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!
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!
Let’s Begin This Week Off With A Positive Mindset!
Happy Monday y’all! How was your weekend? I hope your weekend was full of relaxation and happiness! Honestly, my weekend was fairly uneventful, and I enjoyed that. I feel sometimes we all need the entire weekend to recuperate from a long and busy week.
With all of the changes that have gone on with the weather, I have been dealing with my typical increased pain. Now, I do deal with this every time there is any changes in the weather, but for some reason Sunday was a lot worse. It is a good thing I didn’t have any plans and didn’t need to leave the house because my legs hurt so bad it was painful to even walk. No matter how high my pain is, I will never sit around and feel sorry for myself because it could always be worse and life if just too short I guess we all deal with health issues and we make the best of it.
Sadly, the weekend is over and we are at the beginning of a fresh new week. It isn’t even easy to say goodbye to the weekends, and my cats especially hate it because now Mommy will be in her home office locked away from them all day long the entire week. Yes, my cats are babies and demand a lot of attention! I almost feel a little guilty that I have to be locked away from them, but it would be nearly impossible because they would both be walking all over my desk, laptop, and the paperwork on my desk. They would amazing co-workers, if they would not try helping SO much!
Now that we are at the beginning of a new week, that is hopefully filled with fantastic opportunities I think we all could benefit from a little motivation! My hope is that the quote I am sharing with y’all will kick start your week with the right amount of motivation, optimism, and encouragement that is necessary to start a week off on the right track! I am looking forward to reading your thoughts on the quote and also how your weekend was!
Oh my goodness, almost forgot to tell you about something truly shocking and amazing happened at almost 5:00 PM on Friday. Y’all know that I had started a new job a few months ago and the work is similar I have done previously. The only issues have been the lack of training and the consistent changes that do not usually make sense. Anyways, the good news is I received an email from a team lead telling what a good job I was doing, and that she and others in management were very impressed with me. This made me feel pretty great and helped build my confidence.
Thank you for visiting my site today and I hope you have a splendid start to your week! I know I have been slower with my responses to your comments, but I promise I will 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!
Since Friday afternoon I have been battling with a nasty headache, which I think was more an evil migraine. It started when I was still working and I had to force myself through the last part of the day, which even though I work at home was difficult to make it until 5:00. I know some would say the migraine and pain came from stress, but I actually disagree with this. Yes, I did get a little worked up about a loan I was working because I was a little confused about what I had to do next, but I did get everything figured out and was fine.
I have been working with my new company for three weeks and I still love my job. During the initial few weeks after training, we are all supposed to work on the loans that are assigned to us, and then the team lead would review our work before we could proceed with changing the status to “complete”. Well on Friday while I was dealing with the start of my nasty migraine, my team lead told me I did not need to have my work reviewed anymore and could proceed on my own. I am not sure why I was so shocked by this because I do understand the work, but to be told this during the end of my third week was a good feeling and made me feel confident. This is the same team lead that told me during my second week on the job I was going to be his “rock star”, so I guess I have a lot to live up to!
When I did finally make it through my horrible painful day on Friday, I laid down with an ice pack on my head around 11:00 PM and did not really get up until late Saturday. Not only am I dealing with a migraine from hell, but my entire body aches. I do not know where this is all coming from. It has been incredibly hot in the south, but I do not leave my house so I don’t know why the heat would be causing me so many issues.
As I am trying to write this I can feel the pain starting back up again, not that it actually stopped it just eased up some. Dealing with pain is not easy and can cause some stress. Trying to understand why the pain has to be this severe is something that can’t be understood. Normally, I can deal with pain, but I am not able to deal with head pain.
Headaches/migraines will have me in the bed with an ice pack and nothing helps. It has been a frustrating weekend that is almost over. I can only hope the headache/migraine will leave me alone as the week starts. I promise I have done everything I know to get rid of the pain, but at this point, nothing is working. I am staying hydrated and even trying to eat.
Do y’all ever get massive migraines or pain in general? How do y’all deal with this? I would like to believe I am a strong person, but I am losing that strength dealing with all this pain. Any advice y’all may have would be greatly appreciated.
Thank y’all for visiting my site today. I do hope your weekend has been lovely, you have been able to enjoy it, and you have stayed safe. Please know that even though I am struggling with pain issues right now, I am always sending y’all LOTS of love, comfort, support, and many positive vibes!
I hope y’all had a wonderful and very safe weekend! Monday’s are never all that exciting, but they do offer us a new week with a new beginning! My week is starting at the car dealership trying to get my air conditioning fixed before I have to drive an hour and a half on Friday for a doctor’s appointment when it will be in the high 80’s. I am sure y’all know by now that this virus scares the heck out of me, so I will be very cautious with a mask and maintain social distancing! One thing I am not able to tolerate is heat because not only does it make me a little frustrated and a little mean, but it can increase negative health issues for me.
As we begin our week, I think we all could use something motivating to start the week off on a positive note! I do hope the quote I am sharing with y’all will serve you well and your week will only get better as the days go on. I would of course love to read what you thought about this quote and if you found it motivating!
Things are a little crazy right now in the United States, as I am sure y’all have heard about on the news. I find it incredibly heartbreaking how many innocent people have been killed by not only police, but other American people. It seems there are still way too many people that are nothing more than racist, which I do not understand at all! Y’all already know this about me as well, I believe everyone was created equally and have a beating heart and should be treated equally and with respect! I am working on a separate post about these issues and it will be posted in the next few days.
Thank y’all for visiting my site today! I always appreciate all your support and kindness! I hope y’all have a wonderful day and you are continuing to stay safe anytime you are not at home. Please never forget that I am always sending y’all LOTS of love, comfort, and many positive vibes!
An exacerbation of Multiple Sclerosis can also be referred to as an attack, a relapse or an episode. All the terms all mean the same thing which is the occurrence of new symptoms or worsening of an old symptom. These range from mild to severe enough to interfere with a person’s ability to function in daily life. The exacerbation will follow the following criteria:
Previous symptoms become more severe or new symptoms have started to show.
Symptoms last longer than 24 hours, commonly lasting days or weeks.
A total of 30 days has passed since the start of the previous relapse.
Healthcare provider has ruled out all other possible causes for an exacerbation, including infection, heat, and stress.
It is critical to know when this is happening because early treatment can help reduce the impact on the person’s body. It must be known that no two exacerbations are alike and can change slightly.
The reason an exacerbation occurs is due to the immune system attack on the myelin sheath, which then causes slow or interrupted neuronal signals in the brain and spinal cord. An exacerbation can consist of balance problems, coordination, eyesight, bladder function, memory or concentration problems, mobility, fatigue, weakness, numbness or needle-link sensation.
Mild symptoms such as fatigue, numbness, and needle-link sensation could potentially improve on their own and not require treatment. More intense issues could be considered a severe exacerbation which could include vision loss, extreme weakness, and poor balance. During a severe exacerbation, a person’s daily activities could be affected and a short course of high-dose corticosteroids may be recommended by the specialist.
The high-dose of steroids helps reduce the severity and duration of the exacerbation. Even though steroids work well with the exacerbation, they can also have some rather unpleasant side effects including increased appetite, weight gain, fluid retention, high blood pressure, irritability, confusion or delirium, increased risk for infection, and easy bruising.
Symptoms for each person with Multiple Sclerosis are different. Being aware of common triggers for an exacerbation is vital for each person to know and even though symptoms can occur without any notice it is important to try avoiding certain things the best one possibly can.
4 Common Triggers for an Exacerbation:
Stress- Part of living with an illness like MS is emotional stress which can lead to other common MS symptoms such as depression. Stress does have the potential to lead to additional MS symptoms such as fatigue and confusion. It is a crucial part of MS treatment to have a good and solid support network of people that can help out both physically and emotionally.
Fatigue- Sleep is essential for those with Multiple Sclerosis. Small issues like lack of sleep can trigger MS symptoms. It is very important to have good healthy eating habits, sleep well, and getting exercise daily which will help combat MS fatigue.
Infection- Infections cause about one-third of all exacerbation. Urinary tract infections are very common because some people with MS have reduced bladder function. Any infection can weaken the immune system; even the simple ones like a cold or the flu and cause an exacerbation. It is extremely important to avoid being around sick people, but when it is unavoidable be sure to wash hands frequently.
Heat- Infections leading to fever can be something to worry about considering increased body temperature is a very common trigger. MS symptoms, especially tingling gets worse in the summer because of the heat. It is predominant to get into the air conditioning or take a cool shower to reduce heat symptoms from occurring.
Thank y’all for visiting my site and reading about what an exacerbation is. Speaking from personal experience an exacerbation can be awful and also frustrating. Even though I do know that steroids help the episode duration be shorter, they cause my mood to change so much that I have a hard time with them. They cause my temper to come out much faster than it normally would and also cause me to feel edgy and unable to sleep.
For any of you that have experienced an exacerbation and were put on steroids, how did the steroids make you feel and did they help the episode not last too long? Also, if you have anything you would like to add to this, please let me know. I always want to spread the awareness as much as I can because I think it is important. Even in 2020 I do still think there are a lot of misconceptions about MS and people are very quick to judge, which can cause feelings to be hurt. Please never forget that I am always sending y’all LOTS of love , comfort, and many positive vibes!
March is Multiple Sclerosis (MS) Awareness Month. Multiple Sclerosis is an incurable neurological condition that affects the brain, spinal cord, and optic nerves. The body’s immune system attacks the protective myelin sheaths that cover the nerve fibers which cause areas of scarring, known as sclerosis. The immune system also attacks and destroys the fatty myelin coating that surrounds and insulates nerve cells which is a process known as demyelination.
Experts suggest there being 250,000-350,000 people in the United States currently living with this illness. There is an indication the rate of the disease is increasing regularly in the 20th century with approximately 200 new cases each week. Those of Northern European descent have a higher risk for the disease, but Native Americans of North and South America and Asian Americans are at a lower risk. The disease is much more common in colder climates.
There are four types of Multiple Sclerosis, all having different characteristics.
Relapsing-Remitting Multiple Sclerosis (RRMS). This is the most common form, being that 85% of those with MS are initially diagnosed with. Patients with this form will have relapses and periods of stability in between the relapses. Relapses are the episodes when new or worsening symptoms that are not caused by fever or infection appear. These episodes typically lase more than 48-hours. Between relapses are periods of remission where there is no clinical evidence of disease progression. Periods of remission can last for years, but this can range from person to person.
Secondary-Progressive Multiple Sclerosis (SPMS) can basically be considered the second phase of the disease. Most people that are initially diagnosed with RRMS will transition to this form at some point. Symptoms with SPMS will worsen steadily over time with or without occurrences of relapses or remission. There may or may not be times of relapses caused by inflammation, but will continue towards the progressive phase indicating nerve damage or loss. With this form of MS, the disability only continues to get worse.
Primary-Progressive Multiple Sclerosis (PPMS) is less common than the other forms and only affects 10-15% of those with MS. On average people with PPMS start having symptoms between 35-39 years old. There is a slowly worsening of symptoms from the beginning with no relapses or remissions. With this type of MS there can be times of short-term, but temporary, minor improvements, however the decline of neurologic progression is constant. Symptoms of PPMS include pain, electric-shock-sensation running down the back and limbs when the neck is bent, trouble walking, vision problems, muscle weakness, trouble balancing, paralysis, numbness, prickling feeling, dizziness, shakiness, trouble thinking clearly, mood changes, depression, sexual problems, and trouble with bowel and bladder control.
Progressive-Relapsing Multiple Sclerosis (PRMS) is a rare form of MS. There will be a steadily worsening of the state of the disease from the beginning with acute relapses, but no remission will occur. The symptoms of this form are the same as those with PPMS.
The first neurologic event suggesting MS is known as Clinically Isolated Syndrome (CIS), which usually lasts at least 24-hours. The symptoms will indicate a single lesion (Monofocal) or more than one lesion (Multi-focal) in the central nervous system (CNS). There are many symptoms involved with Multiple Sclerosis some being common and others being less common.
Common Symptoms Associated with Multiple Sclerosis
Fatigue (Mental and Physical)
Tingling or burning sensation in the arms, legs, trunk of body or face
Vision issues (blurred or loss of vision)
Attention and memory issues
Dizziness, vertigo, and clumsiness
Less Common Symptoms Associated with Multiple Sclerosis
Itching for no reason
Mood changes such as depression or euphoria
Ability to concentrate or multi-task effectively
Difficulty making decisions, planning or prioritizing
Secondary Symptoms that can develop
Bladder and bowel problems
Sexual health issues
With all the possible symptoms one can experience, there are ways to manage most of them. Bladder control can be something one can experience and this can be rather embarrassing if it happens out in public, but there some suggested strategies to manage this.
Drink enough fluids. The kidneys need at least 2 liters of water daily in order to flush waste products. Do not try rationing intake because this could increase the risk of infection.
Time your drinks. Try to spread fluid intake evenly throughout the day.
Limited caffeine and alcohol intake. Both of these can increase the amount of urination.
Special exercises such as exercises that strengthen the pelvic floor.
Continence aids such as disposable pad can be beneficial.
Medication can be provided to reduce the urgency to urinate and help the bladder empty itself.
Pain with MS can be primarily due to the neurologic condition. Pain could also be due to secondary conditions, such as musculoskeletal issues as a result of altered posture or spasticity. The weakening of leg muscles tends to trigger aches and pain in the back or knees. The unfortunate truth is, people with Multiple Sclerosis can feel pain anywhere, but there are ways to help manage the pain which includes medication, physical therapy, and relaxation techniques.
Every person that lives with Multiple Sclerosis is different and deals with this illness in a way that serves them best. A person can experience similar issues as another but at the end of the day, we all handle it differently. Each symptom, relapse, remission, and medication affects each person vastly different but yet can understand what another person is going through. It is vital that no matter what stage the illness is, there needs to be an understanding of what our limitations are and to never push beyond that.
Thank you for visiting my site today! I hope the information I provided to you was helpful. There is a chance I have stated the same thing in previous years, but I do feel it is important for us to spread as much awareness as we can because it does not seem like this illness is going away anytime soon. I do want to believe that someday in our life time there will be a cure, but until then we must continue to live our lives the best we can. I hope you are having a great day and feeling the best you can. Please never forget that I am always sending y’all LOTS of love , comfort, and many positive vibes!
P.S I will be doing additional posts about MS during the month, but felt they needed to be separate posts because there is SO much information available. The crazy thing is, no matter how many years I have lived with MS, reading about it is a little upsetting.
I recently had to deal with my specialist’s office, in regards to the medication I take to limit the progression of my Multiple Sclerosis. Since the doctor that diagnosed my condition retired, the office he was at has been on a downward spiral. The amount of incompetence and lack of compassion are the only things that are steadily increasing, which is terrible.
Whether it be a nurse, nurse practitioner, or physician, they all should know how awful stress is for someone with Multiple Sclerosis. Being forced to battle with a nurse with a terrible attitude to get a refill for my medication caused me nothing but massive stress and frustration. This would have been difficult regardless, but when the nurse decided to be ugly the situation escalated unnecessarily. All I am trying to do is anything necessary so I do not have a nasty relapse, especially without insurance.
I know I mentioned in a post I did a few days ago, the flaws within healthcare in the United States, but with what I just experienced trying to talk to my doctor’s office makes it even more frustrating! For a country that has insanely high costs for health insurance, you would think patient care would be top-notch, but it is the direct opposite.
The medication I take to slow my progression down is Gilenya. I have been on this same medication for a long time, so I know the processes and the ridiculous out of pocket with NO insurance. Honestly, I do not believe any normal person could afford this medication and I definitely can’t.
Basically, I guess I am not in the right tax bracket to be able to have insurance that I can afford or at least affordable medication to keep my condition at bay. Maybe I also missed the tax bracket where kindness, respect, understanding, and empathy exist. I feel strongly that health insurance should be a RIGHT, NOT a PRIVILEGE, but surprise the powers that be don’t agree with me. I do not think anyone should have to worry about how they are going to survive without insurance and without access to life-altering medication.
First, thank you for taking the time to read this post. Second, I hope none of you ever have to go through anything like this. Third, I hope your weekend has started off great and continues to bring you happiness. I do want to encourage you to leave a comment; I definitely need advice on how to deal with the ignorant people at my specialist’s office. Lord knows I can’t take too much more, especially if it is just going to be a bunch of bull shit!
I hope you enjoy every moment of your weekend and hope you feel great! Please never forget that I am always sending y’all LOTS of love , comfort, and many positive vibes!