Living life with a chronic illness is definitely not easy. But I do my best to push through all the barriers this illness puts in front of me! In my heart and mind, I believe maintaining a positive outlook on all situations in life will carry us through to much better times! I hope you find the information that I provide both helpful and inspirational!
It is late Sunday afternoon, and the weekend will be ending too soon☹, but I do hope you have been able to enjoy the weekend as much as possible. For reasons that I am unaware of, I had low energy this weekend. I tried doing as little as possible, so I would be ready for the workweek beginning tomorrow. Of course, I did a few loads of laundry because it had to be done. I had every intention of finishing a blog post that I have been working on for a few days, but I was unable to finish it yet. However, I do promise that I will get this post done soon because it is an important topic to me. I will give you a little information about what I am writing about, as this was inspired by my cousin, whom I am not close to all, but the post will be about family dynamics.
How do you recover from a long week, and the changes with the weather? I know the weather always causes me issues, which I blame on Multiple Sclerosis. I do not like the warmer weather and the temperatures have already been too high for me and it is not even summer yet! How crazy is it when the temperatures have already reached the HIGH 80s? This tends to worry me about what to expect for summertime. There are many things I do not understand about Multiple Sclerosis, but one of many is why changes in the weather cause so many problems. I mean, one would think living with an incurable illness that is also unpredictable would be enough of a punishment, but of course, not because then the weather wreaks havoc on my body!
The good news is that next week, in the United States, we are going to have a 3-day weekend! I am thrilled to be able to have three days off work because I need this, and I am sure many others do as well! Please do not get me wrong, I do enjoy my job, and even though I will end up saying three days off was not enough, I am looking forward to the days off! I think it would be amazing if we could work four ten-hour days every week and get three days off😊! I think it would provide a better work-life balance. I say this, but I also think it would be better to have animals run the country because they are fair and loyal. Animals care about and love others more than most humans do, so I think it would make for a better world. Heck, my cats would do much better than any president we have ever had!
Thank you for visiting my site today. I hope your weekend has been amazing, and that you have enjoyed what I have shared today. I would love to read your comments, and I will respond as quickly as I can. Of course, I am not feeling myself right now, but I will still do my best. I know the weekend was short, but I hope you are ready for the new week to begin tomorrow. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!
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.
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.
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!
Happy Saturday, y’all! After a long and frustrating week, how do you want to spend your weekend? With today being the first day of the weekend, all I wanted to do was sleep in, but that did not happen. It was not just the way things typically go by waking up at the same time I normally do, and was much worst than that. For the past two days, the pain in my legs and feet has been at a miserable high. I have not been able to get comfortable and sleep well, which makes me feel abnormally tired and irritated. I know things could be far worse, but Multiple Sclerosis often feels like a punishment for something I did in life, and no matter how many times I apologize, it does not end! I guess it would help if I knew what the punishment was for.
I think our lives are nothing more than a series of events that help to shape us and build our strength. I am not sure who said that we are not given more than we can handle because I think they may have been incorrect or overly optimistic. Of course, for the most part, all the challenges we face in life do not kill us, and maybe they make us stronger, but when does it end? When have we endured enough struggles and hardships, and can have even one day that is easy? I know we were never promised an easy life, but I think we should be able to have a short break from pain and struggles!
Do you feel you always have to be strong? Do you feel you must stay optimistic because if you do not, that would mean you are weak? Do you always have an authentic smile on your face, or is that smile often fake? Why should we have to pretend we are okay when we are crying on the inside? I think that it should be okay to not be okay all of the time, this does not make someone weak, but stronger. Admitting we are in pain and need a little help makes us human. We all try to pretend everything is okay and that life is perfect, but if we were being honest with ourselves and everyone else, we would admit we are perfectly imperfect humans, and that should be okay!
Thank you for visiting my site today. While this is not the most positive post I have done, and I do apologize for that, I am being honest. When someone is in excruciating pain and they understand it may not end, why is it not acceptable to just admit it? Accepting something unpleasant in life is the first step, and you can only go up from that point on. I hope you enjoyed this post, and it may have resonated with how you are feeling. Please understand, even though it may seem like it, you are not alone. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!
Monday has returned and way too soon! Does it not seem like it was Friday a few hours ago or is it just me? I hope you had a great and relaxing weekend and that you are ready for the new week to begin. Is there anything that you are looking forward to this week, besides Friday, of course? I will be spending my morning dealing with Gilenya again and hoping they have been able to get things situated because, after tomorrow, I will be completely out of my medication, which is not good at all! If I have to, I will drive to my doctor’s office and demand they make this issue right! No one should ever have to go through so much just to get the medication they need.
Although I am sure I am not the only one that is not ready for the new week, we do not have a choice because it has started. I do believe we must begin each week with a motivated and positive mindset. I hope the quote I am sharing with you will provide you with what is required for the week ahead of us. Instead of feeling rushed to take care of everything right away, we should take things slow and one at a time. With that said, just look at one issue at a time and the rest of what you need to do will work out! This is what I have to remind myself of when I am battling with doctors and insurance!
Thank you for visiting my site today. I hope you enjoyed the quote and it helps you to get motivated for the week ahead of us. Hopefully, you have a nice start to the week and it continues to get better. I think I am going to need a miracle today for the medication issue to be corrected. I am looking forward to reading your comments and I will respond as quickly as I can. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!
There are many things we never go without in life that we might wish we did not have to encounter, such as pain, struggles, disappointments, loss, and stress. However, many things in this life are amazing and we treasure them, such as love. No matter what struggles we endure in life, it is always important to remember that you can get through it and the bad times will not last forever. I do understand how difficult it can be to go through hard times that seem like they will never change, but during the struggles, it takes determination and resilience before you see the light of the wonderful days again.
The past few weeks have been stressful and extremely challenging, but I have always refused to give up and surrender to them. We must fight through the bad days or weeks and eventually, things will change for the better, or at least that is what I must keep telling myself. Yes, I have been VERY angry with my doctor’s office because the medication that I take for Multiple Sclerosis has been a lifesaver and kept the disease from progressing, but if I allow myself to let the stress control me, no medication in the world can prevent the disease from progressing because stress is the #1 killer in the world.
The weather has cleared up, but it is still dreary and chilly. The best way to spend the last day of the weekend is nice and comfortable on the couch with my sweet cats and under a heating blanket. The heating blanket has been somewhat helpful with the massive leg pain I am dealing with today. I am 99% sure the leg pain is due to the rainy weather and because I have spent days cleaning the house. Some might think that I am insane, but cleaning helps me to relax and recuperate from weeks of stress.
Thank you for visiting my site today. I hope you enjoyed what I have shared, and the quote resonates with you. How did you spend your last day of the weekend? I am looking forward to reading your comments and I will respond as quickly as I can. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!
Hello Sunday and the last day of the weekend☹, y’all! I knew it was going to be a rainy day, but what I did not know was how much my legs were going to hurt today. Of course, we lost an hour of sleep due to what I believe is the last time we will have to time change, but my cats were unaware of this and started to wake me up SUPER early. The older cat started walking all over my legs at 6:30 AM and it hurt more than normal. I think today is going to have to be a lazy day and I will not be doing anything strenuous. How are you planning to spend your day? What do you think of time change?
This is not something any of us should be thinking about because we do have the rest of the day before the workweek begins. Of course, I am always thinking ahead of time and am already planning my day tomorrow because it will involve dealing with the Gilenya nonsense again! I am hoping that things will go better with the MS medication tomorrow because I cannot deal with any more stress involved with this situation. I do think I am going to start today to try to find out if there are any other good neurologists where I live.
Do you enjoy rainy days? Honestly, I would much prefer to have rainy days when I am not working because it is an excuse to not do anything! Rain always increases my pain level. On the pain scale, my normal pain level hovers around a 4, but when it is raining it pushes up to around a 9. While I write this post, my pain level seems to be well past a 10. Unfortunately, there is nothing that helps the pain, so I just have to deal with it and not let it get me down.
Thank you for visiting my site today. I hope you have a wonderful and relaxing day. Is there anything that you can do to relieve your pain when it gets out of control? I am looking forward to reading your comments and I will respond as quickly as I can. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!
The past several weeks have been filled with stress worrying about getting the medication I need for Multiple Sclerosis. I am not sure anymore which one is worse going without the medication, or the stress I have been under because of the medication. I know both could be bad, but the only one that could be detrimental to my health is stress. Plus, stress is terrible for everyone, but even more so for those with Multiple Sclerosis because stress and MS are not friends! It is not like this is a medication for fun, it is necessary for my health.
With the Gilenya, I am not able to go without it for no more than 7 days, or I would be forced to start the long process again. Of course, since this medication has been helpful with keeping the MS at bay and semi-under control, I do not want to be without it for any length of time. This has been something that I have been on top of for weeks, and cannot understand why the doctor, who is supposed to care about her patients, has not been caring at all. Instead of doing what was needed, my doctor delayed this process for way too long.
I think it might be time to find a new doctor, one that cares about her patients! Doctors take a hypocritical oath. This oath requires a physician to swear upon a number of healing gods that he will uphold a number of professional ethical standards. I think my doctor might need a refresher on what this means because she seems to have forgotten! I do not think I am asking too much, I just want the medication that has been a lifesaver for me. All this does is make me miss my former doctor because he cared and would have already taken care of this.
Thank you for visiting my site today. I hope you had a nice week, and you have a wonderful and safe weekend. For those of you who must deal with doctors, remember how important it is to stay on top of them to ensure your medical needs are met. It is awful how much we must advocate for ourselves when our doctors fail us. I look forward to reading your comments and I will respond as quickly as possible. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!
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!
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!
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!
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!