My Multiple Sclerosis Life Journey

Today is our granddog’s birthday. HAPPY 1st BIRTHDAY Cinch!!!! Nan and Pop Pop love you. This little booger came into our lives last spring. Our daughter and her sweetheart got him from our amazing neighbor and friend. He is absolutely a treat for all of us. Since they lived with us when they first moved back to town we really got to bond with him and he indeed became a part of our lives and hearts. Cinch is a Miniature Australian Shepherd…he is extremely intelligent and catches on quick to anything that the kids are trying to teach him. This little lovely even watches TV…..mostly cartoons. I am sure he enjoys the bright colors and animation….as well as the music. He will sit and watch them like he truly understands what is happening. He is so full of energy… so it has been a time of learning for us as all since we have the miniature dachshunds. They have energy in spurts….but their favorite activity tends to be napping, napping and of course napping…..and occasional treats. When you come to live or visit our house you tend to get spoiled…..REALLY spoiled. I am not ashamed of that nor do I feel the need to apologize for it either. We love our four-legged ‘humans’ that live with us or visit. They bring such joy and comfort to our lives. So this evening we will see our granddog, daughter, her sweetheart and our son for supper to celebrate his very first birthday. Any excuse to see all of them is a good time for me. Especially since I have been so isolated from the world. This of course is what must happen to stay as safe and healthy as I possibly can. There are honestly times that I feel these four walls of our house are closing in on me. Most days I am able to keep the ‘bigger picture’ in focus…..but some days it indeed gets a little hard to stay focused on that. The old saying “you don’t know what you’ve got until it’s gone” is so true in this instance. My freedom to jump in my truck and run to the store, or junk store or even drive to see my parents or children is gone. Not gone forever…but temporarily. Darn Covid and chemo. Bigger picture…..bigger picture Stephanie. I have so much to be grateful for and I am. However, I do miss my freedom. I do occasionally get out of the house and ride in our semi or dump truck. I don’t ever get out anywhere, but I can enjoy the countryside from time to time. I also make a 3 1/2 – 4 hour trek to my doctor’s appointments in St. Louis. Yes…I know that is a loooong drive, but it is worth it!!! My neurologist and his staff and the BEST!!!!! They have always been patient, caring, helpful and understanding with not only myself, but also my husband, mother and children who take turns at this trip. They generally take most of the day to get there, go through the appointment, and then get home. Some of the appointments go quickly and smoothly…others do take longer and I am completely worn out for days afterwards. I am thankful for my medical staff…my family….good vehicles to make it there…and the blessed insurance that we currently possess. I told you before….I can go off on a tangent and totally get sidetracked on my original thought….prime example. I am not sure if this is a MS thing, age thing, woman thing or a stay-at-home wife thing. But it tends to happen……ALL THE TIME. Back to my original thought….Cinch’s 1st Birthday. Thank you Cinch for coming into our lives and bringing so much energy, sweetness and love our way. You are truly a blessing and I am looking forward to seeing you this evening.

“Obstacles don’t have to stop you, if you run into a wall, don’t turn around and give up. Find out how to climb it, go through it, or work around it.” – Michael Jordan

HAPPY NEW YEAR! I hope this post finds you all safe and well. I have been a little MIA on here as I took the last few days to “binge watch” Las Vegas on the E! channel. After two days of constant watching, we (hubby and I) decided it was best just to record it and watch later…it continues today and I must get off the couch in an attempt to rejoin the world. Or as much as I can. Today is a beautiful day….the sun is SHINING. So, for me that means I am not in as much pain today. When it is overcast, cloudy, humid or raining I am in P…A…I…N. This is the kind of pain that tends to be unrelenting and continuous. I never have been able to explain exactly where the pain is…but it is there and determined to cross my eyes before I even open them for the day. For those of you out there with this kind of pain……you know what I am talking about. For that I applaud you, I bow down to you (if I have help getting up) and cover the mud puddle of in front with my own coat for you to walk over. Some of the pain is known as nerve burning. For those of you that wonder what this is…let me explain. A nerve has a covering (myelin sheath) that is no longer there. So your nerve is exposed and BURNS…BURNS…BURNS. So it is like an electrical cord that has the plastic coating missing (for a visual). The nerves sit in your body and are exposed and burn. Sometimes it feels like a blowtorch as been inserted into your derriere and lit to a slow and constant burn that never goes out. This burning never goes away…it just lessens on days that are sunnier that others. I have been given the prescriptions for Gabapentin and Lyrica. Neither of which really worked and I really don’t like taking medications if they are not helping. My doctor has been great with supporting me in my quest to stay as unmedicated as I possibly can. So I have tried many holistic and natural approaches to this particular ailment and I have managed to come up with a drink that does help. At least for me it does…..remember I am no doctor and do not claim to be. I simply have tried different approaches to different MS ailments in hopes to find something that helps me. The little concoction that I drink is as follows: 1 cup of hot water, 1 teaspoon ground ginger, 1/2 teaspoon turmeric, 1 tablespoon raw honey and 1 tablespoon of apple cider vinegar (try to get the kind with the “mothers” in it). I normally put all the ingredients into a coffee cup except for the water and use my Keurig for the hot water component. I then stir and sip two times a day. I am certain that you can drink this more than twice a day, but for me I tend to stick with the twice. I would think that you could drink this cold as well, but the hot water seems to work better with dissolving the spices. I encourage you to try this and even tweek it for yourself. You may find adding more of something, less or something or adding/deleting something altogether is better. Remember…..what works for one of us may not work for the other. Another thing that I have tried that seems to have helped me is omitting as much sugar and caffeine from my diet as possible. Those two things have seemed to help me as well. I know that those two things are very high on many people’s lists of “must haves”. I still have them from time to time……but I can tell it when I do. The sugar has been almost impossible to avoid during the holidays and I am feeling it. So, I will do my best to cut back down on this scrumptious intake. Another pain is in my feet and hands, but mostly in my feet. It is a numb pain???? I know that sounds weird….if you have pain then how can it be numb? I can’t explain it…..just as I can’t explain 99% of other things that happen with this disease. I just know the neuropathy in my feet is active most days. When the weather is bad or I am tired…then the numb hurt in my feet and hands is worse. Some mornings I have to sit on the edge of my bed in preparation for when my feet hit the floor first thing. Oh yea….it hurts in the morning too. When I first touch the floor with my poor feet I feel like I am stepping on hundreds of tiny little needles that will be followed by the numbness and then followed by the needles and then….well you get the idea. I also have the “MS hug”. That sounds sweet enough. I mean….who doesn’t like a hug? Well…this is a different kind of hug. This is a hug around your waist, or chest or even both that is so tight and painful sometimes that you can’t breath. It has something to do with the messages from your nerves that are blocked or disrupted by the damage caused by MS. It can feel very overwhelming at times. Sometimes it can feel like all of the air is leaving your body. It is very hard not to panic. But, I have found that if I close my eyes and focus on inhaling and exhaling slowly that the tightness will pass. The pain doesn’t really dissipate, but at least the tightness gets better. It kind of feels like what a heart attack may feel like (or what I imagine). Thank you dear Jesus for not allowing that to happen. Then I have dysesthesia. This means abnormal sensations. As if I need any other reason to feel different and not normal. This is typically painful burning, prickling or aching feeling all over the body. I am pretty sure this goes hand-in-hand with the nerve burning. As I read back over all that I have typed today it appears that I might be ranting or complaining. But, in all actuality I don’t feel like it is meant to be such. I am trying to simply share my symptoms and let others out there know they don’t have to suffer alone. There are many of us out here in the world going through many things that you may be going through. Keep your faith in God, yourself or loved ones. Lean on them and reach out for help and understanding in this journey through life and living with Multiple Sclerosis. More often than not…..you hopefully will find a hand that is reaching right back.

NOTHING is impossible. The word itself says….”I’M POSSIBLE”….Audrey Hepburn

How do you say goodbye to a year like 2020. Well…..quite easily. Or so I thought. It has been a very rough year…not for just myself, but for my family…plus my dear friends, the United States and the entire world. But, there have indeed been some really amazing things that have come out of 2020. Our daughter graduated from college with a degree in cosmetology. Then Covid hit and jobs were at a standstill. So, she moved home with her sweetheart and lived in our basement. I loved it, because not only were they home, but my granddog, Cinch, came with the move. He is an absolute sweet little Man. Not to mention he and Tucker will spend hours running and playing. He tries to play with Wilson, but he is a senior dog and most of his blessed days are spent looking for his next treat and sleeping. He also “tries” to play with Lettie (our little female), however, the moment Cinch walks through Nan and Pop Pop’s door she puts herself in timeout and avoids him like the plague. Next came our son, my first born….spreading his wings. He decided to move to Florida in hopes to find more of life outside of our little town. However, moving in the midst of a global pandemic has serious negatives. Then right after his move our daughter and her sweetheart moved into their own place to start their lives together. I am so thankful it was just across town. With the pandemic going on starting her new career (dream job since she was about 4 years old) proved to be beyond difficult and virtually not going to happen. Especially since many people aren’t even leaving their houses or have the money to visit a salon. So many people have either lost their jobs or have been furloughed. So many people across the land have had to turn to unemployment benefits just to keep their heads above water. So many people are losing everything. This year has just been so disheartening to watch. So…..in true fashion, my kick-ass daughter picked herself up by her bootstraps….put her “big girl panties” on and went out and found another job. This job was supposed to be part time. Funny how God works, because this job has now turned into a full time job and she is actually running the boutique on her own. She loves this job and is proud of the job she is doing. So are her daddy and I. I mean what little girl doesn’t dream of getting to play dress up every day? Next came the silence in the house. It was deafening. However, I filled my days with that wonderful little trial of Mavenclad….aka chemo pill. I read all the articles that I could on the process and my doctor was so helpful and knowledgeable as well. So, preparations began for the trial to start. I knew what that basic game plan was and tried to act tough and prepare everyone around me for what was going to take place. Or in hindsight…..what I imagined would take place. First of all…we have a GLOBAL PANDEMIC going on. So, that meant waiting and waiting and waiting until my doctor and his team could figure out how to safely navigate this trial while all the craziness in the world was going on. This is when I met my dear clinical coordinator for this trial. KUDDOS to my doctor for hiring this little lady. I am quite certain there are so many stars in her crown for everything she has done for me and countless others. She organizes everything and then keeps all of us organized and on top of the task at hand. God knew what he was doing there….SHE IS AWESOME. I had to first have a TON of blood drawn for endless labs. Then came the lumbar puncture…..sounds easy enough…right??? How diluted was I??? For science and helping myself, others and future MS warriors….right? The sweetest and littlest doctor I had ever met was tasked with this job. I have had one of these many years ago when I was in the throes of trying to determine what was going on with my health (another story I will probably share in the future). I remember being scared….I mean there is this SHARP needle going near your spinal chord to the fluid around that sacred place. I remember it was very uncomfortable….. and did I mention SCARY? Well, in the room was myself, the doctor and the clinical coordinator. My husband was left in the exam room to wonder what they were doing with me in the procedure room. As I was positioned into the chair and my back exposed I remember feeling so very vulnerable. It must have been written all over my face as my clinical coordinator kept checking on me as the betadine wash was being put all over my lower back. The doctor then began with the lidocaine for numbing. Then came the pressure of the barbed needle…or that is what I remember she said it was. She pushed and analyzed…pushed some more and analyzed some more…..then pain. The kind of pain that peels back your eyelids. Or maybe it was a little pain and fear. The kind of fear that takes your breath and makes you pray and pray hard for this to end soon. All of this was going through my mind and I was not to move even slightly…..for fear of being paralyzed. So then she removed that needle and tried a different needle. I believe I distinctly remember her saying this was a smooth needle. This one worked better and the procedure was working as it should and the spinal fluid was filling the little vials. As soon as the procedure was done and I was dressed they brought my husband into the room to comfort me and sit with me for the hour that I had to lay down before heading home. We visited a little while and I tried not to cry because I wanted to stay strong. But in reality I wanted to burst into tears and fall into his arms. Next came the doctor and coordinator back into the room with a large paper gift bag…haha. Inside that bag was two very large presents (boxes) that held my chemo pills. They then proceeded to tell me the procedures to follow to take these little pills. They were gloved up, my husband was instructed to not touch and as soon as I take them I am to wash my hands thoroughly. BUT this stuff that we can’t really touch needs to go into my body? I mean…..it’s a pill. How bad can it be? Well I soon found out….first was loss of appetite, then came nausea, followed by dreaded diarrhea (sorry for that image). I had a few weeks of this just to begin the next week of pills the following month. The next month went the same as the first. Of course anything that went into my body left as quickly as it came. EVERYTHING tasted like metal. I avoided food or anything that remotely resembled food. Water….water….water. But it still tasted like metal. My hubby and I made several trips to the doctor for checkups and bloodwork. The doctor’s visits were made under the most stringent of care and safety. We were masked up, escorted in the side door and tended to without seeing a single sole for the most part. Plus, I had developed huge black circles under my eyes from my malnutritioned state that I hoped no one saw me. But in looking back….honestly what does that matter? It is part of this journey. The next few weeks came and went with alot of sleeping, naps and sleeping. I also spent time wondering if I was going to make it. I was advised to stay home because of my dying immune system and Covid. So I have felt very lonely and down many days. I did look forward to my phone calls from our daughter and son. I am thankful for these calls. My parents constantly checked on me as well as my dear friends and family members. They all get praise for lightening up some of these dark days. Next came a phone call from my son telling me he was moving home. I was elated and was so thrilled. I worried about his long drive and I knew he wanted more from his move to Florida….but moving in a pandemic doesn’t bode well. So, he is now living in our basement. He came home and stayed isolated down there for days until he knew it was safe to be around me. We had a wedding…..in the family that is. In November my beautiful niece got married to her prince. Not a frog, but a prince of a guy. He is her perfect fit. He is a blessed addition to the family. But we missed it. I have never missed anything for her. I cried, cursed, cried and then found my “big girl panties” and remembered that this sacrifice will allow me to be around for all the other memories that the future will hold. Our nephew, her brother, got engaged as well. That wedding is in this coming year. So Covid and chemo…..cut me a break. But, if we can’t attend this event I will survive. Although I am sure to carry on like I won’t. As discussed in my previous post the holidays this year have been tough. I haven’t had our house filled with laughter and conversations as we always have from all of our loved ones. My dear parents have to be careful as well. They are of the age that is more susceptible to catch Covid as well as my daddy has had several surgeries this year and has had to fight his way back to his own health. My superhero momma gets the privilege of working from home…..and I must say that she is still kicking ass and taking names. She blows me away. I can’t remember the last time I was able to sit down in their house and have a long conversation about anything…everything….and nothing at all. But I will keep my head up the best I can and remember that if we are safe now then we will have many more times to get together in the future….God willing. As the hours of this year are on their final countdown I must remember all the things in my life to be thankful for…..all the many loved ones in my life that are still here…..all the loved ones that aren’t here in person, but are never forgotten, because they have helped mold and enrich my life in millions of ways, my ENTIRE medical team……what a blessing you are in my life, my family for their constant live, devotion, support and occasional kick in the ass they have provided me with this year and every year, to my loving children…thank you so much, for blessing me every day, to those four-legged children who are constantly by my side….thank you, then finally…to my hubby….God has truly blessed me with you. Thank you for loving me, holding my hand and supporting me on this journey. I truly feel like as rough as this year has been for me I also am beyond blessed for all that I have in my life. I hope you all have a very safe evening and HAPPY NEW YEAR. Bring on 2021!!!

Where to begin…… I am new to this world of blogging and sharing openly about my life and health journey. So these first few blogs may be sporadic and unorganized, but hey….we all have to start somewhere. First of all, my goal in writing this blog is to share this crazy journey I have been on for the last 10+ years. I want to be as transparent as I can and I believe that in doing so, I may gain better insight even into my own self and might even find further healing and truth in my own story. Christmas 2020 was probably the worst Christmas that I can remember in all of my 46 years. Yes….even harder than the first Christmas after my divorce many years ago from the kiddos’ father. That was the Christmas I had only $50 to spend on them and felt so ashamed I couldn’t do more. But I was giving them a roof over their tiny heads, warm beds for them to sleep in (even though they shared a room…..not that that is a bad thing at all) and putting food on the table for them to eat. All of those were not bad things they were just different than they had been used to. They were different than we had all been used to. However, that is for another time and discussion. Fast forward to 2020, per my Neurologist’s request (ORDER) we had no family meals or get-togethers. I love my Neurologist. In fact, my whole family loves him… as well as the rest of the staff that work with him. We have the utmost faith in this man (angel). So, when he said “no holidays” we then knew as a family that this would be a terribly hard year. As you all know 2020 has been a year of many sacrifices. Covid-19 has set up camp in world and doesn’t seem to be offering any reprieve. If Covid wasn’t scary enough to those of us with a compromised immune system I have had the distinct pleasure of adding chemo into the mix this year. I found out March 3rd of this year that my disease modifying drug I had been on for several years was no longer working its magic. By this I mean I had several new lesions. Which to my disappointment, my family, friends and support team knew that meant the search for the next step was to be decided on. Luckily, my doctor was one step (if not many) ahead of me. We talked about the options and he gave me literature on the two avenues he wanted to explore. He didn’t want a decision that day. Instead, he wanted me to go home and discuss is with my family. So on the way home I read through all the literature and discussed things with my son. He had taken me to the doctor that day as my husband was away in California working. As I read through each different drug I soon decided that the trial for Mavenclad would be my next step as long as everyone else agreed. Mavenclad is an oral chemo pill. I would take two pills a day for one week and then repeat that the next month. This I thought would be easy enough. I mean how hard is it to swallow a pill?? Wrong…..boy oh boy how wrong was I. But I will fill you in on that process in another post. As I said previously, I may have random or sporadic moments in my thought process as I type. For that I apologize. Where was I????? Oh yes, Christmas. So, it looked ALOT different at our house this year. As I am sure most Christmas’s were for many this year. I have become accustomed to not shopping in malls and public for the most part because normally the flu is out and about and so most winters are spent staying away from crowds. I do this to avoid getting sick and exposing myself to an ailment that might be harder to get over as opposed to people with normal immune systems. So the shopping from home, online at Amazon, has become quite the norm. But let’s face it….who wouldn’t rather sit at home in comfy pants instead of going out into wild traffic, crowded crazy malls, rude people, no sizes or stores sold out of that one item you wanted? Exactly….no one I know of. So, shopping wasn’t out of the norm for me this year. But, Christmas Eve came….our house was not filled with my beautiful mother-in-law, sister and brother-in-law and niece and nephew and their significant others. Instead, we had to forego our tradition of eating junk food with them, watching Elf or any other Christmas movie that happened to be on. We instead had a quiet dinner with our son, daughter and her sweetheart. We had to do this on Christmas Eve because on Christmas day our daughter would be going with her sweetheart to his family and we couldn’t chance seeing them afterwards because of my compromised immune system. So it would be another 10-14 until I can see those two again. We couldn’t celebrate with my parents or my brother and his family. So Christmas day I cried. I shook it off and tried to find my gratefulness. I had to remember that God had blessed me with another day I could be alive. I had plenty of food. I had a beautiful house to live in and a nice warm fireplace to warm up in front of. So…then I became ashamed of feeling sorry for myself. Next, I talked on the phone with my parents and cried with them. I always watch the Christmas Parade, because my dear Pepaw would always expect us to all say we did when he asked us at Christmas dinner. Even though he has been gone since 2007. So the melancholy continued and I sat looking at our Christmas tree for most of the day….while filtered noise filled the room from our television. Our dogs of course could feel my sadness and stuck very close in their way of consoling me. They always know just when to snuggle closer. Thank you Lord in Heaven for creating these creatures. I had plenty of time to think that day about things and to think about creating this blog. My dear Doctor has continuously encouraged my to start one. As well as my family. He keeps telling me I have lots of information and stories to tell that might be helpful to others. So here I sit typing my very first entry. I took a couple of days and tried to research how to start a blog and am trying my best to take a stab at it. There is so much I don’t understand how to do on and with computers, so please be patient with me as I learn.