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❤

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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❤

 

Friday Sunshine!

struggleGood morning Y’all and a very happy Friday! Even though logically I know it is not possible, it feels like the weeks are getting longer. I had expectations for myself for this week, but those expectations were unfortunately not met. I told y’all in the beginning of the week I was going to try to increase my work hours from 6 hours daily to 7, but I was not able to. I also said I would not be hard on myself if I did not achieve this goal, which is a little untrue. As y’all know I have been struggling with a lot of spasticity in my legs, which is causing a massive amount of pain. I tried to push myself further so I could work 7 hours, but the most I was able to do was 6.5 hours. All I can say is, better luck next week because you know I will keep trying until I achieve my goal!

How was your week? Do you feel like the weeks are getting longer or is it all in my head? I think my week might have felt longer because I wanted so much to work longer hours and I was having so much pain! Frustration was definitely at a high! 

I am trying to make an important decision about whether I should or should not get another MRI. The only reason why my specialist sent the order in was because I haveMS Warrior been back on the Gilenya for 6 months and they want to see if it is helping my illness. Until I mentioned that I was on Gilenya for 6 years previously they did not seem to have any idea and now it might not even be necessary. It is a little disturbing to me that my specialist did not know or remember that I was on Gilenya for so many years prior to October. When she first told me I needed to have the MRI, I thought it was to see if the new active lesions from the October MRI had went into remission or if there were new lesions, I did not know she was ordering this because of the 6 month time line due to restarting the Gilenya! If I am being 100% honest, the only reason I would want this MRI done is to see if there are new active lesions causing all this spasticity and pain. But all the MRI will do is cause me a lot of unnecessary stress and in turn upset me way too much, which we all know the damage being upset will cause. I mean seriously, if all is well with the MRI the specialist mswill say I am doing well with the Gilenya but, if there is any activity on the scan she might say the Gilenya is not strong enough for me and I need to consider starting a different medication. The bottom line is I am NOT switching medications again until there is a cure because the Gilenya worked SO well for me for 6 long years and if the MS has progressed to Secondary, Gilenya is still used to treat the illness. Do you think I am being logical or irrational with my thought process?

I really appreciate you taking the time to visit my site today and I am really looking forward to your comments, which you know I will always respond to as soon as I possibly can! I hope y’all have a fantastic Friday and I also hope you are feeling well! Please never forget that I am always sending y’all positive vibes and lots of ❤love and comfort!

Love 2

Always, Alyssa

Intense Spasticity

Definition+of+spasticityFor the past few days I have been dealing with a lot of pain and discomfort in my legs and even in my arms. I have experienced this sensation many times over the years, so I was almost immune to it and did not allow it to alarm me too much. In all honesty though, as the days and feeling continued it just started to become quite annoying and incredibly uncomfortable. Nothing but my trusty heating pad ❤ seems to alleviate this feeling of pain, which is just VERY frustrating. So I decided to share a little information with y’all about spasticity, which I am sure most of you already know about!

Spasticity is feelings of stiffness and various ranges of involuntary muscle spasms. This is extremely common with those living with Multiple Sclerosis. Spasticity could be as mild as feelings of tightness of the muscles or so severe that it causes painful, uncontrollable spasms of the extremities, most commonly in the legs. Spasticity can cause pain and tightness in and around the joints and cause intense lower back pain, which is horrible to manage! Spasticity can be triggered by a number of things like sudden movement or position changes, extremes in temperatures, humidity or infection, but can also be ms spasticityaggravated by tight clothing!

There are different types of Spasticity are:

Flexor Spasticity involving the hamstrings which are the muscles on back of the upper leg and hip flexor which are the muscles at the top of the upper thigh. The hips and knees are bent and difficult to straighten.

Extensor Spasticity involving the quadriceps and adductors which are the muscles on the front and inside of the upper leg. The hips and knees remain straight with legs very close together or crossed over at the ankles.

There are treatments available for this possibly painful situation. Treatments are on an individual basis, but for any treatment it is important to work closely with a specialist. Some treatments may include certain exercises recommended by the specialist, changes in daily activities, medication or a combination of all three of these options. The two most common antispasticity medications are Baclofen and Tizanidine. Baclofen is a muscle relaxant that works on nerves in the spinal cord. Tizanidine works quickly to calm spasms and to relax tightened muscles. All medications that can be used, can and will work differently with each individual person, which is why it is SO IMPORTANT to always consult with a specialist and report all side effect experienced.

**Important Disclaimer** I am not a physician nor am I in the medical field, all information I am sharing is based completely on my own research and personal experiences, so please if you are experiencing anything to do with spasticity consult with your physician.

Thank y’all for visiting my site today! I hope this information was interesting to you and if you have any comments, please do not hesitate to leave them. I love❤ being able to read your comments and I do always respond as quickly as I can. If any of you have experienced this feeling and have found a good way to relieve the pain and discomfort, please let me know!! I hope y’all have a great day and are feeling well. As always remember I am sending y’all lots of 💕love and comfort!

Love 2

 

Always, Alyssa