Kim Ross
kimross@cogeco.ca
New York

I got TM in March 2004 when my daughter Courtney was six months old and I was approaching my 38th birthday.  Throughout that winter I had many bouts with flu and cold, culminating in a bronchial infection that would not let go.  I went to my doctor for some antibiotics and a day after I started taking them, the TM hit.  I didn’t know what it was then, just that I woke up one morning and couldn’t feel anything in my legs.  It started with a foot and then moved upwards and stopped at my waist over several days.  I became weak and it got harder for me to stand and walk.  I started falling down and loosing control of the function of my legs as the numbness and heaviness got worse and worse.  I was diagnosed with a lesion at T12 about one month after the onset of symptoms. 

It took many months before I could walk relatively normally again.  During that time I did a lot of crawling around my house with my small baby and scooting on my butt down the stairs, because I had fallen so many times and was afraid of dropping my child.  I broke my foot a few months into the TM by falling down the stairs, because I couldn’t feel them beneath my feet.  In a way that was a blessing, because it prompted me to get physiotherapy and that improved the function of my legs tremendously.  Today, I can walk, albeit not far.  As long as I get lots of rest, don’t get too hot or cold, don’t get any viral illness or find my immune system compromised in any way, I am able to function not too badly. 

The drugs that were prescribed never really worked for me.  That is, some of them helped the original complaint but not without side effects that were more unbearable, so I have mostly relied on other methods to gain quality of life.  I did several months of aquatic therapy and I have physical therapy once a week even now.  Things have been up and down with the pain and residual symptoms, but the key seems to be taking good care of my immune system, no sudden changes of body temperature and lots and lots of sleep. 

That is a fairly simplistic explanation of what goes on in my life on a daily basis, and as you all well know, this is not a simple affliction.  It has changed my life in so many ways that describing what has happened would require more time and space than we have here.  Though there are still days where getting out of bed is a challenge not to be ignored, I am fortunate to have a wonderful support system to help me through the rough patches and keep my outlook positive.  I know I couldn’t manage without my husband and also the wonderful people who help me care for my two year old.  These are the people who make it easy for me to get the rest I need to be at my post TM “best.”  Recovery has been a struggle.  I no longer have my career as a heating and air conditioning mechanic due to the ongoing deficits.  I tried about nine months into recovery to go to work about four hours a day at a much more sedentary job, and after struggling daily with the worsening of symptoms and viral illness after viral illness, I was unable to continue to work.

About a year into TM, I became pregnant again.  This was by accident, not by design.  My husband and I had decided right around this time that we would not be having any more children.  No one could tell us whether there were risks with TM.  No one could reassure us that we could have a successful pregnancy, so we decided that we wouldn’t take that chance.  Shortly after making a well-researched and questioned decision not to get pregnant, we found out that we already were.  We told very few people and went directly to the neurologist and obstetrician to find out if this was safe.  I still had a lot of residual symptoms that I was dealing with from my TM attack at T12.  My pregnancy before TM had its own issues with a two vessel cord and minor heart and kidney defects for my daughter, as well as high blood pressure for me.  So it seemed prudent to seek this guidance. 

We had an amniocentesis, a detailed anatomical ultrasound, and some other tests to determine whether our child would be born healthy.  We discussed the pregnancy with everyone we could, medically and neurologically.  They could find no reason that I could not have a healthy pregnancy in spite of my limitations.  So, things progressed. 

The first trimester was difficult.  Along with the morning sickness and fatigue that comes with a normal pregnancy, I had to deal with a lot of pain and sensory issues that still remain from the initial TM attack.  The fatigue, that many of us know so well, was disabling.  There was no medical relief for me.  The available drugs never worked very well for me and I wasn’t about to try something new during the pregnancy.  I just toughed it out the best I could.  

At around 20 weeks, we found out from the amnio results that we were going to have a healthy baby girl.  The good news about the amnio was that I couldn’t feel the needle, so it was not painful at all to have done.  Just about at the beginning of the second trimester, I got an unexpected gift of pain relief.  I am not sure why this happened, but it sure made life a little easier to deal with for a time and for that I was grateful.  My OB has no experience with TM, but said that this is common with MS patients and many other autoimmune diseases with which she has greater familiarity. 

During the pregnancy, fatigue has been my constant companion.  I have a lot of fatigue with my TM and with the addition of pregnancy to the mix it has made the fatigue much worse. 

If I hadn’t had a pregnancy before I got TM, I might have had a different perspective, but the hardest part of this pregnancy has been not being able to feel the movement of the baby in the way that I had with my daughter.  It was hard for me initially and I found myself having a lot of anxiety about whether the baby was ok.  I just didn’t feel the movement like I did with Courtney.  As the pregnancy progressed, I could see the baby move.  Later on I could feel the baby move as the movements became more pronounced, but I missed the fluttering I felt in my first pregnancy and the sense of connection it brought.  My morning sickness, or should I say morning, noon and night sickness, stayed for much of the pregnancy.  Even as I am writing this in my 29th week of pregnancy, I still experience the nausea, though not as extreme as I had during the initial stage of pregnancy.  That is a normal part of pregnancy, and I feel certain that TM has nothing to do with this. 

I have recently found an increase in my pain again and banding in the midsection.  Possibly, the holiday I had in the second trimester is over, but I am grateful for it, none the less.  I know this will sound strange, but this post TM pregnancy has been a much healthier one in spite of my limitations.  With my first daughter, I gained almost 60 pounds and suffered from high blood pressure from around the end of the 5th month.  This time I have gained very little weight, and although I am experiencing the high blood pressure, it has not been nearly as high and came on just in the past couple of weeks.  With this baby I am much more conscious of what I eat and how I take care of myself.  The invincibility factor is forever gone for me.  I know what can happen to me now and I make better choices in my life.  I know I didn’t do anything to cause my TM, but my mindset now is that I want to know that I have done everything in my power to recover and hopefully prevent a recurrence.  My doctor seems to feel that the highest incidence of recurrence would be in the first six months after giving birth.  So, I have been very conscious of taking care of my general health during this pregnancy and have generally done so since I got TM.  I know that if I get even a cold, my residual symptoms are amplified to the point where, at times, I have thought I was having a recurrence.  I am very sensitive to taking care of myself as much as possible.

I am nervous about what is to come.  I am scheduled for a C-section with a general anesthetic on December 14th and I have maybe more than the normal fears associated with the care of a newborn.  I know how little sleep I had when Courtney was born and I know how much sleep I need just to walk like a normal person.  I am not sure how the two will reconcile themselves.  Courtney is going to daycare and I will continue to take her in the hopes that I can manage to give this baby the same beginning I gave Courtney.  I know I will need more help than ever to manage the needs of this baby and I am lucky to have an understanding husband and family.   

I longed for a second child, but I thought I wouldn’t be able to handle another pregnancy and TM.  I feel as though this has happened for a reason.  It may be an irrational thought, but somehow I feel as though this is part of my recovery.  I go to a Chinese medicine doctor, a young modern guy who is a doctor of acupuncture and chiropractic for treatment each week.  He says that the Chinese believe that illness is something that comes full circle; that pregnancy is a healing time for the body.  Since I got this after my first child was born, perhaps it is possible to recover or improve with a second.  I don’t know if he is right, but I will take any encouragement I can get at the moment.  I have the normal fears about being a mom, even though it is my second child.  Will I be able to do this?  Will I be a good mom?  Everyone has those thoughts.  I also have fears about the TM.  Will I have a recurrence; is this first attack a precursor to MS; will it declare itself after this pregnancy?  I try to override these concerns with positive thoughts. 

My daughter, Courtney, is a beautiful, well adjusted two year old who is independent and articulate for her age and has flourished either in spite of or because of what I am not able to do for her.  She knows no different than a mommy with some physical limitations and so she does not expect me to do things I am not able to do.  This child will be the same.  She has compassion for people who are hurting, well beyond her years in this regard.

Just like parents without any health issues to contend with, we are worried about the safe arrival of our baby.  I had a C-section with Courtney and so this was not even something I questioned in this pregnancy.  I am choosing a general anesthetic, because I feel that I do not want the risk of a spinal anesthetic.  There is not enough conclusive data to say it is safe to have a spinal, so I will not take that risk.  I am having a second ultrasound next week to take another look, but the obstetrician feels confident we are having a healthy baby girl.  Although I didn’t make the choice to get pregnant intentionally, I am so thrilled to be giving Courtney a sister to grow up with.  I am glad the decision was taken out of our hands.

The message I would like to communicate to those of you who might be thinking about having a baby with TM and reading my story is this: if you want a child, don’t let this illness stand in your way.  Take the proper precautions for your age and condition and don’t deprive yourself of the experience of being a mother.  Children are our greatest gift and the most important job I have is caring for Courtney and soon, her new sister.  Even if I am not able to do everything that I would like for them physically, I still have so much to offer them as a mother.  I am happy to be having another child so that Courtney has someone to be close to as she grows up like I was with my sisters. 

I used to feel guilty about Courtney going to daycare as I don’t work, but they can give her something I can’t which is physical play.  Also, having her there gives me the time I need to battle the fatigue so that when she is home with me, I can care for her in a more complete way.  I eventually realized that my job right now is to make sure that I am at my most functional, rather than going to work.  Having children is something I wouldn’t trade for anything. TM has taken a lot of time from me and probably more to come, but I am glad it hasn’t taken this experience from me.

On a final note, I just want to say that the TMA website has been a great help and support for me.  Everyone has been so kind and helpful with information and just good wishes.  So, thank you, everyone, for your support.  We all have our challenges to face with this condition and sharing this has created an undeniable bond.  We are the only ones who truly understand each others’ triumphs and challenges.