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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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❤

How do you describe?

HOPE 2.0How do you describe the pain you are in when it can be SO indescribable at times? Living each day with an incredible amount of pain definitely gets a little old, but it also leaves no choice except to keep moving forward. Dwelling on the pain does not make it go away, but I do believe makes it SO much more intense. On my worse days, I do my very best to just keep my mind busy so I am not thinking about the pain I am feeling. It really seems like the moment I stop doing something all I can think about is how much I am hurting, whereas if I just stay busy I do not have time to allow myself to really feel it. I do understand that rest is important, especially when the pain levels are high, but at the same time rest makes me think too much and then I hurt more! I guess it can really be a no win battle between me and my pain, but I do not ever want it to defeat me entirely!

I think everyone that battles with pain issues handles them differently; we all just need a way to manage and escape at times! Do you struggle with pain and how do you handle it? Today for instances my pain is pretty darn high, so this morning I watched a little TV and then did laundry. I did not do anything too strenuous as that would probably cause painful daysme to hurt even more. Normally I would go grocery shopping, but thankfully NOT today!! When I am trying to keep my mind busy to avoid thinking about my pain I often will read a good book or write because both of those things keep me relaxed! I thought for a long time about what I wanted to write about and honestly had a little bit of writers block, but then decided I should write about what I was feeling. I am guessing that many of you can relate to this painful topic and I really wish none of us could!

So on top of dealing with my normal pain, I have been battling with terrible migraines that just will not let up! I went to bed last night with a migraine and woke up with it still with me. I guess I was hoping I could sleep it away, I hate to admit it but I was wrong! pain changes peopleThankfully right now it has finally started to ease up and now it is just a mild little headache that I can handle. I never thought I would say this but the pain I have daily is so much easier to live with than migraines I have been struggling with ALL week! Even though I know I can’t, but if I could choose I would much rather have my back and legs hurt a lot worse than to have a migraine.

Thank you so much for stopping by my site today. I really do appreciate you taking the time to read and do encourage you to leave a comment, which I promise to respond to as quickly as I can! I truly do love your comments and they are always very helpful! I hope your weekend is going well and you are feeling as great as you possibly can! We all deserve a restful and peaceful weekend! As always I am sending y’all LOTS of❤ love and comfort!

My signature heart

❤Always, Alyssa❤

Half way there!

wednesday.jpgGood afternoon y’all!  I hope you are having a wonderful Wednesday! I am beyond excited that this week is almost over and next week is a four-day work week because of the holiday! 

I have honestly had kind of difficult week dealing with pain issues! There is a certain amount of pain that I find tolerable, but then there is another kind that makes me feel absolutely miserable and incredibly fatigued! Even though I have been dealing with a terrible amount of pain that is mixed with headaches and muscle spasms, I have been able to go to work. I did not make it through six hours Monday and Tuesday, but I did today! Of course after whatever hours I do work, I come home and I am absolutely exhausted. But the simple achievements are better than none! There has been another issue I have experienced this week and I have no idea what is causing it. Both Monday and Tuesday while sitting at my desk at work, I had several what seemed to be fainting episodes. It was really scary, but I was thankful I was sitting down. I did call my doctor’s office to let them know about this, but not so surprising they did not call me back. Have any of you ever experienced this before?

I am a pretty resilient person and I never give up on the goals I have for myself!! A while back I had made the goal to work six hours each day, which honestly did not happen at first. However I did not allow that to keep me down for too long  and tried to not view it as failure. I have always been veryresilience1 hard on myself, but seriously that does not help at all. Being too hard on ourselves only sets us up for hard times, which is never good. My goal now is to just continue to always be resilient and keep moving forward! 

I have to say everyone on this blog helps me see the strength I have and keeps me focused on that strength! There are so many incredible people who I have had the pleasure to get to know and I am very thankful for this. There really seems to be so much ugliness in the world today, but y’all allow me to see the good in others!

I hope y’all had a great day and I hope you are feeling well. Thank you for stopping by my site today and I really do encourage your comments. Y’all already know that I do respond as quickly as I possibly can! I hope you have a lovely evening and do what helps you relax! As always I am sending y’all LOTS of ❤love and comfort!

My signature heart

❤Always, Alyssa❤

 

Lesion Party

discouraging.jpgFor the past few weeks it seems that the issues I have had with my legs, arms and back has increased drastically! Now like most of us I was curious as to what could be causing this increase of pain, tingling, burning sensation and pins and needles, so I looked it up on Google. Oh my word looking things up online is almost worse than dealing with what the doctors have to say! Honestly the main reason why what I read online was disturbing is because it was pretty close to what I already suspected, but there really is something about reading it that makes it a little more upsetting.

It has been in my overworked and mildly stressed mind for weeks now that these issues are being caused from new lesions or those that were already present are active now. It shut down the partydoes not seem to matter if I am resting or moving around, the pain does not just go away! This possible lesion party that is going on in my body needs to be shut down! This party is more like a hostile takeover of my ability to live pain-free rather than a happy time with friends having fun like most parties are!

With all of the different issues I have been fighting with for far too long and keeping it from my doctor, today I finally have had enough and sent a message to my doctor to see her recommendations would be. Y’all already know that I completed paperwork last week to hopefully receive MRI assistance, as I do realize that is what is going to be needed, but I am still waiting to hear back about that. Do you just wish these doctors could hear what we are going through, make a true educated assessment and not have to go through the MRI ordeals? I personally think what we are suffering with could be something a true and competent specialist could easily figure out what is causing it and diagnosis the issue.

With all the said, I ended up staying out of work today because of how I was feeling. Even though my legs did not feel stable enough, I did get up when my alarm went off this morning  and made an attempt to try getting ready for work. However, when the short distance from ribbon-e1528247275292.jpgour room to the bathroom felt like 10 miles, I knew anything more would be too hard on my broken body. Crazy thing is I did rest all weekend, but it did not help at all! It really seems like rest hurts, moving hurts and basically anything I do is painful so what do you do when that happens?

I certainly hope y’all had a good start to the week and I hope you are feeling well. I appreciate you taking the time to visit my site today and your comments are always appreciated and encouraged. It may take me a little longer to respond just because it is a difficult day, but I promise I will respond! As always, no matter what I am going through I am sending y’all LOTS of love and comfort!

Love

❤Always, Alyssa❤

Does pain cause you to be angry?

Good morningGood morning y’all and happy Wednesday! Thank goodness we are half way until the weekend is back! Are you having a good short week? When my office is closed on Monday, don’t get me wrong I love the day off, but I end up confusing the rest of the days of the week and being a day behind! Heck Tuesday morning I thought it was Monday, but I was thrilled to find out when I got to work it was Tuesday! I guess that is one of lives many pleasures! During a normal week, my mind is always a day ahead of time, so usually disappointed! 

Anger, pain and depression are three negative experiences that are bonded so closely together it can almost be impossible to know when one of these feelings ends and another begins. Pain can impact our emotions so deeply, producing a wide range of emotions from sadness, to anger to possibly rage! The feelings of anger are so often anger and painmisinterpreted as hostility because others may not understand what we are dealing with at any given time.

Anger can actually be a motivating force to put things into action, instead of just being all talk and complaints. For instances, when we are dealing with an insurance company and all the many hurdles to get through, just to get a needed procedure. Or even when trying to get our doctor to listen to our requests and not just pushing our needs to the side so they can move onto their next patient.

There are numerous physiological effects we can have from anger. Anger can be felt in our chest, head and the entire body! This could mean that the anger we feel increases the pain already felt, which makes so much sense to me. I started writing this because I have been dealing with SO much pain lately in my EmilysQuotes.Com-anger-pain-negative-sad-Eckhart-Tollelegs, back, arms and head and that pain is causing me so much frustration which quickly changes to ANGER! Logically, I know that being angry with my pain is not going to solve anything, but it just keeps happening without fail! I am typically a very calm and ❤caring person, but lately I feel like I am losing my temper so much faster and a lot easier! Today I had a co-worker, who let me just say has already made some really negative comments about me in the past, stop me to ask if I was okay because I seemed to not be walking as she thought would be “normal”. Considering my legs have been in a lot of pain lately, I do walk a little slower and refrain from using my right leg when I can, but pointing that out was not necessary. Could she have been being caring? Probably not! But I was hateful with my response when I said “I am fine!”! She had to push the issue a little further causing me to say once again, “I am FINE”, with a lot more force before walking away. Was I wrong in my reaction? Or was it the pain and frustration talking? Who can really say? But I do not feel like I was wrong and I do think it was the pain and frustration talking!

Do you personally find when you are in pain you have less patience for dealing with pain and angerothers? If so, how do you control your emotions and remain pleasant to others? I know I sometimes am shorter with my poor husband❤ and he  does not deserves that at all, but he also knows that is not me and I do not mean to be short with him. However, I still will feel bad about my less than ❤sweet attitude! I guess the vows are hold true, but maybe we should have added, with attitude and not as well!

Thank y’all for taking the time to visit my site today! I always appreciate you taking the time to read my posts and I really love to read your comments, which I will always respond to as quickly as I can! I hope you have a great day pain-free day! Please never forget that I am sending y’all LOTS of ❤love and comfort always!

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❤