Everyone living with Multiple Sclerosis has a story, mine is no more unique than the next person and while I sit here at my computer trying to type, 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 I believe you may have 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 the time. 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.
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.
Journey For Help 
It is a struggle for so many that need the help so much. I thank you so much for sharing your journey. You are strong and your strength begins with the will to choose to be strong. I recognize that having been a teen in a loving relationship that turned wrong infested by drugs on his part and with a baby to think about. I choose to go it alone and had a very hard time yet I had strength to go beyond any boundaries in my way.
After a frustrating near 4 years of Disability due to my long history of back problems, injury in early childhood, birth defect resulting in fused discs that should have been open, I finally found the answer to why every additional thing, like water exercises even when I lost the use of the right side of my body again were not working to regain my abilities.
I had spastic curled up legs for years thinking it compression from my discs. I was seeing a Neurologist after a car accident that was caused by me having a seizure after being seizure free for over 20 years. Thankfully, beside a concussion and soft tissue jarring I was fine, my sister injured her finger taking the wheel to stop my car on the freeway by steering it into the walls, and side guards. We stopped short of an overpass, if not I may not be writing now. It was around 11 am so it was light back then on the freeway and cars called us in and stayed clear.
I was diagnosed with Probable Primary Progressive MS and my Neuro mentioned he would observe me for 6 more months then confirm. I had gone under so many tests and procedures besides MRI some painful like the EMG. I was so relieved to get the diagnosis of even Primary Progressive MS, aka PPMS, it was a relief not to have ALS also known as Lou Gehrig’s disease.
There are no medicines, aka DMD’s or Disease Modifying Drugs for Primary Progressive MS to target this disease course yet I have found some promising relief from foods, organic, Veggies, fruit, and grass fed meats on occasion and numerous Vitamins, Minerals, and various supplements.
I Am a work in progress for I have fallen into comfort sweets, yes, awful inflammatory weight gaining surgery foods as a bad form of coping in my lows. I take some traditional meds for the symptoms of PPMS and still get those awful spasms on occasion from the awful Spasticity like monster cramps of the extremities and my torso at times.
You, my friend are a wonderful person and I appreciate your strength and persistence and knowledge of Herbal Medicine and so much more.
Yolanda
‘BRAVO’ Yolanda, talk about strength. You inspire me to make sure I don’t fall into what I like to call the “Crabby Patty” cycle. I want to share your courage and your strength to the rest of our group but as you know who shares what is up to the individual. I believe when the time is right our individual stories will come out and we can all lean on one another for a continual cycle of courage and strength. Thank you.