Accepting realities!

acceptanceSomething that I have had a really hard time admitting and accepting is that Multiple Sclerosis is a disability. Whenever I have applied for a job, there is always that annoying question “Do have or have you had a disability.” I mean what kind of BS question is that to ask someone? Of course I want to say “NO”, but Multiple Sclerosis is listed as a disability on the darn application and I can’t falsify anything on an application because that could result in me being disqualified for a position I applied for and want. I think this is so invasive and completely ridiculous, but I guess it is what it is in life!

For some strange reason the words disabled and disability shatter my heart into aimages million pieces and cause me to feel like a useless failure . I do realize how irrational this may sound, but that is how I have been feeling. It made me incredibly sad when I had a difficult time walking through a store last weekend because my legs and feet were experiencing SO much pain and weakness. All
hashtag person not disabilityI wanted to do was cry, but I couldn’t because I view that as letting this illness win the never-ending battle we have been in for years and that will NEVER be an option for me!!

I know I already shared with y’all that I figured out I am gluten-intolerant without the expensive tests a doctor would want to run. It seems like a punishment to have to deal withlife isn't fair the issues Multiple Sclerosis comes along with and then add gluten-intolerant to the mix seems quite unfair. I know we all deal with random issues and keep on moving forward because we do not have a choice. I am also very aware that many others deal with SO many other struggles that are far worse than what I am, so I am really not complaining. I am going to share more about this gluten-intolerant situation in a later post.

tired.jpgThe truth is, because I am always so exhausted during the week after working 8 hours every day of the week, I often don’t have the energy to write as much as I would like to. I end up with so many random thoughts running around like crazy in my mind; it gets so hard to keep track of them all and have those thoughts come together for a good read and one that I am proud of.

For the past week or so, I have been experiencing an increase in the number of horrible do not confuse bad days as weaknessdizzy/black-out spells. I have had these issues happen before, but never so many in just one day. At least 2 days last week, there were several moments when the room went completely dark and there NO were sounds at all, which under other circumstances would be great. There was one time I was talking with a co-worker at her desk about work and all of sudden I felt weak, light-headed, hot as hell and dizzy. Luckily I was standing very close to the wall, which kept me standing upright. It might have been pretty embarrassing if I all of sudden fell to the floor at this new job.

I am not really sure which of these issues are more images (3)terrifying; dizzy spells, black-out moments or the combination of the two. Of course I would say the combination of dizziness and black-out would the most terrifying because you are dealing two different disturbing issues at the same time. I have dealt with dizzy spells for so many years now, but I have found ways that help me limit the duration of my dizziness, most of the time at least.

Truthfully my experiences with black-out spells aren’t plentiful in comparison to dizziness, but I have enough sense and knowledge to download (6)understand how horribly upsetting they can be. I remember a few years ago there was a period of time when I had a several short black-outs throughout the week, but they weren’t anywhere near as severe as they are now. I am not sure if its stress, lack of sleep, weather changes or something else. The list of possible reasons really could go on and on and on, but I really just wish they were STOP!

Thank you so much for stopping by my site today. I will never pressure you to leave a download (7)comment, but I do encourage your comments if that makes any sense, but I know your thoughts will be amazing. I promise to respond to your comments as quickly as I can! I hope you are feeling well and enjoying your weekend! Sometimes I think the best part of a weekend isn’t getting out and staying busy, but not having any plans at all so there aren’t any time requirements. My days are set in stone during the week with work, which I tend to strongly dislike, but I guess it is just the life of adulthood. I enjoy spending my 2 very short weekend days living in the moment and not doing anything that might cause unnecessary stress. Please remember that I am always sending y’all LOTS of love ❤, comfort and many positive vibes!

My signature heart

❤Always, Alyssa❤

Advertisements

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❤

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❤

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❤

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❤