Can someone just bring me out to the shed and shoot me?

Over then next four years, I saw more doctors and developed more health problems. I actually have to keep a list in my purse of all the procedures, surgeries, medications, and allergies that I have had. The list is so long, and I couldn't remember them if I tried. I have had and still have all kinds of gastrointestinal problems. I was hospitalized for internal bleeding. They put me on antibiotics and did a colonoscopy. It was inconclusive. Six months later they removed a polyp. A year after that, I was rushed to the hospital from my Primary Doctors office with Atrial Fibrillation. My heart was pounding at 150 beats per minute for 3 days and my blood pressure was 168/130. Oh joy, more medication! Then less than a year later, I had to have my esophagus dilated because it was constricted and spasming. When would this insanity end? How many things could possibly be wrong with just one body? I hated the fact that my entire life revolved around my health, or better put lack of it. I was ALWAYS sick with something. I was a lemon! My poor husband married a lemon! I don't know the pain he suffered through all of this because I only felt my own pain. Every second of my life was distracted with thoughts of myself. It seemed impossible to pull away. It dominated my every moment and I tried everything I could to get better. But I never got better, I just got worse and my list of diseases and ailments got longer and longer. I would have periodic meltdowns and would call my best friend from childhood. We have always been each others crutch and strength. She suffers with MS and understands everything I feel. And vice versa. We cry to each other and pray for one another. She has gotten me through many many difficult times during my journey and I am forever grateful. I honestly do not know what I would have done without her all these years. Everyone needs someone that can sympathize. Some people talk to strangers, or attend support groups. I never needed that because I had my friend. She never judged me nor scolded me when I was feeling selfish. She gave me just what I needed. Just someone to understand. That's all I ever really needed. Just someone to understand.

Lyme Disease? You've got to be kidding me!

Over the next seven years so much had happened. I will try my best to fast forward and keep it brief. My headaches completely disappeared about two and half months post-op. I felt so different. It was awesome! I could actually think without pushing the thoughts through the pain. It was a miracle of Modern-Day Medicine! I would get an occasional "normal" headache, take two Tylenol and it was gone! All I could say was "wow". I continued to have joint and muscle pain and my back still gave me problems. My short term memory was completely shot ( which kind of freaked me out at times) and I lost the ability to plan. That was so difficult to deal with because I was so incredibly organized and organization gave me a sense of control. I was unable to go back to work. Can you imagine having a nurse take care of you who did not have a short term memory or organizational skills? What a recipe for disaster! I stayed busy with volunteer work at my church. I sang, and worked with the teen ministry. I even became a foster parent. I needed some sense of purpose. So I learned to work within the realm of my abilities. I kept my Nursing license and continued to work on my continuing educational credits in hopes that one day I would regain my lost memory. Over the course of the following year, I was diagnosed with Chronic Lyme Disease. I had to see an expert in Conneticut because no one in RI was treating the then controversial disease. I had to pay out of pocket and the visits were $500 a pop! The doctor surmised that I had contracted the bacterium sometime in my childhood while camping in the woods of southern RI. The treatment was brutal. The first week on the antibiotics was rough. I felt like my body was run over by an 18 wheeler. My eyeballs burned and the medicine was hard on my stomach. Over the next five years, I was treated with both antibiotics and herbal remedies. Every time I stopped the treatment, the joint pain and chronic fatigue would return. Then one day, the pain and extreme sleepiness were gone. However, I still continued with the spinal and leg pain. It was hard to climb a flight of stairs and almost impossible for me to walk around the block. The lack of movement and all the meds put weight on me and I felt horrible. So, I decided to join the YMCA and take water aerobics. It was non weight bearing and do-able. I went three times a week for a couple of years until one day, I could no longer even do that. The pain in my hip and back could no longer bare the movements.
I was then forced to quit.

Frustration & Failure

My husband came to pick me up at the rehab hospital. I thanked all the wonderful people who helped me each day and out I went. It was a strange but wonderful feeling to be out in the open air. The car ride home was brutal. My head hurt with every bump and Rhode Island pothole.  I got home, looked around and went straight to bed. Sleeping flat was torture! We called and got a hospital bed delivered the very next day. I was still leaking spinal fluid and needed to lay at a 30 degree angle for at least another month. Morning came. It was a nice warm October day. My daughter Victoria was in fifth grade and my son Luc was in second. They each grabbed hold of an arm and took me for a short walk down my street. It must have been scary for them to see their mom so weak and unstable. I was 35 and looked like I was 80. I know they were young, but it must have been so difficult for them. God only knows what was going on inside their inexperienced little minds. I tried faking that I was ok, but they weren't buying it. The next year was spent mostly trying to get my head and neck movements back. It took about another year or so of physical therapy. Again, my life revolved around doctors appointments, medications and health related issues. I was just so sick of it all! I kept going to PT and I am glad I persevered. I regained almost full range of motion although I will never be able to look up or comfortably get my hair washed at the Salon.  Big deal! I slowly made progress but it took it's toll on my family. My kids needed a mom to be just like all the other moms at school and home. I simply couldn't be that person to them no matter how hard I tried. I couldn't drive my kids to the mall or to their friend's houses. They would always have to scrounge for rides. It broke my heart, but I just couldn't do it. I would miss soccer games and special events at school. All three of my kids spent a lot of time at my mom and dad's house. I did the best I could. It just didnt seem good enough. I would try to arrange for weekends in New Hampshire with our family or friends. I made sure they had lots of play time with their friends from church or school. But this was never consistent. EVERYTHING revolved around how mom was feeling. The guilt was overwhelming and would easily turn to anger. I was always frustrated. My spirit was so willing but my body was so weak. I was overwhelmed with all of their needs and did not know how to meet them. I loved them with all of my heart and tried my best, God knows, but I felt like a failure. Frustration ruled my life and I had absolutely no control. My weak and needy body controlled me and everyone else that I loved. It just didn't feel fair. I felt cheated and felt I cheated my family too.

The Battle Within

When you have a chronic illness, pain or besetting struggle you can't help but sometimes feel like you are all alone.  At times people may be there for you or even offer a helping hand but somehow you still feel so disconnected. The old saying that "isolation is the devil's playground" is oh so true. If you can see it coming, then run for your life. It 's so odd how you can have 10 people around you and yet still feel strangely detached . Alone in your thoughts, you suffer in silence.  But is it really all that silent? With me, my defense mechanism is to lash out in anger.  I despise it!. There seems to always be this underlying flame in my belly that can be ignited within seconds. It's years upon years of hurts, disappointments and dashed dreams. These emotions stay hidden behind the door of my subconscious, but can easily surface without my permission.  Sometimes an explosion seems to come out of thin air and ultimately my hurts transfer to others, leaving them wounded and war-torn.  How do we stop this cycle? That is the million dollar question. Why do hurt people, hurt people? It's ultimately the result of the human condition. A hard battle to fight.  A seemingly impossible war to win.  Where is the balance between feeling the intense need to be loved and cared for, and being self-centered and defensive? This is the emotional conflict that can result from a life long battle with pain and suffering.

2 Months of Spinal Headaches and Rehab...Really?

So off to another hospital for rehabilitation. I couldn't walk, I couldn't read, I had the nose of a dog and the ears of a bat! My senses where so hyper that the shades needed to be drawn and not even the cleaning lady could come in my hospital room. The crinkling of the waste paper bag was too much for me to handle. The headache, oh the headache...it was like NOTHING I had ever experienced. The dura graft that covered my brain was sown in place and the tiny needle holes leaked spinal fluid for 2 months straight! I had to sleep at a 30 degree angle. The rehab unit was nice and the nursing staff was great. But the Physical Therapy and Occupational Therapy drove me crazy. Why couldn't these people just leave me alone?! I didn't want to do anything but lay in my bed.  Of course that was IMPOSSIBLE on a Rehab Floor.  The pain was brutal. I remained on Morphine pills and barbiturates for the head pain. I was starting to make some progress, that was until this horrible excuse for a Neurologist went and ruined my world!  I know....that sounds pretty harsh.  But if I am going to be honest then I have to speak the truth. He looked me straight in the eyes and said "you can't take these meds anymore because you will become addicted. You have children who you need to take care of."  Who did he think he was? I just had my entire neck and skull sawed open the week before and he was worried about me getting addicted?!!!
Well, he took away all my medications without consulting the Doctor who ran the Rehab Unit.  I could feel every millimeter of where that saw carved through the bone of my skull! My nurse came into my room on the next shift and saw me rolled up in a ball with the lights out. She asked "what happened to you?"  I told her that the Neurologist took me off all the pain meds. This Nurse was furious. Her name was Roxanne. She looked like  a biker-chick, and had a truck drivers mouth. But she was my ANGEL! She ran out of the room and came back with my pain meds. She used some colorful language to describe the Neurologist and told me he had no right to do what he did. She reported him and he was off my case.
I made progress a little at a time. My short-term memory was trashed and I could not organize my thoughts but I was able to at least walk with a walker and read a little. One morning I awoke. I sat up and then without any assistance walked right up to the Nurse's Station and said  "I want to go home now".  They looked at me with amazement. Everything just seemed to kick in gear. I called my husband, packed my bags, said my thankyous and waved good bye.....was I really ready to go home?

My Brain Surgery...AKA A Zipper Head (Sept.13, 2000)

I decided to wait a couple of months to have the surgery. I wanted the kids to be in school. I don't think I could have lasted much longer. I was so weak and pumped up on drugs. I looked like the walking dead! I decided to have 12 inches taken off my hair before the surgery. It was like removing my right arm. I always had long hair and the only way I could deal with it was to donate it to make wigs for cancer patients. It made me happy to help. September 13 th 2000 could not have come quick enough. I arrived at the hospital at 5:30 am. My husband and parents came with me. I kissed them and rolled away into the pre-op room. I had incredible peace. I could feel all the prayers carrying me. I was not one bit nervous and didn't need any sedative beforehand. The IV went in and out I went. 4 to 5 hours past and the Surgeon came out to the waiting room. He looked exhausted. He told my husband that the surgery took much longer than he anticipated. He explained that the MRI did not show the extent of the problem. I had so much scar tissue  and had virtually no spinal fluid flowing from my spine to my brain. He was able to perform a successful decompression with a dura graft. The incision went from the base of my neck to almost the top of my head. Hence, the zipper-head. I remember very little but I do remember feeling and hearing this swishing sound in my ears. The doctor explained that I was actually hearing the spinal fluid flowing into my brain. It was an amazing sensation. It felt like my brain was being bathed. Almost like a dry sponge soaking up water.
To the doctors surprise, I was NOT able to walk and I had double vision. All my senses were magnified 1000 times. The pain in my head and neck where unexplainable. How much pain could the human body withstand? I think I had found out. Somehow, none of this concerned me. I just knew everything would turn out well in the end. I spent a week at the hospital and then I was transported to another hospital for rehabilitation. This was not typical. Most went home in five days. But not me...

An Angel with Neurosurgical Hands

I called Dr. Duncan's office and took the first appointment available. I walked in his office, shook his hand and knew almost instantly that this was no happenstance. He put my films up on his x-ray illuminator. He studied them for a minute or so and turned to me and said "I can fix this". I thought my heart would leap out of my chest. I could not believe that there was actually someone that was willing and able to help me. I gave him the long list of my symptoms. His assessment was not exactly what I expected. For the first time, a doctor was actually able to separate my symptoms into more than one problem. He explained that the surgery would resolve the headaches, nausea, dizziness, difficulty swallowing, and possibly the fatigue. But what about the pain in my spine and all my joints and muscles? He explained that those where the symptoms of something else. I was a little bit disappointed, but at the same time relieved. Would my constant excruciating headaches finally come to an end? What would that feel like? To be honest, it was very hard to comprehend. I could not remember life without them. The doctor warned me that this was the most painful surgery that he performed. Nothing could have prepared me for what would happen next.