situation.  I started walking a few times a week. It's not painful anymore. That is definitely a milestone for me. Some of the fatigue came back, but I have to believe that it's related to the stress.
I also had some lower back pain which kind of freaked me out. Come to find out, it's a scar tissue build up. So my PT is squishing and squashing it until it breaks up. Such Bliss!  Well, it is a necessary evil. It has to be dealt with because it has the capacity to torture for life..
Anyway, I want to lose weight now. Not easy when you cant exercise and you LOVE food.  Especially good food. I just don't want to put all the effort into it. It's too much work and I always eventually gain it back.  I KNOW that is a bad attitude so I think I will need to start a weight loss Blog.  I have a year to take off the weight. My daughter will be married next September and I refuse to look like a chubby, dowdy Mother-of-the-Bride! Not that I am the center of attention, but those pictures will be FOREVER!
Until my next BLOG...........................

Imagine...a license to inflict pain.

It's been 2 months since the surgery.  I am becoming more positive about my outcome. I had some immediate results which have continued. For those of you who are contemplating the surgery, it was well worth it. My bladder problem and the lower back pain disappeared and never came back. I'm not going to lie to you.  Physical Therapy is hard work and painful.  At first I felt discouraged because everything would hurt worse for a couple of days after the brutal "workout". I would need to take pain medication for it, which bummed me out. Then when i was starting to feel better, I would have another appointment and then it would be a repeat.  My body told me to avoid the PT but my mind knew that was NOT the right choice. In fact, working through the pain is the best thing to do. I see glimpses of hope.  Last week I was able to walk up an entire flight of stairs without stopping. It didn't last more than that day, BUT it was one day more than i had before.  My body is so de-conditioned and weak.  But I look back 12 years ago and I was not even able to pick up a half-filled tea pot without using two hands.  I have come a long way. They may be small steps, but at least they are traveling in the right direction. The chronic fatigue is almost completely gone! That is a HUGE milestone. I almost don't know what to do with the extra time...NOT!  My Physical Therapist is a doll.  She works me hard, but somehow I trust her. Maybe because she is able to point out my little accomplishments. My back muscles are in constant spasm and the muscle relaxers no longer work. But I know if I stay focused and continue with my strength building exercises, the muscles will eventually relax. That is something I look forward to.  I suspect that the blogs will become shorter in length and a bit more spread out.  Soon I will be busy sending my son off to college and planning my daughters wedding. LOTS of changes in store for this middle-aged woman!

Do I seem depressed to you?

I don't mean to get ahead of myself here, but I think I need to clarify something. At my son's graduation party my youngest brother said he was somewhat concerned about me.  I looked at him with my head cocked to the side. I knew he wasn't talking about my recent surgery. He told me that he reads my blog and that he was worried that I might be depressed. He said the blogs appear negative. I was actually surprised by his comment. I am rarely depressed. I felt bad that I was coming across that way. So, I just wanted to make things clear. This blog is about suffering.  It is meant for the reader to experience my inner most thoughts and feelings.  For them to connect and see my humanity. Let me just say that I am not morbid, nor do I ruminate on my condition. I am very optimistic about what my outcome will be. Otherwise, I would never have even thought about writing this for the world to see.  I believe in happy endings, even if the happiness is a mere state of mind.  I love my life. I always have. Does it have miserable potholes? Yup, and some are pretty deep and damaging. But I know I am no different than anyone else. We all have a story. I just felt it was time to share mine.

Dumb, Dumb, Dumb,Dumb......DUUUUUUUUUUUUMB

I'm 4 weeks post op. I awoke feeling myself for the first time! Had a cup of coffee with my dad and uncle (they were visiting) and my hubby.. Off they went. I emptied the dishwasher. I still felt ok. I put the pot roast in the crock pot. Still ok. Bent down to pick up a box containing a shower gift, and oh NO! I felt the pull from the base of my spine all the way up to my neck! Stupid me! I hobbled back up stairs and got in bed. I tried holding off on the pain medication. I got in a hot shower figuring it would help relax my tightened muscles. It did for a little bit. But then the pain came back. I broke a vicodin in half and swallowed it with some soda. Got through the rest of the day and evening with minimal pain. As my muscles started to tense up again, I decided to have a half a glass of wine. It did the trick and the pain subsided for a couple of hours. Night time came and my spine started to scream and I mean loud! It was like someone was squeezing my spinal cord. The pain shot to my left shoulder and down the back of my left leg. I really hope I didn't screw something up inside. I pushed myself too hard. Why do I do that? When will I learn? But I felt so incredibly good this morning and now I feel worse than I felt two weeks ago. I took another vicodin. Nothing! It didn't even touch the pain. I waited for over an hour with no relief. So, I took a muscle relaxer. Nothing! Pain can drive you out of your mind. Now I feel nervous thinking I pulled something or did some damage. For a moment I ask "why do I ALWAYS have to physically suffer"? I pull my thoughts together and talk myself out of feeling sorry for myself. That's life! It's as simple as that. Everyone suffers. It's part of life. Unfortunately, sometimes that suffering dominates our thoughts and lives. I won't let it. Negativity always makes me feel worse. I wrestle a little bit to stay positive and hope that tomorrow will bring me some relief. I write this post, tuck myself in bed and turn off the light. I hope I can sleep through the sharp, stabbing pains and I pray that morning comes quickly.

The Color of Frustration

Please note: This next blog was written right in the midst of my first meltdown.......

I am two weeks post op from my spinal surgery. I am taking less medication and getting around much better. My family sees the improvement but misinterprets it. Some of this is my fault because I made the decision not to complain as much. Every bit of my energy is spent on getting up and making myself a cup of tea, or sandwich or taking a shower. I can't sit longer than a half hour. My body wants to lay down. I am beginning to HATE my bed! I spend most of the day and night there. My family does not see what I am feeling. They are busy with their own lives and schedules. But my anger builds every time someone walks in my room and asks me to do something for them! Can't they see that I just had major surgery two weeks ago? It's my fault. I am pretending to be okay so that they can feel good and not worry or get anxious. But it's backfiring. I am fighting myself again. I do not want to let my anger dominate. So I let go just a little bit and allow one tear to well up. My instinct's fight it, but I know I should just let it out and get it over with! Why is it so hard for me to cry? I think because I always viewed it as a sign of weakness. Maybe it's pride. How ridiculous. I know it's God's gift of release. Regardless, it's still not comfortable for me. I feel like a baby. So I hold it in and get more angry. Please God help me. I feel crappy and I'm hating everyone. Once again I battle with the balance of true need and selfishness. My never ending struggle. Either help me out or leave me alone! I say it, but do I really mean it?

The Hospital Stay from Hell

I then awoke to what seemed like a second later. The kind face of my male nurse was the first thing I saw. He quietly spoke to me, but I don't remember anything he said or anything in recovery. I came-to again in my hospital room. I was heavily medicated, so the next two days were kind of fuzzy. But not fuzzy enough!  I do remember having the room mate from Hell! She was obnoxiously loud and had what seemed like entirely too many visitors. My room felt like Grand Central Station. I had just gotten out of surgery and all I could hear was her LOUD thick New York accent!  She yapped on two phones the entire time.  I had my nurse close the curtain and I didn't open it until my room mate went home. The funny thing was although I was completely annoyed by this lady, my husband was thoroughly amused by her. She gave a theatrical presentation for EVERYTHING! She enjoyed every minute of her hospital stay.  I on the other hand just wanted some peace and quiet. Yeah, that wasn't happening. Fortunately I was on a dilaudid pump and that speared me some aggravation. Two days later, she was replaced by a nice, quiet little old lady. THANK YOU GOD!
I had a couple of mishaps during my stay. It's no wonder, because I had different doctors coming to see me every day. There obviously appeared to be NO communication between them and it was evident that they never bothered to read my chart. Personally, I am not fond of teaching hospitals.
My pain was in no way under control. Every time I complained of pain, they would say "well, you're not pushing your pump button". Hello???  I couldn't FIND the pump button. It was either hanging off my bed, or I would forget I even had one. For Pete's sake, I was still groggy from the anesthesia and they were putting me in charge of my own pain management?! Who ever came up with that dumb idea? The nurses were nowhere to be found. I could not imagine what it would have been like for me had Michael not been there.  He did EVERYTHING for me! He was constantly chasing the nurses down because they would completely ignore my call light.. He should have been given an honorary Nursing degree!
My body was in constant need of water despite the fact that I had an IV.  One morning I was so parched that my tongue was stuck to the roof of my mouth. The water jug had never been filled during 3rd shift.  I pressed the call button. No one ever came. Finally after waiting for two hours, I called Michael who was staying at a nearby hotel, and told him that I needed water.  He got dressed and rushed over. Poor guy! I could not wait to get out of that Hell-Hole. I won't even tell you about the Foley-Catheter fiasco! Anyway, I had the surgery on a Wednesday and I was discharged on Sunday. It was Easter. They handed us prescriptions and sent us on our way. They said they could not fill the prescriptions because their hospital pharmacy was closed. WHAT?!!! We were dumbfounded. How in the world can a hospital pharmacy be closed?! Just my luck. We had a three hour trip home and had to FIND a drug store in a strange city on Easter Sunday!  I vaguely remembered passing a CVS on the way there. Ahh, it was open. Michael filled the scripts, drugged me up with pain pills and muscle relaxers and laid me in the back of our van on a make-shift bed. Within minutes I was practically comatose. It was a beautiful thing!

What Exactly is a Tethered Spinal Cord?

It took me an addition 11 years to get the diagnosis of Tethered Cord Syndrome or TCS. Back in 2000 when I had the brain surgery, the words TSC where never uttered. I will not go into the very long and frustrating journey I had to travel in order to finally get diagnosed. But let's say, it was pretty much the same road I took before they found out I had a Chiari Malformation.  Back in March of this year I ended up in Long Island NY at the Chiari Institute. Yup, that's right, all the way to NY to get the diagnosis. Now what exactly is a tethered spinal cord? I'll give you the medical definition because it explains it best.

This disorder is caused when a thickened filum terminale(an elastic -like structure) limits the movement of, or "tethers" the spinal cord within the spinal column. The filum terminale or “terminal thread” is a normal structure that stabilizes the spinal cord within the spinal canal but has no real neurological function. Over time the tethered spinal cord is repeatedly stretched whenever the patient bends at the waist or flexes their neck. The repeated stretching of the spinal cord eventually causes symptoms such as bowel &  bladder incontinence, leg & back pain and numbness, balance disturbance and weakness of the legs. 

The tethering may affect the function of the entire spinal cord even though the structural problem lies at its lowest point. As a result, those affected by tethered cord syndrome may complain of headache, nausea and even arm pain.

Tethered spinal cord is frequently diagnosed in children, usually in conjunction with spina bifida. An adult tethered cord syndrome has also been described. This is not associated with spina bifida but may occur in patients with the Chiari 1 malformation. Some doctors believe that spinal cord tethering may be one of the causes of Chiari  1 malformation.

The Big Day!

My surgery was scheduled for 7:30 in the morning. They wanted me to arrive there for 5:30. Anyone who knows me well, knows I am not a morning person! I awoke at 4am, took a quick shower and got dressed. It was still a bit dark out when we arrived at the hospital. We checked in and then sat in the waiting room. I filled out another form and very soon after, they whisked me away.
I must say, I felt all the prayers carrying me, just like I did prior to my brain surgery. It was incredible. I actually felt like I had taken a tranquilizer. I felt such peace. I got into the fashionable Johnny and then Michael was called in. We were left alone for about 10 minutes and then an orderly came to wheel me away. I kissed my husband and off I went. I was lying flat on my back so all I could see where the overhead fluorescent lights rolling by. When I got to my destination, I was greeted by the Nurse Anesthetist. He was a middle aged man with a white beard and a double hoop earring. He had the kindest face. I asked him a gazillion questions and gave him a few requests. He was so patient and reassuring.  He promised me that he would do everything that  I asked him to do and that he would take good care of me for the next six hours or so. He made me feel so comfortable. There is a down fall to being a nurse. You know every possible thing that could go wrong! I was then wheeled right into the operating room. This was a first for me. In the past, I was always prepped and sedated in a pre-op room.  I was lying flat on my back and could not really see who was in the small closet like surgical suite. I called out "who is my Anesthesiologist"?  He quickly walked over and introduced himself. I told him that I would like to meet all the people who would be working on me. So one by one, he introduced me to all the attendees. I think it's important for people to see you as a person, not just a patient. The nurse took my arm and started the IV.  We were laughing and joking around. The sedative was then given.  I looked up to the Anesthesiologist who was telling me a story and said "you better finish your sentence now because I'm leaving yoooooooooooooooou". I could feel myself being pulled into Never Never Land......

Honey, you should try the Goat.

I decided that it was best that I get the surgery over with as soon as possible. I hate the rainy season and figured it was the best time to be confined to my bed. I made the surgical appointment for the following month. My Pain Management Doctor got me in touch with another woman who had surgery for tethered cord by the same neurosurgeon. What a blessing! She was able to answer my questions and send me a list of things in order to prepare. I ordered the hospital bed for my bedroom, and bought handlebars for the bathroom. I even packed earplugs and an eye mask to minimize sensory overload. I made all the preparations and that gave me a sense of well- being and some control. I counted the days. I was actually anxious to get this whole thing over with! I still struggled with worrying about my kids. Especially my youngest Caroline. The other two were old enough to take care of themselves, but Caroline still needed me. I was fortunate enough to have my in-laws take her for the week that Mike and I would be in N.Y. I was also blessed to have a friend offer to take her for the first week I was home. Another friend organized a chart so that I would have a friend come stay with me every day for the first two weeks. All of this took an enormous load off my mind. I knew my kids would be well cared for and so would I.
So the day to travel to NY finally arrived. Again we decided to go up the night before. Morning came and I needed to go the the hospital for all the pre-op paperwork. That took a couple of hours and then we went back to the hotel for a little nap. I knew I could not eat or drink past midnight so I wanted to have a nice meal. We found an authentic Indian restaurant. I ordered my usual Channa Marsala and I convinced Michael to order the goat, simply because I was so curious about it but not daring enough to order it myself. It was actually quite good. We took our time eating and then headed back to the hotel. I took a shower with the prescribed betadine sponges, got dressed for bed and tucked myself under the covers. Tomorrow was the big day. I said my prayers and drifted off to sleep........

It's up to you New York.......New York........

The day finally came to head to Long Island for two days of testing. We traveled the night before and stayed in a hotel. My testing would begin at 10:00 am that next morning. I was quite anxious about having the urodynamic test. I had good reason. However, my appointment was changed last minute and I was sent to a pediatric office for the test. THANK YOU GOD! It was all I could say. The test was much easier and less uncomfortable than I had anticipated but I failed it miserably. Next we drove to the hospital. I think I filled out forms for two hours! They asked for everything but my first born child. I then was called for a full spinal X-ray. Then back to the waiting area, Johnny and all. Next was the 3-D CAT Scan. Then back again to the waiting room. Finally my last test. A MRI that I layed on my stomach for. Not the most comfortable position, but it was the last test of the day. My poor husband must have sat in that waiting room for 6 hours! Good thing he had my iPad and Bookworm game. The testing was over for the day and my husband and I were both hungry. We decided to go out for a nice quiet dinner. Back to the hotel and then back to bed. Morning would come quickly and it did. Off to the famous Chiari Institute. I filled out forms and then waited. I was called to meet with my nurse. She asked lots of questions and then back I went to the waiting room. Hours later, I met with their Neurologist Dr Kula. He was VERY different than any other neurologist I had ever met before. He knew his stuff. He asked me tons of questions and then examined me. He even made me walk around the office on my heals and then my toes. He took notes, explained the condition and then sent me back to the waiting room. My next appointment was with the Neurosugeon. We waited another three hours! Finally Dr Kula told us that Dr Bolognese got held up with some surgery and asked us if we would be willing to head to the hospital to meet him there. So we headed to the hospital, went and killed some time in the cafeteria and then went to the waiting room until the surgeon came for us. He was much different than I had pictured. I had watched him on his video conferences. He must have had a long day, and by the time on my watch, I suspected I was right. He told me that based on my tests and Dr. Kula's examination, they felt I was a good surgical candidate. He told me that he would present my case to some surgical committee and then get back to me as soon as possible. We asked some questions and discussed the surgery, shook hands and off we went. We had a three hour ride home and a lot to think about.