Category Archives: MS Awareness Month

MS Medications and Copay Assistance Programs

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Although it has been 20 years since I was diagnosed with Multiple Sclerosis, there still has not been a cure discovered. When I was diagnosed, there were not many disease-modifying therapies (DMTs) available and the ones that were offered were all injection based. I will never forget the first two I tried because they failed miserably. To be 100% honest, it may not have been the medications that failed, but instead, I was at fault because I found it too difficult to give myself a shot. Of course, injecting yourself with a sharp needle is challenging, but I think that the after-effects were much more miserable.

One can experience side effects with any medication, which I believe is because most medications, no matter how helpful they seem are poison and they require another medication to combat the symptoms. I guess you could say that big pharma knew exactly what they were doing to keep their pockets filled deep and everyone else to be broke.

During the past twenty-plus years, which is more than two decades, there have been many improvements and advancements in the treatment for those living with Multiple Sclerosis. The DMTs are no longer only injection-based and there are now a variety of medications available. Not only are there numerous medications to choose between, but most have copay assistance programs making the medications more affordable. These copay assistance programs are very beneficial, especially, if you lived in the United States where healthcare and medications are outrageously expensive. 

In the rest, of this post, I am going to share the different types of medications available for Multiple Sclerosis and if there are copay assistance programs available. Please be advised and understand that I am not a medical professional, nor am I providing any advice on the best medications to try. The information in the remainder of this post is all information I have discovered through the years and research.

I am going to start with my least favorite type of DMT, which was the only type available when I was diagnosed.

Injected-Based Medications:

Rebif, an Interferon beta medication was the first medication I “tried” after my diagnosis. This medication is taken three times a week and at least 48 hours apart. Rebif is administered subcutaneously, which means you are injecting the medication with a short, thin needle just under the skin. Rebif offers three injection options: the Rebif prefilled syringe (which is what I had), the Rebif II autoinjector, and the Rebif Rebidose Autoinjector. There are two options or dosages, 22 mcg, and 44 mcg. The following link will take you to the website for Rebif’s copay assistance. https://www.rebif.com/home/1-on-1-support/Financial-support-specialists.html. 

Copaxone was one that I did try for a short time. Both myself and my doctor knew it was not working well enough for me as I had already proven I was terrible at giving myself injections. This type is also given three times a week and at least 48 hours apart. It is best to do the injections at the same time and day each week. Copaxone 40mg can be administered with autoinjector 2 in a glass syringe. There is a copay assistance program for this medication, which you can visit at the following link. https://www.copaxone.com/shared-solutions/copay-assistance.

Avonex is a once-a-week medication. This is a 30-mcg intramuscular self-infection that is injected into the muscle. Avonex is available in two ways. One way is the Avonex pen which is a single-dose autoinjector. The second way is an Avonex prefilled syringe that allows you to inject your weekly dose. Copay assistance for this medication is available, so if you are interested in this, please see the following link https://www.avonex.com/en_us/home/support-and-events/financial-information.html 

Although, oral medications are easier and do not involve needles, not all oral medications will be the most effective treatment for everyone. I am going to share the oral medications that are currently available and if there are copay assistance programs available. 

Oral Medication Options:

Aubagio is a once-a-day medication. Copay assistance programs are available. https://www.aubagio.com/cost 

Tecfidera was one that I did try, but it was because I was having issues with increased headaches, and everyone I know (not my doctor) was blaming them on the Gilenya. This medication is taken twice a day with or without food. This medication does have a copay assistance program available to help with the costs. Please see the following link if this is something you are interested in. https://www.biogenoptions.com/en_us/home/biogen-support-services/financial-insurance-cost-assistance.html 

When on Vumerity, during the first week, the patient would take the starter dose of 231 mg as one pill twice a day. After the first week, the patient would begin the regular dose of 462 mg as two pills twice a day. As with all the others I have gone over so far, this medication also has a copay assistance program. https://www.vumerity.com/en_us/home/biogen-support-services/financial-support.html 

With Bafiertam, during the first week, the patient could take the starting dosage of 95 mg, which a day. After the initial seven days, the dosage would increase to the normal dose of 190 mg twice a day. Copay assistance for this medication is available, please see the following link to learn more https://copay.bafiertam.com/ 

Gilenya is the medication that I have been on for many years. The first dose of 0.5 mg needs to be monitored for at least six hours by a healthcare professional. After the first dose, this medication is taken once a day with a daily dosage of 0.25 mg. There is a copay assistance program, which is a lifesaver as this medication is insanely expensive. For a better understanding of the copay assistance that may be offered, please see the following link https://www.gilenya.com/ms-pill/co-pay 

Zeposia is another type of oral medication that I have not heard much about and it surely was not an option when I was diagnosed. This medication is taken once a day as well. There is a copay assistance program available, please see the following link for further information. https://www.zeposia.com/multiple-sclerosis/copay/ 

Another oral medication that I am not too familiar with, and it was not available when I was diagnosed is Ponvory. This medication is a once-a-day pill, but it does involve a special way to begin the medication. There is copay assistance available for this medication, please see the following link to view more information https://www.janssencarepath.com/patient/ponvory/cost-support 

There are numerous other options available to treat Multiple Sclerosis and so many more than I was offered when I was diagnosed. Of course, I do encourage anyone who has been battling with this disease for years or those who have been recently diagnosed to do research on different medications. I am including a link to the Multiple Sclerosis Society, as this website explains the different types of medications available and if there are any assistance programs available. 

I do think it is also good to talk with your specialist because they should be very knowledgeable about the medications that are available. I did share several in this post, but I did not want to make you read about so many medications, when you can read about the types that seem appealing without reading as much as I have already shared. Plus, I do not want to encourage anyone to try any medications because again, I am not a medical professional. The only thing I know is, I have been fighting this disease for over 20 years and I am still waiting for a cure to be available.

Thank you for visiting my site today. Even though I am not making any suggestions on the best medications, I hope the information I shared regarding copay assistance was helpful for you. Considering I have been dealing with these copay assistance programs for a long time, I am happy to help if you should have any questions. I hope you are having a lovely weekend and I am looking forward to reading your comments or questions, which I will respond to as quickly as possible. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!

Always, Alyssa

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31 Reasons

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Most likely many of you are aware that March is Multiple Sclerosis Awareness month. There are only 31 days to raise awareness of a disease that impacts and changes the lives of those living with the disease for the rest of their lives. Although I am sure there are more, I am going to share with you 31 reasons why I detest MS. Of course, I do not mean to sound negative, but this disease is anything but pleasant or easy to deal with. Please know these reasons are not in any specific order.

1. This disease is incurable and a lifelong condition.

2. Multiple Sclerosis is unpredictable and can strike at any time without any notice.

3. Neuropathy is something that can cause issues such as pain, numbness, tingling, weakness, and a pins and needles sensation.

4. Random and frequent headaches, which no one could ever get used to.

5. Numerous appointments with different doctors.

6. The expenses of medication are higher than they should be in the United States where free healthcare is not an option.

7. Vision changes can happen to anyone but seem more common with MS.

8. Multiple Sclerosis can be hard to control considering there are no answers to the causes.

9. Never-ending fears of losing mobility.

10. Constant daily changes.

11. Back Pain, which I have lived with for years in my lower to mid back.

12. Leg pain, mostly neuropathy. This can make walking challenging.

13. Heat intolerance, which living in the south can be miserable.

14. Weight gain due to the inability to exercise much because of the pain.

15. Sleeping troubles due to waking up with pain and not being able to fall back to sleep.

16. Frustrations! You can do everything the doctors recommend, but it does not appear to make a difference.

17. Memory issues.

18. Missing the feeling of being normal.

19. Adjusting to weather changes can be challenging. Too hot creates issues, but too cold can cause me to tense and cause even more pain.

20. Dealing with doctors that do not always listen or understand. Doctors may understand the disease as much as they can, but they have no idea what it is like to live with it. Studying and reading can only do so much.

21. Understanding what creates additional issues, such as food, lack of sleep, stress, etc.

22. Worrying about the possibility of progression. This has always been a huge concern for me.

23. No answers regarding the causes of the disease.

24. With the unpredictability, one needs to always have a backup plan. This may be easy, but it is not easy explaining to friends and family.

25. Trying to stay positive without any changes in medical progress.

26. Knowing the best medication for the disease can be different for each person.

27. MS Hug. This is a painful hug that no one would ever want!

28. Dizziness

29. Flareups and steroids can weaken teeth causing them to break easily.

30. Fatigue. It is difficult to always feel tired because you are unable to get enough sleep.

31. Trying to explain to others how one can appear normal but are always in pain.

I have always known that this disease can take away my mobility and it has terrified me since I was diagnosed. Of course, I am always aware that it could be worse because my form of the disease is minor in comparison. I used to believe this disease was a punishment for something I did wrong in life, but logically know that it is not. We all have negative moments in life and trying to push past those thoughts can be challenging, but also necessary. This disease does not discriminate and can happen to anyone.

It is always important to remember that no matter what we are dealing with in life, someone else is dealing with something worse. While I do detest MS, I do know that no of us will have to endure something that we cannot handle. Whether this is true or not, it does help me to keep moving forward. Plus, I did make my late grandfather a promise that I will never all this disease to get and keep me down.

Thank you for visiting my site today. I hope you have a wonderful weekend and you are able to recuperate from last week because I know it was a long week. I hope you found what I have shared today interesting and I look forward to reading your comments. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!

Always, Alyssa

First day of Multiple Sclerosis Awareness Month

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Not only are we halfway through the week today, but it is also the first day of Multiple Sclerosis Awareness Month. Of course, I am thrilled we are halfway through the week and that much closer to the weekend! How has your week been? I know there are still a few days left before the weekend returns, but is there anything you are looking forward to this weekend? This is out of character for me because I do not like or endorse violence, but there is a UFC fight happening on Saturday that I am looking forward to! The two fighters I am interested in watching are Jon Jones vs Ciryl Gane. Of the two men, I am hoping Ciryl Gane wins because Jon Jones has allegedly hit his wife, and I cannot support anyone who does this!

Normally, I enjoy writing about things during the awareness months because it is interesting and provides useful information to those reading, but this one is a little harder for me because it is not just one month out of the year this affects me. I must deal with Multiple Sclerosis 365 days a year, and it never gives me a break. It would be amazing to get a break from this disease, even if it was just for one minute, but it is something that refuses to take a break. Honestly, I do know it could be worst, and I have an easier form of it, but for lack of better words, it still sucks!

Anyone that has been following my blog for any length of time, already knows that I was diagnosed with Multiple Sclerosis when I was 19 years old, which was over 20 years ago. It was a difficult diagnosis at such a young age, but in a way, it was better because I was able to start treatment early. Regardless of when I was diagnosed or how thankful I should be that I was able to start treatment early, it was terrifying because I knew next to nothing about the disease. This is just my first post of the month about Multiple Sclerosis and I plan to do more each week with the information I have learned during the years having lived with this not-so-fun and unpredictable disease. I do hope you will find the posts I shared with information useful!

Thank you for visiting my site today. I hope you enjoyed what I have shared and I look forward to reading your comments. Please know that I will respond to all comments as quickly as I can. I hope you have a wonderful day and remember that anything that does not get done today, tomorrow is another day. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!

Always, Alyssa

Few days left of Multiple Sclerosis Awareness Month

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There are only a few days left of Multiple Sclerosis Awareness Month. March will be coming to an end, but unfortunately, those living with this illness still must endure the issues involved. There are always so many questions that come to my mind and none of them have any answers. Do I wish this illness had a cure? I would be lying if I said no because I wish with everything in me there will be a cure someday soon. Is this illness frustrating? Again, I would be lying if I said no because it is one of the most frustrating things in my life. Is there anything I can do to change things now? Of course, the only thing I can do is stay positive and take care of myself the best that I can.

There are many reasons Multiple Sclerosis is incredibly frustrating one is that I feel like I do not have control of it. Yes, I might have minor control issues. I like things to go according to a plan that makes sense and is clear. I hate not being able to control my body because of an illness that does not have a cure, yet. I do not understand why there has been so much research done and the only thing that changes is the medications being pushed out by the pharmaceutical companies. I know that many people in these pharmaceutical companies care more about themselves and their bank accounts than those living with this illness.

Another reason Multiple Sclerosis is extremely frustrating is that I must live in pain every minute of every day and that is exhausting! I woke up this morning with my back in so much pain it hurt more to lay in bed than get up but still was painful trying to move. Last night, I felt a migraine working its way into my head. The only thing I could do was go to bed and hope it would be gone in the morning. Unfortunately, the head pain was not gone, but it was slightly more manageable. Pain is awful to live with, but migraines are the absolute worst because it often feels like there is a sledgehammer pounding on my head!

Overall, I do loathe Multiple Sclerosis, but I know it could be much worse than it is. I guess there is a small part of me that is thankful for the type I live with. I do not and never will know what caused me to have this condition, but I feel like there must be a reason. When there are no explanations for things, I find it immensely irritating, and it makes me slightly angry. Considering I have always believed there is a reason for everything that happens in our life, I feel there must be a reason I have Multiple Sclerosis.

No matter how frustrating Multiple Sclerosis can be and how many times a day I want to give up, I made a promise all those years ago when I was diagnosed to my late grandfather that I never would surrender and would continue to fight. Sadly, I know there may come a day when I am unable to fight any longer, but that day will not come for many more years. I am far too determined to let anything, especially an illness control my life.

Thank you for visiting my site this afternoon. I hope you are having a lovely and relaxing day! I look forward to reading your comments and will respond as quickly as I can. The weekend will be coming to an end soon, so enjoy what is left of it safely! Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!

Always, Alyssa

Invisible Illness

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I have written about Multiple Sclerosis many times before and I have talked about it a lot as well, but neither of these can explain what it is like to live with it. Many people have heard Multiple Sclerosis referred to as the “invisible disease” and I supposed for the most part it is invisible. Of course, some people stumble because they struggle their balance, or they may have challenges to walk and are bound to a wheelchair or use a walker. These challenges are obviously visible because the person cannot and should not feel compelled to hide them. However, some try to out of fear of being judged. There was a time that I felt I needed to hide my illness because I know people talk and it is always about things, they know nothing about, but that is not my fault, and it is on them.

Out of all the issues Multiple Sclerosis puts on a person, many that are truly invisible issues to deal with. No one can feel the pain someone feels, which those with Multiple Sclerosis tend to face daily. I have mentioned before that I live in pain every minute of every day but try my best to hide it and not because I am afraid of what people may think. I hide the pain because nothing helps my pain ease. It does not matter if I explain how I feel or even cry about it, the pain will still be there. I am thankful that the pain I feel cannot be felt by those around me because I would not wish that on anyone, and it is not fair for anyone to experience it.

Another issue I deal with that is invisible is the neuropathy. The feeling of spiders crawling around on my legs and feet is only something I endure, and no one can see it. This is something that I feel daily and mostly it increases at night, but still there are times during the day I get experience this. Of course, my husband that is with me all the time can see it because I start getting fidgety and cannot stay still. Not that it helps but I will start rubbing my legs when we are watching TV or having lunch together. I cannot explain why I rub my legs or feet, but I supposed I am trying to make the feeling go away. My husband has even asked me if it helps or why I do it and I cannot explain it to him, I guess it is just a habit.

Stress causing my condition to deteriorate is not something anyone can see. Heck, I cannot even see it immediately, but will understand later what stress does to me. Stress can cause symptoms to worsen and potentially cause a relapse. Anyone that has Multiple Sclerosis or knows someone with it understands how bad a relapse can be and it is something that we all try to avoid. A relapse can be awful, but the actions taken to decrease the length of time one deals with them are typically by using steroids. For anyone that has been on a high dose of IV steroids, you know how terrible that can make you feel. I can admit that the steroids will make the relapse not last as long, I would prefer to not take them.

The only person that knows how exhausted I always feel is me. It is not something anyone can see, but I do see and feel it. I cannot even explain it to anyone because it does not matter how much sleep I get. I will wake up feeling like I have not slept at all and truthfully, I probably did not sleep well through the night. The pain and tingling will wake me or prevent me from falling asleep, but I still try pushing through the day like I have slept eight hours.

COVID introduced a new invisible issue to Multiple Sclerosis. Everyone had to deal with the normal things that came with COVID, but anyone that is on a medication that weakened their immune system had to be even more careful. Even after there were vaccines available, we had to determine how safe they were mixed with their medication. Being under isolation could make people feel even more isolated and nervous for what could happen if they got COVID. I know I was afraid that if I got COVID and being on Gilenya if I would survive. Anytime I left the house, I would wear a mask and be looked at like I was insane, but I do this because I refuse to gamble with my life.

I think COVID has made everyone feel like they are living under house arrest. My mother moved to Texas a few years ago and we did not see each other before she moved because of the fears of COVID. It is not that I do not want to see my mother, but I refuse to get on an airplane until COVID is gone and there are no new variants. I also do not want her getting on an airplane to come to where I live because I do not want her getting COVID or bringing it into my house. It is not easy dealing with this because she is my mother and I know she would get on a plane tomorrow, but it is not safe for either of us.

Considering March is Multiple Sclerosis Awareness Month, I thought it would be good to do a post about the invisible side of it. I understand why people would call it the invisible disease because much of it is invisible. Truthfully, I would prefer the balance issues I deal with to be invisible because I feared when I was diagnosed about being in a wheelchair and not that it is a bad thing. After all, it can happen. Although the pain is invisible, anyone that knows me can see how much I hurt.

Thank you for visiting my site today and reading what I have written. I hope this provides some clarification to the issues I deal with that are truly invisible and why I hide some of them. I am not hiding things because I am ashamed, but because it does not help. I do look forward to reading your comments because I know they will be insightful. I will 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!

Always, Alyssa

Frustrations of living with Multiple Sclerosis

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Living with Multiple Sclerosis has been challenging and frustrating at times. Yes, the disease itself is painful, but many do not understand the symptoms and how they affect daily life. If someone does not have the disease, they are not able to fully comprehend what it is like to deal with the symptoms. Even those that are closest to me and see me daily but do not suffer with the consequences of the disease have a difficult time knowing what it is like to manage. Many people I meet would not even know that I have Multiple Sclerosis because I look perfectly normal, but underneath the mask I wear is a battle with my own body. 

When your body manages to attack itself and you have no control over the symptoms, it can be challenging to explain to others that do not understand because they do not have to endure the difficulties. It is not easy when you have no control of how your body reacts to the pressures in life or even to just being awake. I have said to some that they would not understand unless they could live in my body for one day, but most could not handle it well at all.

One extremely frustrating symptom is the constant feeling of fatigue. It does not matter what time I go to bed or how much sleep I get (which is normally NEVER enough), the fatigue issue consumes my life. I can say that it does get worse as the day progresses and by about 1:00 PM I need a nap, so by the time my husband is ready to have dinner and watch a TV show I am spent and exhausted. I have explained this to him numerous times, but it does not register to him, and he continues to want to have dinner and watch TV or a movie later at night. I guess I can understand this because he does work nights, but I still think there needs to be some compromise and meeting in the middle.

Another frustrating symptom is the never-ending pain. Being in pain 24 hours a day, 7 days a week with hardly any relief is not easy. I try to ignore the pain, but there are times when it is extreme and overbearing, and I am unable to ignore it. Pushing through the pain when it is at the worse and it is hard to stand, or move is immensely demanding. Heck getting out of bed when I know what the day holds, is aggravating and irritating. It is not that staying in bed would help much because just lying in the bed, I still hurt! 

The issue with neuropathy is also a challenge. The feeling of pins and needles or spiders crawling around on my legs and feet is hard, especially because NOTHING helps. I am already maxed out on the medication that is “supposed” to help so how can I have hope for relief, when the medication that should help the neuropathy is not helping? I know it is best to believe things will improve, but it has been many years of this, and it is not coming to an end.

Thankfully, even though I do experience dizziness frequently, I have learned how to cope with it. I have learned that when I do get a dizzy spell, if I focus on a still object, it will help to get the dizziness under some control. However, when it happens when I am driving, it can be a little terrifying, but then I will focus on the lines on the road and manage to stay in between the lines.

I am sure there are other symptoms are not easy to handle, but the one I want to mention is the headaches/migraines. Out of all the other types of pain I endure, this is probably the worst and the only one that will have me in the bed for hours or at least until it gets better. Most pain is something we can learn to deal with, but headaches/migraines I have not been able to learn to deal with and I have been experiencing these since I was a child. I guess when the pain is concentrated on the head, it starts to affect the way we think and communicate.

I know that stress is my biggest enemy and not a friend to the Multiple Sclerosis. The only thing that stress does is make any symptoms with MS more intense. Right now, I am trying to get my medication that helps keep the MS at bay but going through the process and jumping through all their hoops is stressful. This is a medication that without the Gilenya Go Program would cost about $8,000 per month and that is not something any normal person can afford. Unfortunately, I only have enough medication to get me through until Saturday and then I am out. This medication has done well keeping the MS under control and being off of it will only cause me stress.

Thank you for visiting my site today. I hope you found this post helpful with understanding the frustrations of living with an uncurable disease. This post was meant to be a quick overview of the complications of living with Multiple Sclerosis. I would love the change to read your comments and will respond to all of them 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

Multiple Sclerosis Awareness Month Part 2

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March is Multiple Sclerosis Awareness Month and as I said in my post on March 3rd, I want to do a post about MS each week during the month. I know some information I have shared previously, but I do want to explain again what this disease is and the symptoms one might experience with this unpredictable disease. I also want to do my part in providing knowledge about Multiple Sclerosis to as many people as I can because it can easily be misunderstood or confused with other diseases. Please be advised that I am not a medical professional, but I am someone that has lived with MS for 21 years and has done countless hours of research.

Multiple Sclerosis is a potentially disabling disease of the brain and spinal cord. With Multiple Sclerosis, the immune system attacks the myelin, which is the protective sheath covering nerve fibers and causes communication issues between the brain and the rest of the body. In time this disease can cause permanent damage or deterioration of the nerves. Unfortunately, at this time there is no cure for MS, but medication can decrease the rate of progression.

The signs and symptoms can be different from person to person. No two people will experience the same signs and symptoms at the same time. Some symptoms that target movement are numbness and or weakness in one or more limbs, typically on one side of the body at a time. People may also experience an electric-shock sensation with certain neck movements. Others may suffer from a lack of coordination or unsteadiness.

A common complication with Multiple Sclerosis is vision problems. The issues with vision can vary from partial or complete vision loss, typically in one eye at a time. Others may have prolonged double vision or blurry vision. I remember when I was diagnosed with MS, I went to my eye doctor because I had lost vision completely in my left eye. Imagine being 19 years old going to the eye doctor thinking you are going blind and finding out the vision can be repaired, but you have a lifelong, incurable disease. It was a shock to my young mind, but I guess it was good news in a way.

Even though everyone experiences MS differently and deals with different symptoms, some common symptoms are slurry speech, problems with sexual, bowel, and bladder functions, fatigue, dizziness, tingling, and or pain in parts of the body.

I still have a few other posts I will be sharing about Multiple Sclerosis this month. I will be sharing a few reasons I get frustrated with this disease. I try my best to not get overly frustrated with others who do not understand or cannot comprehend the struggles I deal with, but I am only human and do get aggravated sometimes. I will also do a post to explain the different types of Multiple Sclerosis, so please stay tuned if you are interested.

Thank you for visiting my site today. I hope you are having a great and safe week. We have almost made it through this entire week and will be able to enjoy the weekend soon. Do you have any plans for the weekend? Whatever you do this weekend, please remember to continue to stay safe. I also want to remind everyone to continue keeping those living in Ukraine in your prayers. Unfortunately, the battle they are enduring is not over yet, but hopefully, they will find peace and safety during this tragic time. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!

Always, Alyssa

Midweek rain & pain

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Happy Wednesday y’all! We have made it through the first half of this week, so we are at the halfway point. How has your week been? I hope you are having a great and safe week. The past few days where I live have had on and off rain, which always makes me feel worse than normal. Of course, when I look at the weather there is rain for many more days this week. The only thing rain does is make my legs and feet, back, and head have more intense pain as if I need any additional pain!

I was planning to do another post about March being Multiple Sclerosis Awareness month, but with my pain being awful I have not been able to yet. Even though I see a lot of rain for this week, I am hoping to be able to do at least one post to explain a little about what Multiple Sclerosis is. Without going into too much detail because my pain is that miserable, I will say one thing about MS, it is the most unpredictable, frustrating, and painful thing I have dealt with in life. Most days I do not get too upset about it, but on the bad days, it feels like a punishment for something I am unaware of.

Recently, I read something about Multiple Sclerosis being more about environmental factors and nothing about our genes. Considering there is not anyone in my family that lives with this disease, I am starting to believe that to be true. I do know already that certain foods increase inflammation and with that being a huge issue with MS, I try avoiding these foods. *I will be explaining this further in another post soon*. I also know for a fact that stress makes issues with MS a lot more intense because it has caused me numerous issues. Weather is another challenge with this mean disease. With all seasons and temperatures changing, my body feels it and does not adapt quickly. Even though I enjoy the sound of rain when I sleep, rain has become one of my enemies!!

Thank you for visiting my site today. I am sorry I was not able to do a more thorough post regarding Multiple Sclerosis Awareness Month, but I do promise I will do one before the end of this week. I hope you are doing well and having a lovely week. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!

Always, Alyssa

Multiple Sclerosis Awareness Month Part #1

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March is Multiple Sclerosis Awareness Month, which provides an opportunity to share information about this illness. Those of you that have been following my blog already know that I have been living with Multiple Sclerosis since I was 19 years old, so it has been 21 LONG years. Of course, I am not a medical professional, but I do know the challenges that come along with this illness. I plan to do a few posts about Multiple Sclerosis because there is a lot of information that needs to be understood. My first post about this will be simple, but hopefully it provides some information for you.

Muscle weakness

Unpredictable

Long-last disease

Tingling

Insomnia

Pain

Laborious

Exasperation

Sensitivity to heat

Central nervous System

Let downs

Equilibrium

Relapse Remitting

Offensive

Stinging

Irritating

Sharp

During the rest of this month, I will do a post about the types of Multiple Sclerosis, symptoms, different medications, and various challenges. If anyone has any questions about this illness, I would be happy to answer them the best I can. Again, I am not a medical professional, but have a lot of knowledge I would be happy to share with anyone that wants to know.

Thank you for visiting my site today. I hope you found this post interesting, and you are looking forward to my future posts. I would love to read your comments and will respond as soon as I can. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!

Always, Alyssa

Beat The Heat

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As y’all already know March was Multiple Sclerosis Awareness Month. Even though March is almost over, MS for me and everyone else living with this illness will continue to battle with the challenges that come along with it. With that being said, I do want to share a few additional posts to further explain the struggles that Multiple Sclerosis creates.

One thing common with those with Multiple Sclerosis is heat intolerance. Simply taking a hot shower, spending too much time in the sun, or possibly making a hot meal because the stove and oven can make the kitchen extremely hot. The reason people with MS are sensitive to heat and temperature changes is that MS causes nerves to lose their conductive coating, which is referred to as a myelin-sheath.

Heat issues may cause a person with MS to have an escalation of symptoms such as dizziness and/or increased heart rate. I am going to share 6 tips that may help you to defeat the brutality of the heat enemy. Some of these tips might seem like common sense, but they are important to mention, or at least I think it is.

Stay Inside:

Logically, this makes perfect sense, but the warm summer months are closing in on us relatively fast and this needs to be very well understood. Staying inside with the air conditioner or at least fans may contain MS symptoms. Be sure to pay close attention to the forecast and avoid outdoor get-togethers when it is too hot. It will be much better for you and your health to stay inside when the temperatures and humidity increase because you do not want the symptoms to get too awful.

Utilize Cooling Products:

There are numerous cooling products available online and in stores. The MS Society has cooling vests, wrist, ankle, neck, and head cooling packs. These are fantastic cooling packs that can help you to tolerate the heat and even make picnics possible. Something as simple as a cloth dipped in cold water and applied to your head can make a remarkable difference in the way you feel.

Ice Cold Beverages:

On those insanely hot summer days, there is nothing better than ice-cold water with or without lemon. It is amazing what powers and benefits can be had with liquids. Aside from an ice-cold beverage, you may also experience relief from popsicles, ice cream, or frozen yogurt. To save time walking to the kitchen at night and searching for something cold to drink, try freezing a bottle of water and place it beside your bed. This will provide you the much needed cool down without leaving the comfort of your bed.

Cool Down in the Pool:

As the temperatures start increasing, spending time in a pool when possible can give you the cooldown needed. Not only will a pool help you cool down but provide you with some exercises that can be done easily and without high impact on your body that might cause you extra pain. For additional cooling powers, keeping your wet swimsuit on after leaving the pool can be wonderful because it will also keep you nice and cool!

Plug in a fan or fans:

The fan you use does not need to be high-tech or fancy to offer you cooling benefits. A simple oscillating fan that is easy to move to other rooms can provide you great and fast relief from the evil heat. A ceiling fan helps to circulate air, which can give useful relief from the heat as well.

Lighten Up Clothing:

It can be astounding how our choices of clothing can make a considerable difference. Thinking in layers of clothing when we get dressed might serve you as a benefit. Dressing in lightweight and easy to remove clothes allows you to remove layers, as necessary.

I hope the information provided in this post was helpful for you. In the southern state that I live in, I can speak from experience on how awful the heat makes me feel. It typically starts getting a little too hot for me in April and previously when I did leave the house, I would be overheated just walking to my car. A few years ago, I did reach out to the National Multiple Sclerosis Society and they sent me a few cooling products that are phenomenal, and I am thankful to have them. Of course, over the past year, I hardly leave the house, but hopefully, things will become safe again soon.

Thank you for visiting my site today. I know I have been a little off with my typical posts, but life and fatigue sometimes get in the way. I would love the opportunity to read what you thought about this information and will do my best 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!

Always, Alyssa