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 VIII

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(Continued)

By Jewel Tyler

My girlfriend who made the trip from California to be by my side came to the hospital everyday to visit during her time in Dallas.  It was probably a welcoming break for my son, who had been simply wonderful throughout this entire ordeal.  He is my youngest son and I know it was such a huge sacrifice for him to leave Virginia; first, come to Dallas and secondly to a mom that was very ill.  However, he never failed me and took exceptional care of me.

I was awakened early every morning to see first if I required assistance with getting dressed, (yes I did) and secondly to be informed what my routine was going to be for that day.  Physical therapy, and then I would return to my room for lunch and then it was time for all of my other therapist to pay me a visit and work with me.  I received many visitors from work as well, which was difficult for me when they visited because I did not want them to see me in this state.  I just let go and let God, I could not do anything about my condition or my state at this point.

I believe the most difficult part of it all was trying to wrap my brain around the fact I had been diagnosed with Multiple Sclerosis and when I would attempt to get out of bed, I really could not walk without using first a wheelchair, and then later graduating to a walker.  My left arm/hand was useless to me and so very numb and tingling as well as my left leg.  It did not help the pacemaker had been installed on my left side so the pain from the surgery hindered my progress with my left art in therapy because I was not suppose to really use the left arm until the area had completely healed from the surgery.

One afternoon, I was lying in bed watching television and my left leg felt initially as the pain one feels when they have a toothache (the best way I can describe it) shooting from my thigh down to my foot.  The pain continued to shoot down my leg, and then my leg became so sensitive I could not even take the sheet on my leg.  I began to scream out in pain, I had never experienced anything like this in my life.  Right at the point where the pain escalated my girlfriend arrived to visit me for the day; I had already pushed my alert button for the nurse to come.  Everyone entered the room at the same time, I was trying to explain to the nurse as well as my girlfriend what I was experiencing, tears streaming, I had removed the sheet from my legs and the female nurse covered me with the sheet when the male tech arrived to check my vitals.  Boy did I scream when that sheet hit my left leg.  Without any further words, my girlfriend knew exactly what NOT to do.  She removed the sheet from my body and raised her voice “It is quite obvious the sheet on her leg is causing her excruciating pain so leave it off; if this guy has never seen a woman’s leg I’m sorry but don’t put that sheet back on her!”  Oh, I cried every time someone touched my leg or foot.  The doctor finally arrived, checked me, and ordered painkillers, which were more powerful than the Vicodin I had been receiving.  His conclusion, “It’s just one of the symptoms of MS.”

After the meds finally kicked in there was relief but there was a pounding fact in my thoughts “One of the symptoms of MS.”  How many more are there I asked myself repeatedly and once again the tears.  I guess you are wondering why I was crying when the pain had been take care of?  Reality, they were reality tears, I have been a person who has taken pride in the fact I did not have any sort of major illnesses, (i.e., diabetes, high blood pressure, cancer, high cholesterol etc..  Multiple Sclerosis had invaded my body, the only thing I had to really deal with over the years was migraine headaches.  Coming to grips with the fact medicine had been ordered for me, which required injecting me with a needle every day for the MS.  It was all too much, hence the tears.  I did not want to talk about it; I did not want to proclaim this disease over or in my body was real.  I believe my girlfriend read my mind and she prayed for me.

Later that afternoon, two new doctors visited me, one was a psychologist and the other was a neurologist.  The psychologist came to help me cope mentally with the acceptance of my diagnosis.  The neurologist came to discuss the disease and assist me with finding a new neurologist, if you remember I had fired Dr. Gupta before leaving the original hospital.  I had however, prescheduled an appointment with UT Southwestern (a co-worker who had MS had recommended this clinic which worked specifically with MS patients) they had contacted me while I was in the hospital to inform me they had a cancellation and would I be interested in taking the appointment.  I agreed to the appointment and received clearance from the Rehab Hospital and informed my son because he would have to transport me from the hospital to the clinic.

Now here we go again, I arrive provide the doctor with my MRI/CAT Scans and she has students in the room with her (interns I believe).  She reviews and discusses with the students her findings.  She finally turns to me and says “You do not have Multiple Sclerosis.” “ I am like oh I don’t well okay then what is wrong with me then?  I have had one doctor tell me I do have it and another doctor that told me I do not have it and now you say I don’t have it.  Who is right?”  She replied, “Based on the lesions I see here they are not large enough to be MS.”  I asked if she could explain the lesions on my brain; she stated they could be from my migraines.  She turned to her students, continued her discussion in medical terminology that was above my knowledge base and then thanked me for coming and excused herself and left the room.

My son and I just stared at each other like with that look of “what the heck was that all about?”  We left and I returned to the rehab hospital.  I finally explained to my therapy doctor and later to the neurologist what the UT Southwestern’s doctor’s diagnosis was; and they were baffled.  I remained in the rehab hospital for one month and when I was finally discharged, I was provided with another neurologist to see; which I thought was interesting because she was African American and they felt she could relate to my condition better than the other doctors I had seen over the past two years.

After being discharged I had to continue with therapy for the next three months.  After hearing the UT Southwestern doctors diagnosis, I continued with the thought I did not have MS and no one really knew what was going on with my body.

After being home for approximately two days, my mother contacted me to let me know she was on her way to Texas from Virginia with my stepfather, they were going to drive down.  Finally, something that would put a smile on my face.

 

(to be continued)

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)

My Journey My Challenge – Multiple Sclerosis Journal VI

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By Jewel Tyler

(continued from Journal V)

I was awakened around 4:30 am, I was being informed that the surgery for the pacemaker was being delayed.  After fully waking up I thought to myself “later is fine with me.”  I had been informed what the procedure would be for my surgery and that I would not be put to sleep.  Not being put to sleep had me very concerned.  I am not a fan of pain, as I would guess no one is, I was told I would be administered a local anesthesia for the procedure.  Everything was hitting me too fast, first the Multiple Sclerosis diagnosis, having to fire Dr. Gupta and then my heart trying to stop, it was just too much.  I became a bit overwhelmed and I was alone in my room and the tears started to fall.  I had to pull myself together, and the only way I know how to do that is to talk to God.  I began to pray and ask God to bless me with the spirit of peace beyond understanding and for his unspeakable joy at a time like this.  I also, asked that he guide the doctor’s hands since he was going to be dealing with my heart of all organs in my body.  I begin to feel myself relax.  I got out of bed to wash my face and brush my teeth, and forgot my legs were not cooperating as they always had in the past.  I quickly remembered I needed the walker by my bedside to assist me to the sink which was only a few steps away.

After washing my face and brushing my teeth, I laughed at myself in the mirror; my hair was a mess and everywhere.  Isn’t strange how we women no matter how we are feeling become concerned about our appearance.  I thought for goodness sake you are getting ready to go into surgery; your hair really doesn’t matter.  By the time I returned to my bed and slid under the covers, a gentleman arrived in my room.  Wished me a good morning and said I am here to take you to OR.  I asked him to give me a minute; I called my son and left him a voicemail message to let him know I was on my way to surgery.

Once I arrived in the operating room and I was transferred to the bed for surgery, my whole body began to tremble, I was freezing, it was so cold and I believe I was also trembling because of fear.  I quickly reminded myself, “God has not given us a spirit of fear, but of love, power and a sound mind.”  I said my amen and the nurses arrived that were there to prep me for surgery.  The anesthesiologist arrived and explained what he was going to be administering to me via my IV.  Finally Dr. Nguyen, came in with his soft tone and comforting bedside manner to assure me everything was going to be fine and he would be done in no time.  My face was covered with a blue paper cloth type sheet thingy and I was told to turn my head to the right.  I was asked what type of music I liked I shared classical preferably Bach, and the nurse explained I was in luck they had some Bach.  She turned on the music and within 10 minutes, it was lights out for me.

I awoke in recovery with a nurse talking to me.  I was so dazed and drugged; I looked around the recovery room and saw other patients coming out of their comatose state as well. The nurse was busy checking my urine drainage bag.  Then blood pressure, why does that thing squeeze your arm so tightly, and I guess what irritates me is they always seem to use the arm that the IV is in as well which causes even more pain.  I was obviously in and out our consciousness, because I was still so very drugged.  In spite of how drugged you are the nurses are constantly communicating and working on you.  After everything checked out for me, I was once again on the move to my room.  I remained in the same bed and finally I conceited to the drugs and off to sleepy land I went.

I was awakened by someone kissing me all over my face, when I finally was able to focus my eyesight tears filled my eyes, to my surprise it was my best friend from Los Angeles, Ca.  I could not believe my eyes; she was here in the hospital room with me.  I was like “What are you doing here?”  She smiled and kissed me again, “Girl, I purchased my plane ticket right after I spoke with you last night, I was trying to get here last night but there weren’t any flights.  There was no way I was not going to get where and my girl was having heart surgery, love you too much girl.”  I was just so overwhelmed, this is my friend that is unemployed and ill herself but she made her way to Texas to be with me during this time of my illness.  This was so very special to me because I was dealing with so much all at one time.  God knew I needed her.

(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)