Well, well, well……..I have most definitely been MIA on here. Where do I begin???? First of all….I am going to be a GRANDMA in less than two months. My daughter and her love found out early on that this little bundle of joy is going to be a little girl. WE are all so very excited. She has had a really healthy pregnancy except one hiccup……she was yanking on her umbilical cord. That was a scary few weeks until the final ultrasound revealed that she is finally not so fascinated with her lifeline and my daughter is no longer considered high-risk. Thank you Lord in Heaven. I’m down to the last few months on my trial. In November I will have a full day of testing, evaluations, MRI, blood tests and a lumber puncture. Lumbar punctures are always my favorite!!!! NOT!!!! This one is going to be done in the lab with dye and ultrasound or something or other. In other words…..docs will not be going in blindly. I don’t think I can do that one again. I certainly hope this trial has worked or at least bought me some time until the next best thing comes along. I know that the bone marrow/stem cell transplant is still out there, but I really think I want to wait on this until insurance will approve it as a treatment and not just a trial. I don’t want that kind of bill. Right now I feel fairly strong and in a holding pattern….if there is such a label with MULTIPLE SCLEROSIS. It is summer and our little group/pod/tribe/posse of friends and family are regularly going to the rivers around here to kayak and enjoy time spent together. Life is too short to pass those little opportunities up. I have become a little lax with not drinking soda and caffeinated beverages as of late and I am here to tell you that I can feel it in my body. So I am going to go back to decaffeinated beverages and little to no soda …… except on special occasions. Hopefully I can regain that little bit of ground back. Our area has been in a drought this summer and we have had a very sad little vegetable garden, our flower beds have struggled and grass was all brown and crunchy….but we are finally getting blessed with a little rain here and there and things are looking a little better. The farmers in our area have had a really hard summer….pastures are all burnt up and hay fields are the same. Which really poses a huge issue for the upcoming winter. Many farmers have already had to start feeding their winter hay….not good. Until the rains started all the ponds were all dried up as well….which posed a huge problem for them as well. Hopefully we will continue to get the rains periodically and they will keep getting a little relief from all of that. So for now….that’s all I’ve got. I hope you have a blessed day!
It is still quite cold here in the Ozarks this morning. We have gotten quite a bit of snow the last couple of days. So needless to say the hustle and bustle of traffic has slowed down significantly. I have just stayed all cozy with my hot tea, fireplace, blanket and trusty pups. In my absence from this blog we have had some changes with our pets. Last September for my birthday I was gifted a basset hound by the name of Bonnie. She came named and it just fit her, so we kept it. Starting over with a puppy has been exhausting at times, exasperating at other times and priceless the rest of the time. She has brought me so much joy. She and I did go through basic obedience training. I was informed that she is a rather stubborn breed of a dog, however, I am happy to report that she passed with flying colors. Her trainer said she was one of the most complaint basset hounds that she has had the pleasure of training. I think she is pretty darn awesome myself. She came to us at the right time……boy does God know just what we need, even when we don’t. Shortly after she came to live with us we had to let our beloved Wilson cross over the rainbow bridge. It is never easy to lose a four-legged family member, but his quality of life was virtually nonexistent. I held him as he took his last breath and I know in my heart he had our dear Gus standing there waiting on him. That brings me comfort in knowing that fact. Our family has slowly settled into our new normal without him…..but with the delightful bonus of Bonnie. She is not the most coordinated specimen, but boy does she bring so much laughter into the house. I better jump off of hear and start my homemade chicken and noodles. I think that will hit the spot on this bitterly cold and snowy day. I hope you all happiness and safety. God Bless.
WELL……..I am still waiting on my darn lymphocyte level to come up. I have had a few tests to check on their status and to no avail….they are still not coming up to the “magic number”. It started out that I was being tested weekly…no progress…now it has been monthly and I feel like I am losing an uphill battle. I know that patience is key and trusting in the process is as well, but sometimes worry and doubt creeeeeeeeeeeep in and steal your positive vibes. I worry that if my count doesn’t come up then I will be kicked out of this trial. Then I worry that if I am kicked out of the trial what are my other viable options. I read of new treatments and don’t know that I am a candidate for most of them, any of them or even one. DOUBT – the feeling of uncertainty, to be in fear or afraid of. I think many of us out here in this crazy world have feelings of doubt over one thing or another. It is hard not to. I myself, have a support team…..most of which I don’t like to bother, or seem ungrateful, or just be whiny all the time. I thank God I have them and know that I can reach out to them when this body and mind can’t process what it needs to. Most days I pride myself in being positive and looking for the good in every situation…..as of late I find myself pretty darn disappointed in this ragbag of a body that I have. I just want it to work with me and help me out. I know that being negative and emotional will get me nowhere….but some times even the brightest star has a cloud that covers up its beauty and light. I need to always remember that there are so many worse things going on out in the world right now……that I just need to focus on the positive and stay the course. On a good and positive note we (my family) have reached the point in the summer where we try to kayak as much as possible. I so enjoy these little jaunts down the beautiful rivers that are in our neck of the woods. We can social distance and still enjoy family time as well as all the natural beauty that God has blessed us with. It allows you to breath in all of nature, soak up the radiant sun and watch your family while cataloging priceless memories of your children that are now grown…..but you remember them starting kindergarten yesterday. I am still ordering groceries online and picking them up. I am not sure what it will feel like to have this little freedom back…however, I don’t miss the lines, etc. I am not really a shopper…I guess that I have never been. I am pretty content with ordering online and the peace of mind that I am trying my best not to get sick with COVID and all of it’s 10,000,000,000 variants. Another month is coming to an end in 2021….the year is half over. I hope that this finds all of you healthy and happy. Take care of yourselves, find a little time to carve out for yourselves, if you need someone to talk to or help you carry your load….don’t be afraid to ask.
I have a few things on my mind today that I hope by sharing I can get off my chest and sort out in my cluttered mind. First of all…..I hope this finds all of you happy, healthy and well. Second, I am a bit bummed as I was slated to begin my next round of chemo (Mavenclad) yesterday….but my darn lymphocyte level was too low again. I go to St. Louis… to my miracle workers…tomorrow….maybe I will feel less anxious once I see them and they check me out. I work better when I have a game plan and I am able to stick to it. I was all psyched up to get up early, drive 3 1/2 – 4 hours, have an MRI, evaluations, blood work, lumbar puncture and then first dose of Mavenclad all before beginning our trek home that evening. But alas…..the wind was knocked out of my sails late last week and I will have to wait until this body of mine gets onboard with the game plan. Third, WE ARE VACCINATED!! I am not sure if it is mind over matter, but I am less anxious about COVID now that we are. Time will tell. We just have to continue to be vigilant and not take any chances. Fourth, my hubby and I are expanding our business and I am WORN OUT with all the red-tape, hoops and paperwork that we must fill out, jump through or tackle to get all of it done safely and legally. Please Lord let me keep what little sanity I have left. Lastly, I had the distinct pleasure of speaking with a lovely lady yesterday about this wonderful disease. She has been diagnosed for quite some time and we swapped a little of our “war stories”, phone numbers and I let her know about this blog. I hope she is able to find a little help and humor as well as understanding within these posts that I write. I then..in the same breath re-met a beautiful lady that I had spoken to long before the craziness hit with COVID and everything shut down last year. On the first encounter she and I were visiting while our nails were getting beautified by a local nail shop…..they are miracle workers…btw. She is in the medical field and had a friend whose daughter was experiencing some disturbing symptoms and her family was praying for an avenue to find the answer…..enter my conversation with the sweet lady. I had shared with her some of my symptoms and the fact that I had been reading about a doctor that has MS and had changed her eating….which essentially changed her life. Dr. Terry Wahls….if you have a chance to read up on her and all of her life changes….please do so. I had also told her at that time about my amazing doctor and all the quality of care that he and his staff have given me. She asked for his name and I gave it to her. So I was able to possibly open an avenue for these two ladies to receive care from this wonderful man. Fingers crossed that they are able to do so. I have shared on here my disappointment of having my dream career cut short. I lived for my students and helping them….yesterday I felt that same sense of pride, accomplishment and self worth. I was able to possibly help two individuals that are struggling their way through life with this disease. For those two ladies I say thank you…thank you for reminding me that I CAN HELP. I still have a purpose even though my canvas has changed a bit. If I could talk with individuals, families or friends of people that have MULTIPLE SCLEROSIS on a daily basis I really think I would love it. I am passionate about finding ways to help others, supporting them on this journey and possible offer an understanding ear to listen to them as they search for their own answers. This disease comes into your life with no warning and can take you a prisoner. For me….I try to chose every day to not be a prisoner. Hopefully all goes well tomorrow with my checkup and we can proceed pretty quickly with the next round of chemo. I will try my best to blog more often than I have lately in the future. This darn old wet weather we have been having has gotten me down. God Bless!!
What to write about? What’s on my mind? Well alot of different things. Today is a beautiful day. The sun is shining….but a little cool. But I will take the sunshine. Thank you…thank you…thank you. I am so grateful for that. I was looking at Facebook last night and was struck by a post from a parent of a former student of mine. It was his 20th birthday. He passed away in early March of 2017 from leukemia. As much loss that was felt by his passing I am certain that even more excitement was felt at the gates of heaven when he passed through them. He was such a great young man. I made sure to convey that to his sweet parents last night and they replied with ….”he always said that you were the ‘GREATEST TEACHER’ of all time”. That of course made me proud and sad all in the same blink of an eye. I miss teaching and all the kids that touched my life and having the opportunity to touch their lives in one way or the other. Even though I wasn’t ready for my career to end….I do know that everything happens for a reason. Sometimes those reasons don’t reveal themselves as quick as we would like…but they will reveal themselves when the time is right. Patience…patience…patience. I had my 9th month post chemo checkup with my neuro last week. It was a good visit. I spent quite a bit of time hashing out the upcoming round in May. I will have a long day that day…..but it’s doable. I so enjoy how he takes his time with me and answers every question that I have and even some that I haven’t thought of until the conversation takes me to it. I will have an early MRI, then bloodwork, evaluation, a lumbar puncture and if everything is good I will then have my first dose before heading home. This time I know what to expect. Last time I went into the treatment pretty blind…even though I researched it and read everything I could on Mavenclad. I had hopes that I would fly through the chemo treatment with flying colors….but Mavenclad had other things in mind for me. I think I might have tricked myself into thinking….because it hit me so HARD, then it will really just completely restart my system better than anything else will. I am hopeful that these next two rounds are easy as pie….but I am quite aware of what can happen. So I will attempt to be strong, lean on my family, friends and medical staff, God and pray like the dickens that all goes well. As I am sitting here typing I am watching our senior dog (Wilson) try his hardest to get up on his feet to walk over to me. So after much struggle and grunting and huffing and puffing he has gotten up and walked over to me…all of about 5 feet. He is sitting at my feet and staring up at me with his cloudy little eyes (I think most of his sight is gone) and quite literally smiling at me. So I pet him on the head and gave him a little scratch behind the ears and now he is a happy little guy……now resting at my feet for his one millionth nap today. Another reason to be grateful…..we have another day with him. So even though I babble on and on at times I want to always remind myself and others to always find one thing to be grateful for each day…no matter how small it is. Spring symbolizes new life and growth…I wish that for all. God Bless.
Once again…I have been remiss in writing lately. I have been busy, melancholy, scared and didn’t feel good for the last few weeks. As with most of the United States…..we have had bitterly cold weather mixed with snow and ice. I am very thankful for my warm fireplace, plenty of food in the house to cook, no frozen pipes and no lack of power. Many around us and across the nation struggled to have even one of those things…so I am beyond blessed. I am hoping everyone is getting back to normal by now. I have to share a little story that happened today. As a person that is immunocompromised I have to be so very careful in anything I do. I have shared before that I often do grocery ordering online and then pick it up. I also have to do this with medication……all at the same place. But you have to park is separate places for each. Well…..this morning I picked up my grocery order and then went around to the front of the store to get in the allotted parking spot to pick up my prescription….nothing new. But, today there were no parking spaces. So I found a space 4 slots down and dialed the pharmacy to see what they would have me do. They were very nice and said they would send someone out with my order and try to find me. I waited and watched……waited and watched…..waited and watched. Then my phone rang and the young lady said that the worker could not find me and to call back when I found a slot or just come in. I explained to her that I am immunocompromised and can’t come inside….DRS ORDERS. So then I waited and made another pass at the parking situation…..nope….no dice. So I waited a bit longer and finally two spots opened up. I then proceeded to the allocated parking spot and called the pharmacy again. As I was waiting for the tech to deliver my medication I watched as the two spots across from me, that were marked for pharmacy pickup, were NOT being used for that. Both of the vehicle occupants simply had gone in, had gotten groceries and then slinked back out and into their cars. But…it was not my place to say anything…..maybe they had extenuating circumstances. By that time I was a tad bit annoyed and feeling like slug scum because it is raining here today. When the tech came with my prescription I decided I would say something. She said that they try to keep people from doing that…but didn’t have much success. She said next time it would probably be faster and easier if I just came into the pharmacy. I explained to her once again my medical circumstances and I kid you not…she looked at me like….really??? you don’t look sick. Well…I kindly gave her my car, paid and left. On the drive home I was thinking about this look on her face. She may not have meant anything by her words or expression. I am just having a bad MULTIPLE SCLEROSIS day. Everything hurts…bones, muscles, fingernails, hair, hands, feet and even eyeballs. I would like to sit and cry…but I am not sure what good that will do. I have been drinking my little concoction with ACV, ginger, honey and turmeric……..alot of cups are needed today. Anyway…back to my thought….you don’t look sick…hmmmmmm…..really what does MS look like? Well I will try to show you. On the picture that follows is an example of the lesions…see the white splotches in the pictures? Those are lesions. These lesions are basically holes is your brain. Whatever was in that part of your brain is gone. Lesions can occur in all three parts of your central nervous system….brain, spinal cord and optic nerves. The lesions interfere with the brain’s ability to communicate with the rest of the body……which can impact both physical and cognitive abilities. There are two types of brain tissue…grey and white matter. The grey matter is where the communication signals start and the white matter is what carries messages from one part to the other. The lesions or scars can change and grow over time. They are with me always. I can’t take a pill or do an exercise to make them go away. Or at least I have not been told of any such thing in existence. These lesions cause all kinds of symptoms….here are some of mine….extreme fatigue, trouble walking, loss of balance, numbness and tingling, difficulty concentrating and memory, word finding, and pain. Not every person with MS has any or all of these symptoms. They may have an entirely full cookie jar of their own treats. See….MS is not the same for everyone. We are all different. No two of us are alike. If we are blessed enough to not have to use assistive devices (wheelchair, walker, cane, etc) then we may not “LOOK SICK”. But I can guarantee you if you could see our MRIs then you would be able to see it. If you saw us trying to get out of bed in the mornings and stumbling across the room while holding onto furniture because we can’t feel our feet yet or our sense of balance hasn’t kicked in yet…you might see it. If you were at a family function and you completely black out, fall over in the yard flat of your face while your mother screams in terror, then you might see it. If you are having an important conversation with a loved one and your word finding skills make you say something silly that doesn’t make sense and pretty much makes you cry because you can’t explain what you are trying to say….then you might see it. If you can’t go anywhere since last March 2020 and you miss family gatherings, birthdays, weddings, funerals, anniversaries, all the holidays and get-togethers with your friends that you have done for years…..you might see it. If you sleep the entire night and wake up feeling like you can’t breath….stumbled to the couch where you sit up camp for the rest of the day and avoid movement or liquids for fear of having to move…knowing you have no energy to use the bathroom and the pain is enough to invoke crying…then you might see it.
I pray every single day that medical science finds a cure and this disease can be eradicated. It is days like today that it even hurts to breathe. Even my skin hurts just laying still. I pray that this weather passes…but I have seen the forecast and it is not in the cards this weekend. So, I will get my big girl panties on and do my best to make it through. I think warmer dry weather is in the forecast. I sure hope it gets here fast. I have a doctor appointment this coming week and I am anxious and nervous of how everything is with my system. Pray…pray…pray.
Happy 20th Birthday Kendall Elizabeth a.k.a. Grace. Today our baby is 20!!!!! Oh mercy where did time go? Apparently it has gone fast. Kendall has grown into a beautiful woman that we are indeed very proud of. I wish her a very HAPPY BIRTHDAY!!!! We love you.
We are so very proud of both of our children. They have both become such marvelous young adults…..while making this momma feel old since they are 20 and 23. I can still remember the moment that both of them came into the world, their first steps, their first words, first day of kindergarten, graduation days and all the other firsts. I may not have done many things right in this life….but those two I got right. I am quite certain God, my husband, grandparents, family and friends all had a hand in how they turned out…..thank you all.
I have been in deep thought this last week with the “changing of the guard” in our government. I watched every moment of all the pomp and circumstance that took place. I shared in an earlier post that I come from a long line of teachers, but I also come from a very patriotic family. I won’t discuss political parties….as I know it can be a very personal choice as to which party you belong. I watched all of the Inauguration because I feel it’s my American duty to do so. I want to stay informed and not let the press tell me what did or did not happen and what was and was not said. I do believe though that the press just tells us what they want us to know and hope we believe. I am not saying it is all fluff and falsehoods….but I prefer to fact check and not just believe everything they say in their reports is the gospel. I watched all the ceremonies with intent and enjoyed all the ceremonial traditions….until one striking young lady approached the podium. She was small in stature, but eloquent in speech. Her name was Amanda Gorman. She is 23….my son’s age, a poet and graduate from Harvard. I was mesmerized by her deliverance of her poem, “The Hill We Climb”. If you did not get a chance to hear her speak…check her out. She is mighty in message. It got me to thinking….we all have a message, a purpose. As I reflect on what my purpose is….first, I believe that I was put on earth to teach. I had the most wonderful 15 years of teaching in a classroom full of amazing little children. I miss it….I miss it every single day. But I know my purpose now has changed. My purpose now is to try to shed light, provide information and extend encouragement to others out there that are struggling with this disease of Multiple Sclerosis. I still remember the exact day……a few months into my early diagnosis….with my original doctor…she was a very good doctor. She was caring, smart and always looking for new treatments as I was not responding well to different shots and kept having flare after flare. But I was determined to get back in the classroom….so she kept signing my medical leave and I kept believing that I was going to eventually find my way back to my desk. But, after much trial and error, numerous therapy and continuous trepidation I sat in an exam room as she walked in with a handful of papers. She didn’t start the exam with her normal zest and optimism…she began by saying “Stephanie, I want you to hear me out when I show you something.” As she went through the papers that she had previously filled out I am not sure that I really heard what she said…..I am quite certain all I could hear was my heart beating in my ears and my stomach had moved up into my throat. The papers were my medical disability. What I do remember from that day was the tears in her eyes as she was going through all of the paperwork. I had no tears…just the feeling in my throat that my stomach had made its way up to the back of my mouth. I remember the feeling the cold metal of my walker on my hands and using it to get up, but I don’t remember getting to the elevator or even to the car. But I do remember the feeling of absence….absence and void of everything. I wasn’t sure of much else for the next few days, but emptiness. I am pretty sure I just went through the motions of the tasks at hand…or at least the best I could. Flash forward to now….I think in some way I am still teaching. I do my best with learning about this disease….educating myself to understand all that is happening to me in hopes that I can educate others about Multiple Sclerosis. So today I feel empowered. I feel empowered by all of my loved ones for constantly supporting me and never allowing me to ever give up. All of their visits, phone calls, texts…..etc….they empower me. My current doctor and his support staff…..you empower me. My doctor never gives up. He is constantly looking for ways to support me in this journey or the next treatment to try on this journey. HE encouraged me to start this blog. HE felt like I had important things to say and share. HE felt like I could share various things that have worked for me and see if they might help someone else. HE empowered me to not stop teaching and sharing. Thank you for that doc. You are the best. We must always remember WE have a purpose and an opportunity to make a difference or touch a soul. Never give up on your message or purpose.
As I was waking up this morning….I did not want to get up. The dogs were needing to go out to potty and my hubby would soon need breakfast. So I laid there trying to get the energy to sit up on the edge of the bed…..so reluctantly I did. I always have to sit on the edge of the bed for a few minutes so I can attempt to take on my painful and tingling numbness in my feet. I could hear my hubby open the front door as the two little ones (Lettie and Tucker) bolted out the doorway to do their morning business and I could hear him slowly coaxing “our old man” a.k.a Wilson to get on out the door. Then I heard him turn on the news and start messing with the fireplace. His next step would be to walk into the kitchen and turn on the keurig for me……I know this because he does this for me every morning. He is such a sweetheart….even though he would say it is no big deal. So I smiled and hauled my rear out of bed and down the steps to start working on breakfast for him and get his lunch packed. I really didn’t have much desire or energy to do much more than just curl up on the couch with the dogs and a cup of coffee as I soaked up the warmness of the roaring fire. But as I went to my kitchen window I saw a beautiful sunrise over the field in our backyard. For me that sunrise was a message from God to be thankful for it’s beauty, to be thankful for this day and to tackle as much as I could today. As I was making a sandwich for my hubby….to take with him on the semi…I was reminded of how a few short years ago I couldn’t do this simple task very good at all. Then I got to thinking of the day I arrived in a rehab facility in St. Louis….the best neurological rehab in the world as far as I am concerned. I had just had the biggest flare from my MS that I have ever had. This lesion was across my brain stem….so everything….EVERYTHING was affected. I had to learn to walk again with no walker, fine and gross motor skills were GROSS…..and speech wasn’t at it’s best. I had been to therapy before but it was always out-patient….several times. But this time was different. My deficits were numerous and I wasn’t going home this time. I put on a brave face as I prepared to go from the hospital to rehab….but I was low and I felt like I was never going to get out of this hole I was in. My husband had to leave on a long job and I wouldn’t see him for quite awhile. My kids were going home with my parents (saints) and I wouldn’t be there. I wouldn’t be there to do their laundry, help with their homework, cook their meals, comb my daughter’s hair, wake them up for school, have meals with them and watch them still sleeping first thing in the morning before their feet hit the floor…..all the mom things. I wasn’t going to be there for them if they are hurt or upset. I would only get to see them on weekends when my wonderful parents packed them into their car and made the four hour trip up to St. Louis to visit. If I haven’t mentioned this before….my parents are saints. However, I know that I have…but it bears repeating…..my parents are saints. So as I was being transported over to the facility I started to panic. The kind of panic that leaves you feeling empty. Everything was settled into my room and everyone left……sadness set in. I remember trying to talk to my husband on the phone, but he was having trouble with his vehicle and had to be in Chicago as soon as possible. Or that is what I thought was why we didn’t talk long that evening. I later found out it was because he couldn’t understand me with my speech problems and was trying to not cry when he was on the phone with me. The next morning came after a restless night of tossing and turning. My breakfast arrived and I had to eat, take a shower, get dressed and get to the therapy room. Sounded easy enough….then I remembered….I CAN’T DO ANY OF THAT WITHOUT ASSISTANCE. I no longer had a catheter or IV as I was out of the hospital….but walking was a challenge and I had to call for a nurse to assist me with everything. Then she had to stay and help me with a shower and dressing…..I was thankful for her help…but I was so disappointed with my self, my abilities and my life. I then made the journey down the hallway. It looked like the longest hallway I have ever seen….however, we all know it wasn’t. Then the doors opened to a therapy room filled with other individuals….individuals that were also trying to gain their independence back. So my therapists started working with me and assessing what I could do and sadly what I couldn’t do. My morning was full with all of that and then came lunch. So…I journeyed back down that long hallway to my room with assistance. I ate and rested for a few minutes before the next therapist came for her turn with me…..then more assessments and start of more therapy. Then my final walk of the day back to my room. I was exhausted….dragging feet exhausted. I fell asleep during my supper that evening. Then my kiddos and parents called. They told me about their day. Actually….our daughter did most of the talking. If you know her…..then you know what I am talking about. She gets her gift of gab from her momma. Our son shared his version of his day…short and sweet and then I talked to my parents about upcoming sports practices, gymnastics, tutoring and anything else they had going on. Then our goodbyes and shortly after that phone call came a call from my hubby and then silence. The TV was playing in the background….but the silence was deafening. So, I decided to call the nurse….brush my teeth, wash my face and go to bed. This was about 7:00 p.m. So I blindly watched TV as the tears trickled down my cheeks. I didn’t have the strength or ‘want to’ to wipe them from my face. I wanted to wallow….wallow in my sadness….wallow in my disease….wallow in the fact that my life wasn’t anything that it used to be. This went on a couple of days…..then I got a roommate. This sweet lady was 93, a retired teacher, a twin and had had a stroke. As the days unfolded we discovered that we had things in common and then many things that we could learn from each other. She lived on her own and had a swimming pool that she swam in every day until the weather got too cold. Then she would go to the senior center for her daily swims. She had a colored turban for every little outfit she wore. Quite the fashionable little lady. She had the sweetest voice and smile. I often wander about her….if she has passed on or still alive and feisty as ever. In my mind I am going to chose the latter. Then came my first visit from home…..kids and parents. What a wonderful day that was. I was so tired, but it was so good to see my kids, smell them and look at their sweet faces. I remember that next morning…walking into the therapy room…still feeling sorry for myself. That’s when I came face to face with a defining moment…..to my left was a patient that was learning to walk without a leg….to my right was a young man in a wheelchair….completely paralyzed from the neck down…..painting…..PAINTING with a brush he held in his mouth. I was hit with what felt like not a ton of bricks but quite honestly 10 tons. I felt the tears welling up in my eyes and the tightness in my throat hurt so bad from trying not to cry that I couldn’t speak. I was so ashamed of myself. I had nothing to be sad and depressed about. I I know I was blessed. I know I had therapy that day…..but all I can remember is sitting in my room that evening and telling myself “Stephanie Suzanne…. get your big girl panties on, stop feeling sorry for yourself, get up in the morning and start doing your job…..kick ass in therapy and go home”. That is what happened. I got up and worked toward being able to not need assistance in the bathroom, showering and even walking down the long hallway to the therapy room (it wasn’t so long after all). When I was done with therapy I all but crawled to my room at night and continued to do some of the therapy that I did down in the therapy room….or at least some version of therapy continued. I was going to show improvement…..end of story. Another week came and went….another weekend visit from home came and went and I was DETERMINED that I was going home as soon as humanly possible. Strides continued to be made and goals were achieved. Then I started the preparation for going home. I was ecstatic. I had to cook and bake in their kitchen area to prove that I would be able to do the same when I got home. Then came the field trip to a restaurant. This is the first time I had been outside that facility in weeks. I was excited, because if I passed this test I WAS GOING HOME!!!!! Not only did we walk to the restaurant, but we also had to handle ordering and carrying our order to our table, then eat and turn around and walk back to the facility. I DID IT. Thank you Lord in Heaven for the strength and wherewithal. I could hardly sleep the next couple of nights because I knew when my parents and children arrived I was going “to blow this popsicle stand”!!!! I thank God that I was fortunate enough to have this facility, countless therapies, my dear therapists, staff and wonderful roommate. I am also thankful that I had love and support of all of my family, friends and medical staff that never let me give up. However bad life may seem, there is always something you can do and succeed at. “Where there is life, there is hope.” – Desmond Tutu
“Keep your face always toward the sunshine – and shadows will fall behind you.” – Walt Whitman
I have honestly not known what to say the last few days, because everything gong on in our country is sad. Amidst all the pandemic and fall out from that…we now have such unrest in our nation based around politics. I am not going to talk about who is Republican or Democrat….that ranks right up there with money and religion. My momma and daddy taught me to never question someone’s politics, religion and money. Although…as a human that can be very hard at times. I am so sad for our nation right now. I am sad for many reasons….but I don’t do well with confrontation and unrest. I never have. I do believe in right and wrong. Although each person’s interpretation of what is right and what is wrong are all different. I believe there is nothing wrong with that….even if I don’t agree with them. I have been so saddened by what has happened in our nation’s Capital. All I will say is that it is sad that the group of people that broke into the Capital building felt that was the only way for their voice to be heard. No matter what side of the aisle you are on or if you straddle both sides…this is sad. As a child my parents would always take my brothers and I on a educational family trip every few years. These trips were always somewhere poignant and meaningful in our nation’s history. We have visited Lincoln’s home, Gettysburg, Monticello (Thomas Jefferson’s home), Arlington Cemetery, the Eternal Flame of John F. Kennedy’s resting place, Mount Vernon (George Washington’s home), the Capital, White House, driving by the hotel where the Watergate scandal went down and the World Trade Center in New York City….which sadly is there no more. There were many other places that we visited. I am not listing these places to show off or be pretentious. But my parents worked their rears off and saved every penny they could to be able to take these trips with their kids. My momma would spend days making lists of what to take and what to cook to bring along with us. Yes….my momma would fry chicken and gather lunch meat, bread, chips, cereal and bake cookies is preparation for our trip. We stopped at roadside parks to eat and take a break from being cramped in our fashionable station wagon with wood grain panels. It had an 8 track tape player and John Denver singing in the background is the music I remember the most. Momma and daddy would do everything that they could to stretch the money as far as it could go. Momma studied all that she could on how much money we would need to get into every museum or monument that was on the list. I was generally always sandwiched in the middle of my older and younger brother. I am certain it was because I was always trying to be the ‘peace keeper’. But we did take turns occasionally with the coveted window seats. When we would first start the trips we were packed in like sardines and as the trip progressed more and more room opened up as we ate all the packed food. My daddy was the driver…or at least that is what I remember. I also remember that momma had the maps out and used them methodically. There were times that we might have gotten lost….but daddy all but refused to stop and ask for directions. It is worth a chuckle as I think back to those times….but it wasn’t funny at all at the time. But….back to my original thought. My parents took such pride in being able to take their kids on these trips….many of which would not be as appreciated then as they are now. My parents taught us to be proud of our country and to be respectful of our nation. Then in turn I taught my own children to love their country and to be appreciative of the freedoms that they have been given. My granddaddy (Peepaw) on my momma’s side, was big on history. I have such fond memories of listening to him talk with all of us about history, politics or world news….always around the dinner table….long after the food had been cleared. Sometimes, there would be debates and a voicing of opinions…but we always allowed everyone’s voice to be heard. I wish all of this craziness was just that simple. If you listen only to those with whom you already agree, there’s only so much you can learn. Take the time and effort to consider other points of view. Often you can learn from those with whom you disagree. If you respect them enough to listen and truly consider what they have to say. You can find the value in the thinking and opinions of others without compromising your own convictions. Each person with whom you interact with has a unique perspective. In that perspective is a golden treasure just waiting to be uncovered. Anyone who has an opinion can perpetuate a disagreement, but what does that accomplish? Rather that looking for a reason to disagree…..look for the value in all the differing points of view which you encounter.
“STRENGTH lies in differences…not in similarities”
“You were put on this earth to achieve your greatest self, to live out your purpose, and to do it courageously.”
For as long as I can remember I always wanted to teach. I come from a long line of great teachers. Many of my family, that have passed… and many that are still on this earth are teachers. I remember the endless nights in college when I would have to stay up half the night studying, composing a paper on educational philosophy or construct hundreds and hundreds of file folder games to take with me to my job interviews (non of which were looked at). Many thanks to my family for cutting out, coloring, gluing and staying up with me. That’s love and devotion…thank you to each of you. I worked through college so my study time was normally at night which turned into some very late nights…..tears…..exhaustion…..then encouragement from my beloved parents and the knowledge that I was going to get to be a TEACHER when this was all over. But I made it….we made it. Graduation day came in May of 1996 and I was officially a teacher. Or at least on paper…..I had the diploma. This does NOT make a teacher. My career of teaching began that fall as I was teaching those kiddos….they were in actuality teaching me just as much. I worked each day with children that learned differently than others. I had to think outside the box to help them learn the curriculum. There were some days that went fairly smooth like butter and then others that made you feel like you battled all day to get across a mine field without detonating anything. Teaching is embedded in my heart and soul. I am quite certain my blood runs ABC’s and 123’s. So, when MULTIPLE SCLEROSIS forced my hand to retire from my dream…I was gutted. I remember the months of after my diagnosis….flare after flare and treatment after treatment in hopes that I could get strong enough to go back to my classroom and surround myself with all of those blessed children. That of course did not happen. I remember the letter that I wrote to my administrator, school board, etc ……I remember the night I read it before all of them at a meeting. My parents had driven me there as I couldn’t drive yet and my husband was gone away at work. As I stood in front of them….with the help of my parents….my hands began to shake…but I began reading what I had prepared. My voice was trembling, but I knew that I had to do this..not out of respect for just my school board members and administrations, but for all of my colleagues and kiddos that had helped/allowed me to teach…then also out of respect for my own self. I still have this letter and I reread it just now. ” This has been my dream job. I came to work every day praying that the lessons or skills that were planned for the day were the ones that the students could best learn from…but left most each day with having learned something great from one of them instead. I have worn the school colors with great pride and dignity and am quite certain I could wear a FV t-shirt for a month straight and not run out.” Then it concluded with “having said all of that…it is with great sadness and a heavy heart that I am officially retiring.” Great sadness and heavy heart doesn’t even describe what I went through the following weeks and months. I was so overwhelmed with grief and sadness that I didn’t feel I could even breath. Not only was I dealing with not teaching anymore…I was dealing with not being able to parent my kiddos as good as I thought I needed to….be a good wife like I wanted to….and even being a good friend and daughter. I had some fairly dark times during the following days. I also had to figure out what this disease was, how to treat it, what worked for me and what didn’t and how to tackle the changes in my life that it brought. I spent the next few months trying and failing with various disease modifying drugs…..mostly shots. Shots in the muscle once a week, then shots every other day under the skin. Shots that I had to give myself and I am quite certain that they contained battery acid. The medications burned pretty bad going in and then left a beautiful bruise at the sight. Those bruises I tried to hide from my husband and kiddos, because they looked hideous and like someone had beaten the tar out of me. I remember early on staring at myself in the bathroom. I didn’t know that person. My upper thighs and tummy were covered with splotches in various shades of blue and green. Most of my days were spent in bed. My sweet parents had recently moved into town from the country and lived a few streets over…..thank the Lord for that. At the time my husband was working on the road to afford the much needed insurance I so desperately needed. I thank God for him every single day. My parents came every day and took the kids to school and then picked them up and brought them home. Every day after my momma got off work she would come by the house and see what laundry, housework, food and whatever else needed to be done. Thank you to my momma and daddy for their unwavering love and devotion to their family. Most days I would get kids handed off to my daddy, close the door, turn off the lights and go to bed. I would stay there wallowing in my own self pity and doubt until it was time for the kids to be home and my parents to be there. This pattern continued for quite a while. Then a few months went by without a flare and I thought….let’s get out of your funk Stephanie. So I was slowly able to take back some of the household chores as well as doing a few things at school. Meaning attending kiddos games and activities. It was during this time that I reconnected with my now dear friend…Stephanie. Yes….she has the same first name as myself. Our daughters are the same age and were in school together and are friends. She and I developed a pretty tight bond that I am certain will last a lifetime. She is a friend that has been there through the good, bad and ugly and still loves me. She is full of love and encouragement. She and her family have become our family. We love them all endlessly. She has sit with me in a hospital room while undergoing treatment, brought me lunch, treats and taken me to the store and any other place I needed to go. Her love is unconditional and treasured. She has even supported this disease in more ways than one….privately and publicly. I love you Stephanie and family. My kids stepped up……boy did they step up. They did so many things to help me and I am quite certain there are many things that I don’t know about and may never. God surely blessed us with these two. My hubby continues to amaze me with all his love and support. He works on the road mostly and works hard. He doesn’t like being gone all the time and is sad because he misses alot. But he provides a beautiful life for us. I am so blessed with him as well. I can’t tell you how happy I am that he has been able to be home with me this past year. I am thankful for all he does. So…to wrap up what my original thought was…teaching. I realize that I am no longer a traditional teacher that goes into a classroom with little kiddos and stand before them to help them learn a new skill or lesson. But, I am a woman with a disease that I can teach others out there about. In creating this blog I feel like on some level…I am still teaching. I also get to learn more about this disease everyday and pass that knowledge along to family, friends and all of those out there reading this. So…in a sense….I AM STILL TEACHING…..it’s just modified in a way that fits my life currently. Don’t give up on your dreams. Always strive to be the best version of yourself…..even if it has to be adjusted from our original goals and dreams.
