Category Archives: Medication

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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Tuesday is progress

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Happy Tuesday, y’all! Surviving a Monday should make Tuesday seem easier, right? All I can say is, I sure as heck hope so because my day yesterday started off stressful. It was not anything that should have happened because I have been doing everything I needed to do regarding Gilenya, which is the medication I take for Multiple Sclerosis. I would not be as stressed if this medication was something affordable to a normal person, but this medication without the Gilenya Go Program would cost over $8,000 per month. This kind of price for a medication that is necessary to keep this unpredictable condition at bay is ludicrous.

After how stressful my week began, I am hoping today will be easier and far less stressful. Hopefully, my doctor’s office will get the things done they should have already done today and the medication I need will be shipped out to me. How was your day yesterday? I do hope your week started better than mine and that you have a great day today!

We made it through the hardest day of the week, so let’s hope the next few days go well for all of us. I would like to share a quote with y’all and hope that it helps you to view life in a better light. I really enjoyed this quote, so I hope it will bring a smile to your face. I think it is just a nice note to begin the second day of the week.

Thank you for visiting my site today. I hope you enjoyed what I have shared and the quote offers you peace, and good thoughts for the day. I am looking forward to reading your comments and 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!

Always, Alyssa

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

Let It Go Friday

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I am so happy to finally be able to say, HAPPY Friday, y’all! I hope you have had a good week and your weekend is filled with nothing, but joy and relaxation! When our weeks start to feel longer and we look forward to Friday on Monday morning, the weekend should be spent only doing what we want. I have been feeling a little more fatigued lately, which I assume has something to do with the weather being unpredictable and frustrating. It seems like Mother Nature cannot decide if it is going to be spring, summer, or winter like it should be. I did take a short break from the paper I am writing for the competition but need to get back to it and I hope to do that this weekend!

I always think that Friday being the end of the week, is a good time to let go of any negativity caused by the week. There is NO use for us to carry negative emotions into a weekend that is already too short. People often know how to push our buttons and stir up negativity, but sometimes the best thing to do is to walk away to avoid saying anything you might regret. I think the quote I am sharing today is one of the best pieces of advice anyone could get or give. A long time ago, my husband told me his grandfather would tell him, to keep his mouth shut and his eyes open. This has always stayed in my mind because it was the BEST advice, so when I came across this quote, I had to share it!

What does your weekend have in store for you or are you just going to take it easy? Honestly, I think after a long week, taking it easy and having nothing planned sounds perfect. The medication I must take to keep my Multiple Sclerosis at bay is very costly, if it were not for the Gilenya-Go-Program. I have been dealing with them for over a month and think I finally got things handled yesterday. They claimed they did not receive the fax I sent them last month, so I sent the paperwork via UPS mail, which can take a long time. They finally received my paperwork but said they did not have the information from my doctor. Of course, I was frantic and sent my doctor an email and they “claimed” they would get it faxed. We will see!

Thank you for visiting my site today. I hope you enjoyed what I have shared and the quote resonates with you. I look forward to reading your comments and I will respond as quickly as I can. I hope you have a wonderful and relaxing weekend! Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!

Always, Alyssa

Appointment Update and other thoughts

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I was unusually nervous about my appointment today with the Neurologist. I always worry they are going to give me the bad news and that the MS is progressing. It is always something that weighs on my mind and remains in the back of my mind. I know it is irrational, but it is a concern that I live with. Thankfully, the appointment went well, and the PA does not think the MS is progressing. She understands that the issues I am experiencing are worse than they have been, but it is something we will be working on. There is another medication she would like for me to try to help the neuropathy pain, but I am not sure I am completely comfortable with it. She also mentioned a therapy that might help with the increased dizziness I have been dealing with as well.

The medication the PA would like for me to try for Neuropathy issues is Lyrica. If anyone reading this has tried this medication, please let me know how it worked for you and if it is worth trying or if I should not bother. I am a little nervous to try different medications and other neurologists have recommended this before, but I refused. Yes, I know I am stubborn and sometimes we must take chances.  I would love to read your opinions on this!

I know the reason I did not sleep well last night is that my nerves were out of control. Crazy how being nervous about a simple appointment can keep you up at night or just not allow for a decent night’s sleep. Of course, I did wake up before the alarm went off, but I did wake up to good news! I do not live in the state of Georgia, but I was focused on the senate run-off election in the state. I was not and never will be a supporter of Herschel Walker because every word that came out of his mouth was a lie. Please excuse me for my next comment, but I did not think someone could lie more than the former President, but Herschel Walker proved me wrong on that!

I am not foolish enough to think any politician is honest, but to hear Herschel Walker speak his lies was offensive and a complete disgrace to the American people. I know how controversial abortion is and everyone has an opinion, but if you have already paid for several, you are obviously not against it. It is hard for me to support any politician because I think honesty is important, but it seems to be a lost personality trait in way too many people. Sometimes it might be hard to be truthful about things and it takes a strong person to overcome this, but it is critical to be truthful!

Is it just me or does it seem like people have lost the ability to be understanding and kind to others? This is something that bothers me tremendously because I feel that people should always be kind to one another. It does not matter if we agree with each other because we are never going to always agree with everything another person does. We are “supposed” to be living in a free country, which to me means we are entitled to our opinions. I know that I am firm in my beliefs and will not allow anyone to change my mind, but I also do not try to change how someone else feels.

Thank you for visiting my site today. I hope you have enjoyed what I have shared, and I do look forward to reading your comments. I will also appreciate any thoughts you may have about Lyrica. I hope you are having a good day and your afternoon is amazing! Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!

Always, Alyssa

Toxicity in The United States

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The United States has been suffering from mass levels of toxicity for decades. Unfortunately, there have been and continue to be numerous issues that are engulfing most of us living in the United States. These toxic behaviors and thoughts are seeping into the rest of the world daily. The catastrophic events and issues Americans have faced end up being shown on the news for the entire world to view, which is shameful and a complete disgrace. It is tragic as an American to know about the devastations we are enduring, mostly due to those with bad intentions that are full of anger and hatred. Sadly, many have become desensitized, and the pain others are experiencing does not cause them any distress☹.

One issue that appears much worst in the United States than in any other country is gun violence. In other countries, when there was one case of gun violence, the country took the proper measures and banned guns for everyone. In the United States, you are unable to watch the news or read articles on any news outlets without seeing about shootings with or without casualties. There have been numerous school shootings in the United States and this needs to stop. Children and teens should never have easy access to a gun of any kind. If a parent or another adult in the household chooses to have a gun, they should take necessary safety measures.

Many Americans seem to believe because it is the 2nd Amendment is the right to bear arms that everyone deserves to own a gun, but there need to be more laws that are followed. We do not have to be in war times with each other or anyone else. There also needs to be more education involved regarding the purchase of a gun and gun ownership. An individual who has mental health issues and is a threat to themselves or others or has a criminal record should not be able to own a weapon, which I know is already a law, but it needs to be enforced much better. I do know of at least one person that has a criminal record of violence and the person was able to not only purchase a gun but was also given a concealed weapon permit.

Another major issue that seems to be much worst in the United States is the opioid crisis. I have wondered why this seems to be the case and what I have discovered was not too surprising. The people that are to blame for this crisis are the greedy pharmaceutical companies pushing the dangerous and addictive medications, the doctors who are overprescribing these drugs, and the drug dealers who are selling fentanyl. Of course, many people are suffering from chronic pain due to illnesses or are gravely ill due to cancer. Unfortunately, some are addicts and careless. The overdose death rate in the United States is twice as much as in any other country in the world. Preventable opioid deaths are occurring among individuals between the age of 25 to 54. The overdose deaths of those older than 55 are increasing rapidly. The drug dealers that are pushing the extremely deadly drug fentanyl are out of control which has been the cause of 80% of the overdose deaths in 2022.

A very controversial issue in the United States is abortion. This was a legal action for women for almost 50 years. I am not saying that I am pro or against abortion, but I am pro-freedom. This includes for a woman to have the freedom to decide what she does with her own body. You can probably say that I am pro-choice! If a woman gets pregnant after unprotected and consensual sex and can admit she does not have the means to provide for a child or she is raped and decides she cannot carry her rapist’s child, it is her body and her choice to terminate the pregnancy. If the United States wants to continue saying we are a free country, then a woman should be free to her body. Doctors and the government should not be in control of a woman’s body in a free country!

Mental health has been a critical issue in the United States for many decades. There is a very negative stigma that surrounds mental health causing people to feel shame and afraid to try getting help. Even when a person decides they want help, there are limited resources for them to do so. Once they can locate a facility that offers the help they desperately need, the wait list is so long, and the expenses are too high causing them to give up. We need more places to be readily available and affordable to help those who are suffering silently from mental health issues. We need to find ways to remove the negative stigma and be more open to anyone with mental instabilities. This could be a solution that may prevent mass shootings and suicide.

The United States is the only developed country that does not offer free healthcare, but instead, the cost is on a steady and consistent rise. The increase in the cost of healthcare in 2022 was 6% and is expected to increase another 5%. This is ludicrous and unacceptable! The United States is the wealthiest country in the world by a long shot. With this fact, why can healthcare not be a free right for everyone? So many people cannot afford healthcare in America and therefore are left to suffer from ailments and diseases. Even those with expensive healthcare still nearly can go bankrupt due to all the other costs. In a country with outlandish wealth, no human being should ever have to suffer from illness or disease without affordable healthcare.

In my entire 41 years in the world, I have only lived in the United States. I have lived in the northern and southern states, so I do not know if equality is an issue in other countries but do know it is a major issue in the United States. People are judged and treated differently based on where they are from, the color of their skin, religious beliefs, political following, and who they love. None of this makes sense to me and never will. We are all human beings and while I do have my strong views on certain things, I do not judge or think negatively about how others view things or how they live their lives. I only judge and feel a certain way about others based on how they treat other people. I wish everyone from sea to shining sea could learn ways to express love and acceptance more because hate is only going to destroy the planet, we are sharing.

As broken as the country and system appear, there must still be hope for it to be better. The good and honest men that fought for this country many years ago should not have risked their lives in vain. Mine and my husband’s late Grandfathers were a couple of these amazing, strong, and kindhearted men who fought for this country. Their risks along with countless others should be remembered and we should be doing better for people like them and stop the evil hatred the world is conflicted with. Hatred and misery will never do anything positive for anyone, but they will damage the people we love.

Thank you for visiting my site today. Even though what I have shared was emotional and safe, I do hope you found it interesting. I am aware not everyone is going to agree with every word of this post, but this is how I feel about things in the country I live in, and it breaks my heart. I wish the world could be filled with love and compassion, but I do not have any control over how others behave and can only control myself. We do not have to agree with our family or friends, but we need to be respectful of their feelings. I am looking forward to reading your comments and 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! 

Always, Alyssa

Quick Sunday Thought

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Sunday is “supposed” to be a day to relax and get ready for the week ahead of us, right? Unfortunately, I woke up early this morning with a killer headache/migraine. I am not sure what caused this to happen, but it has left me thinking the “daith” piercing might not help these. I do tend to get sick with a cold or something like that every time there is a weather change, which could explain the body aches and head pain. Needless to say, it was not a good Sunday for me at least.

It did not help that my pain doctor screwed up and NEVER called my refill in for today like she was “supposed” to. I called the pharmacy on Friday afternoon to follow up and ensure the Nurse Practitioner did what she was supposed to. When I learned the Nurse Practitioner did not call this in, I did call the office and was told they were taking care of it. They did NOT! Sadly, we need to make sure our doctors do what they are supposed to, especially with our medications, but I guess it is what it is! I am unsure if this is just an issue with medical professionals in the United States or if it is worldwide!

I hope you have had a nice and relaxing weekend. Do you have issues with your doctors or Nurse Practitioners not doing what they are supposed to do? How do you handle these issues? I already left a voicemail for my doctor’s office to let them know their so-called care is unacceptable. I am not sure they fully understand what it is like to live life in constant pain because if they did I am sure they would not be so incompetent and inconsiderate.

Thank you for visiting my site today. I am looking forward to reading your comments and I will respond as quickly as I can. I feel confident that most of you understand my frustration with my doctor’s office, so I would love to know how you would handle things. I try to always be polite, but I think that seems to make them think I am a pushover and they can screw up. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!

Always, Alyssa

Heat, Headaches, and MS Hug

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For the past several days I forced myself through my workday and the things that I had to do. Unfortunately, I was unable to do any posts, work on my essay for the writing competition, or read because I have been battling a headache that seemed to be never-ending. Anytime I thought it was improving, I was proven to be incorrect when the massive pounding in my head returned with a vengeance.

Many of you reading this post today and may have visited my site before are already aware that I have Multiple Sclerosis. Anyone new to my site, thank you for taking the time to visit and I hope you will return. I enjoy writing about various topics and hope you will enjoy what I write about as well.

I have lived with Multiple Sclerosis for over 20 years, so basically more than half of my life. Over all these years, I have had numerous challenges, setbacks, disappointments, frustrations which fueled stress, and enough tears to fill the ocean. The one thing I have not experienced is giving up and letting MS control my life.

One of the main reasons why I refuse to give up is I made a promise to my late grandfather shortly after my diagnosis that I would always continue to try to move forward, and I would never surrender to MS. Although he has been gone for almost 9 years, I will continue to keep the promise I made to him. It might help that I am also extremely stubborn and obviously a born fighter, just not the violent type of fighter😊!

During the 20-plus years of living with MS, I have dealt with vision impairments, numbness, various forms of pain, stress from the harshness of symptoms, fears from potential disease progression, changing and deciding the right medications, relapse, neuropathy, doctor’s appointments, dizziness, and much more. Most of my pain does not prevent me from living my life and I just push through it and try my best to ignore it. After all the years of experiencing head pain, I am still unable to tolerate it. Unfortunately, it does not matter how many headaches I have already had in my life or how often I battle with them in any given week, the headache always wins our war.

There once was a time when I had a headache, I could take Advil and lay down with an ice pack for an hour or so and the headache would be gone. I wish I could explain how much I miss those days! Unfortunately, over the past few years, nothing provides me with any relief. Although I had many reservations, I ended up trying everything my doctors recommended, but they were all a complete waste of time and money because they did not help. I have tried combinations of over-the-counter medications, such as Advil, Excedrin, and Sudafed, which have helped more than anything else.

Over the past several days, not only was I dealing with the headache straight from hell but the invasive tight band feeling also known as the “MS Hug” visited me. The only good thing about COVID was social distancing, but I guess the MS Hug did not get the memo. I am just speculating, but I think I am experiencing the tight band feeling because of stress, the insane heat, or a nasty combination of the two.

This outrageous and uncontrollable heat is my enemy because it always causes me to feel awful. Over the weekend, I had to run out to two different stores and when I finally made it back home, I told my husband I am not leaving the house again during the day until at least November. I am pretty sure if the temperatures get any hotter, it will be the death of me. I do understand that this massive heat is being felt all around the world, and I do not think anyone can say global warming is not real anymore.

How are y’all handling the incredibly dangerous heat? One thing that I believe helps is to stay hydrated. I have four different stainless steel insulated water bottles. I fill the bottles about a quarter of the way with water and put them in the freezer. This makes it so I always have ice-cold water handy! I strongly recommend them, especially during the summer months. These stainless-steel insulated water bottles are very affordable on Amazon and there are any colors you can think of😊!

Another thing I recommend during these HOT summer months is if you must leave the house, start your car, and let the A/C run for a few minutes. It is never a good idea to try driving when you are hot because you could get overheated, which can cause you to feel dizzy and faint. The heat can do some terrible things to our bodies and minds, so it is best to do everything we can to stay as cool as possible.

Thank you for visiting my site today. I hope what I have shared was helpful for you. If you have any other suggestions regarding staying cool with these drastic temperatures, please share. Also, if you have experienced the evil MS hug, is there anything you do that helps? I am looking forward to reading your comments and I 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

Multiple Sclerosis Pain

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Each person that lives with Multiple Sclerosis will have a unique journey, as this illness impacts everyone differently. I believe this is one reason why it is often referred to as the “snowflake” disease. The symptoms are vastly different from person to person, and we all handle the symptoms in our way. Of course, each symptom is frustrating, but some can be much easier to tolerate or even get used to. 

For over twenty years, I have battled with Multiple Sclerosis. When I was diagnosed, I was young and did not have extensive knowledge regarding the disease I would be forced to live with for the rest of my life. I was terrified, angry, sad, confused, and everything in between with the diagnosis because of what I did know about MS. I knew MS did not have a cure and it could be extremely unpredictable and there was a possibility to become disabled. Given my age, I was naïve and could not see any hope for my future, which made acceptance almost impossible.

Over the last two decades, I have experienced many different symptoms that had a variety of challenges. For instance, the first and only symptom I had was optic neuritis. This is commonly one of the first symptoms of MS. Optic Neuritis is a temporary problem. When the optic nerve is inflamed it can cause pain and partial or complete vision loss. Typically, this issue gets better on its own, but some cases require steroid medication to reduce the inflammation. 

During the early years after being diagnosed, I went through several frustrating days. Accepting the doctor’s diagnosis was painful and emotionally draining. Every appointment would start with me being argumentative and dismissive of anything the doctor said but would then end in tears. I could not fathom why I had this condition or why my life had to be altered so drastically and at a very young age. The truth is, I have always been a strong-willed person who could take care of herself without any help! I’ve never wanted to rely on anyone for help and was scared I would have to at some point in my life. 

The other frustrating part was deciding on a medication to slow down the progression of the disease. Back then my choices were limited to injections. I have never had an issue with needles but did not think there would be a way to give myself a shot. Even though I hated the options offered, I decided to try one that was three times a day. Unfortunately, after successfully giving myself a shot Monday, Wednesday, and Friday for a few months, the miserable side effects became too much for me to handle and I started slacking the medication, which made things worst. My first Neurologist was a sweet elderly man who has patience for days. He knew my fears, so to convince me to decide on another medication, he used my fears against me. It was a ruthless way of forcing someone to decide, but it did work. 

Of the various symptoms involved with MS, I did not suffer from pain in my early years. Unfortunately, during the past ten or so years, my pain issues have become increasingly more problematic. There has not been even a second, I have not experienced at least one form of pain. Considering it has been going on for so many years, there is a HUGE part of me that expects it and I can manage. Before I had MS, there were many types of pain I did not know existed. 

Through the rest of this post I am going to explain the different types of pain I deal with 24 hours a day, 7 days a week without a break in between. The reason I am doing this today is that my pain levels have become more intense and now in addition to all the other pains, my right shoulder and arm hurt so bad I can barely move my arm. I know my pain has become worst because of the incredible amount of stress I am under, which I am assuming is why my right shoulder hurts too. 

Although everyone has a different experience with MS, pain is a common symptom. Pain affects approximately two-thirds of people with MS worldwide and can impact their daily activities such as work and recreation, moods, and the ability to enjoy life. Most pain is a direct result of MS and is caused by damage to the nerves in the central nervous system. There are other forms of pain due to changes in the body due to MS, which could include experiencing weakness in your arms and legs, which forces you to walk differently causing pain in the back and hips. 

Neuropathic pain stems directly from damage to the nerves in MS. Pain from weakness, stiffness, or other mobility challenges is thought to be Musculoskeletal pain. Neuropathic and musculoskeletal pain can be acute with a rapid onset and short duration or chronic, which starts gradually and stays persistent. 

Neuropathic pain is miserable and, in my experience, not much helps ease the pain. This occurs due to “short-circuiting” of the nerves which carry signals from the brain to the body because of damage from MS. The pain sensation feels like burning, stabbing, sharp, and squeezing. The best way for me to describe this is, that it feels like spiders are having a constant dance party on my legs and feet. Neuropathic pain can be acute and chronic. 

FOUR TYPES OF ACUTE NEUROPATHIC PAIN

Trigeminal Neuralgia- stabbing pain in the face or jaw area. This can be misinterpreted as dental pain. Most often it is unpredictable, so we do not know when it will occur, but it does come and go.

Lhermitte’s Sign- is a brief stabling, electric-shock sensation that runs from the back of the head down the spine and possibly into the arms and legs. This can manifest by bending the neck forward. It typically means there is or has been damaged to the cervical spine from MS.

MS Hug- is a squeezing sensation around the torse. This feels like a snake is wrapped around your body and refuses to let go until it takes the breath out of you. An MS hug is the kind of hug no one wants and is an invasion of personal space!

Paroxysmal Spasms- is a periodic and painful tightening of muscles. For instance, this can happen in your arm or leg several times throughout the day and night.

Chronic neuropathic pain is normally the continuance of acute pain. This is unpredictable and may be experienced daily. Several issues can increase the likelihood to experience this pain, such as stress, fatigue, illnesses, and becoming overheated. 

Musculoskeletal pain with MS occurs because of weakness, stiffness or coordination struggles that change your walking or other mobility. This is often seen in the hips, legs, arms, and normally when muscles, tendons, and ligaments are immobile for a long period of time. 

Headaches and migraines are other common symptoms of MS. Although I deal with numerous other forms of pain daily, I am unable to tolerate migraines. These put me in the bed with an ice pack for hours and often even when I try to sleep them away, they are still present when I wake up. I have dealt with pain for many years and it never gets easier, but I also know crying or giving up does not fix the issues. I just try to keep pushing forward the best I can. 

Thank you for visiting my site today. I hope you found what I have shared interesting and that it helps you with anything you are experiencing. I hope you have had a safe and relaxing weekend. I am looking forward to reading your comments, which I will respond to 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

Good News, Finally!

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Hello and welcome to Saturday! Hopefully, you will have a nice, relaxing, and safe weekend! There are so many challenging and disturbing things happening in the world today and unfortunately, many of these challenges feel like they will not end. Ukraine is still under siege, but the people are staying as strong as they can. I admire the Ukrainian people’s determination and their President’s strong will to stand for his country. We all need a leader that has hope, loyalty, faith, and strength in the country they represent. I know I have said this in all of my posts recently, but please continue to pray for those in Ukraine because they need as many prayers and hope as we can offer.

After several days of being stressed about getting the medication needed to prevent my Multiple Sclerosis from progressing, I finally heard from the Gilenya Go Program yesterday morning. I was terrified I was going to be forced to go without the Gilenya for an extended period, but thankfully I am going to be receiving it on Wednesday. Missing three days of this medication will not cause too many issues, so my stress levels have decreased somewhat. I am fully aware of how bad stress is for everyone, but it causes me to experience unwanted relapses.

What do you have planned for the weekend? As always, I do not have anything super exciting planned, but I will be working on the essay for the writing contest and the short story I have been working on. I also have a few posts that I want to finish before the weekend is over. I am wanting to finish the book I have been reading by one of my favorite authors, James Patterson. I find James Patterson’s writing to be inspiring and amazing. If you were able to meet one author, would you want to meet? I think it would be amazing to meet and chat with James Patterson because I would love to understand where his thoughts and processes come from.

Thank you for stopping by my site today. I hope you enjoyed what I have shared, and I look forward to reading your comments. I promise to respond to all comments as quickly as I can. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!

Always, Alyssa