About Letitia

In 2010, at the age of 49, whole living in the Los Angeles area I was diagnosed with Transverse Myelitis. I want to share all aspects of my story. The bad and believe it or not the good. My faith in God and all the angels that he placed around me via friends, nurses, doctors and family have been the foundation for my progress on the road to recovery.

May 21, 2012 – Hubba Hubba!

Before my cousin Raymond left for North Dakota, he would come over to my house three or four times a week and help me exercise.   He has been gone for approximately two months now and I sure miss him.  I had begun to look forward to our work out sessions and our talks, drives, food runs, etc.  I miss you cousin!

There were times that we were exercising and I would experience very rapid muscle spasms after pressing a muscle group to the limits.  They were like tremors and would make my entire leg shake.  Every time that happened, Raymond would say Hubba Hubba and we would laugh.

Raymond and I both believe that this sort of action is an indication of growth and regeneration.  Now I am sure there is a clinical explanation but as I have mentioned previously, this site is not meant to be clinical.  The simple fact of the matter is that there is little information regarding TM and it causes, treatment, etc.    The specialists will listen when I tell them what symptoms I am having and really all they can do is listen.  Please be clear, that I am not being derogatory.  I have seen some of the best neurologists and rheumatologists in the field and am very pleased with the care that I have received.   Sorry, getting off track here.  What I want to share today are the thoughts that I had just before falling to sleep last night.

I was thinking that it is very important that we listen to our bodies whether we are completely healthy or recovering from something.  Every night as I wind down to fall to sleep I pray and thank God for his grace, mercy and strength.  After I pray, I lay still and try to become aware of every thing that I am feeling.  In my case, I feel nerve activity up and down my back, more specifically up and down my spine.  This feels similar to what you may feel if your arm falls asleep and you get that tingling sensation.  I can actually feel this sensation moving from my spine area and down to my feet.  I can also tell when my leg muscles are about to spasm simply by tuning in to these feelings.  Before the TM onset, I can not say that I ever tuned in to myself like this.  I don’t know what significance this has, if any at all.  I just wanted to share what I was thinking.

May 20, 2012 – Feeling So Good

I didn’t wake up until 10:30 a.m. today and I felt so rested and ready to conquer the world today.  I did my morning exercises (leg raises, bridges, stretching) in the bed.  I got up and showered, brushed my fangs and got dressed.  I made a few phone calls to friends and family and after talking to my grandmother I decided to tackle household chores.   I did two loads of laundry, straightened up the living room and then started to cook Sunday dinner.  On the menu tonight is 15 Bean Soup seasoned with 2 hamhocks and rice.  I am using the crock pot for the soup because it is much safer to not use the stove when using big pots filled with boiling water.  Another good reason to use the crock pot is that it will not heat up the house.  I felt good this morning meaning that I felt strong and full of energy.  I decided I would jump into being my own prep cook so I diced  up some extra’s for my soup (onions, bell pepper, garlic cloves and hot peppers).  My auntie grows hot peppers in her garden and I used three small ones just to give my soup a lil bite.   I made a pot of rice and now all I have to do is wait for the beans to be done.   I went in to stir the beans and test taste the broth…..GOOOOOD LAAWWWWWD!  MY LIPS ARE BURNING OFF!!!!!!  I used the wrong peppers!!!  I used the ones that are really really hot, I think they are called jabeneros – not the mild hot ones.  Time to look up the number for Pizza Hut!  HaHa!  What a day 🙂

May 19, 2012 – Sensations Returning

One of the many things that I lost at the time of the TM onset is the ability for me to feel anything from my waist down.  As an example, if you tried to tickle my feet I would not feel it.  Or if you ran your hand across any part of my leg or lower back and stomach, I would not feel you touching me.  I did, however, feel touch if you applied a great deal of pressure but it was not the same as if I applied pressure to your leg and you felt that I were squeezing you.  I, on the other hand, felt the sensation of pins an needles at the point of where pressure was being applied.

NR:  For the past several weeks, I have noticed that normal sensations are returning.  I haven’t mentioned this previously because the moments when I noticed certain sensations passed so quickly that I was actually unsure of what I was feeling.   It wasn’t until the other day that I dropped the charger for my scooter chair on the pinkie toe of my right foot and yelled out a curse word that I was 100% sure that I felt something – HA!

May 18, 2012 – I Love Physical Therapy

It was another great day at PT.  I did the stationary bike for 10 minutes on level 8 and then I worked with Darlene today and we did several new exercises to further engage the dormant/weaker muscles of my left leg.  I almost kicked her unintentionally while doing the exercises -oopsie!  The exercises were difficult to perform but I want to have them mastered by the time I go back this coming Tuesday.  Thanks for the laughs today Darlene!  Laughter is also the best form of medicine!

My Theraband Exercise Ball arrived in the mail today.  I was so excited until I realized that it didn’t come with a pump.  Really!!!  Why on earth would they send me a ball and no pump.  All I can do is shake my head in disgust.

Theraband Exercise Ball

Good night all………

May 17, 2012 – Just Chillin’ in 104 Degree Heat

I am so lucky that my house gets the perfect amount of shade in the morning.  I spent the morning just chilling with my auntie in the back yard.  I can’t believe that it is already reaching 104 degrees and we are only in mid May.   Even though it was hot we were able to sit outside in the shade with a nice breeze blowing.  Ahhhh, desert life is good and slow and that is what I need right now.

I feel my body healing itself and coming back to life.  I realize that this restoration is not always going to feel pleasant.  It is not going to be a case of me not walking one day and then suddenly, I am up and running around.  For me, this is a slow and gradual process and it seems as if I am going to feel many things (good and bad) as the nerves start to regenerate and learn which pathways they are to take and what they are suppose to do again.  Last night was miserable for me.  I could not sleep due to the discomfort in my legs.  I was feeling nerve sensation/activity on the inside calf and thigh of my right leg.  I just tryed to be still and focus that these are growing pains.  I equate the pain to nerve confusion.  Until they figure out their previously assigned job, there is going to be a little turmoil.  Its like building any good corporation.  All the officers need to know their assigned tasks and responsibilities.  NR:  When I woke up this morning I felt (for the first time since September 2010) my upper abdominal muscles and obliques doing their job on the right side of my body.  I also notice that I have little to no swelling in my right leg and foot but my left leg and foot still suffer from slight swelling and is noticeable by the end of the day.

SIDE NOTE:  Please do not ever say to me or anyone else going through a similar situation:  “No Pain-No Gain”  Trust me, that behind our smile is the urge to pop you in the eye and ask you what you gained for that pain 🙂

All in all, this has been a great day.  Praise God, from whom all my blessings flow!

 

May 16, 2012 – Feeling New Stuff, Physically & Spiritually

Today was a busy day.  I was up earlier than normal to get ready for a doctor appt.   Time to visit the OB-GYN.  Jasmine had to drive down to take me because the office staff said that I needed to have a caregiver with me to help me up onto the table.   After waiting in the office for almost an hour after my appointment time, I was led back to a room where the table was specifically designed for people in my condition.  I only had to transfer into the chair which then reclined backward.  I was so aggravated when I saw this.  This is a perfect example of people being uninformed about how to do their job.  The scheduler should be aware of the fact that they have special equipment to meet the special needs of patients.  Jasmine made a trip all the way down here for nothing and gas aint cheap.  Not that she minds coming out but really it was not necessary.  It was the principle of the matter that pissed me off!

Jasmine, if you read this, I want you to know how much I appreciate all that you do for me all the time.  I know it isn’t easy running up and down the freeway from there to here.  I love you sooooooooo very much!

When I got home, Cindy, the home health nurse came over to change my supra-pubic tube.   I feel much better when I know that Cindy is coming out to do this.  Prior to her this was a difficult process for the other nurses and it was painful.  I had muscle spasms for several hours afterward with the other nurses, but not with Cindy.  Thank the Lord!  I showed Cindy the log that I have been keeping of my blood pressure.  Every morning the reading is very high and she suggested that I see my PCP asap to get this under control.  She says that I’ve come along way to have something new go wrong.  I have an appointment with my PCP next week.

I had a difficult time doing sit-to-stand exercises today.  My leg muscle around my right knee felt a little weak.  NR:  The muscles in my gluteus on the right side feel as if they are joining the party.  I also feel a different sensation on the inside of my calf muscle on the right leg.  My left ankle seems to have even more range of motion than it did yesterday and I seem to be able to spread my toes apart on my left leg much farther than before.  I am still working on trying to flex the toes on my left foot back toward me.  I see slight improvement. Yessss!

As I had mentioned yesterday, I was feeling rather down.  I ended up going to bed and just talking to God.  I just spoke to him as if he were a friend sitting here shooting the breeze.  I told him that I feel sad and sometimes I feel alone in this fight.  I tossed and turned for quite some time but I don’t remember the point at which I fell to sleep.  I just know that I woke up this morning assured that I am not alone.  I remember his promise to me that I will be restored.  The road is not easy.  I just need to remember from where I need to draw my strength.

 

May 15, 2012 – Back to Physical Therapy

It has been appx. two weeks since I last went to West Point Physical Therapy so I was excited to go and get back to work.   I do have a regimen of exercises that I perform at home but I prefer the ones that I do outside the home because they really push my limits.  I can’t do them at home alone for safety reasons.

I work with three different therapists (Fran, Jenna and Darlene).  I adore each one of these lovely ladies.  They know what they are doing, they make me laugh and they make me work very hard.  I am very grateful to have them teaming up with me.   I found out today that Jenna’s last day was last week.  I was so disappointed that I didn’t get a chance to see her before she left…… Jenna, if you read this I want you to know that I thank you from the bottom of my heart for all your hard work and encouragement.  Thank you for your cheery demeanor that always made me laugh even when I didn’t feel like it.  I will certainly miss you!  I wish you the best in all that you do.

Fran noticed today that I am using less of my arm strength to support me when using the walker.  I used the stationary bike for appx. 10 minutes on level 8.  I noticed today that I had to concentrate less on keeping my right leg in line while using the bike.  I was also in control of my left leg a little more than the last time as well.  Fran assigned exercises for me this week that will further strengthen my hips, hamstrings and calves.

When I got home today, I felt frustrated and sad about my situation.  I don’t know what brought this on suddenly.  I just know that I am so very tired of fighting for my recovery.  But I also know that there is no other option.  If I want to walk again, I have to fight with every fiber of my being.   I was hoping that writing this right now would help snap me out of it but today writing isn’t helping.  I’m just gonna give myself 5 minutes to cry.

I’m going to make it an early night.   Good night all…………..

May 14, 2012 – Relief Arrived

Finally, I feel better.  The pain in my neck has dissipated by about 95%.  I feel like a new person!  I can finally move about with much more ease.  I was able to get myself into the shower and wash my hair.  Thank the Lord!

One of the hurdles that I’ve had to deal with has been the inability to perform personal hygiene like I use to prior to the TM onset.  When I first came home from the hospital, I had to be helped into the shower stall, placed on a shower chair and I had to wash myself very carefully and take extra precaution that I didn’t lose my balance and fall over into the tub from the chair.   In case you are wondering what a shower chair looks like……

It was such a horrible thing to see the bottom half of my lifeless body dragged (I wasn’t really dragged – just being dramatic – lol) from the wheelchair to the shower chair.  I wanted to break the mirrors that were near the bathroom.    Wasn’t nuthin sexy bout dat! HA!

As I got stronger, I was able to transfer to the chair without assistance.  It was extremely liberating not to have to depend on someone to get me into the shower.   I tried to stand up in the shower about a month ago.   You know, just to test the waters and see if it were remotely possible.  Well, I’m not ready for that yet.  I remember what Mike use to drill into my head about “safety first.”

May 13, 2012 – A Pain In The Neck

I woke up yesterday with a stiff neck.  Since then it has been very difficult to turn my head in any direction.  I took Naproxen (a muscle relaxer) in hopes that it would help.  No such luck for me.   I did not sleep well at all last night so I stayed in bed until about 10:00 a.m. today.

I remembered that I had Vicoden in my cabinet from last year and bee-lined my way to that bottle.  I ate a little food first to prevent an upset stomach and then took one pill and prayed that it would take affect immediately.  Well, there was no immediate relief, but what did happen rather quickly was the feeling of nausea and subsequently the vomiting began.

This is ridiculous.  My head feels as if it weighs 50 pounds and I am failing at balancing it on what feels like a pencil sized neck.  Ahhh, and this too shall pass!

My Auntie and Victor were so kind and brought me over a nice hot meal and freshly squeezed lemonade.  I just love Victor’s African cooking!  So now my tummy is full and all is well except for the pain in the neck.

NR:  I should not fail to mention that while struggling to get up and about this morning, I noticed that I have greater range of motion at my left hip.  I was so eager to exercise today but decided against it and figured that rest is best today.

I’ve been a couch potato all day.  Watching television and playing Words with Friends with my opponent up north. I figured out how to finally win with her…. take VIcoden!  HaHa!

Malachi 1:2