More talk about MS!

ms march awarenessMultiple Sclerosis is a very complex and frustrating battle to face. Unfortunately, this illness does impact everyone’s life in  so many different ways and to the point it’s almost hard to pinpoint what is what! There have been various names people choose to use when referring to  MS; such as the snowflake disease or invisible illness. I think these terms can also be used in many other chronic illnesses as well because they are fitting. I mean if you think about it, there are no two snowflakes that are exactly the alike,  just like no illnesses experiences the exact same symptoms. Also, there are so many of these illnesses that are completely naked to the eye, so they are pretty much invisible in the bigger picture. 51209211_2039825619447292_5206443739896197656_n

Let me ask my wonderful fellow bloggers, whether you live with MS or know someone else that does, what do you already know about this not so fun illness? Honestly,I think the only thing everyone knows to be 100% true is this illness can vastly differ for each individual! There might be times throughout the years each person with MS will unfortunately have a new symptom emerge and they need to learn to cope with this. While no one wants to deal with anything additional and all symptoms can be daunting, there  really are always ways to carry on with life!

symptomsI know there may be countless responses to this, but what are your top 5 most challenging issues you have been forced to accept during your journey? One thing I find very challenging and the most aggravating is how completely unpredictable this illness is. I have and probably always will be an obsessive planner! It drives me crazy for any unplanned issues to appear without any warning! Over the years, I have learned to expect the unexpected and be willing to rearrange my plans.

Another part of my MS life I find challenging, but am learning to accept is there are th-26-300x111NEVER any real answers for the numerous questions I ask my doctor. I would have never thought my questions were so difficult that my specialist can’t answer them. I mean these doctors go through enough schooling they should have a wealth of knowledge to match this. I am sure the schooling for many years is very expensive and probably more money than I will make in MANY years! Maybe while in school they should have a class in good bedside manner because most neurologist have a terrible personality. I think they have a godlike and ego maniac demeanor. 

flat,550x550,075,f.u4The third challenging aspect of this life that I have almost accepted is, the complete ignorance and total lack of empathy most people have for others. The ugly glances and degrading comments I have seen and heard over my years, especially when I park in a handicap parking space are nothing short of hurtful! Even though I have lived with this for many years, these glances and comments still can bring me to tears. This really doesn’t have anything to do with me, but is all on them! These people probably believe that misery loves company and try to bring me down to their level, which I try to avoid!

It doesn’t matter how long I have struggled with this illness, fatigue still tries to kick my Worst-MS-symptombutt daily! It was always complicated for me when I was working full-time because it never failed at about 1:00 or 2:00 if I am lucky I was exhausted! I have accepted this issue and try my best to conserve my energy so I am not ready for a nap at lunch time!

Lastly and to keep this from being too terribly long, the final challenging thing for me to accept is the constant pain I feel. It often seems like I am going to always to battle with pain and with little to no relief. I do know that dwelling on this pain only causes the pain to worsen instead of lesson and this just  isn’t an option for me! I do try focusing on the positive in my life instead of the negative hoping these thoughts will trick my body into healing! I also believe acceptance is half the battle and laughcan help keep my stress in check which will in-turn lessen the pain.

I would like to thank y’all for stopping by my site today. I told y’all on March 1st that for MS Awareness month I wanted to shed more light on this illness because knowledge is power! I am looking forward to reading your comments and do hope this was helpful for you!

I hope you have had a good week and of course hope you are feeling well. The weekend is finally here and  I hope you enjoy every moment of it! 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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Hello March!

MarchGood morning y’all! We are now welcoming March with hopes for not only new opportunities,  but many happier days ahead of us. I am sure most of us are wondering when the weather worldwide will improve, considering it has been pretty all over the place. The numerous changes with weather has effected the safety and well-being of so many people. There has been treacherous rainfall in many areas and then horrible heat waves in other areas of the world. It almost seems like Mother Nature is very upset about something and is doing her best to get our attention.

Y’all might already know this, but March is Multiple Sclerosis Awareness Month. Of course for many people myself included, this illness is much more than just one monthflat,550x550,075,f.u4 of awareness because it is our daily battle. I believe this is a struggle that tests our strengths and forces us to not give up on ourselves but continue to fight a good fight!

There is no denying the fact that being diagnosed with this very unpredictable illness is emotional and terrifying. Even though this illness has been acknowledged since it was discovered in the 1800’s in England, there is still SO much left unknown which is pretty frustrating! Much research has been done and yet there still isn’t a cure or even a known cause for this illness. With the amount of “so-called” intelligent doctors and scientists working on finding cures, it leaves me at a loss for words for why there still hasn’t been one found yet. I often question what they are really doing with the all money that has been raised and donated to places like the MS Foundation or these walks for a cure.

ms march awarenessWhen I started blogging way back in July of 2017, my goals were to raise awareness of Multiple Sclerosis but also spread as much positivity as I possibly could. During this time I have been fortunate enough to meet others around the world that understand what I live with and the challenges I face. I have been able to gain SO much additional knowledge to what I already knew about Multiple Sclerosis and this has all been very beneficial. I think it often takes strength in numbers to deal with any type of chronic illness and the blogging community definitely offers this and SO much more! I do appreciate all my ❤ blogging friends ❤ more than words could ever begin to say. 

Many of you already know a lot about Multiple Sclerosis, but during this month I want to continue to raise awareness of this illness that tried and failed to control my life. My wp-1456957606031plans are to share more of my personal experiences and lessons I have learned while living with this illness. I must say the most valuable lesson I have learned through my years is, stress is our worst enemy and must be avoided at all costs! I am still teaching myself how to stress less, but I do fail miserably with this too often! I will be sharing with you which symptoms I experience most frequently and how they try to affect my day-to-day life, but how I fight against this as well!

I am going to explore new things that could possibly cause Multiple Sclerosis symptoms to worsen and other things that can potentially help these symptoms stay inactive, which we all really want to happen! There are actually foods that can increase inflammation, which is terrible for those of us with Multiple Sclerosis.

a02951d061ebca2ba4855c39ee90d206--like-a-girl-autoimmune-diseaseI want to thank you from the bottom of my heart for stopping by my site today. I always appreciate the support you offer me every day. I do hope March will be a great month for you and you are feeling the best you can. I do look forward to reading what your thoughts are about this post and anything you know about MS, I will respond just as quickly as I can. Never forget that I am always sending y’all LOTS of love ❤, comfort and many positive vibes!

My signature heart

 

❤Always, Alyssa❤

Pain gets in the way!

tuesdayGood morning y’all! I hope you are doing well today. I am terribly sorry for missing my traditional “Motivational Monday”. I  don’t think I have ever missed this and my reasons for missing this yesterday is because I was feeling horrible and in a lot of severe pain. We all know that pain comes with the territory of many if not most chronic illnesses and I normally fight beyond this issue, but it was just wasn’t possible yesterday. 

Y’all already know that my husband’s birthday was on Saturday and thankfully we werebirthday success able to celebrate his day! I was so happy to be able to make my husband’s birthday special and ensure he had a beautiful cake!! I was so worried about this cake situation because I was use to getting his cake at the local store near are old house, but thank goodness this new grocery store did a fabulous job!

I honestly have absolutely NO idea what in the world could be causing the increase in pain is weakness leaving the bodymy pain, but I am hoping it will end soon and not be a dreaded relapse. The last massive relapse I had was last year and probably due to changing medication and the stress that followed that decision. I am probably going to just blame the weather for my pain and cough issues because that is just easier and offers more hope! Yes, weeks later I still have a nagging cough that will not go away!

Is there anything that helps you when your pain gets out of control? I tend to take kindly to bfa0ee13a5cbf740e7fe43df086ccd04my trusty heating pain because that does help some, but still doesn’t completely eliminate the pain. I know I have mentioned previously that I get pain in my back and legs, but normally one is worse than the other. Right now, I couldn’t possibly say which one is hurting me worse. What I can say for certain is the leg pain is making it hard to walk far, but I am doing what I can and still refuse to allow this illness to defeat me!

Thank y’all for visiting my site this morning. I appreciate all of your support more than I can even explain. I am truly sorry for missing Motivational Monday, but I promise I will not miss Pick-Me-Up Thursday! I look 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 and many positive vibes!

My signature heart

❤Always, Alyssa❤

Pick-Me-Up-Thursday!

uess-what-its-friday-eve-chankscats-happy-friday-eve-guys-17457852I am so sorry for the delay on my Pick-Me-Up-Thursday quote. I think the holiday has me a little behind on what day it is! I hope y’all are doing well and I hope you had a wonderful Christmas! 

I find the quote I am sharing with y’all today incredibly true. Life gets so complicated and living with a chronic illness  can add to the difficulties. I have promised myself for years to never give up, as y’all already know that is the only way we can really fail! I hope you find this quote helpful and it adds a little ❤ inspiration to your day!inspirational-encouragement-quotes

❤My husband and I were able to spend time with his side of the family on Tuesday and my mother and step-father were able to come spend time with us yesterday and see our new home. ❤It was great to be able to see everyone that we ❤ love and reconnect! Y’all already know that I live with Multiple Sclerosis, but my dear sweet step father has to live withfamily is everything Parkinson’s disease. I know it isn’t easy for my step father and I do my best to add some light and encouragement to his life. I do know that MS and Parkinson’s are very different, but I try to explain to him every time I see or speak to him just how I have managed for 19 years with MS, which seems to help temporarily!

It doesn’t really matter what chronic illness someone is living with, all of us need to find encouragement ❤ and inspiration whenever and Princess-quote-helen-kellerwherever possible. I am able to find relaxation and happiness with writing and crocheting, but sadly my step father’s hobby was building model airplanes, which due to his condition he finds too difficult. When he told us yesterday he can’t do his hobby anymore because his hands shake too much, it broke my heart. I tried telling him that it doesn’t matter how quickly he builds the planes, but he could build them slowly and take breaks whenever he needed to. I am hoping he will actually listen and NOT give up on something that einstein-on-lifemakes him happy.

I hope y’all are feeling well and you are able to enjoy the weekend that is coming. We have another holiday we can enjoy and hopefully 2019 will be a great year! 2018 went by so damn fast and was a bit of a struggle, so maybe this new year will slow down and bring all of us LOTS of happiness and amazing times! 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❤

Always continue living!

nobodysaidNo one has ever said that living with a chronic illness was easy, but so many of us do. Some of us find ways to live through the pain caused from our illness with dignity, grace and determination. After all many illnesses do not YET have a cure, so it is just best to push through the best we can.

If we allow ourselves to remain focused on whatever illness or illnesses we struggle with, I believe we would miss out on all the good things life has towhen-life-gives-you-reason-to-cry-smile-stars offer us. It isn’t worth losing the happiness our life can hold by dwelling on the struggles we face. It is difficult and yet possible to turn all the pain and hardships we wrestle with into something beneficial, I know how crazy that might sound but it is true. Some of the ways we battle through life can be very inspiring and encouraging for SO many others.

Y’all already know that I have lived with Multiple Sclerosis for 19 very long and painful years, which is more than half of my life! If I had just given up all hope when I was first never-give-up2diagnosed, I would never be where I am today. Yes, life gets really complicated and frustrating, but overall I am in a very good place. My husband and I have moved to a new city, as y’all already know. We are living in a great home that is where my husband’s amazing grandparents raised their family. There is so much love ❤ built into the walls of our home and I swear you can still feel his grandparent’s spirit in every inch of this house❤! This is a very comforting and reassuring feeling that I am thankful for.

I am pretty sure y’all already know this about me by now, but just in case you ever questioned it, I believe holding on tight to positivity ❤ can go a long way. If you are constantly in a negative frame of mindimages (2) nothing good will ever really happen in your life, which could just be because you aren’t able to see something great that is right in front of you or you aren’t allowing yourself to feel it. Staying negative all of the time just creates a dark cloud over your head that follows you everywhere you go and there is no way to hide from it. Negativity can create a blind spot to anything and anyone that could actually be wonderful.

I know that it is completely impossible to be positive 24/7 365 days of the year, but it isn’t healthy to remain negative all those days either. There is always a manageable balance 26550426-balance-bad-or-good-scales-on-white-isolated-background-3dbetween the good and the bad; we just need to acknowledge the differences and keeping moving forward!

I hope y’all have had a lovely weekend and you are feeling well today! It has been a sunny and chilly weekend, which is MUCH better than chilly and rainy. Thank you so much for stopping  by my site today and I do really look forward to reading your comments. I promise y’all that I will respond as quickly as I can, I am getting better at balancing work and life again! Enjoy the rest of what is left of your weekend. 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❤