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)

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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 I

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By Jewel Tyler

Two years ago, I was faced with receiving the most difficult news in my life. As I lay in the hospital trying to remember my telephone number, address and things that come to mind naturally. A female doctor walked into the emergency area where I lay with IV’s connected to my hand that had no feeling. My spine felt like it was on fire. My left leg was useless. She asked, “Has anyone ever checked you for Multiple Sclerosis?”

My first response was “what is Multiple Sclerosis?” My second response was “of course not.” I was then whisked away to the X-ray area and before I knew it I was in a MRI machine. When I returned to my area in the emergency room, I was given Morphine for the pain and told we had to wait for my test results.

As the morphine burned it’s way through my body, my mind attempted to race with the idea of what could possibly be going on with my body. Of course, my first natural response was to pray about it all. I had a friend with me in emergency along with her son and the pain had not subsided even after the dose of morphine. I tried to relax as best I could, but I continued to not accept the doctor’s prognosis.

The doctor later returned to inform me that they had found lesions on my brain – five to be exact. She said I needed to have a spinal tap done and I absolutely refused to have that procedure done in the emergency room. I was told I was going to be admitted and also administered Solu Medrol via my IV. I was later taken to my room, settled in and the nurse started the medication.

I remained in the hospital for another two days and upon my discharge the doctor who provided the Multiple Sclerosis (MS) prognosis asked that I follow up with her, after being discharged. She also stated that I could have possibly had five mini strokes that went untreated but there were tests required to confirm what was really going on with my body.

I returned home, rested for a couple of days and returned to work and continued life as usual. I never called the doctor nor followed up with anyone.

Not even three months later, I began to notice I was experiencing extreme fatigue. I live in Dallas, TX and the spring was approaching. Anyone from Dallas knows there are only two seasons (Winter and Summer). The heat for some reason caused me to experience extreme fatigue. Fatigue unlike anything I have ever endured in my life. I parked three downtown city blocks from my office where I worked. And I recalled talking to my mother as I was walking to my car in the sun and the heat. It took me 20 minutes to walk three blocks I had to keep stopping to simply rest. By the time, I finally reached my car I was exhausted to no degree. This repeated every afternoon. I finally decided to spend the extra cash and park in the covered parking garage. This helped some but by the time I sat in my car it was burning up and I felt like I would pass out.

I finally conceited and decided to contact the neurologist I had met at the hospital and schedule an appointment. It was six months after my hospitalization when I initially met her. When I arrived for my appointment, we discussed the extreme fatigue I was experiencing and the numbness in my fingers, hands, left leg and foot. She sort of brushed over those symptoms and continued to focus on the “mini stroke” diagnosis. We discussed as a young teenager I experienced complex partial seizures and the majority of my adult life I had experienced migraines inclusive of “cluster migraines.” She informed me that one can get brain lesions from migraines as well. So, our next steps were extensive tests primarily focused on the migraines as well as the mini strokes. I was fine with that!

I had EEG’s blinking strobe light testing, I had to sit in front of a computer screen with a black and white swirling program. The diagnosis came back that I could be prone to seizures. No new news (smile). I had already explained to the doctor I had seizures as young girl.

I spent so much money for follow-up visits and testing but I was not feeling any better. I had not had a seizure in years! I continued my visits with the doctor and continued to deteriorate health wise as well. This went on for a year. Finally, I believe I had enough of the run around I felt I was getting with this female doctor. So, I stopped going to see her. However, I continued to be very nervous about my health that seemed to not be improving at all!

I did seem to have some relief when the fall started to approach, but to my surprise, once again, the numbness became overwhelming again and the fatigue! I had no idea where to turn or what to do. I took some time off from work and rested at home for a couple of days.

Not realizing, I was about to experience the most frightful health experience ever.

(to be continued).