Our Journey... Totally Not Going As Planned!!

When Scott and I started dating, I was the girl in high heels, perfect hair, not a real care in the world except for what color eyeshadow I was going to wear or if my toenails matched my fingernails. We were so carefree, just roaming day to day in complete "normalness." The night that I went to the Emergency Room for the first time with a 6 day migraine, numbness on one side of my face, and complete vision loss in my right eye, we still saw this as a temporary minor kink, a typical headache from stress and everyday wear and tear. Boy were we wrong. Little did we know that in less that a year, I would rapidly become a shell of who that girl once was and we would both have to struggle with "real life" before either one of us was ready for it to smack us in the face....

Right now I can't sleep, because the pain in the back of my head and my neck is throbbing and radiating down my spine.  I'm still in the bed, propped sideways on 4 pillows and one round donut pillow, the only position that seems to aleviate some of the strain, but unfortunately highly inhibits my typing accuracy.  I have to be honest with you now, as I know I haven't been in the past. We are  99.9999% sure that I have Multiple Sclerosis. The 100% mark has not been met, because of the extensive testing and the time required to achieve a positive diagnosis for insurance to accept, but I do have lesions on my brain, I do have Ideopathic Hypersomnia (a sleep disorder where I sleep an abnormal amount of time, like 23 hours a day without my medication and if I don't take it, I get so delirious that the pictures on the walls move), I have chronic migraines on a weekly basis, I have excruciating daily chronic joint and muscle pain equivalent to a what it would be like for a 60 year old to water ski all day, I do have blurry or partial vision in both of my eyes at random times unexpectedly, I have bleeding stomach ulcers from the migraine management medication, I cannot sit OR walk for extended periods of time, various parts of my body go numb at any given moment, but the absolute worst symptom is new and the most debilitating of all: The condition in the back of my head and neck creates confusion and the inability to perform normal tasks like everyone else.

For example, the best way to describe it is like this: The pain in my neck is so severe that it puts me in a "mental fog," prohibiting me from concentrating, walking straight and steady, focusing on words and sentences, and diminished any motivation I may have to do anything but lay down.  It honestly feels like I have weights attached to my head, pulling down at all times, while pressure is shooting up my neck. I think that if I could have something hold my head up for me, I would feel better.  It is just so incredibly heavy that I can't concentrate on anything except putting my head against something supportive, like my pillow.  It's almost like the back of my neck is about to bust from the pressure, and NOTHING takes this away.

The pain travels down my neck to the area where my bra strap is and radiates down and around my shoulder blades.  This is every single day, all day, all week, all month... with no relief. I have spent so so many months acting like everything is ok and I've told those who asked that I am doing better, and thanks for asking and things are great now. Well, honestly, I am totally lying to you and I just can't pretend anymore. I honestly don't have the energy to act like I am the same person anymore, because it exhausts what energy I do have. I guess it's pride, but I feel like everyone feels like I had potential to do something with my life, but that I ended up being a disappointment. Trust me, each morning when I scream out loud when I have to straighten my arms out and my elbow joints burn with stiffness down my arm... I feel the disappointment too,

The thing is, I don't want people to feel sorry for me. I don't even want people to pray for me to be magically healed, and for God to take the disease away from me.  Ok, well that is sort of a lie.  You can pray that God will take this specific neck and head pain  away if you want to, because to date this is the only pain I can't function with.  Other than that, I don't mind having Multiple Sclerosis, because it could be so much worse, and I have met some pretty awesome people as a result of this journey.  One of my best friends, Dawna, introduced me to her mother in law, Bonnie, before I ever even knew what Multiple Sclerosis was. When I first went to the Emergency Room and started seeing neurologists, I contacted Mrs. Bonnie, who also has Multiple Sclerosis and that turned out to be the smartest decision I have made yet. She not only connected me with my current AWESOME neurologist, Dr. Christopher LaGanke, but she also has walked me through the major turning points.

Although I kind of "knew" before I saw Dr. Laganke, I will never forget the night I got the call that I do have the indicative lesions on my brain.  I was driving home, and when I parked my car, I got out and called Mrs. Bonnie to tell her the results we had been waiting for. I was overcome with... relief! I was so excited after the LONG process of tests and being told that I was totally fine that they had finally found Lesions on my brain! Finally!!.... Um no. I was completely dilusional, partly because I was naive and partly because my symptoms were so minor compared to now. The testing was just getting started and I hadn't even bought my ticket on the MS Journey Train.  I remember standing in the pouring rain outside my house, and she told me that the results and diagnosis has not hit me yet, not really, but when it did, I could call her, because I would be devastated. I didn't understand what she was talking about until many weeks later when I had to miss a trip that was so very important to me but I was sick, I didn't understand until that day when I was sobbing uncontrollably on the couch with disappointment not only from having missed the trip, but with realization that this was who I was now... and I was not ready. I suddenly realized I was different, and it was so devastating.

Mrs. Bonnie had told me the good, the bad, and the...funny stuff. Just like anything else, you must have humor in the situation. For example, Scott, who is 16 years older than me, is now going to be able to grow old with me. What I mean is, before I was sick, when I imagined us 20 years from now, I pictured me at the top of a big water slide, motioning for him to  run up the 30 flights of stairs to slide too, while he waves No from below, nestled underneath an umbrella, his knees sore like everyone else his age while I had to slide alone all day. Wierd, I know, but It's true. Now I laugh, because we both get to grow old together, even if my appearance doesn't age as fast, my body still will, maybe more rapidly than his.Only now I tell him he will be old and senile and I'll at least look young. ha.

Scott hated the word "Caregiver" in the beginning, because he said he will be my husband, not my caregiver, because it's implied.  We quickly realized he was my caregiver and my husband, and those roles are two entirely different positions.  He has to take care of me and make sure I get in bed after I get too sleepy to function, and he makes the doctor's office and pharmacy calls, because I know he can remember to relate all of the information and not get confused.  But, he also is my husband, and he had to learn how to balance those two roles, because when they co-mingle...  I get stubborn. And stubborn and multiple sclerosis does not equal safety.

Back to Mrs. Bonnie for a sec:  She may be a little tiny lady, no more than 100 pounds soaking wet, but I know now that she is one tough lady.  She didn't shield me from the truth, and although it's hard to hear, that was so comforting in the long run.  She gives me someone to refer to. What I mean is, when I get a new symptom or get in a tough situation, I think, "I wonder if Mrs. Bonnie had to go through this... and that's comforting, because she's skill going strong.  One thing most people do not realize is that while Multiple Sclerosis is a disease many have heard of, a lot of people do not know all of the symptoms or what the disease does to your body. I definitely did not when this started.  I believe if more people truly knew some of the symptoms, they could be more helpful and understanding.  Unfortunately, Multiple Sclerosis is best described as a "Big disease composed of multiple little diseases and illnesses."  And each person has a different journey and a different symptom tracker, usually different with each new day. It's unpredictable, much like my personality, which I find to be ironic. So, just because you know somone who has MS and they are doing great and you hardly know, that really doesn't help. That kind of implies that because they are handling it so great that I should too, like I must be doing something wrong, because I'm not doing as well as they are. But the truth is, they may have a totally different kind of MS with a different rate of progression.

Often people ask me how I deal with the disease and it is best described like this:  Every day when I drive home from work, I pass a sign in Shorter, Alabama that makes me think about the disease.  I'm not sure why this sign does it, but I think it's because that sign just happens to be about in the spot where I get really sleepy on my way home every day, also a symptom. Anyway, when I see this sign, I often think the same thought:  I am so thankful that God chose to give me this disease instead of any one of my friends or family.  I know the horrible pain that I live in each day. I know what it takes to make myself get out of bed even when it hurts. But I also know that I CAN handle it no matter what. I know that, because I AM! On the contrary, I can't imagine having to watch any of them have to suffer with his day in and day out. Honestly, I probably wouldn't have had very much patience to help before now, and I can admit that. I have always known that I have an extremely high pain tolerance (as long as I'm not bleeding or I don't get a paper cut... ha), but even with a high pain tolerance, I am still in the floor at home sometimes, trying to find anything to take the throbbing away. I can't imagine if I had to watch them like that and know that I couldn't help. Because honestly, nothing except patience, understanding and an ear to listen will make this situation better... and maybe a prayer or two.  But, when you pray, don't pray that I magically be healed. Pray that I continue to accept this hand that I have been dealt. Pray that I will use this to help others as I have been helped. Pray that I continue to make good decisions regarding my health and that I have the strength to fight this every day for the rest of my life... because honesty, that thought right there makes me want to talk a nap all over again.

I know that I can do this. Do I want to do this?  Um...no, not at all. But I'm a firm believe that everything happens for a reason, and someone out there will be touched by this, and I can't lose sight of that. Scott says that I'm too proud and I need to let people help me, and maybe he is right. It's hard though, because I have gotten so good at acting normal and falling apart when I come home at night so no one will think I'm different.  Mrs Bonnie told me not to shut people out and to let them help me, and I remember thinking, "I have nothing to be ashamed of and I wouldn't shut anyone out!" Guess what? I didn't tell more than like 5 people for over NINE months! I did just that, shut everyone out and didn't let anyone help me. But a hospital stay in February for what may or may not have been a mini-stroke (TIA) and my name making it on the church prayer list changed that overnight, and suddenly everyone knew...and you know what... I felt the first blow of relief. (The second blow came when I got to ride the handicapped elevator in Los Angeles after walking 10 blocks...ha Little tiny blue wheelchair inside the blue circle... you were my savior!)

Last but not least, I am currently faced with a really difficult decision. A speedy decision. Sometimes effects from Multiple Sclerosis can be helped for a long period of time, even improved. But, like I said, each case is different.  I do not know exactly what is causing my head and neck pain, but the horrible pain is finally at the point where I can't function properly and work 40 hours a week like I have been.  I filed for FMLA, just in case, a few months ago, so I have 3 months of unpaid leave if I need it.
Bottom line:  While my heart is broken and our bank account has been depleted with medical bills and unbelievable monthly prescription costs, I am facing the decision of whether or not I should resign from my job while I still have a relatively clean file. I'm considering taking FMLA leave per my doctors request to have the time to discuss treatments, explore options, see if working everyday is straining my body still even with easier work, to see if we can afford for me not to work at all, and the list goes on.  From the time this started, I really haven't taken the time to come to terms with anything, and in the meantime my health has rapidly deteorated and I have to be able to accept that or at least know if I can reverse any of the symptoms, and I do not think I can do that if I am working everyday right now or if I am paranoid that I am going to make a mistake at work that will really cost me my job. FMLA leave will hold my job for three months max, so if in that time I can try new options and things impove then I go back, nothing lost. If nothing changes and I still can't work effectively, then we know we tried. But I can't be accountable for evidence if I don't trust my own abilities, much less expect my boss to. I have never made a mistake with the actual evidence, and this is my way of ensuring that never happens. The scary thing is that I'm only 24. What am I going to be like in 30 years?

I just do not know what to do for sure.  I have to talk with my doctor tomorrow and also with Scott tomorrow night.  We will make our decision after we explore all routes and then I meet with my boss Friday morning to let her know.  All I know is this: I love my job. I am in extreme pain. We definitely NEED the money as it is, much less without my salary. But, I also need to help myself get well and focus on me right now. I want to do what is best for my family.

So, please say a prayer that we make the right decision.  If you have any suggestions, please pass them on to us, because we are open to anything. Oh, and THANK YOU everyone for thinking and praying about as we travel down this warped little journey.... Sometimes you just have to laugh when it hurts this bad. Then you realize that this is a disease that progresses... meaning, yes, it really does get worse in this situation. That very fact is the thing that makes me relish each day, no matter how painful it is. I feel like I can't take off work today for the worry that what if it is worse tomorrow?  What would I do if I thought this was the worst pain imaginable? Tomorrow, when it hurts a little more, I wouldn't be able to handle it. ButI know I can, because I do. Well,WE do.  In a way, Scott was diagnosed with this little fate along with me. And, even when he's being a butthead and making me get up when I'm sleepy by yanking the covers off or even when he gets cranky when I'm already feeling sorry or myself, I know that God sent him to me for a reason. I rely on him to let me lean on him in so many ways... even on the Subway Handicapped elevator in Los Angeles at 10 p.m. on our Honeymoon. He never looks up and sees me limping, because he's already walking right beside me, holding my hand. 

Sometimes I look up at him quickly to try to catch a glimpse of embarrassment on his face when I am having a flare-up in public and my walking is slow... Instead, I usually get a wink and a smile and a quick simple kiss on the tip of my nose. I don't think I would trade this if I could, because the one hard simple disease that has forced me to rely on another person has taught me how to truly love someone for how they treat others... mainly for how he treats me.  I know I love him more than anything, but most importantly, I know he loves me just the same, sick or not.  I know this because he tells me all the time.