Tranquil Tuesday

~My 20 Year Battle With Multiple Sclerosis~

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!

Always, Alyssa

~Pick-Me-Up-Thursday~

~Happy Friday Eve Y’all~

We have finally almost made it through this week! How has your week been? This week has been a long one, but it is almost over. Today is the day of my first virtual appointment with my new neurologist, I am hoping it goes well. I will do a post about how my appointment well, but I do appreciate all of your kind and encouraging comments!

Now that we only have one day left of this week, I think we could all use a little pick me up. I am hoping the quote I am sharing with y’all, will serve you with the right amount of encouragement and lift you need to make it just one last day! With all that is going on with COVID and the stress it is causing, we all need to stay together and help one another get through all this stress!

Thank you for visiting my site today! I hope your Friday Eve goes well and you are staying as safe as you possibly can. Please always remember I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!

Always, Alyssa

Tranquil Tuesday

We Need More Tranquility Daily For Our Sanity!

Happy Tuesday y’all! How has your week started off? My week has actually started pretty great, except for the ridiculous pain in my legs. I am thankful that I do not need to leave the house and do not have to walk much, but it still hard to deal with. Honestly, if I did have to leave the house and go to an office, I might not be able to because the pain in my legs is just that awful. Anyways, enough of that negativity and onto more positive news! Things with my job are going very well and I have even been requested from at least one of our lenders. I have made nice with them and really enjoy working with the lender!

We have made it through one day of this week and have four to go! From how the week started, I am thinking it is going to be a good week! I have my first appointment with my new neurologist on Thursday and thankfully it is virtual! I have heard nothing but great things about the new neurologist, so I am actually a little excited about it. I do not want to get my hopes up too high because I do not want to set myself up for disappointment, but we will see how it goes! From my own personal experience I know the typical personality of neurologists, but hopefully this one will be different.

To try to maintain the much needed tranquility we all need during these very challenging times, I have found what I think is a great quote. I do look forward to reading what you think about it though because your opinions matter so much to me! I find your comments truly amazing and insightful! I will do my best to respond to all your comments as quickly as I can, which might not be until I get off work.

Thank you for visiting my site today! I hope you are having a good week and of course, you are staying safe. Times with COVID are unfortunately getting even more scary, but as long as we are following what the experts are suggesting we should be okay! Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!

Always, Alyssa

~Pick Me Up Thursday~

~It Isn’t Just A Thursday, It Is Friday Eve~

We are finally almost at the end of this extremely long week! How has your week been? I hope your week has been great and you are staying as safe as you possibly can. I am working the morning, well until noon and then going to a doctor’s appointment. Unfortunately, this is one of those appointments I have to go to the office for, but I am always safe! I definitely I wish I could have done it virtually, but some doctor’s are not very cooperative.

With only one day of the week left before the weekend that we are all always looking forward to, we might be needing just a little pick me up! I am truly hoping the quote I am sharing with y’all today will give you the lift you need to get through one more day! I am looking forward to reading what you thought about the quote I shared today and will respond as soon as I can, which hasn’t seemed to be very fast lately. In my defense, these headaches I keep having are miserable and it isn’t easy to look at the computer screen.

Do you remember the weekends before the pandemic? I remember days in the past when I would have ideas of what I wanted to do over the weekend, but since the pandemic invaded our lives my plans are to stay in the house and safe. Even though I am thankful to be able to work from home, it sometimes seems like I am always at work because I hardly ever leave the house anymore. Although I am not excited about driving to my doctor’s appointment, I am thrilled to be leaving the house for a few hours today!!!

I want to thank y’all for visiting my site today! Your continued support and amazing comments are very appreciated. I hope your week has gone great and you are looking forward to a safe, and relaxing weekend! Please never forget that I am always sending y’all LOTS of love, comfort, support, and many positive vibes!

Always, Alyssa

Motivational Monday

Our New Week Is A New Start For More Success!

Happy Monday y’all! How was your weekend? Honestly, I had a lot of ideas of what I wanted to do over the weekend. Unfortunately, because of a nasty rainy weekend I did not feel well enough to do any of it. Rain makes me feel all my pain more and causes an extreme amount of fatigue. I do hope your weekend was spent better than mine and you are felt well all weekend.

Are you ready to begin another week? It isn’t ever easy to say goodbye to the weekend and begin another week that should be full of opportunities! Each week offers us opportunities for even more chances of success! I am wishing for y’all to have a nice and safe week! I am hoping the quote I am sharing with y’all today offers you the motivation you need to start your week with positivity and optimism!

I can tell you how some of my week is going to go. I have a doctor’s appointment on Thursday afternoon and unfortunately, I have to go to the office. I will be as careful as I possibly can be. I will wear my mask and sanitize as much as possible! I am not too concerned about safety with this office because they do not have people sit in the lobby. I will be immediately taken into the exam room, where I will sit and wait all by myself. The Nurse Practitioner will be quick and she is careful and understanding.

Thank you for visiting my site today! I hope you enjoyed the quote I shared and I am looking forward to reading your comments, and I promise to respond as quickly as I possibly can. I am sorry there are some comments I didn’t respond to yet over the weekend because I really wasn’t feeling well at all. Please never forget that I am always sending y’all LOTS of love, comfort, support, and many positive vibes!

Always, Alyssa

Motivational Monday!

Happy Monday! It Is Going To Be A Great Week!

I hope y’all had a lovely and safe weekend! Honestly, I did not do much of anything over the weekend and stayed safe. I did not really feel all that great, but I do think it had something to do with the weather. It kept raining on and off, which tends to cause pain and headaches for me. As we are entering a new week, that is a full week, hopefully, it will not feel as long as last week felt.

Unfortunately, I have to go get blood work done today because the unpleasant nurse at my specialist’s office has been on my case. I do not mind blood work and actually enjoy watching it, but with COVID being uncontrollable, I am not thrilled about going to the office. I will, of course, remain safe and wear my mask. Plus, I can check-in from my car and go in when they are ready.

As always, I think a motivating quote is helpful when starting a new week. I think a positive and motivating quote can set the tone for the week and hopefully the week will only get better each day! I do hope you will find the quote motivating and you enjoy it! I do look forward to reading your fabulous comments, which I will respond to as soon as I possibly can!

Thank you for visiting my site today! I hope you have a wonderful week and of course, please stay 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!

Always, Alyssa

Motivational Monday!

It is Monday and time for an amazing new week!

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!

Always, Alyssa

What do you think?

imagesEven though things are slowly getting a little better, I am still feeling way too much anxiety and stress. I am glad that my unemployment was approved because that helps with the financial stresses, but not having insurance when dealing with Multiple Sclerosis is making me feel a little crazy. I do think this would make anyone feel like they were jumping out of their skin, which is the way I feel right now.

My husband keeps telling me that I need to relax and everything is going to be okay. I am a very optimistic person normally, but I do not see life the way he does right now. Medications are stupidly expensive and so are doctor’s anxietyappointments. One of the medications I take daily that is supposed to slow the MS down is Gilenya. Y’all will be surprised how much this one medication would cost me each month without insurance. For simply a month supply it would cost me $7,500. Seriously, who can afford that?

Something that I find frustrating is, health care in the United States costs a lot of money and then there are still additional fees that need to be paid. The United States is the ONLY developed country that does not offer FREE health care, which I find crazy! Of course, I have never lived in a country where health care was free, but from my perspective, it can’t be any worse that what we have now. Sure, you might have to wait longer to see a specialist, but for me to get into the neurologist in the states I wait at least 2 months. free-and-universal-health-care-universal-health-care-free-but-65307278With all the costs between the price of insurance, the costs for appointments, the price of tests that need to be run, and then medications, people could just about go bankrupt. Our brilliant politicians try their best to convince the American people why we do not have free health care and that it would be an awful thing! The sad thing is, some believe everything they hear on the news and all the lies that come out of the politician’s mouths! I strongly believe that health care should be a RIGHT, not a PRIVILEGE. No one should ever have to choose between food and their health!

I know some of you reading this post live in a country with free health care, so want to get your input! What are the pros and cons of having free health care? Do you fe62d503ebdec18d58277ced8257e5e9_survey-citizens-for-plainfield-township-trails_631-313like having free health care or would you rather have it like the United States does? On average how long do you have to wait to see a doctor? Are the physicians intelligent and knowledgeable?

I hope your day is going well and you are feeling the best you can. Thank you for taking the time to read this post and I am looking forward to reading your comment! Please never forget that I am always sending y’all LOTS of love ❤, comfort, and many positive vibes!

love-2-e1526867753936

❤Always, Alyssa❤

The rant about healthcare & insurance!

charlie-ergen-quote-to-use-a-poker-analogy-if-the-deck-is-a-bitHave y’all ever felt like the cards were stacked up against you? Living with a chronic illness already gives the house a much better hand, but I will always refuse to fold! We have all learned various ways to cope with what we live with and to keep up a good fight despite any additional struggles we are forced to face. I learned many years ago that the storms of life will only gain more strength, but weathering these storms can and will be done.

I do think the unexpected issues that arise can be the most problematic and perplexing ones. Losing my job for absolutely no reasonable or seasonable reason really did send my mind into a downward spiral. I have tried my best to stay positive dda6dd8c8211c5c345ce66f0f5558197--quotes-about-worrying-quotes-about-stressthrough the time I was without a job, but the continued nagging fear of being without insurance while living with a chronic illness is beyond terrifying. It almost feels like being on a roller coaster without a safety belt on and this feeling gets the best of me more than I like to admit. I know I have complained before, which isn’t helpful at all, about how crummy and expensive insurance is, but being without it with Multiple Sclerosis or any chronic illness is very unpleasant. Medications and doctor’s visit are expensive with insurance and I hate that I know how much these things are without insurance. Thankfully I have only been forced to go to one doctor’s visit without insurance which was very expensive and I found that GoodRx.com does help reduce the price of medications! Even though I have found ways around the doctor’s visits, I am still always in a constant fear of what will happen if I have a relapse or if these corrupt idiots corruption-power-quotes-01.jpgrunning this country mess with pre-existing conditions because this could happen. I do know that thinking about these things is nothing but stressful and will only create additional health issues, but it is impossible for me to let go of these thoughts and feelings.

Y’all already know that I have been battling with a crazy stomach issue for over a month and I am avoiding seeking medical attention until I have insurance again. I mean who stomach issuescan really afford these various appointments and all the tests doctors think they need to run on their patients? I am not, never have been and never will be in the tax bracket that can afford this. What kind of person can look at someone with an illness of any kind and only see dollar signs? To me, that is not a good or compassionate person, but they are the ones on top. It is really unfortunate that some can be as evil and corrupt as they possibly can be, but not ever face the consequences for their bad behaviors.

gilenyaThe Gilenya I take daily to keep my Multiple Sclerosis under some kind of control costs $8,500 per month without insurance. This is completely absurd and absolutely ludicrous! Unfortunately, GoodRx isn’t able to assist with this medication. I don’t know about you, but I sure as hell can’t afford these high costs. I have been going through an amazing program called Gilenya Go Program since being on this medication and my cost has always been $0. I don’t even want to think about what I would have gilenya-go-programdone if this program didn’t exist. Considering I do not have insurance at the moment and only have about one month left on hand of this medication, I did panic. I have spoken with an amazing representative for the Gilenya Go Program and she told me all I would need to do is call them when I am down to one week left and they will send this medication to me free of charge and can do this for about 2 months. By the time they aren’t able to assist me any longer, I will have insurance again, so thankfully I will not go without. This is just me, but Gilenya has been helping keep me semi free of relapse and further progression.

GLN01260I also take Neurontin, three times a day. This is another medication that is a little expensive, but nowhere near the crazy cost of Gilenya. A one month supply of Neurontin with insurance was only $10, which is very affordable. Now without insurance this will end up costing me close to $300 per month! If I do go through the GoodRx,com website, I might be able to get this medication for around $47 per month which is still high but a lot more feasible than $300!

Now there are a few other medications I do take daily that are rather expensive, but the GoodRx website has been very helpful with these. How is it that the United States of othercountrieshealthcarecs.jpgAmerica is the ONLY developed country that doesn’t offer free healthcare? An even better question is why are the American people so scared of having free healthcare? My guess is, these people are blindly listening to the ones in power that say this will never be a good option and much more negative lies about it. Free healthcare has been great for all the other developed countries with the citizens only saying great things about their free healthcare! In my personal opinion, those that say nothing good about free healthcare need to dig a little deeper and far beyond what American leaders say, until they can think for common sensethemselves with a clear mind and actual logic!

I want to thank you for visiting my site today and reading my rant about how awful healthcare is in the United States. In all honesty I do not like to complain because it doesn’t fix the issue, but I needed to get my thoughts out and really want to know your thoughts on this! I hope you have a lovely and peaceful Sunday. I feel that the weekend went by way too fast and I have to get up early again and back to work tomorrow. I mean seriously, where did the weekend go? Is it really too much to ask to have our weekends be a little longer? I promise to respond to all your comments as quickly as I can and considering it is Sunday, I should be able to do this! Please never forget that I am always sending y’all LOTS of love ❤, comfort and many positive vibes!

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❤Always, Alyssa❤

Result are finally in!!

drum-roll-pleaseGood evening y’all! I hope you had a great day and you are thankful tomorrow is Friday, I know I am! I have definitely had a long week because I was so stressed about what my MRI results were going to show. I can honestly say that worrying and stressing did not change the results!

I am beyond happy to share with y’all that the MRI I had on Friday was MUCH better than the one I had last October. In October, in the words of my neurologist, my brain was on FIRE with many new and very active lesions. That was terrifying for me to learn as I am sure it would be for anyone, but the one I just had improved drastically. The numerous good resultslesions that were causing all my issues last year have healed as much as they are going to! My absolutely fabulous NP was so happy to see how much better my MRI was on Friday in comparison to how horrible it was last year! She told me and my husband how surprised she was to see how much I have managed to improve in just ten short months! She also said that it seems that Gilenya is just the right MS drug for me! I told her that I have NO intentions of changing stress-effects-fbmedications again until there is a cure! I am not preaching that everyone should be on Gilenya because we all have different body chemistry. What works for me might have the adverse effect on someone else. 

We did talk about the dizziness and pain I am still dealing with. She has said to me many times before that she thinks that my pain could be caused from the stress I seem unable to control. We have all heard many times that stress is a killer and I do really believe that! You know there is an app for everything, but she shared an app with me about stress and MS. I am going to give it a chance, I mean it can’t hurt anything!stress is the cause This app is available for iPhone and Android under the play store, it is called ImageryWork. There is also a website if you are interested, Imagerywork.com. I have known for a long time that I needed to get a handle on my stress because I have felt what it does to my body. It will be SO INCREDIBLY wonderful if controlling and managing my stress will eliminate the majority of my pain! I think I have lived with this pain for way too long and maybe there is something I can do to help it!

There are a number of reasons I could be experiencing dizzy spells. One the she really pushed on me was eating more! Both her and my husband dizzinessthink I should try eating 4-5 smalls meals each day, which I never do! I am going to try having small snacks throughout the day and not worrying about whether it is healthy or not and if I am going to gain a lot of weight! Weight has always been a huge worry of mine and I know how stupid that is in the big picture. Truthfully, I am NOWHERE near being overweight, in fact I am underweight according to the NP. 

So, I guess what I learned today is all the issues I am having, like increased pain and dizziness is my own fault. I am going to work on making the necessary changes to mytrytobea-min health so I will actually feel normal, whatever that is! All of the support and encouraging comments I have received from y’all have been SO appreciated. Y’all helped me through a very difficult time, which I guess I kind of caused. I really am very relived that my MS is not progressing like I was thinking and that the Gilenya is doing it’s part for me!

I hope y’all have a wonderful and relaxing evening! Please always know that no matter what I might be dealing with, I am always sending y’all LOTS of love ❤and comfort!

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❤Always, Alyssa❤