Dave's ActiveMSers Blog: Imitating Humpty, Mr. Humpty Dumpty

Dave's ActiveMSers Blog: Imitating Humpty, Mr. Humpty Dumpty: In the fall of 2009 I had what I consider my first official MS fall—almost four years to the day of my first relapse. Now I’d had falls befo...

MY BIGGEST FEAR

As I come out of the preverbal broom closet with my MS it means admitting to myself what it is about this disease that I fear the most.  For the most part I feel I have a very good attitude even with all of my challenges.  Every day that I wake up I feel blessed even though I know that 80% of my day will be painful.  I deal with vision loss and the spasms in my face.

My sense of humor keeps me smiling while talking to many on the computer and if there is a typo I calk it up to rented fingers and put no more than that into the numbness in my hands arms and legs.  I know of so many in wheel chairs now and I have been asked what about when I can’t walk?

What about when I can no longer see?  I thought this was my biggest fear.  My children and my grandchildren are my life.  We have been through so much together with my divorce, my cancer and now MS.  But then I stopped and really thought about this.  When I loose my sight it’s going to be okay, I will still hear them and share with them I just won’t be able to see them and I looked at it from the perspective of I don’t see them everyday I talk to them or I communicate with them via the computer.

Just because I don’t see them doesn’t mean that I won’t share in their lives so this no longer was a fear.  So then what is it?  What is it I fear the most?  Everyone that lives with MS, lives with many complicated choices everyday from new medications to finding the right doctors, the testing and the side effects that go along with all of this.

So let me try to break down my biggest fear. It’s simple really, I’m afraid of loosing my mind.  Depression absolutely terrifies me.  Depression is very common in people with multiple sclerosis (MS). In fact, symptoms of depression severe enough to require medical intervention affect up to half of all people with MS at some point during their illness.

Why Do People With Multiple Sclerosis Also Have Depression? 

1.   Depression may be the result of a difficult situation or stress. It is easy to understand how having MS, with its potential for progressing to permanent disability, can bring on depression.

2.   Depression may be caused by MS. MS may destroy the insulating myelin that surrounds nerves that transmit signals affecting mood.

3.   Depression is also a side effect of some drugs used to treat MS, such as steroids or interferon.

This is what I know, Feeling hopeless and helpless are part of the disorder, and so depressed people are prone to believe there is nothing they can do to help themselves. That is flatly untrue. When people educate themselves and take proactive and deliberate steps to get help, including self-help, the probability of overcoming depression is high.

I'd suggest that you completely ignore the disempowering interpretations people give you about the meaning of your depression. Instead focus on 1) learning what your particular risk factors and vulnerabilities are and 2) then learning the strategies you'll need for skillfully managing your mood.

Even when depression eventually lifts, you will need to manage your mood with self-awareness and skill. It's a life skill everyone needs, not just those prone to depression.

Therapy can be of great help and should feature somewhere in your plans to overcome your depression. You can't effectively treat yourself when you don't know much about what you're up against.  For me, my biggest challenge is a healthy attitude. Knowledge is power.  While I may not be able to cure MS, I can, concur my fear.  I wish good health to everyone.

"THE IMPORTANCE OF A GOOD DOCTOR"

My name is Karel and I live with MS.  I said it, my doctor would be so proud.  I was diagnosed with MS back in the early 90’s.  I spent many years listening to people tell me how I was in denial with this disease and maybe I was, after all it’s my personal war.

 

Dr. Surendra Gulati

At the time of the diagnosis, I was going through what is called exacerbation, flare up or relapse.  Let me just say, I am the worst patient that walks this planet and Dr. Surendra Gulati was up for the challenge after all he has 35 years experience as a Neurologist.

Those who live with MS knows, having the right doctor means absolutely everything to your prognosis. Now as I walked or rather stumbled around Dr. Gulati's office trying to explain some of the things I was experiencing feeling absolutely foolish to what I was saying. 

He tells me I need to be in the hospital so he can run some test and depending on the results he was going to schedule me for Solu-Medrol treatment.  He tells me this is an IV steroid treatment and that I should plan to be in the hospital for at least 5 days.  This is when it began. 

Before completely going off the deep end here I first calmly asked what kind of test did he need to run?  He explained I needed an MRI, that didn’t sound to difficult.  MRI is a test that produces very clear pictures of the human body without the use of X-rays. It uses a large magnet, radio waves and a computer to produce these images.

MRI can often detect damaged areas in the brain or spinal cord that would be missed by other imaging techniques such as a CAT scan.  The other test we talked about was a spinal tap.  So I asked How Does a Spinal Tap Help Diagnose Multiple Sclerosis and is this going to hurt?  The Doctor is lucky he has a nice smile.  He tells me as far as the Spinal Tap goes I won't even feel it.  He then explains that a spinal tap that reveals a large number of immunoglobulins (antibodies) as well as oligoclonal bands (the pattern of immunoglobulins on a more specific test) or certain proteins that are the breakdown products of myelin is suggestive of MS. These findings indicate an abnormal autoimmune response within the brain and spinal cord, meaning that the body is attacking itself.

Okay, so I’m up for the MRI, not to big on the Spinal but I’m going to do this however I can not be in the hospital for 5 days with this IV treatment so we would have to work around that if possible.  Dr. Gulati explains I can have an IV piggy back and do the treatment as an outpatient but as far as the Spinal goes I had to be admitted and needed at least two days in the hospitsl for MRI and spinal.  I agreed, and so I went to St. Joseph Hospital and admitted myself.

I was admitted in the early afternoon, I remember settleing in my room and having my MRI before dinner.  After dinner about 7:00 p.m. Dr. Gulati was doing rounds and came into my room to check on me.  He is truly blessed, a kind and gentle man with so much compasion and understanding to his patients, at least this is how I see him.  He sat in my room and asked how I was feeling and all the basic questions a doctor usually asks.  He explained that he would be doing the Spinal within the hour. 

Wow, I was not ready for that.  So soon I asked?  You sure this needs to be done?  Are you sure you wouldn’t want to do this in the morning after a good night sleep?  Like I said he does have a nice smile.  No time like the present my friend, says Dr. Gulati.  Yes, I’m sure this needs to be done and as far as doing this in the morning, let’s just get this out of the way shall we?  I’m here, you’re here we might as well just do this, besides like I told you before you’re not even going to feel it.  However, you do have to stay in bed for at least 24 hours, would you do that for me?  Who could argue with a nice smile?

Of all the MS tests, the spinal tap is the most invasive and seems to generate the most anxiety and anxious I was as I laid on my side waiting for this ungodly pain in my spine from an needle.  I felt something cold as Dr. Gulati cleaned my lower back and applied a numbing medication around the needle insertion so that I would not feel much pain.

He kept his word, I didn’t feel a thing.  Nothing says I trust you more than when a doctor keeps his word.  When he finished the procedure he left the room and I was made comfortable in my bed.  About 30 minutes later to my surprise Dr. Gulati came back to check on me, to see if I was okay, in any pain or just wanted to talk.  As he said good night he explained that I was going to be okay and that I would start my IV treatment in the morning and since I was so quiet if I had any questions write them down and we could discuss them when he came back.

I DON'T HAVE TIME FOR THIS

I LIVE WITH SPMS

So here I sit at my computer, trying to figure out what to say about MS.  Not a single thought about this disease crosses my mind.  What does cross my mind is a question.  What could I possibly say to anyone diagnosed with this disease that they don’t already know?  I felt the answer to that question lied in the social network, so I logged into my facebook account and jumped into my group to see what was going on.

I spent about an hour looking at the post in this support group and saw over and over statements like,  “Fatigue Sucks”, “MS is just really more sh*t”, “I’m so tired”, “Another bad day, my kids won’t listen”.  I thought to myself wow, none of this is me and I would like to jump in and give everyone a hug.

In 1989 I was sick, the fear was uterine cancer however I was coming to the end of an 11 year very abusive marriage and really didn’t have time to be sick or worry about cancer.  My focus at that time, was my marriage salvageable and how will I take care if my three children and disabled mother if it’s not?

A few days later the answer to my marriage was abundantly clear that this was not a marriage meant to be saved, especially after finding my now ex-husband with my best friend from High School right before climax in my upstairs bathroom with my three and her three children sleeping downstairs.

Believe it or not I was calm, I grabbed a glass of ice tea and a cigarette and in the words of Anthony Robbins the emotions took over.  As I listened to my husband and my friend tell me how sorry they were and how they didn’t mean to hurt me it wasn’t until my husband said something that made me just laugh out loud.  He asked me if I was going to let 11 minutes ruin 11 years.

I just couldn’t help myself from laughing and all the while thinking wow is that really all he has to offer, 11 minutes?  My plan through my emotion was put into action at that point.  Then again the Universe had a plan of its own and I had a mild stroke that night and was admitted into the hospital.  I was dieing.  According to my doctor it was uterine cancer and the cells were multiplying rapidly and I needed a hysterectomy to save my life.

I was anemic and he was not sure if he could get it all.  He told me he was afraid the cancer had gone through the uterine wall and affected another organ such as my bladder.  Seriously, all I kept thinking of is I don’t have time for this, my children needed me and I had to get that woman out of my house.  Now is that crazy thinking or what?  Well apparently not as crazy as me telling my doctor on Wednesday before surgery I had to be home by Sunday.  He told me there was no way, I told him I would be walking out so do a good job in the operating room.

As I was being rolled into the operating room many thoughts ran through my head, my home, my children, have to find a divorce attorney and Anthony Robbins.  That’s right a motivational speaker that I had an opportunity to listen to in previous months and I thought of something he said at that moment about pain vs. suffering.  Pain is a fact of life, the experience of hurt.  I’m about to be gutted and it’s going to hurt like hell!  Now suffering comes from feeling powerless to stop the pain. 

As the anesthesiologist started to put me under I thought, pain is inevitable but suffering is optional and when I wake up and leave on Sunday my children and I were not going to suffer for the choices my husband and my friend made just a few nights ago when they broke my trust not to mention my heart, my mind, body and spirit were now in the hands of a higher power.

In the recovery room, Dr. Lopez told me he is certain he got all the cancer but I would have to be tested in a few weeks to make sure.  As drowsy as I was, I reminded him I needed to be home on Sunday and would be walking out, he smiled and told me to rest.  My motivation was strong and the power of my intention even stronger, Sunday came and I was released and in a divorce lawyer’s office Monday morning.

One year later almost to the day I am divorced with three children and a workaholic.  I woke one morning with this incredible numbness in my legs, I remember going through something like this when I was a child and my mother took me to the emergency room for a B-12 shot.  So into the emergency room I go.  Talking to the ER doctor he asked all sorts of question and some of the answers I gave him, I felt like a hypochondriac. 

Everyone that knows me knows I over analyze everything and can find a reason for anything so when I explained my abnormal sensations such as "pins and needles," numbness, itching, burning, stabbing, or tearing pains. I explained to the doctor it was probably because I work 7 days a week 12 hour days.  Still he ordered an MRI.  Now here I sit watching, All My Children waiting for the results to come in when the ER doctor comes in and tells me he called in a consult and that we were waiting on Dr. Gulati a neurologist.

So, Dr. Surendra Gulati walks into my cubical in the ER and asks me how am I doing?  Seems to be a rather simple question, and so I said that would depend on him.  What is the verdict of the MRI?  Then he explains to me, he said Karel you have Relapsing, Remitting Multiple Sclerosis.  Now if this wasn’t a time to take pause I don’t know a better opportunity.

Like some, maybe most I was angry, there go those emotions again and this time Anthony Robbins was not in my head.  Seriously, are you kidding me I snarked back.  I don’t have time for this, I haven’t even celebrated my one year anniversary of being cancer fee and now the Universe throws this at me?  What the heck did I do to deserve this?  Again I told the doctor I just don’t have thetime.  I’m a single parent with three children and I work 7 days a week most of them 12 hour days and my mother is disabled and as much as she helps me with my children I am the one she relies on to get her back and forth to all her doctors, do the grocery shopping for her and so on. 

I tell you this fellow MSers, a very important key for me is to have a doctor you can respect and trust, without that I really don’t know how anyone could manage this disease.  Dr. Gulaiti sat on that stool in my cubical across the room, I remember with his chin resting on his hand just listening and watching as I paced and ranted around the cubical angry.  As I slowed down he asked me, Karel are you done?  I slowly turned my head to look at him, I shut up and sat back on the gurney and asked what the 411 on MS was?

This was a disease that with multiple symptoms also comes with a powerful tool called attitude.  He showed me the lesions on my brain, explained to me that MS is an inflammatory disease in which the fatty myelin sheaths around the axons of the brain and spinal cord are damaged, leading to demyelination and scarring as well as a broad spectrum of signs and symptoms.

Wow, really I get the Wikipedia answer, as if I understand what he’s telling me.  So I asked what do I do, do I take a pill what?  Dr. Gulaiti explains to me that with the information I gave and the results of the MRI he will set me up for what was called a Solu-Medrol IV treatment as I presented with signs of an acute exacerbation (relapse) in functionally disabling symptoms with objective evidence of neurologic impairment such as loss of motor, and/or cerebellar symptoms.  And yes that is exactly how Dr Gulaiti spoke to me straight out of a medical book.  He also wanted me to see a counselor to help me cope with this disease and it’s effects on my life and my family’s life and he almost lost me as a patient when he told me to stop drinking coffee.

I’m in such a state of fog right now, I can’t think straight, I don’t know enough to ask any intelligent questions so I went back to something he said about attitude being a tool so I had two questions for him 1.)  Is there a cure?  2.)  Will I die from this?  His response was “No my friend there is no cure and yes you will die with this”.  With that I was done talking.  I was hooked up with a IV piggy back and was told to come in for treatment every morning for 7 days, this gave me the option to work and take care of my family.  I just don’t make a good patient and explained that to the doctor up front so he knew who he was dealing with.

For the most part I would like to think I am a very positive person.  I have this IV piggy back stuck in my arm and I am driving home from the ER, trying to make sense of everything I have just been told, about ready to take on another one of life’s challenges.  I’m thinking positive thinking = positive attitude = positive results, horse crap!  I’m angry and frustrated and this disease hasn’t even reared its ugly side yet.  I’m going home to lie to my family, tell them everything is okay and then plan dinner and I’m doing this all alone.

I tell you this fellow MSers, a very important key for me is to have a doctor you can respect and trust, without that I really don’t know how anyone could manage this disease.  Dr. Gulaiti sat on that stool in my cubical across the room, I remember with his chin resting on his hand just listening and watching as I paced and ranted around the cubical angry.  As I slowed down he asked me, Karel are you done?  I slowly turned my head to look at him, I shut up and sat back on the gurney and asked what the 411 on MS was?

This was a disease that with multiple symptoms also comes with a powerful tool called attitude.  He showed me the lesions on my brain, explained to me that MS is an inflammatory disease in which the fatty myelin sheaths around the axons of the brain and spinal cord are damaged, leading to demyelination and scarring as well as a broad spectrum of signs and symptoms.

Wow, really I get the Wikipedia answer, as if I understand what he’s telling me.  So I asked what do I do, do I take a pill what?  Dr. Gulaiti explains to me that with the information I gave and the results of the MRI he will set me up for what was called a Solu-Medrol IV treatment as I presented with signs of an acute exacerbation (relapse) in functionally disabling symptoms with objective evidence of neurologic impairment such as loss of motor, and/or cerebellar symptoms.  And yes that is exactly how Dr Gulaiti spoke to me straight out of a medical book.  He also wanted me to see a counselor to help me cope with this disease and it’s effects on my life and my family’s life and he almost lost me as a patient when he told me to stop drinking coffee.

I’m in such a state of fog right now, I can’t think straight, I don’t know enough to ask any intelligent questions so I went back to something he said about attitude being a tool so I had two questions for him 1.)  Is there a cure?  2.)  Will I die from this?  His response was “No my friend there is no cure and yes you will die with this”.  With that I was done talking.  I was hooked up with a IV piggy back and was told to come in for treatment every morning for 7 days, this gave me the option to work and take care of my family.  I just don’t make a good patient and explained that to the doctor up front so he knew who he was dealing with.

For the most part I would like to think I am a very positive person.  I have this IV piggy back stuck in my arm and I am driving home from the ER, trying to make sense of everything I have just been told, about ready to take on another one of life’s challenges.  I’m thinking positive thinking = positive attitude = positive results, horse crap!  I’m angry and frustrated and this disease hasn’t even reared its ugly side yet.  I’m going home to lie to my family, tell them everything is okay and then plan dinner and I’m doing this all alone.

That night after dinner I got on my computer and started to research everything and anything about Multiple Sclerosis and absolutely everything I read, I was doomed to suffer.  For me that was an unacceptable choice in which I went back to the days I was fighting cancer and that saying from Anthony Robbins crept back into my brain about pain and suffering.  With this disease “pain” was inevitable but I was not going to give into “suffering” from feeling powerless to stop the pain. 

For me attitude was power.  I could either deal with this pain and become depressed and suffer in silence, knowing this was my life and I can’t do anything about it so screw it, just give up, or I could educate myself.  I believe I know my body better than anyone knowledge is also power and before I could stop I was off the MS sights and onto other sights to educate myself on this disease and a healthy body.   It was then I knew and with a smile on my face could admit, I had MS and I wear orange for me.  I just do not have the time in my busy and active life to give into suffering from a challenge.

Now some of you, like my doctor might think I'm in denial but I tell you this, I am not.  I too deal with fatigue and I think it sucks, I deal with the numbness in my fingers and at times it's very difficult to type.  I just blame it on the rented finger scenario and yes I deal with pain.  I have the pins and needles and the burning in my shins not to mention the pain from the neuropathy in my arms and my spine.  I have spasms in my legs at night that sometimes the cramps are so bad I have to stand but I know if I try to get up I will only fall, but I have to get up and stand and release the cramps desperate to relieve that pain.

I am going blind because on top of the optic neuritis I also suffer with Iriris which is also very painful and when this flares up I have to be in a completely dark room once I have dilated my eyes and then put in the steroid drops.  Over the years the spasms have moved to my face mainly the right side and I know one day the spasms will cause my face to become paralyzed.  I have already warned my family and friends of my future elephant woman look so they are not surprised.

There are good days and bad and every once in awhile there sneaks in a GREAT day.  I know that every day that I wake up to the sun and the smile on my grandson's face or talk to my best friend; it is me that has the power and control.  I live my life for me and with that MS is only along for the ride.

That night after dinner I got on my computer and started to research everything and anything about Multiple Sclerosis and absolutely everything I read, I was doomed to suffer.  For me that was an unacceptable choice in which I went back to the days I was fighting cancer and that saying from Anthony Robbins crept back into my brain about pain and suffering.  With this disease “pain” was inevitable but I was not going to give into “suffering” from feeling powerless to stop the pain. 

For me attitude was power.  I could either deal with this pain and become depressed and suffer in silence, knowing this was my life and I can’t do anything about it so screw it, just give up, or I could educate myself.  I believe I know my body better than anyone knowledge is also power and before I could stop I was off the MS sights and onto other sights to educate myself on this disease and a healthy body.   It was then I knew and with a smile on my face could admit, I had MS and I wear orange for me.  I just do not have the time in my busy and active life to give into suffering from a challenge.

Now some of you, like my doctor might think I'm in denial but I tell you this, I am not.  I too deal with fatigue and I think it sucks, I deal with the numbness in my fingers and at times it's very difficult to type.  I just blame it on the rented finger scenario and yes I deal with pain.  I have the pins and needles and the burning in my shins not to mention the pain from the neuropathy in my arms and my spine.  I have spasms in my legs at night that sometimes the cramps are so bad I have to stand but I know if I try to get up I will only fall, but I have to get up and stand and release the cramps desperate to relieve that pain.

I am going blind because on top of the optic neuritis I also suffer with Iriris which is also very painful and when this flares up I have to be in a completely dark room once I have dilated my eyes and then put in the steroid drops.  Over the years the spasms have moved to my face mainly the right side and I know one day the spasms will cause my face to become paralyzed.  I have already warned my family and friends of my future elephant woman look so they are not surprised.

There are good days and bad and every once in awhile there sneaks in a GREAT day.  I know that every day that I wake up to the sun and the smile on my grandson's face or talk to my best friend; it is me that has the power and control.  I live my life for me and with that MS is only along for the ride.