Outraged!

IMG_0579I can’t believe it’s only Tuesday because it certainly feels we should be much closer to the weekend. It is crazy how fast the short weekends go by and then how LONG the work weeks are. I am thankful I found a job that is close to home and all, but strongly believe 40 hours a week is too much for anyone to dedicate to a job! I think it is even more outrageous that here in the United States we are often forced to wait 90 days before we can even get insurance, not to mention the fact it is INSANELY expensive! I mean, if I were to get insurance for myself and my husband the cost per pay check would be more than a quarter of my paycheck!

I know I have written about this before, but now it is getting painfully more real! The obamacare-pre-existing-conditionsnews I heard, after a long day at work, was so disturbing and caused me so much ANGER, as it would anyone with a heart and any empathy for others! For someone during their campaign they ran to become president, no names being mentioned of course, saying they wouldn’t do anything negative to those of us with pre-existing conditions, to now doing the EXACT OPPOSITE and trying to eliminate protection for pre-existing conditions! I know this person in the white house has some of-nonelderly-adults-with-a-pre-existing-condition-twitter-v1crazy issues with the former president,  but to banish the good things that were done is very wrong. How anyone could still support this person is beyond me because I sure as hell couldn’t and never would! There are millions of people in the United States that will be affected by this and many could even lose their lives if anything happens to their health insurance. 

I try my best to keep my blog encouraging and never talk politics because we are all understandingtheacaentitled to our opinions, but when something can change my own life for the negative, I can’t help but to share my thoughts on the matter! I have been trying to tell myself that no one would ever think about doing something so awful and ruin lives for so many, but it just may happen! Striking down the Affordable Care Act, as has been put on the table, is wrong on so many levels, no matter what your political views are! I wish there was something more I could do to stop anything like this from happening, but I do not even know what that would be! Of course I can write about it, but I don’t know how much that will really change the issues! I do understand there is a chance that nothing being proposed will pass, but what if it does? How can anyone afford the medications they need to live their lives? I know there is absolutely NO way I could ever afford the medications I take to slow the progression of my Multiple benefits-affordable-care-actSclerosis down without insurance. Where would this leave people battling with a chronic illness and does anyone in power really care??

I am sorry for my second rant in a matter of days, but I am hoping we could some how all join together and find a way to help make things better for millions of people! We all deserve WAY better than this and it is shameful we are facing this fear now! I have always heard that there is strength in numbers, so all I can do is hope for better times!

Thank you for visiting my site today and reading this rant! My frustrations are sky-high and the only thing I know to do is write about them! This helps me calm my nerves and ease my stress some! I hope y’all have a pleasant and relaxing evening. I always encourage your comments and I will respond as quickly as I can! Please know that even though I am a little high-strung right now about all this, I am always sending y’all LOTS of love ❤, comfort and many positive vibes!

My signature heart

❤Always, Alyssa❤

 

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The rant about healthcare & insurance!

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

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

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

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

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

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

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

My signature heart

❤Always, Alyssa❤

Crazy decisions and side effects!

side effectsI have always thought it was a little crazy and extremely frustrating that medications meant to slow the progression of illnesses down, are accompanied by a long list of possible side effects. I know that the Gilenya I take daily is supposed to slow the progression of my Multiple Sclerosis, but it has a really LONG list of potential side effects and at one point that was what pushed me to want to make a change in my treatment plan.

The middle of last year I was having so many issues with terrible sinus headaches and migraines that I wanted to find out what was causing them. After reviewing what side images (2)effects Gilenya posed, I saw somethings that were common was headaches and sinus troubles. I was not just looking the side effects up on Google, but I was on Gilenya’s actual website, so I took this very serious as I am sure most people would. I went to my doctor with these concerns and she pretty much dismissed my thoughts claiming that it was not all that common with this medication and that I shouldn’t be doing this kind of research because it was “false” information. I argued back asking how it could be false when it was on the manufactures real website!? Of course I was frustrated that my valid concerns regarding my health was being ignored and not even willing to discuss more at that oral_therapy02time, so I decided to ignore her medical advice and demanded that I try a new medication immediately. It wasn’t until I told her there was another oral medication I read about that I thought would be better for me she finally decided it was worth her precious time to have a conversation with me. She tried her darndest to use the fear tactic, which of course wasn’t working well with me and only caused me to question her logic further. I know it sounds crazy, but I was completely convinced that she was receiving kick-backs from the drug company and me not changing medications would continue to be financially beneficial to her.

In preparation to change my treatment plan from Gilenya to Tecfidera I discontinued the Gilenya last July. I was required to be off medication completely for 6 weeks, so all the 51WIQmA-fnL._SL1000_Gilenya I had taken needed be out of my system and allow the Tecfidera to be able get into my system. In early September I started on Tecfidera which again is an oral medication. During this time my MS did not get better, but much worse! I guess MAYBE the doctor was correct when she said Tecfidera wasn’t going to be strong enough for me or maybe I had the nasty relapse because of ALL the stress I was under. I was so worried about the headaches and the fact that Gilenya could have been the cause and then even more concerned that my MS was progressing way too soon in my life. Whatever the cause was the MRI I had in early October was HORRIBLE, landing me right back to the drug I was convinced was causing my headaches!

It still doesn’t seem fair to me that we have to make the decision if we would rather deal Gilenya+Fingolimidewith the side effects of these so-called helpful drugs or be disabled. As difficult as it is to deal with the massive headaches/migraines, I would much rather deal with them rather than lose my normal abilities, like walking without assistance. I still do not think it is right for anyone to have to make a decision like this, but I guess it is what it is!

I have been back on the Gilenya for a little over a year now and I do still deal with sinus trouble and migraines, but at least the MS hasn’t to have progressed. I do think that until there is a cure for MS, which I must believe will happen in my lifetime, I will not be changing medications! Now that my husband and I have completed our move, I am ms-research-2013-6-638searching for a new MS Specialist, who will hopefully be more knowledgeable and have much better bedside manner. I know I have already shared this with y’all, but I am NOT a fan of my previous specialist. As crazy as this may sound, I want a specialist that is an older gentlemen because I have found they are more understanding and considerate. Of course going with an older person, I run the risk of them retiring, like two of my previous specialist did and I absolutely ❤ LOVED❤ them! I am sure that with the determination I have, I will find one that is best for me and my personality. I guess it shouldn’t be as important to have the warm and fuzzy with a doctor as it is for the doctor to be knowledgeable, but I need to feel comfortable with them in order to trust the doctor.

I always appreciate you taking the time to stop by my site today and I always love reading your got-hope1comments! I hope y’all are having a nice weekend and you are feeling as good as you possibly can! I must say having a long weekend is absolutely wonderful and I have been able to rest, but still do things that needed to be done! Please never forget that I am always sending y’all LOTS of ❤ love, comfort and many positive vibes!

My signature heart

❤Always, Alyssa❤

Never stop believing in hope!

hope-quotes-wallpaperI think in the world today, it can be very easy to give up hope. There does seem to be so much negativity and hatred surfacing daily, but not allowing these thoughts into our lives is possible! As long as we keep only those around us who offer happiness and nothing but optimism, we all could spread those emotions instead of negativity. If enough believe in love❤ and hope, we could out power the hate.

It could be easy for me or anyone else that lives with a chronic illness to want to give up any hope for a cure. Living with any illness that causes daily pain is without a doubt frustrating, hope-quotes-about-life-09especially when it seems to be never-ending. Being required to take numerous medications several times a day to slow any progression down, is not any fun! Making decisions of what the right medications are is like playing a game of Russian Roulette, you never know what the outcome is going to be. All of this takes determination to beat the odds and hopefully win the game of life!

Making decisions on what the right medications will be for yourself is extremely difficult. This takes having a lot of confidence in your choices. It also takes doing a lot of research on the medications to choose from. Since being diagnosed with Multiple hope seeing brightSclerosis 18 years ago, I have been on numerous different types of medications that are meant to slow the progression down. The first several were not right for me and I was able to move onto something different. The great thing is, none of the medications need to be permanent if they do not work well with your body chemistry, you are able to keep moving on with something else. This process was frustrating for me, but I never gave up hope that something would work well for me. Thankfully, I had a very understanding and tolerant doctor during this time which helped me make the best decisions!

I want to share a blog post from a fabulous fellow blogger❤ with y’all. Jenny at https://trippingthroughtreacle.com has lived with Multiple Sclerosis for many years and still keeps up her fight! I always find everything Jenny shares to be beyond amazing and she continues to give me hope for better times. I want to share with you her recent post because it was so brilliant and very informative https://trippingthroughtreacle.com/2018/09/07/multiple-sclerosis-and-its-symptoms/#comment-1981. This post alone will make you want to read even more of 2-19-life-1024x792Jenny’s posts!

As difficult as life gets, we all have the choice to hold onto HOPE! If we continue believing, HOPE will never die! We have a choice to challenge the potential for continuing to better ourselves and even all around us. 

Thank y’all for visiting my site this morning. I always appreciate your support and love to read your comments! I hope you have a wonderful Tuesday and you are feeling well! Please never forget that I am always sending y’all LOTS of love❤ and comfort!

My signature heart

❤Always, Alyssa❤

 

 

Result are finally in!!

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

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

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

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

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

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

My signature heart

❤Always, Alyssa❤

Music Therapy is the BEST!

Happy-wednesday-good-Morning-have-a-lovely-dayGood morning y’all! I hope you are having a great week so far and just think we are half way to the prize of the much-needed weekend! My week thus far has been a little busy at work because one person is on vacation. I mean I guess we all need a vacation, but the “team” I work with was already down one person. I do use the term “team” loosely because most of the time we are anything but that! There is way too much lack of communication, which in my opinion never results in success for anyone involved! Y’all probably already know my how my personality is and that I will push myself a little too far most of the time. Prior to this week I was struggling to work just 6 hours, but I am pushing myself to do more this week! I have been doing 6.5 hours early in the week and plan to do 7 for the rest of the week! I know this sounds pretty crazy considering 6 hours was killing me, but at least I do have the evenings to rest!

It seems that life just has a way of becoming iincredibly difficult at times. There are My-music-takes-me-places-that-my-feed-can-never-go...-Best-Quotes-Decor-sayingstimes that I honestly feel trapped in the shell of my body and want to find a way to escape from it! When my pain gets out of control and or the heat takes the life out of me, I just want to find a peaceful place to run to! I have found that music is absolutely the best therapy for everything!!! Suffering with pain, I turn the music up loud to distract my mind from the pain I am feeling. Battling with stress, I turn the music up even louder to drown the negative thoughts out. Crying with sadness, I will submerge into the music for comfort and peace. Frustrated with your job, which I normally am, I turn the music up even louder to avoid music-noteall the negative energy that is surrounding me!

Maybe it is just me but I can get completely lost in music! There are certain songs that resonate with what I am feeling at any moment in time. There are even songs that can turn a really bad day into something a lot more positive! To me there is more to a song than just the words being sang, but the musicality of a song that can take me to another place far away from any pressures I am feeling! Sometimes the mood I am in might require lots of base to drown out my thoughts and other times I just need a nice soothingMusic-is-my-life-music-5797397-376-298 song to ease my mind.

This week I was fortunate enough to be nominated to do the song/lyric challenge which was absolutely amazing! I shared with y’all two songs from The Red Jumpsuit Apparatus, but what I failed to  share was my husband and I were able to see this band play live last Friday! Having the opportunity to see one of our favorite bands, which also holds SO much sentimental meaning was a wonderful way to end the week! The funny thing is, we almost did not go because I was in a lot of pain. Even though I suffered the consequences on Saturday, I am still SO incredibly glad we went! The music music is my medicineand being able to interact with this amazing band after the show was well worth the pain I endured! I am also still thrilled that I was able to meet Erin Winter, which is Randy Winter’s wife. Randy is one of the amazing guitarists from this band and has always been so kind to my husband and I! I had gotten to know Erin on Facebook, so finally meeting her in person was wonderful as she really is an amazing woman!

Thank y’all so much for taking the time to visit my site today and I definitely look forward reading your comments as I know they will be great! I hope you have a wonderful Wednesday and really hope you are feeling the best you possibly can! Please always remember that no matter what I may be going through, I am always sending y’all LOTS of❤ love and comfort!

My signature heart

❤Always, Alyssa❤

My Letter to Multiple Sclerosis

Good Morning

Good morning Y’all! I hope you are having a great weekend so far and you will be able to enjoy your Sunday! After all the topics I have been able to address, I managed to forget one of the most important topics. While reading several different blogging forums, I thought it would be a good idea to address the thing that brought me to blogging in the first place, my Multiple Sclerosis. So today I am going to share with you the letter I would love to send to this illness. This might be a little longer and full of emotions, but it is also very real! I hope you enjoy this! Maybe this could be something for you to try, write a letter to your illness!

Dear my not so loving friend Multiple Sclerosis,

You invaded my body about 18 years ago and just stuck with me without fail. We have been through many relapses together over the years; all the while you tried to defeat me. But let’s face it, I will not surrender to your persistent bad behaviors and will not allowms 3 you to keep me down for too long.  

In the beginning of our “so-called friendship”❤, you tried to take my vision from me, which let me just say was not a good way to become the lifelong friends we were forced to be!! Of course it took a little help from the not so exciting steroids, but my vision thankfully returned to normal! You have tried over and over again throughout the years to take control of my legs by causing me so much pain and numbness, but I am still able to walk without the assistance of what I think you were aiming for. You have caused me so much pain and suffering for way too many years, but I still continue to fight back with all my might because I never plan to give up and allow you to control my life! The truth is, you are the one losing our constant battle and I am shockingly enough the one winning the war!

Let us not forget the fact that you have chosen to take up to residence in my brain causing many other issues for me! There are the several times a week debiting only choice we haveheadaches which normally end to severe nausea. The headaches you decided to inflict me with make it nearly impossible to do anything at all! It was also decided by YOU to cause some brain fog and dizziness, making me feel confused and frustrated. The horrible back, neck and leg pain is more than enough for me to live with, don’t you think? Please get out of my brain because you are being EVICTED IMMEDIATELY!

I bet you thought you were being clever by giving me hugs every now and then! Well I do not like or appreciate your unwelcome hugs! So in the future, please do not do that! Just in case you did not already know, your hugs are very painful!

I guess during the 18 years we have spent together, you have become the ❤friend that I never asked for or wanted and you just will not go way to give me a break. You are pretty much worse than the most obnoxious uninvited guest that will NOT LEAVE no matter how many hints you are given! The only thing I can do now is just embrace the fact that you are just here for the long haul and will surface whenever you please without so much as a warning which let’s face it is really inconsiderate! 

Oh and what about all those different medications you want me to take? Do you not realize just how much some of these medications can and do affect a person’s body or do you just not care? Why must you be so complicated that the smartest minds of the world can’t seem to find a way to make you vanish? They sure can create so many drugs to “slow” the progression of the illness down but not make the illness stay in a remission Get MS montage plate picstate FOREVER! I am starting to think that you, the malicious drug companies and the not so compassionate greedy insurance companies are working closely together to do nothing more but make LOTS OF MONEY yourselves!

So my dear not so sweet friend MS, now that you have heard a little from me about how you make me feel, when are you going to move out of my body allowing me to be free of you? I think it is long since time to depart from each other!

Thank y’all for visiting my site today❤! I really hope you enjoyed reading the letter I would love❤ to be able to send off to Multiple Sclerosis. Of course I would love to read your thoughts on this, so please let a comment for me and I will respond as quickly as I can. I really hope you are feeling well today and can enjoy your Sunday! As always remember that I am sending you  LOTS of love💞 and comfort!

My signature heart

❤Always, Alyssa❤