Search This Blog

Tuesday, February 16, 2016

visit with Infectious Disease

My first appointment to an infectious disease doctor was not enlightening. It was extremely uneventful. Aside from him shaking his head in awe as he stated that I shouldn't have been treated for more than the standard 14 days, seeing as that Lyme is easy to treat and "even cases where the Central Nervous System is involved only require 28 days of treatment". I was pretty disappointed in that statement. He also made sure to tell me that I look great so why am I there? After all if someone looks good they can't POSSIBLY feel terrible, can they? Only 80% of common illnesses present underneath the skin! How dare I look good on a work day while trying to make a living and taking time out of my pay to go sit in his office for two hours just to be told I look good. He then ordered some blood work and agreed that maybe there is a complex array of other things going on in my body keeping me from feeling 'well'. He mentioned IVIG, which really interests me since the last time I was mentioned that was upon seeing a specialist in Vermont while in a wheelchair. He said it is a substitute for some people who can't fight illness with their own immunity and might really help in my case. He ordered some blood work to check on my levels for that, and to retest me for Lyme even though he claims "once it tests positive it always tests positive". I'm sure he will write it off as a false negative when it comes back negative like it always has. Aside from the IVIG treatment possibility, he did not recommend or even hint on anything else that might be going on. Apparently there wasn't too much to be concerned about to him since other doctors are managing my other problems. I'm sure he thinks those other problems are not related to each other at all. I even made sure to specify to him that when we say "Lyme Disease" we are referring to the chronic long standing and difficult to treat co-infections as well, which he couldn't fathom being just a clinical diagnosis. This young doctor was the perfect text book of example of a physician playing by the rules who can't bare to think outside of the box. Not the 'know it all' Dr. House type that I was hoping for. At this point I often feel it would be better even to find something else as the cause for all my problems, instead of my Lyme Diagnosis. It feels as if I will be struggling with these symptoms forever.

Thursday, February 4, 2016

I have this condition called ACA right now on my upper stomach, low back, and around some of my feet after taking a bout of Clindamycin for a sinus infection not too long ago. It was the first bit of antibiotics since I moved to Georgia in January of 2015, and I now know that, due to a myriad of arising symptoms, I am not cured and do need to pursue further treatment. I see an infectious Disease Dr down here for the first time next week, after being demanded to see one by my GYN Dr. who is very sympathetic to all I have been through since I was 8 years old. She believes I have Endometriosis as a result from my Lyme disease, and I will be undergoing exploratory surgery in December to clean that up and get a definitive diagnosis. She also believes that my carpal tunnel, back arthritis, IBS, and much more is involved around the chronic disease since I stopped treatment in December 2014. This is the first time I have discussed this to my Facebook friends in over a year, and also a real wake up call that I am not out of the woods yet. I try to keep updates on my Facebook as I know many people suffering find comfort in reading others' stories.

Wednesday, December 30, 2015

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.

Monday, December 14, 2015

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 27th 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 11th. 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.

Thursday, December 18, 2014

New treatment plan, Doxy and Metrinidazole

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 Metrinidazole 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 Echocardiagram, 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.