Friday Sunshine!

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struggleGood morning Y’all and a very happy Friday! Even though logically I know it is not possible, it feels like the weeks are getting longer. I had expectations for myself for this week, but those expectations were unfortunately not met. I told y’all in the beginning of the week I was going to try to increase my work hours from 6 hours daily to 7, but I was not able to. I also said I would not be hard on myself if I did not achieve this goal, which is a little untrue. As y’all know I have been struggling with a lot of spasticity in my legs, which is causing a massive amount of pain. I tried to push myself further so I could work 7 hours, but the most I was able to do was 6.5 hours. All I can say is, better luck next week because you know I will keep trying until I achieve my goal!

How was your week? Do you feel like the weeks are getting longer or is it all in my head? I think my week might have felt longer because I wanted so much to work longer hours and I was having so much pain! Frustration was definitely at a high! 

I am trying to make an important decision about whether I should or should not get another MRI. The only reason why my specialist sent the order in was because I haveMS Warrior been back on the Gilenya for 6 months and they want to see if it is helping my illness. Until I mentioned that I was on Gilenya for 6 years previously they did not seem to have any idea and now it might not even be necessary. It is a little disturbing to me that my specialist did not know or remember that I was on Gilenya for so many years prior to October. When she first told me I needed to have the MRI, I thought it was to see if the new active lesions from the October MRI had went into remission or if there were new lesions, I did not know she was ordering this because of the 6 month time line due to restarting the Gilenya! If I am being 100% honest, the only reason I would want this MRI done is to see if there are new active lesions causing all this spasticity and pain. But all the MRI will do is cause me a lot of unnecessary stress and in turn upset me way too much, which we all know the damage being upset will cause. I mean seriously, if all is well with the MRI the specialist mswill say I am doing well with the Gilenya but, if there is any activity on the scan she might say the Gilenya is not strong enough for me and I need to consider starting a different medication. The bottom line is I am NOT switching medications again until there is a cure because the Gilenya worked SO well for me for 6 long years and if the MS has progressed to Secondary, Gilenya is still used to treat the illness. Do you think I am being logical or irrational with my thought process?

I really appreciate you taking the time to visit my site today and I am really looking forward to your comments, which you know I will always respond to as soon as I possibly can! I hope y’all have a fantastic Friday and I also hope you are feeling well! Please never forget that I am always sending y’all positive vibes and lots of ❤love and comfort!

Love 2

Always, Alyssa

22 thoughts on “Friday Sunshine!”

  2. Hey. I find this very inspiring and creative. Writing is really a great outlet for expressing one’s thoughts and sharing pure emotions. You’ve done a great job in doing just that. Nice work! I hope you could also follow my blog page. Cheers! 🙂

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  3. I think you are doing the best you can and if Gilenya is working for you then yes, stay with it! I just wrote a similar piece about the agony of deciding what to switch to on MS News Today so I totally understand your dilemma!

    Nice to “meet” you – was also on the Top 50 list. Glad to meet a new MS blogger among us!

    Take good care and all best wishes.
    Cathy Chester

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    • Thank you for your comment! More than likely I am going to cancel the MRI and just stay with the Gilenya. There is no need to spend money on an expensive MRI, when I already know what I want to do.

      It is really nice to meet you as well! I never really knew about the Top lists until Tuesday.

      I hope you had a good Friday and I hope you have a wonderful weekend!

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  4. While I can’t tell you what to do, I can tell you that they kind of do the same to me about Tysabri. I am required to get an mri at least every 12 months. If I don’t, I can’t stay on it. My opinion is that this has NOTHING to do with ME, it has to do with the drug company having to follow rules and playing the cover their ass game. This one of the times I don’t fight the rules ( i know surprising right?) As far as being stressed about the MRI, is that because you are claustrophobic? I am, and I won’t go in without being “knocked out” well self medicated with xanax….I will have to tell you about some of those stories one of these days

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    • The drug companies just want us to spend crazy amount of money so they can keep their bank accounts looking good! I actually do not have to do the MRI right now because of the fact I was on the Gilenya for so long before. It is not that I am claustrophobic, the results just always upset me really bad! I do not think there have been many changes since October, but I do think the lesions that were giving me trouble are still there causing the same damn issues! It is just so frustrating and discouraging. I definitely want to hear your stories, I bet they are pretty entertaining!!

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  5. I’m sorry you weren’t able to make it up to 7 hours like you’d hoped, but obviously your body isn’t quite ready for that so don’t be hard on yourself. 6 hours is already great and 6.5 is fantastic; you go at your own pace and I know you’ll try for next week but don’t overdo it as you’re doing incredibly well, whether you realise it or not. I actually feel like the time is going too quickly, but perhaps that’s because it’s going in a haze where I don’t feel like I’m achieving enough or doing anything particularly enjoyable. I need to work on that.

    As for the MRI, that’s a tricky one. I think you’re being very rational in your thought process. Is the thought of an MRI right now causing you a lot of anxiety? If it shows less improvement, is there not a case for continuing Gilenya because it’s only the 6 month month and more time will be needed for it to make more of a positive difference (ie. as long as things aren’t being made worse by this medication, surely they can’t take you off it or change it given your past history with it and the positives it’s had for you in the past because this time around it’s not been that long that you’ve been on it). Not sure if that makes sense, I hope so. At the end of the day, you know your body and you know what your past experience with the meds has been, so you should have a large say in what happens next.xx

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    • Thank you for your kind and encouraging words! You always know what to say! I will definitely try for 7 hours again next week and see what happens. The pain issues have been SO high for the past few days, I just couldn’t handle it and pushing myself will only take me backwards in my recovery.

      The MRI does cause me a lot of anxiety because I normally know what it is going to say. I do not think there have been many if any changes since October. All the issues that happened in October are still happening and not easing up much. Honestly, Gilenya is one of the strongest meds for MS and I am not willing to switch to infusion types. I did one once before and it made me sick, so why try another? If I am firm to the fact I do not want to change, they will let me stay on it. There just isn’t a point of spending SO much money on an MRI that will cause stress, leading to more issues and then no med changes. My plan is to cancel the MRI and just keep taking the Gilenya and hope for the best!!!

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      • Sounds more than reasonable to me, and this is exactly what you can explain to them should they have other ideas or question your decision. Stick to your guns, as they say!
        Have a lovely weekend Alyssa, rest up & please don’t be hard on yourself about things, celebrate everything you’ve achieved and are continuing to achieve instead! Take it easy 🙂
        Caz xx

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      • Thank you so much Caz! You really are to put it mildly, amazingly wonderful! I will always appreciate all of your encouraging words and your support!
        I hope you have a great weekend as well!

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  6. Happy Friday!
    6.5 hours is good going! The max I could ever do, including commute was 5 hrs! MRI can’t be a bad thing re lesion progression etc, and if you feel there has been more recent activity, but I know what you mean re the anxious wait for the results. I’m not sure how long we are just left to it so to speak once we are on meds, as I only had an MRI in Jan, two years after being on my first injection meds. My nurse was trying to ask me to switch to Copaxone from Plegridy, but I confirmed I wanted to wait for the results before I needed to think about switching. No lesions, so still on Plegridy. I have no follow up Neuro appt, so I guess I just carry on. Go with your gut, and the thought of switching meds is daunting, but you do need to find one that works for you. Keep me posted, and keep smiling. 😊X

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    • Thank you for your comment, I always appreciate what you have to say! I did the best I could this week with all the pain and spasticity, I will try again next week and hope for the best! Yesterday and today I was only able to do 5 hours yesterday and 5.5 today. I do not think it is smart to push myself too much because that will only hurt me in the long run and it just isn’t worth it for a few extra dollars! I am pretty sure I decided to cancel the MRI, for right now anyway. In my heart I know there have not been any significant changes. The way I feel has not changed much at all, so hearing the doctor talk about the result will just upset me to an unhealthy level. If things are no different next week, I will not push myself too far! Thank you so much for your thoughtful words and understanding me! I will definitely keep you posted. I hope you had a good day today and I hope you have a great weekend!!!

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      • Yes, please don’t push yourself for the hours. I know its hard, and when I was in work I had to say no covering for people on leave etc as I couldn’t do it. Extra money helps,but health is more important. Wise decision re MRI. Do you have an MS Nurse you can keep in touch with if you have concerns?. If not, that’s what we are here for!. You just can never tell though. I had a bad relapse last November,adamant it caused activity, worried for weeks and nothing!. MS does like to keep us on our toes!. I had an ok day. Sore eye, but low, and now I’m about to inject. We like to have a state off for 2 hours!. ;). Have a good relaxing weekend. X

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      • Thank you so much! I am really thankful for you and others on this blog that understand! I am glad you had an okay day. I hope you have a nice relaxing evening and an amazing weekend!!!

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    • Thank you SO much for your encouraging words! I really appreciate you confidence in me and my abilities! I am trying to focus on how well I am doing with being able to do at least 6 hours a day at work, it is better than nothing! I hope you have a fantastic weekend!

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