Carpal Tunnel/ Cubital Tunnel Release Surgery

As you may know from previous posts, I have suffered my entire life with overactive sweat glands on the back of my left hand. It has taken me over 10 years, 5 dermatologists, moving 1200 miles from home, completely new physicians and opinions, to finally discover a possible cause for this. After seeing a Neurologist in Georgia and being put through a nerve Conduction study for the first time, I was diagnosed with severe cubital tunnel syndrome and moderate carpal tunnel syndrome on my left side. It is not on the right side which makes it slightly more convincing that it could be the cause of the sweating. I also experience tenderness, tingling, and numbness on and off on that side. I was scheduled for surgery before the end of the year. I had the surgery two weeks ago now. In case you are wondering, pre-op is very simple, much like any surgery. They gave me a light sedation before doing a nerve block on my left side which was excruciating but I was drowsy so it wasn't too bad. They did extra topical anesthetics on me because of my history of not responding well to pain medicine. I had them keep me on Toradol since I cannot handle any narcotics. The surgery went quick and I woke up with my limp arm in a sling to hold it up. my hand and elbow were wrapped up tight and I was out of there in no time. My recovery consisted on 3 days of pain and swelling before I realized I needed to elevate and ice my hand. Then when I got through that weekend I immediately started touching my fingers together and trying to use the hand little bits at a time. After a week I was doing really good, bandages off, showering myself, driving with one arm, starting to pick things up with the arm. After two weeks I am almost completely normal. The steri-strips are gone, no stitches just some glue, but I am using my hand completely and applying pressure to it like door knobs and the steering wheel. I am glad I went through with the procedure, however, I am not noticing any immediate results. The hand is still sweating, though it may be due to the irritation of the nerve as it heals. The numbness and tingling are worsened as the wrist and palm now ache off and on and get sore with movement. The elbow just hurts when pressure is on it. I have been told expect 5 weeks for complete healing and tenderness to go away. I have also been told it can take a year or two for nerves to fully recover when damage has been done so it may take awhile for me to know if this was a permanent fix or not. I do plan to keep everyone up to date as time goes on.

The love of My Life

It was a cool Saturday night in Georgia when I got in the passenger seat with my uncle to head to the movie theater in town. I was in jeans and a hoodie, nothing special really, but no need to dress special because it was just a night out with a friend and my uncle. I was nervous that the man coming to the theatre would already be there when we arrived and I wouldn’t recognize him from the brief picture I saw online. I was also nervous that he would be a total dweeb and end up embarrassing me with my uncle right there. All the emotions would build up and I would probably cry before the night was over. My anxiety was taking over and I felt my hand start sweating again. It was this darn annoying problem I had had since I was little. The most embarrassing dates usually ended with a sweaty hand holding experience and I would leave mortified. As we waited in the line with the breeze on our backs I searched my eye feverishly on the sea of faces in the line in front of us in hopes that if he saw me he would have come up to me and said something. I prayed he would show up. I prayed he would behave. I prayed he would not be a complete loser. I prayed he was not there sitting in his car staring at me from afar creepily while he planned his attack. My mind traveled then to attacks and the movie we were seeing. It was a busy night at the theatre and the line traveled further and further behind us down the sidewalk. Suddenly a face appeared in front of me with a puzzled expression. I stopped dead in my tracks and breathed with relief as the friend was now in front of me, and normal looking. From his hand a long stemmed rose extended towards me and my heart raced. I squeaked the first thing that came to my mind as my uncle turned around to see this happening: “You were supposed to be just as friends!” and he started a chuckle that I would grow to know so fondly. My uncle chastised me for shooting down a southern gentleman. That was how it all began. From there on we grew very close very fast. He helped me clean out my grandfather’s barn, he helped us herd cattle, he brought me out to dinners and we took long walks holding hands. He talked to me for hours on the phone while he was at home in Madison, Florida between working as a correctional officer. Within a few months we had talked about everything I could imagine, and I felt more comfortable with him then I had imagined. He started looking for a job near me and got hired instantly at the town police department. Then he had to move to Tifton and start doing the police academy that they sent him through. I saw him every weekend and sometimes even after work. It only took until March for him to take me back to the movie theatre at 11 pm one evening on our way back from his friend’s house that I had just met. He stopped the car and I pushed him to tell me what was going on. Like something from a dream he opened his car door and went around to mine. As his hand extended I unbelted my seat buckle and steppe out into the cool mist of the night. He led me to the sidewalk and told me how good it was to be back in the same spot he saw the woman of his dreams. Down on one knee I was asked to marry the love of my life and I squealed yes through the tears of joy. He held me and brought me home to tell my grandparents. I called my mom and talked her ear off about the wedding plans almost daily for months and months until the day arrive in August. It was supposed to be September 27^th but through our time getting to know each other we found a house we liked just a few towns over and got my mother moved down here by July 11^th. I didn’t see any need in waiting any longer. I was now working at the newspaper in town as the hospital ended up being a catastrophe. I got to invite all the employees from there and we got our venue for free at the local public park. The ‘park’ was actually a fishing area so we got married out on the end of the dock as ducks swam by and fish rolled beneath us. It was mystical and a perfect day. (I will post pictures and more about the wedding later.)

Moving to Georgia

I got to Georgia on a windy December day in 2014. I was so thrilled to feel the cool breeze as it was a relief from the freezing temps in New Hampshire. We had driven all day long, leaving around 7 am and arriving in North Georgia at my grandmother’s house around 3 am the next morning. Immediately we came inside and went to sleep. My mother had helped me drive down and we both were sick from fatigue over the long trip. We slept in until around noontime and visited for multiple days with my Grandmother and her husband while exploring the area and visiting my aunt and her family as well. We made the rest of the drive to my new town about a week later. The drive through Atlanta was brutally backed up with traffic. It was so great to arrive to a room made up for me in my Grandfather’s mobile home out on 16 acres in the country town in South Georgia. I had my own bathroom and a full size bed and walk in closet. It was very comfortable to settle in to and my mother who was still feeling sick from the travel lay down on an air bed in the spare room right beside mine to nap while I sat up and visited my grandfather and his wife. The next few days were exciting as I interviewed at the hospital in town and got offered the job as well as followed my grandfather around to learn his ways on the farm. I have never been around cows more than I am now in Georgia. He has more than 40 cows currently, and breeds them for the good meat producing bloodlines. He has some of the top Angus in the state, and they are the finest that I have seen so far. Down here Angus are like the top favored cow breed, people depend on them for their livelihood. I always thought they were just stinky destructive creatures with long tongues. To me they still are. After a week in South Georgia with my mother showing me around her old stomping grounds and helping get me set up with insurance, registration, and a job at the hospital in the billing department, It was time to ship my mother home. We made the 4 hour drive to Atlanta airport and got her off to the right terminal. As we were leaving it felt like my heart had died. I was scared, not knowing what to expect. My grandfather was a quiet stern type, much like John Wayne, and I didn’t know what I was getting myself in to living with people who had no idea of my medical history. It was a difficult move, adjusting to the way of life was difficult. You went to bed early and got up with the sun, your plans were made around feeding the cows, and your money went back into the small farm on the dirt road out in the middle of nowhere. What was really cool was how much nicer people were. They all wanted to greet you with a smile and know your name. People spent hours sitting around talking about their family lines and how they were related somehow. Only when you threw around a familiar name were you trustworthy and reliable. It was hard to learn the streets as well, most people followed the landmarks they had known since childhood. Another major difference was the education level. Some people were much more forward about their inability to read and write then others. Some people were quiet about it, but nobody was embarrassed by that fact. High education levels were such a trademark in my hometown, your common sense and ability to eloquently present yourself was a direct trademark to your character. It’s just not the same everywhere I learned very quickly. I went out on dates with a select few I had met online and was not very impressed so I decided to just not date and try to meet some people through church and work. I ended up working in an office building with two foot wide cubicles off the hospital campus, and only had 30 minute lunch breaks. I was working with all women and soon realized I was not able to meet anyone that way. One weekend I was going out to see a movie with my uncle and remembered a message I had received online about a week before that simply stated “I’m sorry that you are too young, your profile is impressive.” I had retorted back “How do you know I am too young, you haven’t even given me a chance. How rude!” The response went unread until a few days before the weekend arrived and I invited him to go to the movies with my uncle and I as ‘JUST FRIENDS’. That was where the next chapter begins.

How am I doing?

        In November of 2014, I made the life changing decision that I was miserable and needed to try something else to cope with my life stress. After a long day of college classes, equestrian team meetings, volunteering at the horse rescue center, and trying to visit some friends while suffering pain and aches, I told my mother I wanted to move to Georgia. It was a dream of mine I had talked about forever. I wanted to move to where it was warmer, with no snow. I wanted to have my own horse to ride daily. I wanted a barn with a loft I could sleep in on warm summer nights when my horse was sick. I wanted to clean water buckets and shovel shavings in my down time. Though it was an overwhelming idea, I wanted to work on a farm and be someone important in a small town in South Georgia where everyone knows everyone. So I did. A year ago if you asked me what I was going through I would say my worst part of everyday was having to attend college while feeling so ill. I had recovered partially from open heart surgery and was not back to myself, and the dawning winter was too much for my thin blood to battle. I was weak and struggling through the ‘greatest years of my life’ in college. I did not like the degree I had chosen. Though I wanted to advocate for kids with illness in hospitals, I did not want to learn about drug abuse counseling and take practice counseling sessions to have to get there. Today if you asked me what the worst part of my day is, it’s that I still have medical setbacks day to day that change and shape themselves into the biggest challenges I have had yet. It’s that I have to work to pay bills so I can enjoy the animals I have at my new home in South Georgia. That is a common struggle with all adults. I would say that I miss my husband when his shift goes back to nights every four months and I have to lay in bed alone at night. Yes you heard me, HUSBAND! My time in South Georgia has been full of change and developments every day that I never expected. I am surrounded by love, support, joy, and encouragement that I don’t think I deserve. I am okay with every aspect of my life, except for my chronic pain, fatigue, and complications that I still believe are caused by my relationship with Lyme Disease.

More than the fact that I am still so sick, there is much more to tell! I will start at the beginning of this series of posts to try and update what followers are left on where I have been this past year and what I have gone through.

New treatment plan, Doxycycline and Metronidazole

After suffering for years and years with different types of treatment plans my doctor and I stumbled across a new one that works really well for me. I'm taking Doxy at a smaller dose to not upset my stomach, and Metronidazole which treats other forms of bacteria such as coinfections. With this combination I'm feeling a decrease in almost all of my symptoms.

Completely unrelated, my heart symptoms of palpitations, fast heart rate, dizziness, etc. became worse for the first time in months. I went through a Holter-monitor test, another Echo-cardiogram, and a physical to try and diagnose the source. After finding nothing, it was decided that my Bartonella has now moved into my heart and is running wild creating symptoms that can't be caught on film with no rhyme or reason to them. I feel the aching pain in my heart, my sternum, and my collarbones still. Sometimes I run my hand down my sternum and feel the permanent ridges protruding from a bone that was one sawed in half. I feel the claviculae joint pop and crunch as my collarbones shift around. I even feel a knot at the top of my sternal incision scar that still had bit faded yet and remains a bright red bump. I perform scar therapy on all of my scars by massaging them and applying a silicone liquid that's supposed to soothe them away. Most of my scars are already disappearing, fading away into small white lines. I know the knot will subside too in time. My mother's research says maybe 2 years, but it will one day be barely visible. I see actors on my favorite shows with faint white lines down there middle of their chest and feel so much more relatable to them, like we have so much in common. Maybe one day even my significant other would be able to understand what I've been through from first hand experience, though I do not wish for that.

These battle scars will be reminders of where I came from but mostly what I can overcome as I push myself to future goals. I pray that my Lyme symptoms stay under wraps as I take the next journey forward in my life. I know stress can make it come back full force once again, and I know exercise and diet may be keys to successful future treatments.
Tonight I remember where I was at the beginning of the year, when I signed up for my first gym membership and how I thought the year would go. I never knew it would have turned into this, and I haven't returned to the gym because of my pain and undiagnosed continuous heart symptoms, but I remember where I was so I know how far I've come and what is left for me to still experience.

Been a Long Time Since I Posted

It has been a long time since I have updated everyone. Basically my life had spun out of control and I needed to get a hold on things. Here is where I'm at, bear with me as my scatter-brain leads you up until the current events in my life. The Zio patch test came back fine, which is a good sign. I stopped the blood pressure medication and attended the gym on my own to restrengthen my cardiac stamina. I stopped the cardiac rehab with the heart monitors and was relieved to go back to a more normal lifestyle. My Lyme symptoms all got increasingly worse. My regimen of Clindamycin, Omnicef, and Tindamax did not do anything for me as I got increasingly worse. I just recently visited my LLMD who put me on a regimen of Paxil for the anxiety (finally working with no worsened side effects), Amoxy, Doxy (good because the sun sensitivity won't be overpowering in the fall and winter seasons), and Flagyll. These medications are supposed to attack the cystic form of Lyme, Bartonella, and Babesia. I also still take probiotics, Nystatin, Axid, and Zyrtec. I visited my hematologist who said my second Lupus Anticoagulant tests came back negative, so I have an unnamed clotting disposition that could be a problem worsened by the Lyme. It will keep me from ever getting IV medication again, or ever taking hormonal birth control. I go in for the Paraguard IUD, because it's non-hormonal, next week. Also I will stay on daily baby Aspirin to keep clotting instances from happening.

My symptoms currently include the worst fatigue I've ever felt, tendonitis, overall pain mainly in the torso area and lower back, headaches which I just got glasses to assist with, ear problems, nausea, dizzyness, fainting spells, joint inflammation, brain fog, memory loss, confusion, narcoleptic episodes, loss of concentration, anxiety/depression, and lack of appetite, Those are the major symptoms not including the occasional episode of night sweats, sleep insomnia, or muscle spasms. I can say that starting the new medications two weeks ago have already shown they are keeping symptoms from getting worse. The pain has subsided a small bit, while tendonitis worsened. I am hopeful they will work to keep me from my usual winter seasonal decline in symptoms. Currently I have been too tired to think about going to the gym. I fall asleep in classes or while driving, and go to bed as soon as I get home. I long for naps during the day, and have no motivation to move from the couch or bed, I sleep 10-14 hours a night but still want nothing more than to sleep. It's hard to hold a social life when you feel dead by nine, can't stay away to drive home, and feel like taking a nap instead of eating dinner. In fact I choose not to eat when it means walking to get the food, and instead doze off in my seat. This is a new profound exhaustion then I have experienced before. I know I need to gain cardiac stamina but just find it too hard to think about a walk or exercise. I feel distanced from many people and have to choose whether I socialize or do homework. In fact, most of the time I skip my homework and try to leave early from my new part time job because even though I'm smiling, I'm dying inside. My anxiety wake me up first thing in the morning, shaking and nauseas until I get the Paroxetine in my system. I also head to bed at night fighting depression and wanting to just never wake up. Hopefully I have more positive updates soon for all my faithful readers.

Where I'm At Now, Zio, Hematologist, 3 months Post Op...

Lot's of people have been asking how Im doing post surgery and with the start of my Lyme treatment again. This post may be rather long but here is where I'm at now.

When I was a child, I used to play with my two older brothers in the woods behind our house. All of the neighborhood boys would gather together with their fake weapons and camouflage clothing to play war. Being the only girl, I always pressured them to let me be the nurse. I had the dream of helping people out in the medical field, and cherished my education about it throughout middle school. I took things seriously, like extra curricular activities and sports, trying to educate myself about exercise and prepare for a long life in school to become a doctor. I never knew that when I turned twelve I had one last summer of joy before my life was overtaken with medical knowledge. I did not become experienced because of my own choice to, though I would be inevitably. I was thrown into the situation of being a chronic illness sufferer and advocate for others around me fighting disability. I look back on that final summer seven years ago and remember the late night bond fires, the first girl that moved into the neighborhood and became my best pal, hiking all over New Hampshire, spending time with friends and creating goals like learning guitar and becoming involved with horses. I was active, fun loving, popular, and a thriving social butterfly. I pushed to be the best and loved reading the last of the Heartland book series. That summer was my first time on social media. My new friend created a Myspace page for me, and I remember sneaking my age to thirteen to be included in the popular crowd. Little did I know the entitling age of 18 would have been such a terrible year for me, and that I'd wish to go back to where I was not a teenager yet. Our entire lives we push to be older and stronger and prettier and more independent. When we finally get there we see that it's nothing special.

Since my last post my life has been a whirlwind. I developed serious recurring symptoms due to the six week steroid treatment I was on. Babesia was running wild in my system. For those of you who don't know, Babesia and Bartonella have been my worst problem alongside Lyme Disease for the past seven years. They are all co-infections, they come together from a tick bite and can be the worst problems in the complicated case of treating Chronic Tick-Borne Infections. My symptoms consist of memory loss, nausea and stomach pain, joint pain and muscle soreness, headaches, dizziness and fatigue, and severe anxiety and depression. My anxiety has progressed to a point where it is worse than it's ever been. I have days where I fall into an anxiety attack and begin shaking and seeing blurry, running to my room or away from people to hide and melting anti anxiety narcotics under my tongue to get the quickest effect. I have become impossible, seeing the world as doomed around me and weeping for hours on end after starting fights with my boyfriend.

I called my specialist this week begging for a change. I told them I could not handle this hell anymore, that I was not eating and suffering from stomach pain and depression like no other, and needed help. They immediately got me an appointment this Wednesday where we can talk about treatment and getting help for my depression/anxiety.

Last week, I received a letter saying my health insurance through the state was ending. I called Medicaid to ask what that was all about, because I had been told I would be covered until the age of 20 with children's medicaid due to the newly passed expanded medicaid law. This was very reassuring, but now I was being told that was incorrect information and I was being dropped off of my insurance in just a week. I do have a financial assistance program that covers all of my main doctors and some testing, but it does not cover my medications and additional doctors, like dental work. This will throw quite the wrench in my plans.

As for post surgery improvement, I am doing my last physical therapy in about two weeks. I have switched from joint and muscle work to exercises and strengthening and will be testing my range of motion and strength at my next visit. My cardiac rehab appointments have increased in difficulty and I have been getting into a good workout routine there. I also have been increasing the weights and trying really hard to get myself to a point where I can get to the gym. It's been difficult getting myself to a point where I have the strength and motivation to get out of bed and drag myself to the gym. This is a constant obstacle for me, trying to maneuver around the Lyme Disease and it's affects when I only feel decent in the evenings and then I need to get to bed so I can sleep long enough. My rib cage and sternum pain have gotten a lot better, as time has gone on. I still cannot do the motion of putting my arms forward as if to hug myself, and I'm hoping that will improve over time.

The rehabilitation center watches my heart as I exercise, and they see a lot of changes in blood pressure with medication adjustments throughout the post op experience. I visited my cardiologist a few weeks ago because of the feeling of fluid on my legs. He prescribed a diuretic which lost some of the fluid weight after taking it for three days in a row. He also was worried about the electrical rhythm of my heart during exercises so he started me on a two week Holter monitor called the Zio patch. It's a two week EKG patch that watches your heart and highlights the moments you press the button (when you feel a symptom). I won't have the results until almost August close to when I return for repeat blood work for the Lupus Anticoagulant disorder.

My hematologist appointment was uneventful and we did not learn much, other than Dr. Walsh is a very understanding physician out of the New Hampshire Oncology and Hematology Payson Cancer Center at Concord Hospital. The experience was very pleasant and the only downside was that she mentioned possibly referring me to Boston to a blood clotting specialist. She said she sees a lot of blood problems and clotting with multiple generations is not her specialty. Now we must wait until the end of August for an answer about that.

Thank you for reading this long post, and I can do a continued post on my experiences with the Health Profession Opportunity Project (HPOP), horse shows, college preparation, health insurance status, and my next treatment plan after Wednesday's appointment.