Almost done!!

Happy Sunday 1Today, is officially day 5 of the insanely high amount of steroids my doctor had me on! I am so glad that tomorrow I will be just doing the taper down amount for only a few days, but at least I will not have to push through taking 20 steroids a day! Steroids have to be the absolute worst tasting thing in this entire world! I have gone through 5 very long days of not being able to taste a single thing and not wanting to eat because of it. I am really hoping that I will start gaining taste buds back soon!

During this course of steroids, I felt like my emotions were literally all over the place! I could go from being so angry and irritated, then 3 seconds later be in tears about absolutely nothing. I kind of feel bad for my husband, the poor man never knew what  mood I was going to be in. But he did try to distract me with other things, like watching interesting videos on YouTube. I am not going to lie, I knew he was trying to help but all that did was make me angry because I did not want to not have to focus on anything. My neighbor even tried distracting me by bring over a 6 week old kitten, that completely stole my heart. 

Now that day 5 of high steroids is over, I of course was hoping to see an amazing change in how I am feeling. But, I can not lie, I went to bed around 2 am and I woke up at 6 am in a terrible amount of pain. That was a little frustrating, but I do know steroids do have to run their course and I will be back to my normal self soon! I do still have to go through Butterfly Patientthe taper down, which is of course a lot less but it is still for about another week. I really do not want to take anymore. I told my husband yesterday that I have been taking more medicine over the past week that actually eating and drinking. I know that was not a good decision on my part, but I just could not taste anything and I just was not hungry. Granted, it has been a difficult few weeks but I still have some hope that life is going to improve and I will not live the rest of my life in pain! I have had to force myself to learn patience during this time, which I have never been good at. 

Y’all can probably tell that I love butterflies! I believe that butterflies come around to offer some kind of support when we are struggling. I always believed that butterflies Butterfly-lovewere a sign from someone who has left this world and they are flying around to let you know they are with you still. This actually came into my mind after my Grandfather passed away. I remember sitting outside for lunch and this same butterfly continued to fly around me. It gave my heart comfort to think that butterfly was my Grandfather that knew I was having a hard time with losing him. It may sound crazy, but anytime I am having a hard time in life a butterfly seems to appear in front of me. 

I am supposed to be returning back to work on Tuesday. I am a little nervous about this because I still do not feel 100% and might still have some mood issues then. I know it is a few days away, so hopefully things will improve before then. I know that my job is understanding, so if I start the day and can not make it they will understand. Steroids Butterfly hopenormally give people so much energy, but I just feel completely worn out all the time. But again, I am going to remain hopeful that things are going to get better and I will actually be able to work a full day without getting too fatigued. If you can just hold onto hope, you can really accomplish anything you want!

I also recently made the decision to start researching new MS Specialists. Sadly, there are not many in the area in which I live, so I am looking at other cities nearby. As you probably already know, I am not all that comfortable with the Specialist I am currently seeing. So instead of just settling on a doctor that I may not trust completely, I am doing something about it. I already have a short list of doctors that I am interested in. I have been able to read about them and it seems like they have a passion to help and actually listen to the patient. I will start making phone calls on Monday and just go from there. In order to make a change in your life, you have to take the initiative to do so.

I hope y’all had a great weekend! Thank you so much for continuing to read my posts and making comments on them as well. All the support and communication with you has been so helpful to me! I really enjoy being able to get out what I am dealing with and I hope that I have been able to help others dealing with something similar. Remember, never hesitate to leave a comment and I will respond as quickly as I can. You are also very welcomed to email me anytime and I will respond to you as well! Enjoy the rest of your Sunday and try to stay positive through anything life throws your way!

Love 2

 

Always, Alyssa

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9 thoughts on “Almost done!!

  1. I’m sorry you were on such a crazy round of steroids, I’m still learning about this stuff but it would be hard for me to choose what is worse, the steroids or the relapse! I just read your “about,” sounds like we are similar, getting diagnosed because of eyesight problems. But you were so young!

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    • Yeah, I was young but I guess that is a good thing in a way. Catch it early and try to get it under control! Between steroids and a flare up, I will say it is a catch 22. The flare up sucks and can last too long but the steroids make you feel terrible but the flare is supposed to be shorter. Today, is my last day of the HIGH dose and I feel like I was hit by a few trucks. That is pretty crazy, we were diagnosed the with the same issues. Honestly, from what I do know about MS, my case is mild for the most part. This is my first bad flare up in years. Yes, I deal with pain but it is just part of life for me now. I try SO hard to remain positive and some days, it is harder than others. I really hope by blogging you are able to find some comfort and PLEASE let me know if I can do anything at all to help you!!!!

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  2. It might be a bit late on but – i was once given the advice of hiding each Roid pill in a Mini Marshmallow. Unless the little sods escape from the marshmallow you can swallow it and avoid the “I have been licking a car bumper” taste.

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  3. YAH last day! You did it! Just remember you are over the hump and you made a great decision to look for a new neuro. ( Just remember you will still be emotional, so maybe hold off on making a permanent change

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    • Thank you so much! It has been a difficult few weeks, but hopefully there is something good in the near future! Thank you so much for all of your support and encouragement!

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  4. I’ve had MS for seven and a half years, but have never had steroids. The more I read about what they can do to you, the more glad I am that I’ve never needed them. I only have muscle and fatigue related problems though, not eye problems. If I did have problems seeing, that may change things around regarding using steroids …
    thanks for sharing your story and best of luck with everything!

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    • I am so glad that you have not had to do steroids!! They have their benefits but my goodness, I was starting to think the benefits do not outweigh the negative. But, I am done with the high amount and doing a taper down, so hopefully things will get better, sooner than later!!

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