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!

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❤Always, Alyssa❤

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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!

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❤Always, Alyssa❤

Never Giving Up!

When Life Gets BusyTo simply say that my life has been busy lately and it has very hard to make the necessary time to do what I enjoy is a poor excuse and a HUGE  understatement! Moving to a new city and starting a new job has been exciting, but also VERY overwhelming. I honestly haven’t worked a full-time job in a while because of the constant pain and other issues I struggle with daily, but I have been doing just that for one month now! Yes, the pain has been difficult to deal with, but at the same time I am actually enjoying the job so I just accept the pain for what it is and I don’t dwell over it. I feel that my job helps those that are struggle with making ends means, but they want to improve their lives. In my personal opinion, people who struggle with life but do what is necessary to provide for themselves and their families are pretty amazing and admirable. There are so many that just give up because they feel helpless and feel as there isn’t anything they can do to improve their lives, which this just isn’t true! It may not dc-may18-600seem like it, but I do believe that we can all accomplish ANYTHING we set our minds to!

Like I have said already, I am pushing myself to work a full-time job and lately with the weather change hasn’t been easy at all! Even though my body is on overdrive and going a little haywire, I know things will improve in time it just takes patients, which I tend to lack. It doesn’t matter if the temperature changes from hot to cold or cold to hot, I still react the same way, NOT WELL! It still seems a little crazy to me that I feel horrible when anything goes on with the weather, even just rain. For the first few weeks of every season, I just feel like I was hit by a truck and the mean driver backed over me just for some added fun! You would think that after living with Multiple Sclerosis for almost 19 years I would be immune to these issues or at least be able to tolerate them better, but honestly it is always produces the same troubles!

878da42dde1a95a17c88e6759c5fbcf1I hate that I have been a little MIA for weeks now, but the life changes has been a struggle for me. I still need to find a MS Specialist near me, so when I do have issues, which hopefully I won’t, I will have a doctor to contact. It would be terrible to drive 2 hours back to the doctor I couldn’t care less for, but that might be my only choice for short-term, we will see. We did find a vet for our cats to go to that is really close to our house. Only one of our cats really needs a vet due to his asthma. A lady I work with said she has a great dentist, so I might need to check them out. It isn’t any fun starting all over again with doctors, but maybe it is actually a good thing and I will find better doctors that I mesh well with. I don’t think I am a difficult patient, but I need to feel like the doctor I see, no matter what type they are have required knowledge and the MS Specialist needs to be compassionate. Do you think I am asking too much and I am a little difficult? Of course I want the MS doctor to be honest, but not too harsh like my current one. All doctors should have good side manner, which seems to be hard to find!

daily-fitness-motivation-keep-pushing-your-limits-when-you-accomplish-your-goals-set-new-onesIt feels like it has been WAY too long since I have actually been able to write a post from the ❤ heart ❤ when I wasn’t too exhausted. It is really shocking how difficult it is to work full-time. It seems like there are too many hours away from home relaxing and enjoying life by working, but I guess we all make sacrifices and at least I like what I am doing! I am still continuing to learn and have more responsibilities, which I ❤ LOVE! If I am forced to work, I much prefer to stay busy and be challenged!

I hope y’all are having a great weekend! It is sunny, windy and a little chilly where I am, but it isn’t as bad as yesterday. It really seems that the seasons changed over night. We went from the high 80’s to low 50’s in just a few hours, that might be exaggerating a little, but that is how it seemed! I hope y’all are able to do anything and everything that brings you joy this weekend! Thank you so much for visiting my site today. I will respond to any comments as quickly as I can!! I promise I am working on getting back into blogging again, it is just taking longer than I would have expected. Please remember that I am always sending y’all LOTS of love ❤ and comfort!

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❤Always, Alyssa❤

 

Two weeks has past!

Time-for-an-UpdateGood evening y’all! It is incredibly hard to believe that it has already been two weeks since my husband and I uprooted our lives by moving to a new state and city! Two weeks ago when we made this change I was terrified about the decision we had made, but now I couldn’t be happier we made this fabulous move! I think the new city and my new job have done so much for the sanity I still had left and my massive stress-levels. The new city is a little smaller than where we were living and so far the people are a lot nicer.

My new job has so far been absolutely amazing and the people are SO very kind, which is a huge change for me. I mean don’t get me wrong, there were a few people at the old job that were great, but the bad definitely out-weighed the good there. My new boss is an older man who stays very busy with good things comenumerous meetings and tasks, but when he is in the office he is super kind and willing to answer any questions I might have. So far, my job has been very interesting! I have been learning about what my job entails and how to maintain a schedule for the VP of Finance. There is so much more to this job that I am very excited to learn. I am thrilled that I am going to be traveling with a co-worker for a week of training out of the state. This training will make me become a Certified Housing Counselor. I am looking forward to the chance to build relationships with the home buyers and feel that I will be able to offer a lot of compassion and understanding during a stressful time for them.

I work with so many incredibly nice and understanding people. Of course they only have one name to remember, where I have about 20. Thankfully, everyone is extremely understanding when I have to ask their name again, which has really only happened once or twice. empathy

The moving process was stressful and a lot of hard work, which caused me a great deal of fatigue and pain. I wasn’t the best with resting because I just wanted everything done and organized immediately, which is impossible. It has only been recently I decided that we have plenty of time to get things situated in the new home. There doesn’t need to be a rush on things because thankfully time is on our side with the new house. The only thing that is important  and time sensitive is we MUST get our old home ready to be sold and hopefully sold sooner than later! I look forward to the day we get a phone call saying we have an offer on the house! I am logical enough to understand it will take time before the townhouse actually sells.

As y’all already know, I am trying to find my way to continue blogging because I really do love it, while working a full-time job, which I haven’t done in a long time. This process is afinding-my-way-text-893x1024 trial and error situation, but I am determined to make this happen! I know many people probably will never not fully understand this, but I find writing and blogging a great way to reduce any stress I am feeling. I think most of y’all already know that I battle with stress issues, but I am working to improve this. I think being a walking/talking stress case for 37 years is long enough and now it is time to change my ways.

I do believe that my new job is improving my stress because it is a wonderful place to work. Please know, I am working on getting caught up with reading and commenting on your posts, while also working on my own blogging thoughts. I appreciate all the encouraging words y’all have shared with me over the past weeks and I am looking 6a014e601f2a5b970c014e887a4cfb970d-600wiforward to getting back to a semi-schedule with my site.

I hope y’all have had a great day and I really hope you are feeling well. I am honestly struggling with some pain issues at the moment, but it is possible it is due to the rainy weather☔. I know it is going to be rainy for a few days with the hurricane heading towards Florida and even though I am a few states away from Florida, we are still expecting a lot of rain🌧. My body doesn’t appreciate or tolerate rain very well, but I am going to keep a strong hold on positive thoughts because I think that is important. In a matter of days the rain will pass and hopefully the weather will be calm!

I want to thank you for visiting my site this evening and I do hope you have a lovely evening! I will do my very best to respond to any of your comments as quickly as I can. Please never forget that I am always sending y’all LOTS of love ❤ and comfort!

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❤

 

 

Prisoner of my own body

prison bodyIn a previous post I shared with y’all that my recent MRI results showed improvement and there were NO new lesions, which is great news! I felt so incredibly relieved with these wonderful results, but for some reason which I am sure is probably stress related, I still feel an incredible amount of pain and burning in my legs/feet. This pain and burning sensation is constant and unrelenting, which is nothing more than frustrating.

Trying to continue doing all that I want and need to do become trying because it seems like not much really help the issues I continue to struggle with. I feel that my body is trying to hold me as a prisoner from my own illness. Isn’t there normally parole from prison? Unfortunately parole has not been offered to me, so maybe that means I have not stay in painshowed good behavior! I know I do not listen well to my doctor (whom I do my best to avoid to at all costs), but I also continue to ignore the advice from the Nurse Practitioner (NP) that I actually like and respect, considering she worked closely with my first specialist that I just loved! During the MRI results reading with the NP, she encouraged me once again to try things to reduce my stress, considering she seems to believe that is where my pain is stemming from. I am do not agree with her completely on this, but maybe she is right.

Avoiding stress in the world we live in seems completely impossible to me, but maybe and not very likely I am wrong. I mean you are not able to turn the TV on without interruptions from the government, spewing nothing but lies! It is impossible to be out stress everywhereamong people without one them mentioning some lie they heard on the news that they of course believe. Avoiding stressors that I have been aware of for a long time is possible, but then through no fault of my own they seep through and then cause me nothing but frustrating feelings. I have even tried to ignore the stress-factors, but all that does is bottle up hostile feelings which tend to come out in rather terrible and unhealthy ways!

Now considering my MRI results indicated improvement, I am left to wonder if the pain and burning sensation that will not let up is just my life. This is what makes me feel that I am nothing more than a prisoner in my own body. How do you break-free when nothing seems to help? All that seems to be happening is the walls are growing taller and more impossible to escape from.light

Even though the issues I continue to face are frustrating, I will continue searching for the light I know is there somewhere. There must be an end to the pain and burning sensation and in time I am sure I will figure it out. However, by the time I figure out ways to end the pain and burning I am probably going to be very elderly and in an assistant living home, in which they will have to deal with me! I definitely feel bad for those individuals! 

I would like to thank y’all for stopping by my site today. I always appreciate you reading my thoughts for the day and leaving your amazing comments! I hope y’all have had a nice day and I hope you are feeling well. Please remember that I will respond to all comments as quickly as I can, as I really do enjoy the open communication we have. As always I am sending y’all LOTS of love❤ and comfort!

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❤Always, Alyssa❤

Zest for Life, Love & Strength!

Zest for life, love and strengthGood afternoon y’all! I hope you are enjoying your weekend and for those of us living in the states, I hope y’all are enjoying your long weekend! I sincerely hope you are feeling well. I can honestly tell you that I have been doing my best to not do much of anything and just enjoy my three days away from living on a schedule.

I think it is safe to say that we all go through difficult times over the course of our life. We will question anything and everything about what we are going through and the life we are living, only to not get any real true answers. I might be wrong, but I do believe that life was never meant to be easy. Even if we do not notice it, we learn and gain so much strength and knowledge with the challenging time we all face.Sunrise - Carolina Beach

I guess I feel that with all we deal with every single day of our life it can be pretty challenging. However we still must find the ability to enjoy the life we were given, love ourselves and those important to us and of course remember the strength we carry within ourselves as it is extremely powerful!

Even when life throws numerous curve balls at us, daily or even hourly, we still manage to do our best to bounce back from every hit. Some of the hits might be a little more intense than another, but that still doesn’t stop us! Each of us is full of love and determination, which enables us to keep up our fight for a pleasant life.

9c567cf19e3e6a689483b44f7f2ac52f--my-style-so-trueIt is crazy to think that every struggle makes us stronger because some of us have been to hell and back again so many times that we lost count, but still we may feel weak at times. I know over the 18 years I have lived with Multiple Sclerosis, there have been days I have felt like I was being punished for who know what. However, even with every horrible situation I have been through with this illness, I have never allowed Multiple Sclerosis to ruin my life and defeat me ever!

Do you ever wonder how you find the strength to get up every morning when you do not know how what do expect? Many chronic quote17-04illnesses are very unpredictable. This can mean that every day is different from another or even being a little more real, every hour of the day can different. This comes down to always being prepared for the unexpected and just keep moving forward without hesitation. This is not easy for anyone and yet that is what all of us do!

I do believe that we all have a “Zest for life, love and strength” because most days we all have the enthusiasm and energy to do it all and much more! There might be days we feel so exhausted from pain, which honestly can make us feel helpless, but just the fact that we have not given up shows our true inner strength. I think even in our weakest moments we still have a determined power that keeps us on track with our goals for life.  Is there zest for lifeanyone that is part of your life deal with what you do daily? I without a doubt can so ABSOLUTELY NOT! I would gladly change places with anyone when I hear what their very minor complaints are! The truth is, we all handle our struggles differently and for those that have been lucky enough to  have never had to endure what all of us do, they just do not understand and we can’t force them to comprehend!

Thank y’all for taking the time to visit my site today! I hope you enjoyed what I have written about today and really look forward to your comments, which I will respond to just as quickly as I can! I hope you enjoy the rest of your Sunday and if this is a three-day weekend for you, I hope you enjoy the rest of the weekend! As always I am sending y’all LOTS of love ❤and comfort!

My signature heart

❤Always, Alyssa❤