I decided since I am now forced to slow down as a result of the coronavirus pandemic I would take this time to finally write my story. I know many of you (my loyal, supportive patients) have heard bits and pieces of my health journey from myself and stories that were circulating. Well, now I am officially writing it down. My reason for this is to hopefully help others to navigate their own personal health challenges and inspire others to march on and follow their divine guidance. Each of our journeys have one thing in common to help us be better people. It is like being given a chance to reboot ourselves to who we really were meant to be. It gives us a nudge in the right direction when our compasses have taken us off course for a while.
My journey began with a slow decline in my health beginning in 1997ish. It is so long ago I can't even remember the year. I had graduated chiropractic school in 1992 and was now working for a chiropractor and establishing my own practice both human and animal. Yes, I was very busy burning the candle at both ends. I returned home from a family vacation at Parvin State Park in NJ and noticed very small irritating bump on the back of my upper thigh. This is not an easy place for a single person to examine by themselves. After a week or so it became sore, raised and a red ring around it. After picking at it I was able to dislodge a very small tick. I had no symptoms so just squished the thing and went on with life. Over the course of next few years I began to experience bouts of severe fatique, body aches and my knees would swell to the point my pants would be very tight. My hands hurt especially my thumbs. It got to the point that I could barely even touch my thumbs the pain was so excruciating. I had to stop running and biking because my knees were so swollen and painful. The day finally came that I had to crawl up my steps to my apartment each night after work. You ask, how did I even work? I was brought up in a working middle class family and we did whatever it took to make it. So, I just pushed thru it. I needed to work to pay my bills and survive. Each day at work during lunch I would sit with ice on my thumbs and knees hoping they would feel better enough to continue for 5 more hours. I saw many doctors over the course of years from 1997-2007 that gave me many diagnoses ranging from Lupus, RA, MS, but never lyme disease since 6 Elisa tests came back negative over those 10 years. My family doc would give me doxy to take once in a while and it worked enough to reduce the worse of the symptoms for a while.
By 2006 I was loosing the ability to cursively write, I could not read simple magazine article let alone medical literature. If I had not seen a work in my lifetime I could not read it or comprehend it now. My speech had slowed dramatically as I had to think about each work I was saying. I became dyslexic and when attempting to print or type I would also leave out entire parts of sentences. I have no idea how my friends even knew what I was trying to say. God Bless them but they did.
During all of this one evening after work I was talking to my partner at the time and I experienced a SEVERE pain in the right side of my head above my right ear. The pain was so great I could not speak or move for what seemed like a very long time. I just reached up and pressed my hand against the painful spot which was actually inside my head. My mind raced with possibilities and on the top of my list was a stroke. After what seemed like an eternity I attempted to speak. I spoke one word at at time slowly and deliberately. Whew...... I could speak. I then attempted to move my face, lift my arms and move my legs. I could to it but it was all slow and slightly delayed. But I could do it. Two days later I suddenly experienced severe weakness in my left leg and arm. When I attempted to reach for my door handle to get out of my car my arm did not immediately reach out when my brain asked it to and my fingers were slow to uncurl and then grab the handle. I noticed that my hand preferred to remain in a slightly curled position when at rest. My left leg was also as slow to respond when asked to move. At times I had to physically lift it to get in and out of the car. Yes, I went to the doctors and was told I strained my psoas muscle. Then I was told I had an abcess on my psoas muscle. I told them non of that was true it was bigger than that. No one listened. Now on top of this for the past year I was having severe pain in my left lower abdomen and groin area. At times I would have partial bowel obstructions. My abdomen would blow up and distent out and I could not poop for days and experienced nausea. I lived on clear liquids. How I would get thru it was to literally press my hands into my abdomen and attempt to move my bowel and tissue to get things moving. I was grateful it worked most of the time. Nothing is worse than dry heaves and spastic bowels and you are sitting there in severe pain praying something comes out. When I finally would get the right spot I would hear and feel a "pop" and the pain would start to subside and my bowels over the next few days would begin to move. CT Scans, Barium studies showed nothing except some areas in my small bowel that were narrower than the rest. I believed I had an inguinal hernia. I could feel it and the symptoms were word for word as the Merck Manual for physicians describe it. Too bad non of the doctors I saw listened or even touched my. Finally, a physiatrist referred me to a brilliant man at Jefferson. Dr. Nazarian does functional/musculoskeletal ultrasounds. Eventhough the script said to rule out psoas strain or abcess which was negative. We talked and he said your symtoms sound like a classic inguinal hernia that is common in men. He said that because of being a chiropractor and performing anterior adjustments on thousands and thousands of patients he suspected that is what I had evenghouth it is rare in females. Females usually get femoral triangle hernias. It was quite simple to find. I simply did a sit up as he looked at the area with the ultrasound and wala there it was my intestines slipping thru the inguinal area!!!!! Yeah, I was validated finally after 18 months of trying to get answers to this terrible pain. I then chose the wrong surgeon to do the procedure and wound up in the ER unablel to urinate or see because of the scopalomine patch on my ear and the amount of damage from banging around during the laprascopic procedure to use mesh to fix the hernia. If it was not for the help of one of my patients who was a nurse I could have gone into shock and died because the doctor who did the surgery would not return my numerous calls that something was terribly wrong because I could not urinate and I was unable to focus my eyes well enough to read. My client told me to immediately take the patch off my ear because the side effects of that drug is to paralyse eye and bladder muscles. She had seen it many times with her students that used certain mushrooms. Off to the ER I go to be caterized. The nurse was very concerned and had to shut off the bag because my bladder was so full if she suddenly drained it I might not regain bladder muscle control in the future. So she drained a bunch off and then over a few hours would leg more drain. She was brilliant. To be honest, nurses are way smarter than the doctors. I was sent home with a bag attached to my leg and told to contact a urologist to have it removed. 3 weeks was the soonest I could get into any urologist in the region - unexceptable!!!!! I called my patient who informed me that once I could read I could remove the catheter so about a week later she guided over the phone how to deflate and remove my own catheter. Then of course a UTI appeared. In the mean time the surgeon insisted that I had a preexisting bladder condition and took no responsibility for not returning my calls or what he did to me during surgery. More of what he did to come.
Now back to the lyme stuff. One month after the inguinal hernia surgery I was suddenly struck with such severe fatigue that I could not even lift my arms or legs to get out of bed. I developed a large bullseye on my abdomen. This trip to the family doc proved to confirm at least the clinical presentation of lyme disease. He did another Elisa test and it was negative. I took doxycycline again and was grateful it helped again since now I was also experiencing wandering unexpected joint swelling and pains popping up around my body.
I began to go back to work part time. Between the fatigue, reading and writing compromised, weaker left side of my body........ It was all I could do to make it thru a few hours a day. I gradually improved, however, never to return to my old self but as I said earlier, I come from a working middle class family. You just did what needed to be done. Suck it up !!!!
By the summer of 2007 my physical and mental deterioration I was now seriously worried. Not that any normal person would not have worried experiences half of what I was living with on a day to day basis. I was flipping channels and came across a show called Medical Mystery Diagnosis. I watched this episode about a the owner of a landscaping company and all his trials and tribulation around his strange symptoms that landed him in the doctors office and ER many times. Now this is a strong working man that was crying out for help and loosing his business. What the medical profession told him was see a psychologist. How degrading!!!!!
Honestly, that is what the medical professionals were hinting to me. Just because they don't know what is wrong with people they think it is in our heads. Additionally, when you are a strong willed person and on the outside "LOOK OK" what else are they to think. It must be your mind that is sick. - WRONG. (please see previous old blog post on this subject: http://donnagigliotti.blogspot.com/)
Back to the TV show. I tracked down and contacted the show but they were of no help giving me the name of the doctor that the gentleman went to. I had tried to read the name on her lab coat and hoped that I got it correct. I had no idea what state she was from or her specialty. Well, I did it. I found her. Dr. Lesley Fein MD PHd. in NJ. I contacted her and made an appt for 3 months out. At least I had hope someone might take me seriously and figure this out because I knew it was not heading in a good direction.
It was late summer of 2006 that I finally had my appointment with Dr. Fein. She took 19 vials of blood and a full exam. To make a very long story short both specialty labs confirmed I had Lyme. I had 5 bands positive which according to the CDC is the most you can have thus confirming it. 6 Elisa tests by Lab Corp over the last 10 years were all negative. That is another story as to why the tests come bank falsely negative and there is plenty of literature out there on the lyme support websites to explain why that happens. I also was positive for Epstein Barr, ParvoB-19, Herpes, and to be honest I can't remember the entire list. I just know Dr. Fein looked at me and said," Donna, I have no idea how you even get out of bed each day let alone work?!" I began taking doxycycline and some other drug to try and rid my body of the spirochetes existing in their various stages and hiding places in my body. The spirochetes love to hang out in ALL tissue depending on the stage of the spirochete. Meaning, swimming around small spirochetes are in the blood, nervous system including the brain, organs (especially the hollow ones)...... and the cyst forms that burrow and hang out in the muscle and cartilage only to be activated in the unknown future. All of them recking havoc on the tissue and activating the immune system to continually be on attack mode in an attempt to locate and destroy this evasive stealth organism that has the ability to change it's outer jacket and look different on a daily basis.
Well, my road of taking pharmaceuticals was very rocky. I experienced every weird side effect possible for each drug. I know that I drove Dr. Fein crazy because my body was so sensitive to anything that was put into it. The doxycycline caused headaches, burning shooting pains down my arms, Raynoud's symptoms in my hands( painful, cold, white to blue fingers out of the nowhere), terrible gastrointestinal distress not to mention the overwhelming fatigue and body aches. I also developed what looked like Bell's Palsy on the left side of my face by the end of a work day. The fingers on both hands were curled and I was experiencing terrible cramping in my forearms. Now remember this all is happening after I had that severe pain in my head that resulted in weakness and slow response time on the left side of my body, slowed speech and gradual loss of ability to cursively write. At work I would hide my hands in my pockets until the patient layed on the table and then I had to manually open them and place them on my patient so I could work. I was mostly barefoot or had on hard hiking boots because the neurapathy (nerve pain) in my feet was so bad that when I got out of bed in the morning I cried when I attempted to walk. Once I got moving it was less and I could do my best to tune it out. Heck, I had so many other body pains I could not dwell on any one.
By the end of Oct 2007 I went back for a follow up to my doctor and she immediately closed my practice. That was devastating. I was seeing and helping patients one day and closed 2 days later. Dr. Fein was correct in her decision because the stress of trying to practice was not helping my immune system. However, the mental decline to follow was worse. It all went to hell in a hand basket as they say. Yes, I did have more time to rest physically however, the endorphins and serotonin that my brain released when in contact and helping others was lost and I felt worse. I did make the decision to return to my animal practice on very limited basis. I had to do something otherwise no drug in the world could have helped my emotional well being. The animals saved my life.
The beginning of 2008 Dr. Fein put me on a new drug Bicillan which is an injectable penicillan that would cross the blood brain barrier to kill the spirochetes in the brain and central nervous system. They also use this drug to kill Syphilis which is the same family of organisms. Every week I got a very painful injection of thick, cold white goo into my buttock muscle. We would alternate sides each week because it left my buttock very painful. This drug in the long run did help but not without some severe side effects for me. As I approached the full dosage recommended each week I began to experience electric like shocks and impulses that would spontaneously shoot down my arms and legs. It felt like someone stuck my nervous system into an electrical socket many times during the day. If that wasn't enough I lost some of the ability of my frontal lobes in my brain to sensor what I was saying. I had very little and at times no ability to sensor my words. I would just blurt out a word or thought. I even would curse. That is not me. I am a doctor who chooses my words carefully. I sensor my emotions and usually present myself as a calm, rational professional. Not now. It got so bad that I reduced the medicine to only 1/4 dose once a week and then had to discontinue it because I was worried about the significant personality changes I was experiencing. Who was I becoming? It was bad enough to be loosing control over my physical being and now to be losing my mind. I had to stop this and get a grip on myself because I was afraid I would never recover. There were and are other drugs I could have tried but I could not afford them and my insurance did not cover them. At this point I was spending $15,000 every year for 3 years in a row out of pocket (over and above the little insurance paid for ). Remember I was barely working. I had to just to pay my medical bills.
We tried many drugs over the 5 years I was on medications. Each attempt included 2 drugs at a time in an effort to hit all forms of the every morphing/changing spirochete. My gastrointestinal system was trashed, my mind was mush and my body was falling apart. I developed fibromyalgia that was so severe for a while I could not lay in bed. The pressure of the bed and sheets against my body was so painful. I believe this was a result of the dying spirochetes collecting in my body and all the byproducts from drugs made my body a toxic waste site that could not empty it's own trash. A chiropractor in Vermont told me about natural laytex beds. $2500 later I bought one and that allowed me to be able to sleep. To my suprise what helped the swelling in my body was riding the lawn mower. Really? Yes! The vibration moved the toxic, waste products that were trapped in my tissues and over burdened lymphatic system. When I sat and rode on the lawn mover the severe swelling in my legs and body reduced, I felt fantastic. Well, fantastic relative to feeling like shit. But to me I was having a great time while it lasted. Now they have fancy vibration plates you can buy to do the same thing. However, for me at the time I used the lawn mower or I sat on the washing machine when it was in spin cycle. Not quite as effective but better than nothing. Now they have fancy vibration plates you can buy to do the same thing. Today, I can bounce on my small Jump Sport trampoline and it will do the trick. It also helps to tighten up my ligaments that were so badly stretched as a result of the repeated severe joint swelling over the years along with a compromised nervous system which controls those ligaments and muscles that stabilize the joints.
Back to the drugs, after 5 years of battling drug side effects that were at times worse than the physical, mental and emotional symptoms I was experiencing as a result of the host of viruses, bacteria, organisms and spirochetes my body was contending with I decided to stop taking prescription drugs. I had refused many drugs over the 5 years to help with the pain because their potential side effects were worse than what I was already dealing with. Dr. Fein told me about a new approach Nutrigenomics which uses a map of your genetic make up to see how it works and potential glitches. It also offered answers and guidance for her as to what drugs might do once in MY body vs someone else's so she could chose the most effective drugs at the most effective dose for my body. Well it turns out that all the drugs I had taken and we argued about over the years on how I could not take the prescribed dosage because of the severe side effects I got was correct. God bless Dr. Fein because over those 5 years she would get annoyed with me because she could not understand how 50 mg of doxycycline a day or every other day worked for me and I had no appreciable side effects. This was true for many of the drugs. Now with the genetic information I was justified. A few years ago when I took my mom to her ,Dr. Fein asked if my mom had a certain genetic mutation/variation. As a result of that genetic variation she could take doxy every other day at a lower dose because her body did not eliminate it well. The second drug Rifapin was given at a children's dose because my mom's body used it so effeciently that 50 mg in her body was like giving 300 mg in someone else. As you can guess I laughed out loud in Dr. Fein's office and we looked at each other knowing how we had struggled in the past without this knowledge. I commend her for her quest to continue to learn so that she can be the best doctor possible.
My genetic make up and how my biochemistry works in my body also played out in the foods and supplements I was told to eat that in reality made me worse. Yes, I frustrated most physicians both conventional and alternative. They made blanket recommendations to me as they do with others which were not good for me. They were not aware of the emerging field of Nutrigenomics. If I took the supplement Omega 3 which is high in EPA I got very tired and my joints would become more swollen. Why? Because my body is missing an enzyme that converts the Omega 3 to follow the anti inflammatory pathway so it went into the pro inflammatory pathway and I experienced more swelling in my body and brain. I was juicing every morning using all the foods we are told that are good for us - kale, collards, spinach...... wrong for me. Those foods are very high in sulfur and clogged up my detoxification pathways again making me worse. I did not know that was the mechanism happening in my body. I just figured out that if I eliminated those from my juice in the morning and used lots of cucumbers instead I felt better. Prior to figuring this out I would have to go back to bed every morning after drinking my juice and eating oatmeal. Go figure. The point of this part of the story is listen to your body!!!!! Yes, it was very hard when I was feeling bad and the so called health professionals were telling me I was difficult and that my symptoms and reactions to things were in my head. NO THEY WERE NOT! They were in my genetics and very real. They were just not smart enough to know and really did not care. They were wedded to their beliefs and the hottest fads that were being touted at the time.
Physical therapy was another nightmare. PT professionals were stressing that unless you do 3 sets of 10 repetition each a person would not build muscle or improve. Well, for me at the time, 3 sets of one exercise would put me back in bed with complete exhaustion for hours and if I pushed beyond that would set me back 3 days. I wanted to do something and needed to do something. I decided that I could do 3 repetitions of 3 exercises a day and I was ok. I made sure that I made the most of those 3 repetitions concentrating on perfect form and visualizing the muscle working. I did my best to assess my entire body position during the exercise. This regiment worked for me and in fact I got better and stronger. It took many, many, many months. In 2013, when my balance had gotten very bad, I was not aware of where my legs were when I was walking and could not feel the ground under my feet. I was forced look at my legs and feet when I walked so I knew where I was stepping. One day my left leg slid out on ice and dislocated my hip, tore the inside hamstring muscle from the bone near my groin and bulged 2 discs. It was a bad time. I went to several orthopedic specialists, 2 chiropractors and 2 spine doctors. Finally, a spine doc from Vermont took enough time and cared enough to figure out where the pains were coming from. Just knowing helped me feel better. For 2 months prior to seeing him I had to wrap a thick horse lead or belt around my left upper leg, twist it inward just so that leg was stable and reduce the pain so I could walk. I had not been able to sit on a toilet for 2 months because of the severe pelvic and low back pain. One of the orthopedists rolled his eyes when I told him I had neurologic lyme for over 10 years at that point. Well, from that moment he completely dismissed me. He categorized me in the crazy category. His exam was pitiful. He did not even touch me. I was there because of searing, burning pain from the inside of my left leg to my pubic bone and vagina. I finally said to him aren't you going to do a proper exam. He said he didn't think anything was wrong and maybe it was some strange lyme nerve pain. Interpretation - you are crazy. I sat on the exam table and told him I am an athlete and do not go to doctors unless something is very wrong. I will not leave until you write me a script for an mri of my hip and pelvic area. Well, I got the script for the mri of the hip. About a week later when I went back for my follow up he looked very sheepish. He should have because I had torn the medial hamstring from the bone. He said he could not believe I was getting around. I left there never to go back. I took the info to a local physical therapist in my very small town in the Adirondacks and Amanda Carpenter gave me exercises. I had to scale them way back but I did them everyday and eventually got better. I also figured out that my hip was not properly seated in the socket. Yes, I had also been to 2 chiropractors who never checked and probably if they did would not have found it anyway. So, I took matters into my own hands again. First, I had to get over being very mad because I felt that I used to fully check my patients and fix them. Now, I was looking for help and no one took the time to do their job and/or weren't skilled enough to figure things out for me. Once, I worked out the anger, frustration, disappointment stuff I began researching the most common directions a hip would dislocate. Since I could not check myself the way could patients to ascertain the exact misalignment direction of my own hip. I took myself to my 1845 horse barn and laid my left leg over an 8x8 beam and let my body weight drop. POP. My hip went into the socket. I could stand on my leg!!!!! I waited a few days and then visited the beam again. This time I laid sideways over the beam to put pressure on the outside of my leg to move the femur. It worked!!! I then began wearing very tight compression shorts and wrapping a lumbar belt very low around my hips to help hold everything in place when I walked. For exercises to strengthen, 4 times a day when I fed my horse Ben I would put my foot on his feeding mat and drag it across the mat from lateral to medial (adduction ) and then medial to lateral (abduction ). I would do 4 swipes in each direction. Each time visualizing, monitoring my body posture and muscles being used. I began to heal and get stronger. On another realm I began to use Louise Hay's book of affirmations. Hip problems are described by Louise as problems with the belief system that one has nothing to move forward to, loss of joy in life. The affirmation I began to say that morning I first went to the barn to adjust my hip was Hip Hip Hooray there is joy in everyday. I am balanced and free. I move forward in life with ease and with joy. (please read previous blog post on this subject of shifting how I thought about Dis-ease).
This episode forced me to be totally out of work for 22 months. Even when I could walk and stand longer periods of time I still could not sit long enough to drive to work and lean over for hours to work on the animals. I saw a Dr. Todd Schatinski at Albany Medical Center. He is a non surgical orthopedist. Amanda Carpenter, PT, referred me to him. Amanda said he was very smart and could help figure out was still going on with me. The apptointment quickly did not go well. The doctor read my chart and said "I see that you have been to 5 doctors for this condition in the last 6 months....What are you looking for?" I am a health professional and I know that usually when physician asks that question they are implying that the patient is out seeing perscription drugs. As a patient I should not have to defend myself against unfounded allegations. I sat on the exam table and fought back the tears that were welling up inside of me along with the anger and disbelief. I am a health professional just like he is. I took a deep breath. I said Dr. S. , Amanda sent me to you because she said you are a smart man and could help me figure out what is going on and guide me so that I can get better. I am desperately trying to get well enough to go back to work. I have lost a significant portion of the functioning of my brain. Most don't know this because I was very smart (valedictorian, top 5% of my college and summa cum laude graduate from chiropractic school) I had a photographic memory and now I can't even read and comprehend and article out of a gossip magazine. Even with that significant cognitive compromise I was smarter than those doctors. I will continue to go to doctors until I find one smart enough to talk to me and help me. I began to tell him that I am not on any pain medications or drugs of any sort. If you had reviewed my history intake form you would have seen that. I went on to tell him my health journey and challenges I have faced. I explained that I have been doing most of this alone. Figuring out what was wrong with me and then how to heal from it. I was hoping that he could help me figure some pieces out so that I could tailor my rehab program so that I could rejoin life and get back to work in some capacity. At the end, I completely broke down in tears, sobbing on the exam table. NO patient should have to get to that point when trying to get appropriate diagnosis and treatment. governor Dr. S. sat deeper into his chair taking a long pause and deep breath. I saw his entire demeanor change. Something I said struck a cord in him. Dr. S went on to tell me his own health challenges to get proper care for is very bad knees. he said that when health professionals go to other health professionals they tend to get brushed aside. We talked about the why's of that. One could be intimidation or that the patient, being a doctor, know enough therefore does not need a full explanation and plan. He said that he had to go to another state and stay anonymous in order to get the proper care for his own orthopedic condition. He then said, Let's see what is going on with you. After he watched me walking to assess my gait and various orthopedic tests which could tell him about my muscluloskeletal system and some insight in to my nervous system and brain function we talked. Dr. S said he did not know what was wrong with me but clearly there was something significant. He said Donna, If you did not know what a normal person should look like walking and moving you would not be doing it. He said that he could see that with every step I corrected my body posture so that I could walk and "look" normal. He said that I must be exhausted from this diligence. He then went on to say that the compromise to my joints and ligaments was significant and that if some one else was to go to PT for this it would take 4-6 weeks for them to be better. However, it will take you 3-6 months to get half those results because of the severe fatigue, inflammation, neurological and musculoskeletal compromises I face. Now to most of you reading this that would sound like terrible news. You might even throw in the towel and say why bother. Not me. I was happy to have validation that I was not right (which I knew) and information so that I could make a plan for myself to move forward. I thank Dr.S and left with renewed hope. Now to tailor my rehab. I still had to keep in mind that I suffered from severe Chronic fatigue and fibromyalgia which limited what and how much I could do. As long as I stayed under the threshold of stressing my body and producing more inflammation and using up my energy stores I should be ok. Tricky but ok.
The point of all of this regarding PT is that you again must trust your body, listen to your body. Yes it takes me months to rehab a part but it can be done. Exercise if done too much is perceived by the body as a stress. Stress increases cortisol and that creates inflammation. The body cannot heal when inflammation is present. It has a one tract mind. To this day. I exercise the same way. Otherwise I get tired and sore which leads to discouragement and then I have to stop because I feel worse. I found it better to be the tortoise rather than the hare. I still cross the finish line !!!!!!!
During the course of those really bad years of Lyme (in 2017 still was CDC positive), Fibromyalgia, Chronic Fatigue (still have), active Epstein Barr (still cycles active), Herpes (still cycles active), Parvo B19 (still have very high positive numbers) and the complications of that potential stroke like incidence I researched many modalities to help me and the following is a summary of those that I did and still do.
Brain Gym - this technique helped me to stimulate my brain so that the left and right sides would communicate the best they could. It really is true that if you don't use something you will lose it. The nervous system has the abiltiy to heal by growing more connections. Even if those connections have to go around a dead spot or bad spot in the nervous tissue. But, to make that possible you have to be giving enough stimulation into the system to move it along. At my worst, I could not take a tennis ball in my left hand toss it over to my right hand which was only 6-8 inches away and catch it. Now remember that I play college softball, and volleyball and was recruited to play basketball which I chose not to do. But that is another story. I devised a rehab program that utilized drills I used to do in those sports that I knew would stimulate my nervous system and brain to communicate left and right side. At first I could not dribble a basketball or bounce a tennis ball and catch it. So I began with those. Yes I was very frustrated and sad. At times you could find me crying as I attempted to bounce a basketball (dribble) with one hand. I looked like a young child bouncing a ball for the first time. Day after day I continued to dribble. Then I moved on to bouncing a ball with my left hand so that it would cross my midline to my right hand. Another exercise was to take a tennis ball and in the beginning hand it from my left hand into my right hand As I improved I could separate my hands and toss the ball from one hand to the other. Anyone watching would think they were watching a move in slow motion. But no, that was real for me. Movements were not simple nor automatic. I had to think, and monitor each movement and body position and posture to ensure I was moving correctly. No sense doing haphazard movements. I needed to reprogram my entire body to work and move properly and that took en eye for detail and precision. Thankfully, I was good at that with my patients. It was just that now I was the patient. Other exercises I did from Brain Gym were cross crawl, drawing figure 8 in the air and on paper. One day I bought a set of jacks. Now that was way to challenging but after a few weeks I didn't look like a total spaz.
How did I keep my spirits up in the face of so much disappointment. I tried to set very realistic goals for myself that I thought I could accomplish. Because if my goals were to hard I would not reach them and therefore get discouraged and stop. Stopping was not an option if I wanted to get back to some sort of life. My goals were more like could I bounce the ball 5 times successfully. That meant I had control of the ball no matter how slow I was doing it. As much as I wanted to increase what I was doing I knew that if I did I could push my body too far (even 2 bounces too much) and it would deplete my limited energy and set me back a few days while my body replenished itself. My Lyme doctor told me that I was a diesel car with only 1/4 tank of diesel and not to expect to be able to drive up Mt. Washington with only a 1/4 tank because I would deplete the tank even the reserve tank. Diesel engines are different than gas engines because if you run them dry it takes effort to get them going again. You actually have to fill the tank and prime the diesel lines to refill them so that the diesel can be sucked into the engine and the car can run again.
Balance exercises - If I closed my eyes I would fall sway all over and eventually fall to one side. I needed to be able to use my eyes to find a spot in my world so that my brain and body knew where it was in space. Kind of like how the ice skaters or dancer spin and don't get dizzy because the focus on a spot as they are twirling. Well, I was not twirling around. I was just attempting to stand in one place. How sad is that. I began this part of my rehab by standing and holding onto the wall with one hand and every so slightly lift one foot barely off the ground. I would then monitor and correct any part of my body that was compensating as a way to educate my body how to move again. This also retrained my core. I knew I was improving when I did not have to hang onto the wall for dear life and was eventually able to not be touching the wall at all. I increased the time I could stand on one leg. Then I tried standing on a balance pad with both feet and progresses to standing on it with one leg only. I would do these exercises in the evening while watching tv. Everytime a commercial would come on while watching Wheel of Fortune I would do my balance exercises. Wheel of Fortune was my way of hoping to improve my brain function. Watching the wheel go around helps the cerebellum for balance, reading, problem solving....... it is life saving for me. As I improved I would add arm movements while I was standing on one foot. I still do these exercises off and on to challenge my brain and body.
Hip, buttock, core exercises - Again during commercials or while washing dishes I would stand with my feet together and squeeze my butt muscles together. By moving moving my feet from a position where my toes were pointing forward to having them pointing to the sides like a duck I would be able isolate and contract different hip and buttock muscles. When I walked I would slow my walk down so that I could contract my buttock muscle with each step that my foot hit the ground. Amanda, the PT, told me that people are under the misconception that are back muscles stabilize us when we walk but in reality the basis of our spine stability comes from our foundation which is our buttock and hip muscles providing a strong, solid foundation. We should not be using our back muscles for stabilization.
Retraining back muscles - I began to do some conventional back strengthening exercises and quickly realized that my muscles were not working properly. They were not being directly properly from my brain down the nerves to the muscles themselves. How was I going to get these pathways to work agian? First I began by tapping on the muscle I wanted to focus on strengthening and then I would attempt to contract only that muscle. Over time the ability to contract and isolate each individual muscle got faster and stronger. Yes, this takes alot of concentration, patience and one must be fully engaged in the process. I had first learned of this was of rehabilitation from a book titles A Revolutionary Way of Thinking by Richard Krebs. He had suffered a severe case of the benz from a diving incident and this is the process he used to regain the feeling and control of his body. I first used this technique after I had that sudden pain in my head and weakness in my left arm and leg. Another thing I did was us an instrument called the Stabilizer - pressure bio feedback device by Chattaanooga. It is a glorified blood pressure cuff that you put under a muscle or group of muscles that will give you feedback so that you know if you are engaging the correct muscles or not. Some times we think because it looks like we are doing an exercise that we are using the muscles properly. However, may times we are not because we have compensated so long for weak muscles that other muscles have taken over the job. For instance, if I want to lift my arm out to the side I should only be using the muscles in my shoulder (deltoid, supraspinatus). However, many people lift their arm by contracting their neck muscles such at trapezius, scalenes, splenius. So even though my arm goes up it is compromising my neck eventually causing neck pain and headaches and can even affect the ability of the ribs to move properly affecting breathing. The small device helped me to isolate my back muscles and only use them when they were supposed to be working. I also employed the same mind set which was very few repetitions as to not tax my already depleted body. Each repetition was done slowly being fully engaged in the process, conscious of what I was doing and what was happening in my body. Visualization of what was happening or what I wanted to happen was the most instrumental piece of everything I did and do. Even though I knew what a muscle looked like, where it was in the body and what it was supposed to be doing I still looked it up in a book (yes I still use books, there is nothing like flipping pages and touching the print). This picture on the page solidified my visualization and then I could picture the muscle in my body. Full intention on it along with the visualization intensified the process and helped me progress more quickly. Well, quick is a relative term. But, instead of years it took months. This proved and still proves to be my best method for exercise and life.
Nutrigenomics - this is the study of the interaction of nutrition and genes, especially in regards to the treatment and prevention of disease. Sterling Hill who founded MTHFR Support and her ground breaking program to interpret the genetic snips from 23 and Me or Ancestry allowed me to see how the physiology of my body worked, didn't work, or had the potential when stressed to not work properly. I was able to use specific supplements to replace or support those areas in my biochemical processes that were lacking. It also gave me insight into what foods would stress my system and cause a cascade of problems. This is how I found out about my inability to convert Omega 3 EPA and thus resulting in extensive inflammation in my body.
Eat right for my body and physiology - We are not all the same. One person can thrive on gluten free and another might put on excessive weight and increase blood sugar as a result of that type of diet. Listening to my body, observing how foods made me feel, and keeping in mind my genetic predispositions I found a way of eating that works for me. It was not what is and was being touted as the best diet. It is the best way of eating for me and that is all that matters. Trust your body, listen to your body. Moderation in all things is still the best approach. Unless of course you have adverse reactions to certain foods then stay away. I am allergic to shellfish so of course non crosses my plate.
Louise Hay Affirmations - As my body had been broken down and forced to rebuild and change so was my mind, my thought patterns, what I believed in and what I thought was true about myself and the world. I was faced with looking at my beliefs (or what I thought were my beliefs) and assess what was and is true for me. I realized that many of my beliefs were passed down from parents, teachers, society and many had no real basis in truth or reality. Much of what we believe and do is simply because that is how it has always been done. Humm........ When I was first introduced to Louise Hay's work my mind was scrambled. I was a doctor and everything was based in science. My world existed because I could touch it and prove it, no matter what it was. Illness was caused by some " thing". Now comes along this concept that our thoughts and beliefs affect our entire being down to the DNAin our cells. Wait, no way !!! Two very different thought worlds just collided in my head. Yes, lot's of wrestling with that went on for years. Too bad I couldn't just accept it I would have moved on in my healing process so much quicker. Strong will and stubbornness are good qualities, however, in some instances they get in the way. ( Please read the post in my old blog for more on this subject: http://donnagigliotti.blogspot.com/ ) To make a very long story, drawn out over a few years of the universe hitting me in the head with this I finally gave in and tried it. What did I have to lose? I could not walk anyway and no one had answers or was offering any real help to me. It was 2013 when I pulled the book Louise Hay's book Heal Your Body off my shelf and began to turn the pages until I got to Hip Problems. Yes, I already had the book collecting dust on my shelf. To be honest I have no idea how it got there but ever grateful it was. I began to read what she wrote about the thought pattern around hip problems. Hip Problems: Fear of moving forward in major decisions. Having nothing to move forward to - BINGO!!! The affirmation to help shift thought patterns and thus heal the body was : Hip Hip Horray- there is joy in everyday. I am in perfect balance. I move forward in life with ease and with joy at every stage. Since I was also dealing with bulging discs in my low back I began to say this affirmation also. I trust the process of life. All I need is always taken care of. I am safe. I would repeat these affirmations at least 5 times 3-4 times a day. I had alot of convincing to do. Well, to my suprize and amazement after 3 days is when I was able to walk enough to go to the barn and pop my hip back in place. I continue to refer to Louises's work often. Now I go there before I look up my physical symptom and try to blame it on some physical cause. Now I look at what my brain is believing and telling my body. For me having clear thoughts and mindfullness has proven to be the key to helping me keep healthier, body, mind and spirit. Thank you Louise Hay.
I am going to stop writing here and pick up in another blog entry how life is now living with chronic issues. stay tuned for more. Thanks for reading and hope my story can help someone move along their healing path more quickly and with less suffering. Donna
