The love of a family

I know it has been a while since I have posted. I have started summer school and been working on a lot of things with my recent diagnoses, such as therapy, and learning how to alter my lifestyle to learn how to manage my MS the best way I can. And in all that still being a "spouse" and a mother of a 20 month old little boy. I am going to try and catch you up on this past summer, because its been almost 3 months since I wrote last.

April 30th of this year was the Walk MS-OKC. My sister started a team and it was called "Team Gean." Gean is my middle name and also the name of our Event Planning company that we established last year. www.geanparties.com Little ad throw in ;) I was named after my mothers best friend Gina who died of cancer in her younger years. Also, my dads oldest sister and my mothers oldest sisters middle names are Jean/Eugenia, the Spanish translation. Team Gean consisted of friends and family members and raised about 2000 dollars for the National M.S. Society/ Oklahoma Chapter. The walk was at the OKC ZOO and raised about 150K dollars! Around 2500 people showed up to support and walk for this cause, that has now became my cause as well.

As Blake, Baylem, and I, our little family, made our way into the parking lot of the Zoo, It struck me of what I might see. And I am not going to lie, I did become a little choked up and scared. There might be people here that are in wheelchairs because of this disease. That moment on I was so scared as we walked up to the meeting point. I had just been recently diagnosed with MS, and in my mind I wasn't ready to handle the what if's, or that could be me one day. Just as I expected there were people in wheelchairs, young and old. Was I stupid for thinking there wouldn't be or was I just still putting off the thoughts, and was still maybe in denial.
You know when your young and you don't know why or understand why certain people have to use a mobility device and you might stare? Well that was me that day. There I was, 27 years old staring at those people with disabilities in the wheel chairs. How dare me. But in reality we had something special in common that lead up to their aid. We both have M.S. I found myself looking at not just the chairs, but their legs, or their arms, facial expressions, demeanor. One thing I did notice was that they all looked content.

There was Team Gean waiting for the walk to begin. As I looked around I saw my cousins, aunt, my cousins children, family friends, and friends of my family members that I might not have known. My sister handed me the t-shirt she had made. It was green, my favorite color, and on the front it read "Team Gean, She will run again." It took everything I had for me to not start crying. All these people were there for me. They loved me and were concerned and wanted to support me. They woke up early on a Saturday and took the time out of their lives to do this. It meant so much to me. Especially being newly diagnosed and not knowing how to handle myself and still being in a whirlwind of disbelief, anxiety, and just thousands of different emotions all at once. I love them all very much.

We started the walk and I had to hold on to my son, Baylem's stroller. I have noticed over the past 3 years I have needed something in front of me to be able to walk without tripping. We took him over to the animals as we walked. When we pulled over for a bathroom break, I noticed there was a wheelchair sitting outside the restroom I was at. I went in and there were 2 older ladies inside. As I came out I realized it was gone, and it had been one of those ladies who looked totally capable of walking. This is the conclusion I drew in my head: maybe they are like me and just need help. Not the fact that they are confined to it, just a little extra help like my sons stroller. It made me think differently about all the people who I supposed needed the chair. They might have needed help, and I am sitting here thinking that they were doomed, and so was I. That is not always the case. Just because your in a wheelchair doesn't mean you can not enjoy life. I knew that and has always known that but its harder to accept when it might be something you think about more.

My family is so close and God has blessed us so much. It is so weird to say this but I guess since we are on the topic of family I might as well. When things started to become strange for me around the time I was diagnosed and experiencing more symptoms and had a relapse, I was driving home thinking. I thought about how blessed our family was and how awesome of a connection we all have maintained. I contribute that to our parents and their parents. I thought about how we have been so blessed that we have not lost any of our immediate family members from diseases or tragically because I hear of a lot of families who have and do experience that. I began thinking I haven't always felt so good and I wonder if my physical condition is the reason. Is it me the one who is going to be that person? The cousin, sister, aunt, etc. who will have to endure a hardship. (We did lose our Uncle Andy at a young age. Even though he was divorced from my mother's sister, I still loved him and considered him my unlce, we all did.) Was I the one who was going to be faced with a trial because no one in our immediate family really has? I honestly did think that and began to cry because in the back of my mind I knew that something wasn't right, and this might be true. I was scared, but I remember thinking I would rather it be me than my siblings or family that I love dearly, and especially my son.
And it was.

I think about this day often in my mind now. I think about the truth that I will have to face a disease. "It could be worse," is what I always tell people when they say how sorry they are and how bad they feel for me. It really could be worse. Like I said earlier in my blog, I was relieved to hear the diagnoses of multiple sclerosis than a diagnoses of an inoperable tumor. And the truth is as you can see I have such a huge support system that would be there for me no matter if I was in a wheelchair from this, or if I will just always walk with a drag or limp at times. They continue to love me and support me and not all people are blessed with such an amazing support system. So here is to you all. Vickie,Mike, Mandi, Kayli, Jeff, Mickie, Mike, Damon, Dylan, Don, Dana, Kelsey, Kinsey, and all the families you have created. And to my wonderful parents Mike and Debbie and my siblings Jessica, Joshua, and Vincent and your families. I love you and I will endure this and win because I have all of your love. I hope and pray this is the only thing our family will face together and I am fine with that. And lastly to my family Blake and Baylem. Thanks for sticking by me when sometimes I am  unbearable and want to give in. And mostly to our God. I love you all.

I didn't pay dues for this.

I stabbed myself today with a needle. I started my Copaxone injections today. I never imagined in my life that I would be the lucky candidate to receive assistance in paying 1800 dollars a month for medicine and a pen that would shoot this stuff into my body that burns. I never imagined either that I would be a member of a club unwillingly. This club has an awareness week, has non club members hold benefits to raise money for it, and has a color designated to be associated with it. The thing is I didn't sign up for this club, honestly at first I thought I don't want to be a member of your group.

I am not afraid of needles so when I was told that the treatment for MS was injections, I didn't freak out. When I was in middle school I was a cheerleader. I could do all the cheers and was one that could tumble, my mother put my sister and I in gymnastics when we were younger. One day at practice, I took of to do a roundoff back-handspring. There was a problem at the beginning. My wrists could not support what I was doing. I collapsed to the ground in curiosity mid roundoff. I was good at tumbling, now why all of the sudden could I not do it? Also, in basketball practice it hurt so bad when the ball would hit my hands as I was catching it. I sat out a lot in practices, I am sure people might have thought I was faking it. The truth was that I went to another specialist after my dad decided that my blood count was not right, and Dr. Elizabeth Taylor-Albert (no joke) diagnosed me with Juvenile Rheumatoid Arthritis. The medicine I was put on required that I get blood taken often to ensure my white blood cell count was normal. So that being said, needles have never bothered me.

Stacey is my nurses name. Home care patients can be young too, I am one of them. She came down from Oklahoma City to teach me how to do my injections. A lot of information, but I will get it. I was not afraid really, just more nervous. Did I trust myself to do this? I had to. The first injection seemed to easy to be true. I did all the steps myself with Stacey's help of course, the first culprit of sites was my left thigh. I injected and held the needle in for 10 seconds while the medicine infused into my body. "The medicine could burn inside up to 15 minutes." Stacey said as she asked me how I felt. "Fine." I said "That was easier than I thought." No sooner had those words got out of my mouth than I started feeling really hot, and sweating, and could not catch my breath. I didn't feel good. "You are probably having what we call a site reaction," says Stacey.  I leaned down with my hands on my face, and my elbows to my knees. "I don't like this dad." I started crying. I hated the way my body felt, I made my body feel this way and I did not like it. At this moment I did not want to do this. I really wanted to give up. After 15 minutes I felt relaxed again. "If this happens again tomorrow you need to call your doctor because you might be allergic to the Copaxone." No, I thought to myself. This was the medicine with the least side effects. Plus, I have been waiting about 2 weeks to start my treatment and if I had to change I would have to wait longer. All I have wanted was to get started on treatment, that would not be good.

Stacey left to go back to OKC. She left me there with my parents, a sense of accomplishment, and nervousness. Now it was up to me. I am a member of the club no matter if I want to be or not. I can't let this membership consume my life. I have to still be me and do everything I love to do. I still must respect the club, but not let it ruin me.

Very first patient....literally.

Today was my first appointment at the brand new Multiple Sclerosis Center for Excellence. I literally was the first patient. Dr. Farhat Husain and Dr. Gabriel Pardo and the Oklahoma Medical Research Foundation  have opened up the Multiple Sclerosis Center for Excellence on the campus of the OU Medical Center. Dad and I pulled up to the building this morning and literally they were still constructing the thing on the inside, but it was sure a sight to look at. It was gorgeous, and in the back of my mind I thought, this will be the place I will be spending a lot of my time at pretty soon. I am happy. I am ready to get this started and treated.


We walk in to the freshly put together office. I say that because they were still hooking up the printers, men in construction helmets and tool belts were walking in and out of the office, and all the women behind the glass looked as confused about what exactly to do about the first patient, as I was about my newly discovered condition. I looked at my father, and said "I keep picturing one of the construction men walking out to the lobby and saying, "Erica", just like a nurse would do to call you back at the doctor's office." He laughed.

My father, Miguel Rey Sabedra M.D. is a family physician. He went to Oklahoma Christian College his first year of college and then he transferred to South Western Oklahoma State University in Weatherford, Oklahoma. He had met my mother, from a small town called Hydro and they both attended college there. My father changed his studies from wanting to become a preacher, to biology. He had told me at one point that he just wanted to be able to provide a great life for his family. Not only that, but he has a love for science and the body. He always talks about how amazing the human body is and how God put it together. My father was accepted to the University of Minnesota Medical School, at this time it was one of the top medical institutions in the nation. He also got accepted to Oklahoma University, but he felt this was where he needed to be, and he loved it. He graduated from the University of Minnesota Medical school in 1987. Then we, mom and dad, and my sister and I, moved to Wichita, Kansas. He then continued his residency at St. Francis Hospital. There my brother was born and we then moved to Marlow, Oklahoma. My dad has always been a positive influence in my life. He has always pushed me to stop thinking negatively, no matter what. I know that through this journey, God and my father will be my biggest encouragement.

Dr. Husain is a small Middle Eastern woman. She has short brown hair, dark complected skin, and dark eyes. She wore a navy blue suit jacket with a matching skirt and white collared shirt. Her shoes where brown loafers and she had on glasses. Simple, yet refined. I was referred to her by Dr. Morgan. He said very positive things about her and assured us that she was the best he knew for my condition. She asked me about the symptoms I had and looked at my MRI's. Even Dr. Husain was not prepared for the first patient. She kept running in and out of the room to get paper, then a pen. As she walked back into the room she confirmed what Dr. Morgan had diagnosed. Multiple Sclerosis. We then discussed the treatments that were available today and we decided on Copaxin (sp). The company will travel to my house for a length of time, teach me how to do the subcutaneous injections, and then it will be up to me. She then told me that she wanted me to do a study and I of coursed agreed to all she asked and recommended. I met with Amy, my physical therapist who specializes in MS therapy. I am oh so ready for this recovery. Everything is looking up and I am excited.

Do not Google medical terms.

Here you go Jess, you have basically begged me for three days to enter the blogging world and so I am doing it. I guess I will take your advice and turn this into a book when the time is right. Jessica is my sister, who was at my most recent neurological appointment along with my parents. Let me tell you, if you have never experienced a stressful wait as finding out the results from a brain and spine MRI that took three hours and two Valium, be thankful. Valium because I'm claustrophobic, and three hours of spinal and brain MRI's because I have not ran in about four years.

About four years ago, I was living in Norman, Oklahoma with my ex husband. We had five dogs in our house. Two that were ours, two that were my moms, and one that was his mothers. A mutt, Gizmo, wow I miss that dog. He was dirty, stinky, and fun all in one. I guess that is the case for most dogs. Two Yorkshire terriers, a pit bull with the most gorgeous blue eyes, and a weenie dog. All of them were escape artists, and although they would run away they would always come back. I am telling you this because It was a mad house to say the least. We did not regularly have this many dogs, just ended up dog sitting them all at once. Only the pit bull and the mutt were ours.

As anyone knows it is windy in Oklahoma, we are in tornado alley for goodness sakes. Not only is it windy but we have the most unpredictable weather. It will be hot as hell, or cold and icy and those could occur with in days apart. In 2006 we had a horrible ice storm. I remember it well. Trees were frozen and snapping all over town. It sounded like a war outside. When a tree snapped, you would have thought another bomber had dropped another bomb miles or even blocks away. The neighbors house behind ours had a huge tree that happened to do just that. I am telling you this because it was around this time in my life when I realized something was not right. Unfortunately when it snapped, it fell on our fence. And guess what the dogs did when they realized this? They Ran.

I have never been so relieved to hear the words that I heard two days ago in the office of my second neurologist, Dr. Charles Morgan. Some might think it is ridiculous for me to think so, but in my case, and that day, I was. After years of worrying, praying, anxiety attacks, begging for answers, and unexplained medical issues, I was told that I had multiple sclerosis. The reason I am relieved to hear that I had this life changing illness, was because I would rather have this, something controllable and in my case curable, than an inoperable brain tumor. The reason I say don't Google medical stuff is number one because my dad told me not to, it is crap and always gives the worse examples. Number two because Dr. Morgan also told me not to. If you ask any doctor they will tell you not to. So my advise to you "Don't Google medical things" Curable you ask? Yes, I believe that God will cure this disease. Why? Because I have faith in Him.

My friend Noah Cooley is such an inspiration to me. I had asked him to pray for me because if you want to know, this man has stronger faith than most people I know. I wrote him a message asking for prayers and mentioned that I was worried and scared. He wrote back plainly "FIRE FALL DOWN!". Take it as you want. I know that coming from him it meant the following things: "Satan, get the hell away from my dear friends thoughts and body!", OR "Holy Spirit fall down on my friend." Most likely now that I think about it, Noah meant both and probably more. After that message I texted him and thanked him for the prayers and went on to say praise God I have MS, not something like an inoperable brain tumor. Noah replied saying "Erica, disease is NOT from our God. He will cure it just have faith He will." And so my focus has gone from thanking God for answering my prayers of wanting something controllable to having faith that God will heal this disease. Not only in me but anyone else who believes.