My Journey My Challenge – Multiple Sclerosis Journal X

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by Jewel Tyler

Once back at work, because of the volume of work which had to be done, I started working from 6:00 am until sometimes 11:00 pm everyday.  The long hours at work started to take their toll on me.  I was overwhelmed with fatigue; my left leg was causing me so much pain and numbness.  The most challenging was trying to remember various configuration settings I had to perform on my client’s computer systems.  I recall one client that I had to totally reconfigure five of their applications.  I signed in on their server and my mind simply went blank.  I was so frustrated.  I had to come up with a system and organize myself to be able to perform my duties.

I collected various colored notepads and jotted down configuration settings for all of the different applications I was responsible for on a daily basis.  My idea paid off, especially for the client’s which required training on how to configure their various applications on their servers.  Success!

One day I was on the highway driving home from shopping, as I was driving my vision started to become blurred.  I wiped my eyes, and blinked repeatedly but to no avail.  I simply could not see clearly everything was doubled the words on the signs for exiting, the cars swooshing past me doing 75 miles per hour or more (that is the speed limit in Dallas on their highways).  I was so nervous, I recalled on one of the many videos I had watched on MS from the MS Society that if you close one of your eyes that is not being affected with double vision one could see.  It worked, I was able to get off the highway and pull over.  I called my son and asked if he could catch a taxi to my location.

The next day I awoke from my sleep around 3:00 am I had wet the bed, and when I stood up I had a very bad case of Vertigo and my vision as once again distorted with seeing double.  I immediately emailed my boss to tell her I would not be able to make it to work and explained what I was experiencing.  I called the Neurologist and she asked me to come into her office.  I was feeling a repeat of what put me in the hospital for a month.

Once at the doctor’s office, she examined me and explained she had all of my test results and her final diagnosis was I did not have Multiple Sclerosis.  I asked what could be going on with me?  She replied “I don’t know what is going on with you, but I am sure it is not MS, your lesions on your brain even though you have over 9 they are not significant enough to be MS.  I’m sorry; I can no longer treat you.  I can however recommend a pain specialist.”  Tears began to stream down my face, I was not just dealing with pain, but Vertigo, double vision, incontinence, and numbness and tingling.  My left let was practically useless; and I was looking at this woman whom had just said she basically had no idea what was going on with me.  I stood and made my way out of her office.  A complete waste of time, money, and so much more.  I was devastated; I had no idea what to do next.  All I knew I was sick, and it was getting worst.

I called my family practitioner to schedule an appointment, maybe I had diabetes or something, I had no idea what was going to happen next.

 

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My Journey My Challenge – Multiple Sclerosis Journal IX

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by Jewel Tyler

Before leaving the Rehab Hospital, the case worker that was assigned to me located a doctor that specializes in MS and set an appointment for me.

My mother arrived around 4 am, she was exhausted, and they drove from Virginia nonstop.  I felt a bit better but I was nowhere near my total self.  My left leg was just simply dead weight, I had my cane to assist with walking but the real challenge was trying to get up off the sofa.  My therapist had recommended that I move my bedroom to the first floor for fear I would fall down the steps.  It was really a good thing my sofa had a chaise connected to it.  This was my new bed.  I only ventured upstairs when it was time to take a shower. My mother had brought her airbed with her and she joined me in the living room.

Finally, it was time to go for my doctor’s appointment and meet my new doctor.  In the back of my mind I really wished I could have had Dr. John Harney as my physician he seemed to be the only doctor that really took the time to listen and explain what was happening to my body.  To no avail I was off to my appointment.

The inevitable occurred, when I exited the car I could not walk.  I was so embarrassed; I did not want my mother to see me like this.  I know I had no control over what my body was doing, but for some reason I was embarrassed, tears began to flow I had no control over them.  My son hugged me and said “mom it’s okay I will go inside to see if they have a wheelchair somewhere.  I am a determined woman.  I decided I was going to walk in; with my mother by my side after 15 minutes, I made it into the building and to the doctor’s office.

The new doctor was a young black female that looked like she had just graduated college.  My family joined me in the examining room; and we discussed everything I had been through.  She wanted to take some time to review all of my medical records I a brought to her, including my MRI’s and CAT scans.  She returned to the examining room and said she wanted to start scheduling me for tests.  After inquiring as to what tests I would have to take, I started to become discouraged; she wanted me to repeat all of the tests I had already went through with a couple new ones.  My first thought was regarding my health insurance, I know they were probably wondering why I was going to repeat the same tests for the third time.  I consented, because at this point I really did not have much of a choice.

The worst test I had to endure I do not even recall what it was; but I do know it was extremely painful.  I had to lay on a table and the technician inserted long thin needles in the muscles of my legs and attached wires and then sent electricity through them into my muscles.  When the testing was done, I was in so much pain but had to return to work.  The things one has to go through all in the name of medical science.

My mother eventually returned home, and I continued my physical therapy three times a week. My time was spent going to the doctor’s office, going for the various tests she ordered to have done and physical therapy.  My body began to get stronger, my short term memory was getting better and my job was pressing me on when I was going to return to work.  I knew I had to return soon, amongst everything else I was going through I had to battle with my insurance company regarding my short term disability.  They stopped it altogether because one of the many doctors that had treated me during my stay in the Rehab hospital failed to respond to one of their request.  My back was against the wall, no money; pressured me into going back to work before the recommended time by my doctors.  I conceited and returned to work and prayed that God would give me the strength to do handle everything that was before me.  I stopped the therapy, I had finished all of the tests the Neurologist ordered and I returned to work to a huge mess.

My Journey My Challenge – Multiple Sclerosis Journal VII

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(continued)

By Jewel Tyler

Later that day my vitals stabilized and I was moved back to my private room.  I was visited by so many different types of staff and administration.  The discussions were about which facility I would be moving too because I  as not going home.  I had to now transfer to a Rehabilitation Hospital and I needed to decide which location.  The other visitors were regarding the selection of a neurologist since I had fired Dr. Gupta.  I wanted Dr. Harney, but because they both worked in the same office, Dr. Gupta blocked me from being his patient; even though he was the doctor that finally diagnosed me with MS.

The pain was excruciating from the Pace Maker surgery.  I had to wear a sling and I could not lift my left arm above my head and not really utilize it for much of anything.  Which was not going to be a problem since that is the arm and hand which was paralyzed partially from the MS exacerbation.  The other thing with being in the hospital for so long and all of the drugs was constipation.  My best friend was by my side the entire day.  She was such a doll and wonderful support.  I had many visitors from work when I was more calm and aware; I realized the first night I was admitted I had contacted one of my co-workers that I knew had MS.  She asked which hospital I was in I shared the information with her.  I was thinking she could pass the information on to my manager because I had just been admitted.  When I was first admitted I was rushed for a CAT Scan with dye and then on to have an MRI with dye.  Along with everything else, I was administered morphine, because after I was removed from the MRI machine and placed back on my bed I was in excruciating pain.  It was my lower back, I could not move, it brought tears; and I can take some pain!  Morphine was provided and I was once again in my room.  I dozed off, and when I awoke there at the foot of my bed along with my son was my co-worker, I could hear her but I could not see her clearly.  All I can recall saying to her was “Wow Carolyn there are two of you, everything is two.”  Then my vision in my right eye was gone, I know I must have looked pretty crazy closing and opening my eyes trying to focus.  Once again, they returned and more Morphine in my IV.  That is all I remember until the next day.  She was gone and I felt so embarrassed.  A doctor arrived that first day after being admitted prior to my heart surgery and informed me a new little known fact.  I had Arthritis in my lower spine, that is why the pain was so great the night before.  One more thing to add to the list!

My son would come to the hospital diligently twice a day before and after work.  Poor baby I felt for him, new to Texas, new job and then all of this happening with his mom.  He is my youngest son and this was a lot for him to have to deal with.  However, I guess also he received well learned lessons. He had to handle the bills and everything with maintaining our home.  And I believe him having his Auntie Lisa (you know in the black culture best friends are Aunties to our children – smile) around was a huge plus.

I felt like a total mess but tried my best not to show it.  Pacemaker surgery in full exacerbation, learning I had MS it was a lot to undertake.  However, the biggest factor was all of the different things which was going on with my body as well as my mind.  I could not remember anything, and it was driving me batty, I pride myself on my level of intelligence and things I know.  Therefore, to have a discussion with my girlfriend and I would just draw blanks brought tears.  My son though was such a huge support; we are both big movie buffs and have the same favorite TV shows.  When he would visit, he would want to discuss movies and TV and I would sit with a blank stare on my face because I could not even remember a character from a movie I may have just watched.  Nevertheless, he was there when the Therapist had the discussion with me regarding the cognitive therapy we would be doing and she explained to him how to help me with memory exercises.  He was on it!  Love him and he still works with me on this to this day.  He has so much patience with me, but not other people or things in his life.  But his MOM!  Yes, very patient, loving and supportive.

I mentioned the constipation and with all of the other drugs, I was not interested in any more.  So, my friend who is a vegetarian and healthy person, sits next to me and says, I brought you something all the way from California.  I laughed as she reached down in her huge bag and pulled out some trail mix, plantains from our favorite restaurant in Cali – Porto’s (man we have had some great lunches and discussions at this place).  It is a Cuban restaurant and bakery – the best desserts you ever want to taste and the prices are fabulous.  So if you are in Los Angeles, look up Porto’s.  Great asparagus soup and you have to try their potato balls they taste like meat loaf and mash potatoes in a round ball – delicious.  Okay, I just went down memory lane there.  Before I could have the wonderful plantain chips, she pulled out a huge bran muffin.  We laughed; she said this is just want you need to get things going.  Just as she pulled it out the nurse entered and informed me I would be on a strict diet and I had to choose from the menu she was providing for my meal for the remainder of the day.

When the nurse left I looked at my girlfriend and said “Well I guess no treats for me today”  We both gave each other that look and she said “Girl here eat this muffin you know it is not going to hurt”.  We continued laughing and I enjoyed that muffin (smile).  You know what, about an hour later the restroom was my best friend!  When they finally arrived with the stool softeners, I informed them I would not be needing them!  The other drugs however had started to kick in and I suggested to my girlfriend it might be a good idea if she go back to my home with my son so she could freshen up and get some rest.  I know after the long flight she came straight to the hospital and had to be tired.  She disagreed, but I insisted.

Off to sleep I went and she left.  When I awoke fully it was the next day, and I was informed I would be transferred to the Rehab hospital.  I had decided to go to the hospital closer to my home rather than the one closer to the hospital I was in which is a bit of a distance from where I live and a bit of a commute for my son twice a day.  Later that day my son and Lisa (my friend) arrived and with clothes in tow for me to change into.  I was discharged and then we were on our journey.  I wanted so bad to just go home, I was done with being in the hospital but Lisa insisted you are GOING!

We arrived at the Rehab Hospital and I was admitted, by the time of our arrival my pain meds had wore off.  I felt like on top of everything else someone was stabbing me in my right shoulder. I was fortunate enough to have a private room in the regular hospital and I also had a private room in the Rehab Hospital.

Once the admission was over and I was in my new home, I was bombarded by people all over again.  Occupational Therapist, Speech Therapist, Physical Therapist, Cognitive Therapist, the doctor that was assigned to me at the hospital, the tech that would be taking my vitals and finally the wonderful nurse I came to know very well during my stay.  Our first encounter was not good because she insisted I had High Blood Pressure and I explained to her the only reason I was experiencing High BP at the hospital I just left was because of my heart condition that had been corrected.  I lost and was put on High BP meds along with a barrage of other medication.  You have to understand, I have never been a person who takes drugs.  I believe in natural alternative healing remedies.  To have my body infiltrated with all of the various drugs – Baclofen – for the muscle spasms, Nuerontin – for the nerve pain, Narco for the pain from the surgery, IV Steriods for the MS, another medication for indigestion and yes stool softeners, and finally Valium to keep me calm from the Steroids.  I wanted someone to please give me the biggest shot of WHEAT GRASS JUICE they could find to clean the toxins out of my system along with some fresh beet, carrot, spinach and celery JUICE.

I did not win the battle nor did I receive the juice.  I conceded to the drugs.

(to be continued)

MS Journal V

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By Jewel Tyler

(continued . . )

I have heard it said when you are in the hospital you should rest. Resting in the hospital is unheard of. Even through the night one cannot rest because of the nurses coming in all night taking your blood pressure and temperature. I know they are doing their job, but after the day I had with Dr. Gupta and then being interviewed by administrative staff about the incident which had occurred earlier in the day with her visit.

A month earlier, I had a conversation with my brother; we were discussing spirituality as usual. I am the type of person when I pray it is not necessarily just for me. I pray for the world, people I don’t necessarily know. I know the Lord has me so I intercede for others. I have been like that for many years. So, because of all of the devastations and news that bombards us on a daily I was feeling overwhelmed with how evil people in the world are now toward one another. I stated to my brother I would much prefer to be with the Lord. We ended our conversation and time passed to the day in the hospital.

Finally, I had dinner and it was time to rest, I had curled up under my covers in the bed and was sleeping so wonderfully. There was no pain, no numbness and nothing was bothering me at all, just blissful sleep. My cell phone kept ringing, I tried to ignore it and continue to sleep, but someone was determined to reach me. I thought to myself, I should have cut the ringer off.

I answered the phone and it was my brother, he was crying, and it was a deep cry. He asked me to please wake up so I could hear what he had to say. Once awakened he was going on and on about me repenting. I kept asking him to repent about what. He said “Repent about what you said about being with the Lord, he is coming for you tonight.” He continued “Sis please don’t go, it’s not time yet.” I was awake now, and not too pleased about being awakened especially after resting so good. “What are you talking about and why are you crying?” He continued to repeat, “Sis please repent, you don’t want to go now, please.” I told him I was okay and I just wanted to go back to sleep.

I hung up the phone and slumped back down into the bed and under my covers. Off to sleep I went. Yes, back into my blissful sleep state. Next, a nurse woke me up; she was adjusting the wires and nodes on my chest and legs they had placed earlier with a heart monitor. The nurse asked me to please sit up in my bed, and I asked her why? She explained she thought something was wrong with my heart monitor.

After she left, I went back to sleep and covered my head. Blissful sleep again. Once again, I was awakened but this time it was the nurse with the head nurse. They were asking me to sit up in the bed. I was so groggy, and agitated by them disturbing me again and again. Then the room filled with more individuals, all around my bed. I asked what was going on. The head nurse explained as he was taking my vitals that they were concerned about my heart rate. Based on the monitors and the current reading, my heart rate had dropped to 19. I had no idea what that even meant.

First, it was nitroglycerin, and then they checked my vitals again. More nitroglycerins and then checking my vitals. They continued to explain my heart rate was not getting any better. My head was pounding the pain was getting greater and greater. The nurse explained it was because of the nitroglycerin. My chest was beginning to hurt and the pain was radiating through my back and down my arm. My head felt like it was about to explode.

Through the pain, I heard some code being called with my room number. It was about me, I was in a private room. Next, a woman rolled in the room with a big red cart. I recognized it from movies; it was what they call a Crash Cart. The woman approached the bed, my head rolled back from the pain, it was excruciating and I was having difficulty breathing. I wanted it all over, and just as that thought crossed my mind the woman with the cart was snatching off the patches and plugs from my chest and legs. She placed some large patches on my chest connected to her machine and a shock went through my body. Once again, another shock. My head was beyond feeling as if it was going to explode.

I closed my eyes from the pain, the nurses were calling my name, I just wanted to escape my body. When I finally opened my eyes again, I was being rolled down a hall. I was surrounded by nurses and they were trying to comfort me and tell me everything was going to be okay. I dozed out, the bed shook; I was in an elevator, I dozed out. I was being picked up laid on a cold table; in a machine, comforting words. Head pounding, the machine was making a banging noise. Being picked up put back on my bed; were moving again. I have to urinate and really bad. Pain in my head, pain in my chest, my arm, my bladder. How can I escape this all?

They were rolling me to a different room; I faintly asked where they were taking me. The nurse replied you are in ICU sweetheart. Once in my room and they had hooked up everything, I explained to them I really had to go to the bathroom. They put a bedpan under me, I felt like I let go of a river and it was a river. When the nurse returned, I was wet from head to toe. I had never been so embarrassed in my life.

Nurses returned to my room, I explained to them what had happened. They put me in a chair and then changed my bed and bathed me and redressed me. However, I felt like I had to urinate again. How could that be I thought. The nurse was returning with another bedpan. I explained to her I do not think that would be big enough. Another nurse returned and said she was going to put in a catheter connected to a bag.

Once it was in place the nurse explained to me how to relieve myself. Just too simply relax. I do not think 30 minutes had passed and the nurse returned to check on me and she ran out of the room. The bag was full. She returned to replace it. I asked her where was all of the fluid coming from? She explained when a person’s blood pressure elevates and starts to come down there is a release of fluid. I was so weak and wanted answers but I was still in a lot of pain.

My cell phone started ringing; I did not realize the nurses had transferred all of my belongings to my new room. It was my son; I explained to him everything which had happened. Before I could finish my conversation with him a woman entered my room along with a man. The man was a cardiologist, Dr. Nguyen, and the woman was from a company called Medatronics. They were discussing with me I needed a pacemaker. I had no idea what a pacemaker was and what was required to have one implanted. My phone rang it was my stepdaughter; my son had called her to tell her what was going on. She is a nurse and wanted full details. I was so weak, I gave my cell phone to the doctor and he discussed in details with my daughter my condition and the next steps they wanted to take to help me.

I told the doctor I needed time to think about it; in reality I wanted time to research everything about my condition and having a pacemaker implanted. My son came to the hospital with my laptop, and my work phone. I contacted my job and explained I needed surgery and I had no idea when I would return to work. Next, my son and I researched my condition also what is required to have the surgery. Before I could finish my research the doctor returned, he said we needed to schedule my surgery as soon as possible. I could not take the chance of my heart stopping the next time completely.

A dear friend of mine that is like my sister Lisa called me from Los Angeles, she stated I was heavy on her spirit. I explained everything to her; she prayed with me and told me she would call me later. After discussing everything with all of my children, I consented to the surgery. It was scheduled for 4:00 am the next morning.

The epiphany from all of this was when the doctor explained to me it was a good thing I was in the hospital because if I had been at home, I would not be here to write this blog.

(to be continued)

MS Journal IV

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By Jewel Tyler

(continued . . )

Dr. Harney later awakened me from my drugged state of sleep. I utilized the button next to my right arm to raise my bed as well as myself into a sitting position; since my left arm and hand were useless at this point. He pulled his chair closer to the bed, he explained he wanted to draw a graph and discuss my condition.

He began to explain to me he had spent the last hour or so with a doctor analyzing my MRI’s and CAT scans from the past against my most recent tests. One of the first things caught my attention was he stated I had eight lesions on my brain. It was just a year ago; Dr. Gupta said I had five. I continued listening. He shared I had Relapsing Remitting Multiple Sclerosis.

First, I was really having a difficult time accepting what he was saying. I know my body was in a bad state. I knew I could not make it to the bathroom without utilizing a wheelchair. I knew I could not with my brain tell my left leg and foot to walk normally. I could not remember something I had just read and so much more. However, trying to accept this diagnosis and the way he was explaining it to me was just overwhelming. I held it together, and being the person that I am, I just wanted him to be done and leave so I could research what MS was on my own and how I could have possibly contracted this disease.

While lost in my own thoughts, I missed a great amount of what he was saying. I really wanted to hear everything he was saying. Therefore, I held back my tears, because I felt like I wanted to cry a river. I asked him if he did not mind starting all over again.

This time I paid attention to the graph he had drawn and every word he spoke and took notes as well. He said, I had relapsing remitting Multiple Sclerosis. What that meant was I would have an exacerbation and then after being treated with steroids, I would feel better. During those times of feeling better the disease would be in remission. He continued explaining some of the lesions on my brain were old, so I have had the disease for many years but it had gone undiagnosed. Also, because of my age and receiving the diagnosis at this point, we would never get ahead of the disease with treatments. Our best bet would be to try to maintain the disease and symptoms and hope it would not progress too rapidly. The graph was showing how the disease progresses over a person’s lifetime. Starting around the age of 20 and up to their 50’s. Well, when we had this discussion, I was 52 years old.

He was so patient and very informative. He said he recommended that I start a drug called Copaxone. I would have to sign up with a company called Shared Solutions to start receiving my medication. He continued to explain I would be visited by several different therapists and I would be in the hospital for a while and he was also recommending that I be moved from the current hospital to a Rehabilitation Hospital for physical therapy and occupational therapy. Then he was gone.

I sat in the room, I would guess in shock, denial, frustrated, angry, every emotion one could possibly think of upon receiving this sort of diagnosis. Then the release, the tears began to flow. I asked the Lord “Why ME God? “Why?” I called my son; I wanted my laptop to begin doing research on the disease as well as the medication I would have to take. Number One – GIVING MYSELF A SHOT everyday was out of the question. I hate needles with a passion!

As I waited for my son, the rest of my day was filled with visits from various types of therapist. There was a therapist assigned to assist me with learning how to use the walker. How to get out of bed and making it to the bathroom on my own instead of using the wheelchair. Next, there was a therapist to assist with my cognitive ability, she would read a paragraph and then ask me pointed questions regarding what she had read. One after the other paid me a visit.

Finally, my son arrived with my laptop. I explained to him everything the doctor had said earlier, based on the graph and information he had left me with along with my notes. We sat together both trying to absorb his diagnosis. Next, it was time to inform my family what my diagnosis was and the fact I would be in the hospital for a while. I did not have an exact time frame at this point. I also contacted my employer via email on my work cell phone.

The next day was a nightmare to say the least. It started in the early morning with a visit from my original neurologist, Dr. Gupta. The first thing she said to me was she did not agree with Dr. Harney’s diagnosis. She stated I did not have MS. However, she arrived with the documentation for me to sign to start the process of having the Copaxone prescription filled. I was drugged from the pain I had been experiencing and I could not believe what she was saying. I was in a state of confusion. This man had sat and talked with me extensively the day before and he even shared how he had spent time with an X-Ray specialist and they had both agreed based on my MRI results over time that I had MS. I asked her nicely why did he say that and why did the X-Ray doctor agree with him if I did not have MS. Let me digress here, I did not want this diagnosis to be true trust me. However, at this point I was really questioning this doctor’s diagnosis after going through so much with her over the past year. She was rude, and abrasive. Once would think a patient receive this sort of diagnosis and being in my current condition, I really wanted facts and information. Not to be talked down to or dealing with a doctor being rude.

Dr. Gupta raised her voice at me and said “Look I am doing you a favor by even being here this morning, I have other patients I need to attend too; I am supposed to be at my office, but I took time out of my schedule to come here and see you.” Furthermore, she continued, “I am the doctor here; do you have a degree in medicine?” I looked at her with tears streaming down my face and asked her “Why are you raising your voice?” I continued “Why are you talking to me like that, what kind of bedside manner is this coming from a doctor toward a patient going through what I am dealing with right now?” She continued with her voice raised, “I don’t have to answer to you, now here are the papers that Dr. Harney wanted you to have you can do what you want with them.” She left, I sat there thinking “Oh my God what kind of doctor is this person.”

One of my nurses entered the room after her departure, she found me sitting up in bed crying. She asked what was going on, I explained in full detail to her what I had just experienced with Dr. Gupta. She left but later returned with the head nurse and ask that I explain everything to her. The head nurse shared with me, they had received several complaints regarding Dr. Gupta in the past. That is when I decided I no longer wanted her to be my doctor. I requested the nurses inform her I did not want any further visits from her. It was just to upsetting and I had spent over a year dealing with this doctor who did not seem to know what she was doing. Yes, I fired her as my doctor while in the hospital.

Later that afternoon, my son from California called me to see what was going on. He stated Dr. Gupta had called him directly and explained to him I was depressed and also dealing with anxiety with my diagnosis of MS and maybe he should speak with me. I could not believe my ears. This is the woman earlier that morning who stated I did not have MS, however she called my son expressing I was having a difficult time accepting my diagnosis. Also, I forgot to mention she prescribed an anti-depressant for me. When the nurse arrived with the medication as I always do, I inquired as to what the medication she wanted me to take and what was it used for. That is when we had the discussion about my conversation with Dr. Gupta. I refused the anti-depressant. I did not need it!

(to be continued)

MS Journal III

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By Jewel Tyler

I used to believe I was an individual who was in control of my destiny. This was before I was saved and then I realized I was not in control of my life or my destiny. I also came to realize even though we make plans on the direction in which we would like for our life to head; it has a way of going a different path.

One can eat healthy, exercise, meditate, rest properly and live a stress free life; and out of nowhere knocked down with an illness. I have studied naturopathy (natural alternative healing methodologies); I am currently pursuing a Doctor of Naturopathy degree. I have been a vegetarian, a vegan, a yoga student, a power walker, an individual that swam laps on a daily basis. I have lived a predominately-happy life. I have always had low blood pressure, diabetes free. My annual physicals my doctor would state my heart rate was that of an athlete. I had not suffered with no major illnesses in my life.

However, I have not had total perfect health; I do not think anyone can honestly say they have. I have had difficult pregnancies, which required total bed rest after my fourth month. I suffered with various female issues (ovarian cysts and fibroid tumors) as well as endometriosis that resulted in a total hysterectomy in 1992. After that, no health issues with the exception of migraine headaches, which I contributed to my hormone replacement therapy.

However, for many years, I continued to have episodes (that is what I used to call them) which caused numbness and tingling in my extremities. Also, extreme fatigue and in some cases strange pain in my legs. In the early 90’s my internal medicine doctor diagnosed me with Chronic Fatigue syndrome. I remember one spring as a teenager; I could not walk for a week. My mother contributed it to the fact I had gone swimming too soon and maybe had cold in my muscles. The interesting fact is over the years these crazy episodes continued to occur every few years with no explanation. I would end up in the hospital with no real diagnosis and then sent home again.

When I finally reached the age where my children are adults starting their own family and I can begin to travel the world as I had always dreamed my body took a turn. A turn that has practically rendered me unable to barely leave my home for a long period of time, let alone travel abroad.

Labor Day weekend of 2011, my son rushed me to the hospital I was unable to walk and had lost use of my left arm. I was experiencing issues with my short-term memory as well once again. Once I arrived in the emergency room, I was immediately rushed to have an MRI. When I was returned to the emergency room, I was informed I would be admitted to the hospital and was administered once again Solu Medrol intravenously. The physician on duty informed me he had spoken with my neurologist Dr. Gupta, I had mentioned in my previous blog she had diagnosed me with mini strokes and being prone to seizures.

I felt helpless, lost, confused and depression started attacking me. I could not figure out what could be going on with my body. Based on my test results from the past year and especially my results from the spinal tap, I did not have MS. The next day in my private room, I awakened to the fact I could not walk let alone utilize my entire left arm. I attempted to get out of bed to go to the rest room and realized I barely had the ability to sit up on my own. It was as if I had awakened to a nightmare. I rang for a nurse and she assisted me to the bathroom via a wheelchair. I felt humiliated.

Once, I returned to my bed, there was a male doctor waiting for me (Dr. J. Harney). He was a neurologist and the doctor on call for the hospital from his office; he explained to me Dr. Gupta was his partner. He performed a neurological examination and explained to me he wanted to examine my past and current MRI’s; he would be back to discuss his findings. The trip to the bathroom left me in excruciating pain. I was given morphine via my IV and off to sleep I went.

(to be continued)

MS Journal II

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By Jewel Tyler

As time continued to pass and my health was not improving, I decided to seek out a different neurologist. In the end, this was a complete waste of time. I ended up having to go through the same tests, EEG and the other tests I mentioned in my previous blog entry. Same results, I was having health issues because of migraines was the final diagnosis. Therefore, I decided to accept the diagnosis I had received from both neurologists. However, continued to not feel 100% like me!

The original neurologist assistant contacted me because I had not kept my follow-up appointment. I explained to her how I had been feeling and since the doctor stated my health issues were, only due to migraines or possible mini strokes I had opted to just deal with my symptoms. Not even an hour later the doctor called me herself, stating she really wanted me to have the spinal tap done before she provided a final diagnosis. This time, I agreed and scheduled the procedure; it was performed in a hospital.

I had the procedure done and scheduled the allocated time off from work suggested by the doctor. The first day I returned to work, I was sitting at my desk and I began to experience a headache unlike any headache I have ever had in my life. I recall one of the issues one could experience was a very bad headache that would go away if I were to lie down. That is exactly what I did, I lay on the floor next to my desk and the pain went away. One of my co-workers saw me lying on the floor and I explained to her what I was experiencing. Before I knew it co-workers asking 100 questions at once surrounded me. “Do you want us to call an ambulance, do you feel like you are going to pass out if you sit up, can you sit up, what can I do to help?” I once again attempted to sit up on the floor and the excruciating pain returned. I explained to my co-workers I did not want them to call an ambulance. And one of my co-workers Ms. B., that I considered a friend came to my desk, when she asked what I wanted to do, I asked if she would drive me to the hospital in my car. She agreed and retrieved my car. It was a scene I must say, approximately five of my female co-workers assisted me downstairs to my car and off to the hospital we went.

Once we arrived I was informed I needed to have a blood clot block placed in my spine because the hole in my spine where they had taken the fluid for the spinal tap was leaking. I was so nervous about them going back into my spine and also having the procedure performed in the emergency room. My reluctance of allowing the doctors to penetrate my spine in the emergency room was due to my sister’s experience. She had a spinal tap done in an emergency room and they severed her L5 and L4 nerves in her spine, which rendered her partially paralyzed. However, I was in so much pain, I conceited and allowed them to perform the procedure but only under heavy drugs. I was knocked out during the whole procedure only to awake to find blood everywhere. My friend who was with me stated during the procedure when they were first taking my blood to put into my spine I was fighting them even though I was under the influence of drugs.

I returned home and laid flat on my back for almost a week. I only would rise to utilize the rest room and take care of my personal needs. I finally returned to work and was contacted by the neurologist, she stated based on my results of the spinal tap there was no way I could have MS because I did not have a high count of certain proteins.

So there you have it, back to square one.

Labor day weekend, I was feeling pretty good, and decided to rearrange my living room and have lunch with my son. We had been joking around most of the day and it was the first time he introduced the LMFAO video and their new dance “The Shuffle”. I had a ball learning how to do the dance and made my son roll in laughter all at the same time. As the afternoon approached, I once again started to feel extremely fatigued. I was so exhausted; I could not even prepare our lunch so we decided to order out. Once the food arrived all I could do was lay on my sofa, this is where I also ate my lunch. I finally sat up to go to the restroom and that is when I realized I could not move my left leg at all. I called for my son to assist me with getting to the restroom down the hall. When I emerged from the rest room, my son was standing there with my car keys in hand. He said, “Mom I think we need to go to the emergency room.” I agreed.

(to be continued)