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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The world keeps spinning!

The world keeps spinningThe world seems to keep spinning around me so fast, but I feel like I standing still. I think it might be important to just accept the things in life that we have no control over and just embrace life for what it is. There really is so much about life that we might want to change, but I think whatever we might be living with or dealing with is in front of us for a reason. The reasons might be unknown, but there are reasons that we will discover someday!

If you sit down and really think about the way your life has played out, is there any outcome you would want to be different? All the struggles we might have encountered have not made us weak by any means, but they have all built our strength to continue onstruggle is real fighting a good fight! Sure none of us want to have a chronic illness or financial struggles or anything that might appear to be a negative aspect of life, but if we did not go through all the trials in life who would we be? I would like to think that everything we go through in life creates who we are and how we treat others, but maybe we would still be the same person if we did not go through any hard times. No one can say and be 100% sure!

Personally, I have always been very empathetic towards others and sympathetic to other’s needs. Everyone’s thoughts and emotions matter to me❤! I guess I am and probably always will be a very sentimental and sometimes overly emotional person. The way I am now has not changed since I was diagnosed with Multiple Sclerosis, I am just me!

There are so many people we all encounter that never learned how to be empathetic, which if you think about it is pretty sad for them. I guess for some people, especially in the world we live in frederickdouglass1today, if you have never experienced a life altering illness that causes many different issues, they are unable to understand. It is okay for people to not fully understand, but they should never judge another because how they say they are feeling. Pain is VERY REAL! Migraines are VERY REAL! Instability when walking is VERY REAL! Mood changes are also VERY REAL! Everything we deal with in life is VERY REAL! None of us asked to have a chronic illness and I am sure we all wished we didn’t. But considering we have one, we face the world with a different perspective that involves a lot of acceptance and willingness to make changes at a moment’s notice. Our days are typically never the same, but most of never complain about it, we just manage it the best we can.

Basically I have taught myself and I am still learning how to accept the fact that I haveaccept what we can not control no control over many things in my life. I know I can control how I view situations and how I react to them, but that is all!  As a person that might have some control issues, this isn’t easy for me. I have always had a strong desire to make the lives of those I care about better. Learning that I have NO control over how someone else’s life works out for them is hard! I have learned that there isn’t anything I can do to make life easy for anyone because I do not think life was meant to always be easy! We all just need to live our life to the fullest and never dwell on what we think or wish would happen!

Thank y’all for visiting my site today! I always appreciate you taking the time to read my sometimes random thoughts and really LOVE reading your comments! I hope y’all are having a wonderful weekend and I hope you are feeling well. Please always know that I am sending y’all LOTS of love❤ and comfort!

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❤Always, Alyssa❤

Out Sick!

out sick todayGood morning y’all. I am so sorry I have not been able to respond to all of your great comments from yesterday and today. I started having a terrible migraine on Sunday afternoon, but thought it had eased up enough to go to work yesterday. I was very wrong about my migraine being better because while I did work yesterday, I started feeling the pain ease back in. Even one of my co-workers looked at me and said “Alyssa, you look terrible!” I did manage to work for six hours, but when I came home did not leave the bed. The massive migraine brought all of my pain to the extreme! Unfortunately, I am home from work today to try to get better. I will do my best to start responding to your comments, but please be patient with me I am still feeling pretty darn horrible!!

I certainly hope you are having a good day and I hope you are feeling okay. Thank you so much for taking the time to visit my site and leave me great comments. Even though I am feeling pretty bad I am still sending y’all LOTS of love❤ and comfort!

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❤Always, Alyssa❤