Living life with a chronic illness is definitely not easy. But I do my best to push through all the barriers this illness puts in front of me! In my heart and mind, I believe maintaining a positive outlook on all situations in life will carry us through to much better times! I hope you find the information that I provide both helpful and inspirational!
After work yesterday I went to have my dreaded MRI. I have been dreading getting another MRI for about three years, but finally did not have a choice and had to get it. I already mentioned that the MRI is insanely expensive because of our ridiculous healthcare in the United States. I think I have had an issue with the healthcare issue for a long time because we are the ONLY developed country that does not have “free healthcare”. It seems that many Americans believe that free healthcare is wrong, and I cannot understand their logic. I have heard from many people living in countries that do have free healthcare and they love it.
The complaint I have heard about free healthcare is you have to wait a long time before seeing a specialist or having a procedure, such as an MRI. The thought process is ludicrous and typically the thoughts of someone that believes what the politicians are saying, which is mostly lies.
Anyways, my MRI was not that bad. It was EXCEPTIONALLY long and LOUD. One of the images felt more like a small earthquake because it felt like the entire machine was shaking vigorously. The other images had annoying sounds that were way too loud. I can say the two radiology techs were nice and told me how long each image would take. Midway through the MRI, they pulled me out to add the contrast, and at that time, I told them that one of my hands and both feet and my back were numb. They laughed and said it was probably because I was trying too hard to stay still, which was true, but I did not want to be there any longer than I had to for images to be taken again. I did ask one of the techs if anyone had ever told him that he caused headaches with all the loud noises, he just laughed and said he had heard that a few times before!
I am sure many of you have had an MRI before and know how not comfortable it is. Did you ever notice the moment you are in the machine and told to stay still, everything itches! My hair kept blowing in my face and making my nose itch, and almost every part of my body itched as well. I think it is just because I was told to stay still, and I am not good at being still for long periods. The good news is, I was told I did well, and all images were taken the way they needed to be.
I do know that I am not excited about hearing the results and would prefer my specialist just tell my husband. I figure he would be able to give me the news better if it is not good than the doctor could. I tend to think that most neurologists have the personality of a fly if that! I did have a neurologist previously that was amazing and truly kind, but he understood me and my personality because I reminded him of his daughter. I cannot begin to say how much I miss him! I think I like the Nurse Practitioner at my new specialist office better than the actual doctor, but that is how I normally am.
I am glad the MRI is over and hopefully will not need to do it again for many years! I went about three years before this last one and hopefully can do that again! When I do know what the results of the MRI are, I will do a post about it and share the news, whether it is good or bad news. Let us just hope for the best!
Thank you for visiting my site today. I know I normally do “Tranquil Tuesday”, but felt it was better to tell you about the MRI experience. Overall, the MRI was not as awful as I was making it out to be, but it did cause a mild headache. I hope you are having a good week and staying as safe as you possibly can. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!
Happy Monday y’all! I hope you had a nice, relaxing, and safe weekend! Today is the start of a fresh week and a new month, so all we can do is enjoy it now! No one has ever said they love Monday mornings, but each Monday gives us the chance to start over again and keep trying to achieve our goals. I do not know about y’all, but I cannot believe it is already March. I mean seriously where did January and February go? I am not sad that February is over because it was a rather sad month for me and I hope March is not anywhere near as sad!
As we embark on this new week and month, I think we could all use a taste of motivation! It is never easy to say goodbye for now to the weekend, but we all need to try believing today and the rest of the week will be pleasant and full of opportunities! I hope you will find the quote I am sharing motivating and encouraging, but I would love the chance to read what you think of it! Of course, I think James Allen’s quote is beautiful and it motivated me to take on this new week with nothing but pure determination!
Now that it is March, I will be doing a few posts about Multiple Sclerosis because this is MS Awareness Month. I think most of you know that I have lived with Multiple Sclerosis for 20 very long years, but that I refuse to surrender to this unpredictable illness. It is safe to say that stubbornness is in my genes as everyone in my family is pretty unusual and strong-willed. With the combination of the personalities of everyone within my family tree, I am a triple threat of outlandish and distinctive traits, but I keep myself grounded, for the most part at least!
Thank you for visiting my site today! I hope you enjoyed the quote I shared and it helped motivate you to tackle this week with everything you can! Please always remember how strong and resilient y’all are and therefore, you can handle anything that comes your way. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!
Today, I am going to write about two different things. One topic is about today being three weeks since we lost our sweet little girl, Chloe. The second topic is the MRI I am being forced to get. Both topics are weighing heavily on my mind, so I need to write about them because that is how I cope with difficulties with life. The one thing that is and always will be a constant in our lives is challenging times. There is no way to avoid challenges, but we need to be able to address them head-on!
I think most of you already read my post about when we lost Chloe. I cannot believe it has already been three weeks since that precious little girl took her last breath. Even though this loss was extremely painful, and we are still struggling with losing her, we can find some comfort, and peace that we provided her with a wonderful life full of love. The Friday before Chloe passed, we had been informed by her doctor that she probably would not make it through the weekend. Of course, the offer was made we could have put her to sleep, but I am glad we decided not to, and she was able to pass in the comfort of her home and on my lap.
Tomorrow, after work on I am going to get an MRI (Magnetic Resonance Imaging). If I remember correctly, my last MRI was almost three years ago, and while I was dealing with a relapse. Of course, this type of testing is non-invasive and does not include any pain. I am sure most of you have had an MRI in the past, so you know they are uncomfortable, in part because they seem longer than they are, and you cannot move, or the image will need to be done again.
The images generated from an MRI enable doctors to see lesions in the CNS (Central Nervous System). Depending on the type of damage and the scan used, lesions will show up as white or dark spots. An MRI will show damaged areas called lesions, or plaques on the brain or spinal cord and can be used to monitor disease activity or progression.
An MRI with contrast dye can show MS disease activity by showing a pattern consistent with inflammation of active demyelinating lesions. Contrast dye is a substance injected into the vein and used to make certain types of lesions show clearer on the MRI scan. Demyelinating lesions are a kind of lesion that is either new or increasing in size due to demyelination, which is damage to the myelin covering certain nerves. The images obtained with contrast can also indicate areas of permanent damage that will appear as dark holes in the brain.
I have resisted getting another MRI for several years for a few reasons. One reason being, they are insanely expensive, even with insurance. The estimate for the MRI I am getting tomorrow was $2,700. The price does not make sense to me because I do have insurance and almost makes me wonder what the point of is paying for healthcare insurance when I still have an outrageous out-of-pocket for everything. I have said this several times before, but I will say it again, the United States has some of the worst healthcare in the world.
Another reason I have resisted the MRI is that the results do not matter, and I am not changing my MS medication. I feel confident saying the Gilenya is doing what it is supposed to with slowing the progression of my MS. Medications I have been on previously did not work near as well and it could have been because I was not taking them like I was supposed to. I hated doing the medications that involved giving myself shots, so with the Gilenya being oral, it is easier!
The final reason I have been stubborn about getting the MRI is because of COVID. I am still worried about going into the imagining place, but I will be wearing my mask and stay as safe as I can. I am logical enough to know the MRI is needed, but I am not thrilled about going tomorrow. I do not want to hear what the results are because they always make me cry and it is not worth the emotions or stress, so I will have the results shared with my husband.
I hope you are having a nice and safe weekend! I know y’all have busy lives, but I appreciate you taking the time to visit my site today and read what I have written. I look forward to reading your comments and promise to respond to all comments as quickly as I can. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!
On Saturday morning, with an incredibly special thank you to my wonderful husband, I was finally able to get the COVID vaccine. If I had waited for either my specialist or the governor of the state, I live in to get this vaccine, I am sure I would have been waiting until at least summer. I do understand the need for front line workers and elderly individuals to be among the first to get the vaccine. However, I also think people with a weak immune system should be able to get the vaccine as well. Truthfully, it is not just because I have a weak immune system but those with a weak immune system can become deathly ill with this virus. I guess in a sense it is a blessing this vaccine was created so quickly, but it is also awful there are so many people that will have to wait to get the vaccine because not enough were rolled out.
It typically takes 5-10 years to create a vaccine and yet the COVID vaccine was done in less than one year. I know I did just get the vaccine, but one of many reasons why I was so hesitant about getting the COVID vaccine was because it so fast. I was obviously concerned about the side effects it might have that they were unaware of. I do not think there were enough tests completed, but during this pandemic with so many people dying each day, I guess there were not many options.
We have all been living in fear for so many months and most of us have been staying at home to be safe. This past year has created the feeling of isolation, which can feel very lonely. Many of us missed out on celebrating the holidays with our family because of this virus. I do still believe that if everyone had followed the advice from experts in the beginning, things might have been better. There was a lot of misinformation being released from the government, which as y’all already know had me feeling terribly angry. It will not be a surprise to any of you that have been reading my posts during the Trump administration, but I think the way the pandemic was handled or rather not handled was all wrong.
I do passionately believe that if there had been someone else in charge in the beginning of the pandemic, things would have been handled faster and more efficiently. We were all told so many lies about the virus either not being that serious or that the virus was a hoax. Many people never thought anyone could put the lives of other human beings in danger, but that was not the situation. Unfortunately, the former president of the United States did not have any concerns about anyone but his own safely.
I know y’all are not reading this to hear about what I think of the former president or the ways this virus got so out of control, but I do want to let y’all know how my experience was getting the COVID vaccine. I am not going to lie to y’all I was very nervous. As I already said one of my biggest concerns was the possible side effects of a new vaccine. Another concern I had was any potential interactions with my MS medications. The Nurse Practitioner at my specialist’s office told me some of the other patients on Gilenya did already get the vaccine and did not have any side effects. I also called the manufacturer of Gilenya to find out if they heard of anyone taking this medication getting the vaccine and having a bad interaction, but with the vaccine being so new they did not have any information. I am also very aware that no two people will probably experience the medication, the vaccine or the two together the same way, but I had to cover all basis before I got the vaccine.
Before I even got the vaccine, I was already dealing with a nasty headache, but I think it may have been caused by stress and lack of sleep. After I got the vaccine on Saturday morning, my husband and I stopped to get some breakfast because I was so hungry. We just went through the drive-thru and took the food home to eat. My headache did not ease up and I was exhausted, but again, the night before I hardly slept at all. Overall, besides the fatigue and headache, I did experience body aches all weekend. To be completely transparent, I could not tell if the body aches were from the vaccine or the rainy weather we were expecting. On most days I do ache from head to toe, but the aches seemed much more intense.
Much to my surprise, I did not have any severe side effects from the vaccine and even have the second one scheduled for February 13 at 9:00 AM. I prefer to do things like this early in the day and when I have a day or so without having to work just in case, I end up not feeling well. I think another reason I was so terrified of the vaccine is because I never even got the normal flu shot because of possible negative interactions with my MS medicine.
My husband has already had his 2nd COVID vaccine and even after I do as well, we will continue to behave as if we did not get it. We will both continue to wear masks, social distance, and sanitize everything because we both feel that you can never be too safe. It is awful that thousands of people are still dying daily because of this virus and upsetting how many others still refuse to wear a mask. I will never understand why people cannot see the increased numbers of new cases and deaths, and still think a mask is too uncomfortable to wear. In my eyes, a little discomfort for a short amount of time is worth it if it will save lives!
I am not going to be one of those people that says you must get the vaccine because I think you need to be comfortable with this. Nothing I have said in this post is meant to be medical advice and I would still advise you to consult your physician before getting the vaccine. Yes, I think it will keep you safer, but even after getting the vaccine you can still get COVID. I was told if you have had the vaccine and get the virus, symptoms might not be as severe. Unfortunately, with this virus and the vaccine still being new, I do not think anyone really knows answers to be 100% true, but they are working with the information they do have.
I would like to thank you for taking the time to read my post today! I guess this topic can be controversial, but I did want to share my vaccine experience with y’all. I hope you enjoyed what I have shared and hope it will help you to make your own decision to get the vaccine or to not get the vaccine. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!
I am so glad that we finally made it through this week! I do not know about you, but I think this has been a painfully LONG week! Of course, work has been busy, which I like, but I can use a break from the insanity! I am not sure if it is stress-related or the colder weather, but my pain levels have increased drastically. Yes, I am going to be getting the first COVID vaccine tomorrow morning and if I am being completely honest, I am nervous about it. I am not nervous about getting a shot, however, I am nervous if this vaccine will have a negative interaction with the medication I take for the MS. At least I do not work the weekend and my husband will be sure nothing bad happens to me, and if all else fails the hospital is close to where I am going for the vaccine.
Our work week tends to be stressful and even cause some negative emotions to bubble up. Now that the weekend is so close, it is time to let go of all bad energy and feelings and just enjoy the short weekend. As I get older, I am understanding more and more, we have to do what brings us joy and care much less about what others think of us. As long as we are continuing to be kind, caring, understanding, and fair to others we are doing everything right. I am hoping the quote I am sharing with y’all will help remind you to live your life doing what you love and not trying to impress anyone else!
What do y’all have planned for your weekend? Y’all know I never do anything over the weekend, but you also know I am leaving the house tomorrow! Is it crazy that I am excited to leave the house but nervous about why I am leaving the house? Does anyone reading this post have Multiple Sclerosis, take Gilenya, and have received the COVID vaccine? I know that everyone experiences medication and side effects differently, but it might help relieve my anxiety to hear from someone that can give me a little information about the vaccine.
Thank you for visiting my site today! I really appreciate you continuing to visit and love reading your comments. It might sound silly to some, but I consider all my fellow bloggers friends. Please never forget that I am always sending y’all LOTS of love, comfort, support, and many positive vibes!
I know I have talked about COVID-19 numerous times since the pandemic started, but sadly things are only getting worse every day. The state that I live in surely isn’t the only one, but it has had a HUGE surge in new COVID-19 cases and deaths. I know it isn’t a good thing to live in fear because life is too short to live that way, but I am terrified of this virus and I think for good reason.
Currently, I basically do not even have an immune system and that is due to the medication I take for Multiple Sclerosis. So, I am dealing with a medication that is supposed to be slowing the progression of the MS but also weakens my immune system to a dangerous level with this virus being as uncontrollable as it is. Let me put it like this, from Monday to Friday in a city with about 68, 560 people living in it, there were 1,187 new cases. That is only the reported cases and who knows how many others are a systematic and have no idea they are sick and spreading a deadly virus.
If you pay attention to the news, you will see that thousands of people are dying daily from this virus. I am not able to watch the news without crying and maybe it’s because I am overly sensitive, but I can’t understand how this wouldn’t tug on everyone’s heartstrings. Some of these innocent people that have died with COVID never leave their homes and others were extra careful, and still ended up with the virus that took their life. How sad is it when someone loses someone they love and can’t even have a normal funeral because of a deadly virus? For me this is heart wrenching and unimaginable.
Of course, I do not for even a second believe we were informed in a proper time frame or manner. If only we received the warnings when those in charge knew there was a deadly virus spreading, maybe we would be in a safer and better place today, and maybe those that lost their life would still be with the ones they love. I do not see how it is possible for a President, Prime Minister, Chancellor, or whatever the name of the leader is would not be made aware of something like a deadly virus and not act accordingly for the safety of the citizens, but this did happen this year because our President cared more about reelection and lost anyway.
This year’s holidays are very challenging and unique. Thanksgiving has come and gone, and I feared going anywhere because of COVID. Christmas is only a few weeks away and I honestly do not feel safe leaving my house. There are so many what-ifs and no clear answers. My husband and I always went to my mother and stepfather’s house for Christmas Eve, but that isn’t happening this year for a few reasons and of course, COVID is one of those reasons. We would then go to my in-law’s house on Christmas day and I am not sure that is happening this year, only because of COVID.
Then there is New Year’s Eve. It is definitely a time to celebrate 2020 ending and 2021 starting, but what do you do on New Year’s Eve? That is right, people hug and or kiss. How can you even celebrate the New Year when you have to (or at least should) social distance? I can tell you that my husband and I will do what we have done for the past few years, which is to stay home just the two of us with our two sweet fur babies. Even before COVID, staying home was a safer way to bring in the New Year, or at least I feel like I am too older to celebrate at a bar with way too many people too close together. I have not ever enjoyed crowds because it makes me uncomfortable and nervous.
This is the first time I started writing without overthinking it. I knew what I wanted to write about, but I didn’t know the way it would come together. I typically write my posts out by hand because I feel more connected to what I am writing when it is written by hand. I am trying to change the way I think because I don’t think it make sense to write it out and then type it because it is kind of like doing double the work. Y’all have probably heard this saying before, “Work smarter not harder!” I am going to start doing this.
Thank you so much for visiting my site today. I hope your weekend has started off great and you are safely enjoying your time away from work. I think this is the first weekend in a while that I am not working overtime and it is rather nice. I might have been getting a little burnt out, which does not help the pain I deal with daily. I do look forward to reading your comments and I promise to respond as quickly as I can. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!
I might be a few days late for my normal “Let It Go” Friday quote, but I think I am going to go a little off-script today. There are things we can and should let go of, especially when it is from the craziness of the week, but there are also somethings that are not that easy to just simply “let go” of. The few issues I have tried, but failed to find a way to let go of are the hundreds and thousands of death from COVID-19, discrimination, violence, and hatred, the lies heard from those we “should” be able to trust, and the healthcare or lack thereof in the United States.
I am having a hard time not letting ALL the deaths due to COVID-19 bother me. I guess I can’t understand why we are all still in the same or even the worst situation since we were at the beginning of the year. This isn’t a political thing, this is a life and death situation and having the good common sense to do what is necessary. Wearing a mask isn’t fun and even feels a little suffocating, but it can be life-saving. Or even just social distancing should not be that difficult, but some seem to think it is. It is way past time to follow the advice from the experts. So, please when you leave the safety of your house, wear a mask and social distance!
I will also never understand why there is SO much hatred in this world which is spreading faster than a wildfire. Discrimination is nothing new, as it has been going on for decades now. The color of another person’s skin, who they love, where they are from or anything else should not matter! Forgive me for saying this, but I do think the amount of hatred escalated much more over the past four years. I mean, we have heard the president of the United States call COVID-19 the Chinese virus. We have also heard this same person talk negatively about people from other countries and of other nationalities, which is very wrong, but that is only my opinion.
There has been a widespread amount of violence over the past few years as well and honestly, it goes back even further than this. Again, this only my opinion and it is okay if you disagree with me, but violence does not do anything productive and only creates more problems. I wish that there would come a day where we can all get along and join together for the good of humanity. I guess maybe I am just naïve, but there is no reason why everyone can’t unite and help one another during troubling times.
The United States is one of the richest countries in the world, but yet the healthcare is a complete disgrace. The United States is the only developed country that does not offer the citizens free healthcare and instead allows the insurance companies to charge an insane amount of money, and that money still does not cover the policy holder’s entire amount. For those of us that have several medications we need to take daily, the pharmaceutical companies charge a ridiculous amount for each prescription. If it was not for the Gilenya Go Program, my medication for one month would cost more than my car and I don’t mean just one car payment, I mean the full amount of the car, which I would never be able to afford it. The Gilenya for only one month costs over $8,000, which is ridiculous! Unfortunately, without the Gilenya, I am afraid my condition would deteriorate rapidly.
After reading all of this, can any of you suggest a way to let go of these things? I have tried, but I am not able to. I am also one of those people, as y’all probably already know, who wears my heart on my sleeve. My heart breaks for what so many people have gone through and I wish there was something I could do to help, but I am only one person.
Thank you for reading this post, which is a little more of a rant of my feelings and nowhere near the positive way I am normally. Change is something that is necessary and I have no idea how to implement the changes that are required.I do hope you had a nice and relaxing weekend! I am looking forward to reading your comments and promise to respond as quickly as I can. Thankfully, my husband and I do not have two- legged children that we have to worry about going to school; our four- legged children never leave the house and are always safe! I am a chronic worrier and I do not think I could handle having any more people to worry about. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!
We have made it through one day of the week already, so happy Tuesday y’all! How is your “short” week going? Unlike the past few days when I worked, where I worked at least 10 hours a day, yesterday I only worked 9 hours! I think that is progress to slowing down a little, what do you think? The truth is, I do not know how to go slow when I work because I am focused on getting as much done as I can.
I told y’all that everyday this week instead of doing my normal posts with quotes, I was going to tell you two more things I am thankful for and why I am thankful for them. Before I share two more things I am thankful for, I want to thank y’all for sharing what you are thankful for. All of you are amazing and strong people, and I feel honored to have you as friends!
Another thing I am thankful for is something I don’t think about often, probably because I avoid thinking about the past, but I am thankful for the amazing neurologist that caught my Multiple Sclerosis early. My first neurologist was a patient and kind man, and I miss him more than I can even explain. I was determined to prove he was wrong about my diagnosis, but he stood by me and did everything he could to find the right medication for me. Without him and his early diagnosis, who knows where I would be now. For those of you that do not know, Dr. Kaufman was my first neurologist and he retired several years ago. He is irreplaceable.
Something else I am very thankful for daily is my two amazing and loving cats. Our oldest is Chloe, who is 15 years old and still so strong. Our poor baby girl was diagnosed a few years ago with early-stage kidney disease. Even though I can see she has lost weight and sometimes shows she is not feeling well, but that is just because I know her so well and she still beats up on her younger brother! Our youngest is our 10-year-old little boy Sundance. Sundance is a loving little boy with a fun personality, who really isn’t all that little because he is about 3 times the size of Chloe. Sundance has asthma and needs medicine twice a day. These two sweet creatures show so much love for one another and, me and my husband!
I hope you are looking forward to Thanksgiving on Thursday. I know holidays this year are going to be a little different from what we are used to, but we must continue doing what we can to stay safe! My husband works on Thanksgiving, so we will of course, we safe at home with each other and our sweet furbabies, and I am thankful for the safety of our home. We are able to keep each other and those beautiful cats safe and happy!
Thank you for visiting my site today. I hope you have a great and safe day. I am looking forward to reading two more things y’all are thankful for and promise to respond as fast as I can. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!
I have decided to write about a few things that have been weighing on my mind lately. Lately, I have been feeling overwhelmed with life, work, and health concerns. There always seems to be something going on in the world from the political insanity to COVID-19 to mass levels of hatred that is being spread even fast than the virus.
I think after everyone that wanted to vote did so and the counting was finished, there should not be any more talk about it. The voices of SO many American people spoke out and there is going to be a new president starting in January 2021! There is a chance we may have hope now because we are not going to have an immature person that is unable to take accountability for what has happened with this pandemic and is definitely not a leader in the White House.
As for COVID-19, if people would just follow the advice we have all been told for months now, MAYBE there would be more control over the virus by now. Unfortunately, the few times I actually leave my house hardly anyone is wearing a mask. I just do not understand why because I know they must have seen the news and see the numbers on the consistent rise. The virus is NOT a joke. This virus is killing thousands of people every day and it needs to stop.
The hatred that is being spread will never make sense to me. I have said this to y’all multiple times, but I have to say it again, everyone should be treated equally and with respect. A person’s race, color, sex, national origin, sexual orientation, religious following, and anything else should not matter because we ALL have a beating heart and feelings. No one should ever feel shame for who they are, but instead should be proud. The rage and hate that is filling the United States must end because the death, injuries, and fear are things that never should happen.
I will end my little rant now, but I do want to share with y’all a little about what my life has been like living with an unpredictable illness, especially during the pandemic. Most of you, if not all of you are already aware that this is definitely not easy. Of course, there are good days along the way, but then there are also those days that are more grueling than any others. The truth is there are some days it is challenging for me to even get down the stairs to the home office and begin my workday because my legs hurt terribly and they are extremely weak, but I do manage to get there.
Besides the continuous pain I have from my knees down to my toes, I have massive amounts of pain issues from the middle to the lower area of my back. Considering I have been living with Multiple Sclerosis for two decades, I have learned to live with the pain. I guess it is safe to say that I have learned to not just live with the pain, but also accept it as part of my life. I mean there really isn’t another way because I am not going to allow for Multiple Sclerosis to dictate my life as I want to control my own life. Unfortunately, there is not a cure for Multiple Sclerosis yet and I want to live my life to the fullest I possibly can. After all, I did make my late Poppy a promise 20 years ago that I would NEVER give up and I refuse to disappoint him by not keeping that promise!
Another difficult symptom I have been dealing with more lately is dizziness. Previously, the dizzy spells were random and only a few times a year, but recently they have been awful. Last week, I had two dizzy spells within a few days of each other. The second one happened after my husband and I finished dinner, and I told him before I tried to start cleaning that I didn’t feel right. When I tried standing up and I told my husband I was very dizzy, so he started cleaning up for me. I still attempted to try helping and when I thought I had control of the dizziness, I fell in the kitchen. Of course, my husband came running to my side to make sure I was not hurt. The only injuries were a few bruises to my knees and thankfully did not hit my head. Even after sitting on the floor with my husband for a few minutes, I still didn’t feel like I could stand without falling, so my sweet and caring husband carried me into our room.
I want to thank y’all for visiting my site today and reading this post. Even though I know some of you can relate to this, I wish you didn’t have to because I know it isn’t all that fun. On my worst days something that helps me get through them is I can hear my Poppy’s voice saying “No matter what you are going through in life, someone else is always going through something worse. “ He always told me he believed in me and that I was strong enough to get through anything thrown at me and I know he was right!
I would love to read your comments and promise to respond as quickly as I can. I know sometimes it takes me longer to respond, but that is because I have been working no less than 45 hours a week and sometimes more. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!
Many of you already know that I have battled my fight with Multiple Sclerosis for going on 20 years now. Most days I can’t even believe it has been that long and yet I still remember the day I heard the doctor say the words to me “Alyssa, you have Multiple Sclerosis.”I was a 19- year- old girl, alone in the exam room, and was in complete shock. At the time of my diagnosis, I was naïve, scared, and did not know what my life was going to be like. I only knew one person that had MS and she was in a wheelchair. Being so young and clueless I thought I was going to be diagnosed, and then bound to a wheelchair, and then death. I know how ridiculous that sounds now because I have a better understanding of this disease.
Of course, the past 20 years have come with many ups and downs, but not only am I still here to talk about it and hopefully help others living with chronic illnesses. Yes, I do live with various issues, but I have learned to live a fairly normal and full life with all of it. I think it is important to understand that no matter what our struggles are in life, we can learn to make the most of it. Life is short and no one ever said it was going to be easy. I think the more struggles we overcome, the stronger we are.
It has been a while since I have written about Multiple Sclerosis and considering I had an appointment a little more than a week ago with my new neurologist; it might be a good time to write a little about what I deal with day in and day out with Multiple Sclerosis. The real reason I do not write much about it anymore is I do not think it is good to dwell on things we have no control over, but it is important to help others that do not have MS understand what it is all about and others that live with this unpredictable disease to know they are not alone. I say this because I remember when I was first diagnosed, I felt so incredibly and painfully alone.
One of the most important things when living with any chronic illness is finding a specialist that you trust and can work well with. Over my years with Multiple Sclerosis, I have had my fair share of specialists that I respected and trusted, but then there were those I would do anything just to avoid them. The only reason those I trusted, respected, and admired are not my specialist anymore is that they retired. I have only met my new specialist was virtually, but she said one thing that won me over, she knew, admired, respected, and loved my first neurologist. As simple as this may sound, I have been missing my first neurologist since the day he retired. It did take me time to be accepting of him because he was the one that confirmed I had Multiple Sclerosis. The only reason I left the practice he was at is because the neurologist that was taking his place insulted him when speaking with me and this was a HUGE no, no!
During my two decades of living with Multiple Sclerosis, (WOW that sounds like a LONG time), I have faced and dealt with various issues. Of course, some of what I have struggled with have ranged anywhere between being a minor inconvenience to almost unbearable, and everything in between. Symptoms involved with Multiple Sclerosis and any other chronic illness can be different for each individual because we are all unique.
I am sure that most of you know about Multiple Sclerosis because you or someone you know has it, but I am going to take this time to provide you a brief overview, and then I will describe the issues I battle with every day of my life. I will begin by explaining what Multiple Sclerosis is.
What is Multiple Sclerosis?
Multiple Sclerosis is a disease that may become disabling of both the brain and spinal cord. With MS, the immune system attacks the myelin, which is the protective sheath covering nerve fibers and creates communication issues between the brain and the rest of the body.
What are the types of Multiple Sclerosis?
Unfortunately, in 2020 there is still not a way to foresee with absolute certainty how a person’s disease will advance and or how fast this will happen. The four main types of MS have been established by the: International Advisory Committee on Clinical Trials of MS and were defined as the following explanations.
Clinically Isolated Syndrome (CIS):
This is the first occurrence of neurological symptoms that are caused by inflammation and demyelination in the central nervous system. Although the occurrence must last for at least 24-hours to be considered a characteristic of MS, it still doesn’t meet the specifications for an MS diagnosis because those that experience CIS may or may not have MS.
It is when CIS comes along with lesion on a brain MRI, which is typically seen in MS, that the probability of the person having a 2nd MRI is high, and being diagnosed with RRMS is very common.
Relapsing-Remitting Multiple Sclerosis (RRMS):
This is the most common form of MS with 85% of people being diagnosed originally with it. RRMS is distinguished by undeniably defined attacks of new or increasing neurological symptoms, which are known as relapse or exacerbation and are typically followed with partial or complete times of partial or complete remission. While in remission, all symptoms may disappear or the symptoms may continue and be permanent, but during this time there isn’t any progression seen. RRMS can be further described as either active, which is with relapse and or confirmation of new MRI activity in a specific time frame, or NOT active, as well as worsening or not worsening.
Secondary Progressive Multiple Sclerosis (SPMS):
Secondary Progressive Multiple Sclerosis is a type when one was initially diagnosed with RRMS and progressed into SPMS. The progression from RRMS to SPMS is due to the increasing worsening of neurological function over time. SPMS can also e distinguished as either active, not active, as well as progression indicating disability accrual over time.
Primary Progressive Multiple Sclerosis (PPMS):
Primary Progressive Multiple Sclerosis is classified by increased deteriorating neurological function from the onset of this disease and without early relapse or remissions. Just like the first few types of MS, PPMS can also be distinguished as active, not active, progression, and without progression. Only about 15% of people with MS are diagnosed with PPMS.
The symptoms for each person living with Multiple Sclerosis might be very different, slightly different, similar, but they will never be exactly the same because we are all very different. I really did not mean for this post to get so long, so I will briefly share with you the symptoms I deal with both daily and or randomly.
The way I discovered that I had MS all those years ago, is because I lost vision in my left eye and went to the eye doctor. Never in a million years did I expect that this vision loss was the start of my journey with Multiple Sclerosis. After going through the MRI to confirm the doctor’s suspicions, I was put on an insane amount of steroids, which even though I completely and utterly detest steroids; they did help restore my vision. One would think I would have been relieved to learn I wasn’t going blind, but I often think the diagnosis was worse than the diagnosis.
Through the years, I have experienced a wide range of symptoms that have varied from mild and tolerable to awful and intolerable. A few things that have been a constant are pain, numbness and tingling, and spasticity. Sometimes I think that if I had one day without any pain, numbness and tingling life wouldn’t seem as normal. My legs always have that numbness and tingling sensation from my knees to the tips of my toes. It can make walking be challenging depending on how bad it is, but normally I am fine with walking. My back hurts every minute of every day from the middle to lower back, but I try not to let that get me down too much. There are times when the mixture of pain, numbness, and tingling can contribute to muscle weakness. I also experience a lot of fatigue and then have a hard time falling asleep. It is an annoying cycle!
Another symptom I have dealt with over the past two decades that is not very often is vertigo. There was a time several years ago when I was having vertigo very bad, but had a doctor’s appointment with my neurologist and drove myself to the appointment. I did well driving when a little dizzy because I managed to keep between the lines. It is insane that I hardly could walk a straight line, but drove perfectly fine! I have also dealt with the MS hug, which is not a huge anyone ever wants. The MS hug feels like there is a huge snake around you and just keeps squeezing. Another issue I deal with at least three times a week is headaches/migraines. Headaches/migraines are a form of pain that I can’t deal with.
Thank you for visiting my site today and reading about my LONG journey of living with Multiple Sclerosis. It has been a long journey and one I never wanted, but one I wanted to give up on 20 years ago. I am thankful that I did not give up and followed advice from my dear Poppy. When I was diagnosed, my Poppy told me that I was strong enough to handle this disease and to always remember that no matter what I am going through, someone else is going through something a lot worse. I have held onto his words all these years and hope that I can inspire y’all to never give up because you are far stronger than you ever knew.
I know this post got a little long and longer than I anticipated, but there is so much involved when living with Multiple Sclerosis. All the challenges you experience throughout your life are making you stronger and therefore you can inspire someone else to never give up! I am looking forward to reading your comments and I promise to respond as quickly as I can! Please never forget that I am always sending y’all LOTS of love, comfort, support, and many positive vibes!