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........