Brighter Days Must Be Ahead!

Happy Sunday 1Happy Sunday! I hope y’all have enjoyed your weekend! It has definitely been a very difficult few weeks or even months, but all bad times have to have an ending point, don’t they? The dark skies in life have to lift into bright sunny times at some point, right?!

Y’all know that I have been suffering from the worse MS flare up I have had since I was diagnosed, 16 very long years ago. I have tried getting up to brush myself off from what I have viewed as failed moments, only to fall back down into hard times again and again. I have tried holding onto my positive thoughts just to wake up feeling like it was all for nothing. How many times have I said I was going to try going back to work and not succeed? It is so frustrating to try something several times and not be able to accomplish my end goal! Sometimes I do wonder if all of this is from the tail end up the flare up or if it is feeling sorry for myself for not beating all of this sooner! I have had exacerbation’s several times before that have gotten me down but I have always won the battle! So, why this time do I feel like the MS is defeating all of my strength?

A little more than a month ago I do remember the doctor telling me that I have many new active lesions on my brain and spine.  But, I mean damn these lesions can not just stay active indefinitely, can they? I do not know which scare me more, the new lesions on the spine or the brain! What I can say is I have a lot of nausea, headaches, dizziness, I have lost the ability to focus, terrible fatigue and I have some other motor skill problems. I have experienced balance problems before, but now I feel like it would be so easy to Positive thoughts butterflyjust tip over when I stand up. In my mind I do know that time heals all injuries, which is what the doctors call the lesions that I have. But in my heart and the not so logical part of me, I wonder if this is ever going to get better. Curiosity got the best of me last night and I decided to read over the MRI report, again! It might sound crazy, but I do not remember hearing the doctor go over the report with me a month or so ago. Honestly, I probably tuned out everything she said because being shown proof there is an issue and being forced to accept it is really hard for me to do. It is so much easier to just try to ignore what our body is going through sometimes!

I honestly have not had the energy to do a post in a few days now. In a way I do believe this flare up has been my fault and could have been avoided if I did not make the decision to change disease modifying medicine from Gilenya, that was working for 6 years to Tecfidera. But, I did feel that some things I was dealing with could have been being caused from the Gilenya. Then when I tried discussing this with my new doctor, I felt that she was not hearing what my concerns were. I feared that I was on the Gileyna for too long because originally I was told you could not stay on it without a break for an extended time period. Plus, I could not understand why I was staying on a medication that I could not tolerate the full amount anyway. I am a very headstrong person and do not appreciate when any doctor dismisses my thoughts, it only causes me to be adamant to do the opposite of what they recommend.could be worse I have asked myself several times if I regret my decision to switch my medicine and I really do not know the answer. If I never tried something new, I would have always wondered if it would have been a better choice for me. Then again, now I am wondering if I would have had this horrible flare up no matter what medicine I was on. I have never done well with having so many questions but literally no answers! 

I have a question for everyone that reads this blog! Do you think it is an unhealthy thing for someone who battles any type of chronic illness to read and write about their illness several hours a day? In my opinion, I do not think there is anything wrong with it. I have been told that it is not a good thing to do and everyone needs something else to focus on that does not involve anything to do with the battles they fight with their illness. I guess I feel that no matter what I am doing whether it be writing about my illness or reading a book that has nothing to do with illness, that illness is not going away and if I can write something that helps someone else and in turn helps me to get my emotions out, I think it is worth it! But, please tell me if I am viewing this wrong.

Thank you for stopping by and reading my thoughts for the day. As always I truly love your comments and I do always respond as quickly as possible. I do want to get back to work tomorrow and start doing more with my days, so I am really hoping things will work out this time!! I have been dealing with so many pain and other issues I think trying to focus on work might help me some! I am sorry that my post may have been a little all over the place, I am still having some focus issues so I hope I did not have too many crazy grammar issues! I hope you have a great evening and I hope the start to your week goes fantastic!!

Love 2

 

Always, Alyssa

 

Advertisements

About Positively Alyssa

I was diagnosed 16 years ago, when I was only 19 years old, with Relapsing Remitting Multiple Sclerosis. I had gone to my eye doctor because I had lost vision in my left eye. Prior to my appointment, I had prepared myself to have the doctor confirm that I would be blind in my left eye and that was all. Never in a million years did I expect to hear the doctor tell me that after consulting with his colleagues, that I need to go for an MRI that day because they were thinking that with my symptoms that I had MS. Just a couple hours later I went to get the life altering MRI. I remember that phone call like it was yesterday. My eye doctor called me from his home at 9:30 at night to confirm what they suspected, I in fact had MS. He immediately referred me to a specialist he knew and I was able to get in to see him that same week. Luckily, after a round of steroids, my vision came back in my eye just leaving me with leg pain that would continue to be part of my life. Through the years I have tried numerous different medications that are meant to slow the progression of the disease down. I was never good at the injections and it wasn't because of the needle, it was because the medication burned like fire going in. Still after all these years I still go through my battles of denial, anger, frustration and sadness. However, I have always said that I would NEVER allow MS to control my life but I would control the disease. For the most part, I have been pretty successful with that. I mean we all have our bad days but it doesn't make the situation any better. With this blog I am hoping that with my experiences, endless amounts of research and a powerful fight i me that I can not only help others going through this but that I can learn from others as well. Living with the ups and downs of MS can be challenging but the power of the mind can beat anything that is thrown our way!
This entry was posted in Uncategorized. Bookmark the permalink.

47 Responses to Brighter Days Must Be Ahead!

  1. You have a Chronic Illness, Chronic Illness is not who you are. You look back, look forward. If you have any questions about medication go to FDA.gov, there is everything you want to know about every MS drug or any other you take. You’re also a nice Southern woman, when talking to doctors you are a confident women who has the wheel with her illness. If the pharmacy information given with medication raises questions, you have to get on phone right away. There is not dismissing you. The best thing to do is go to FDA.gov and look fir the Prescribing information from the manufacturer. That is the bottom line info, the info used by the FDA to approve the medicine. Don’t always take a lazy doctor’s explanation of the drug unless they have shown to be an expert. Talking about taking drugs for long term is relative, it’s no definite time. Also after a drug is approved, the FDA may change their position and say yes it can be taken longer or no it should not.
    Don’t kick yourself. You didn’t do this to yourself and what does it matter. You’re here, you have the power to move forward and start tomorrow differently. I’ll look on FDA site and you do the same, let’s compare notes. Is there a drug that was suggested that you turned down? You want to read up on what the new drug brings to the table.
    I look at new medicine as new technology, it can do something a little different or why spend millions getting a drug approved.
    You’ve had the worst flair yet, learn for this experience to prepare for the next time. Maybe there are things you would do different.
    You’re strong than you know it. Also give the doctor the benefit of the doubt, they are a doctor.
    Bigs Hugs
    M

    Liked by 2 people

    • What I do know is the medicine I was on for 6 years did help me not have flare ups and I have learned to listen to myself more. Yeah maybe trying something new was a mistake but it might not have been. I am back on a medicine that has worked and I am sure will continue to work. I just need to reduce my stress a lot!!! Thank you so much for your response. Things will get better in time, I am sure of it!!!! Take care and have a good day!!!

      Liked by 1 person

  2. Pamela Read says:

    My neurologist always warned me that an attack could last 6 to 8 weeks. And then I could start to heal. i’m sending you good thoughts. You will get through this.

    Liked by 1 person

  3. Whether or not switching medications caused the flare up, I don’t think it’s worth beating yourself up over it now. These sorts of illnesses can be tricky to predict.

    In regards to your question about talking about your illness each day … I don’t know. I think it would depend on the person and what suits them.

    Personally, I don’t like to dwell on my illness all the time (even when I was very sick). Doing so does start to make me feel sad and hopeless, and also I just get bored of the topic. On the other hand, I don’t like the silence that surrounds these illnesses. I don’t like the pressure to present as ‘normal’. I am always sick, I am always aware of it, and I refuse to pretend otherwise. So I suppose I try to maintain a balance between dwelling on it and being open and honest about it.

    But I think it’s completely personal. You are the best judge of what is helping you and what is bad for you. Having a space to vent can be healthy.

    Liked by 2 people

    • Honestly, my husband keeps telling me that doing my blog is not healthy because he thinks all I do is chat with others with illness and read their blogs, this is not really true. I do chat with others that understand but not only are they helping me but I am able to help others. It helps me feel like I am doing something when I hear that what I write helps someone else. It might sound crazy but I love helping other people. It is in my nature to want to listen to and help as many people as I can. Those that read my posts might be going through hard times and if I can be inspiring to them all my efforts are very worth it!! Blogging does allow me to get my emotions out and feel like I am hear and supporting others. Thank you for your response, it is so appreciated!!!!

      Liked by 1 person

      • I think you know the answer to whether or not it’s helping you 🙂 It’s helping. It can be frustrating when other people don’t understand why we do certain things–and it’s extra frustrating when they tell us something we do to be healthy is actually unhealthy and we shouldn’t do it. Hopefully your husband will see in time how it is helping you.

        Liked by 1 person

      • Thank you so much!!! You know how men are? They always think they are helping even when they really aren’t!

        Like

  4. Going thu sth like this and finding time and courage to share your story, now that’s really something.

    Liked by 1 person

  5. I’m “precoffee” and flu-d right now, so I hope what I am writing doesn’t come out as bossy. Alyssa, I know you want to help other people, and you want to help other people even more than you help yourself. It is obvious with every word you write. Have you ever flown on an airplane when they give the safety talk and they stress that YOU need to put your oxygen mask on before trying to help someone else? You won’t be good to anyone else if you are not taking care of yourself. Personally, I like reading your blog. I think you help do help a lot of people, but even more importantly I would like to keep YOU around. I don’t know how much time you spend with the blog, or how much is too much. Only you know. You know how I started pushing myself to walk everyday? I was having trouble balancing things in my life, so I made a rule 10 minutes out in the sun every day. Walk on the treadmill FOR ME, then blog time. Hope this helps. Hugs to you

    Liked by 1 person

    • Thank you and I am sorry for my late response! I can admit sometimes I do like helping others more than myself, but I am trying to do better about that. I honestly do not spend much time with the blog especially with how I have felt lately. I only do a little bit here and there and I do enjoy it. But, I am slowing down and not doing a post everyday. I honestly just can’t do it right now. I appreciate your very kind comment and a treadmill is a great idea:)!!

      Like

  6. pjlazos says:

    My husband is on this drug and experiencing some of these symptoms. Sometimes the drugs are worse than the disease.😞 Your positive attitude is inspiring!

    Liked by 1 person

  7. Invisibly Me says:

    Sending you my very best wishes as always – Here’s to a brighter, healthier and happier future ahead because I know it’s possible ♥
    Caz x

    Liked by 1 person

  8. Hello my dear. I don’t think it’s unhealthy to write every day about your illness. I need to write every day about my own chronic illness in order to process my feelings. Every morning I journal about my feelings, which is helpful, and sometimes I post something on my blog. I’m sooo glad you wrote about this because lately I’m struggling with new complications of my illnesses, and journaling isn’t enough.Maybe if I post something on my blog I’ll get helpful feedback. I’m scared and wonder if my doctors are hearing me right. Do I suffer the pain and wait until I’m back in ER before i ask for more help? I’m all for marching forward, distracting myself and staying hopeful, but putting my feelings on my blog, or in a book can really help. Thank you for sharing so much. I love it.
    Yours, Aunt Martha

    Liked by 1 person

    • I agree with you that it is helpful to write about our emotions. I do not feel like it is unhealthy at all. Like you it makes me feel better. I am so sorry you are going through a difficult time. Is there anything I can do for you my dear? Much love my dear!!!

      Liked by 1 person

      • How did I this message? Sorry for the delay in my response. I need to check your latest post to see how you are, but wanted to say “Hi!” How are you???
        I was tempted to write a post about all the complications I’m having with my central line catheter. I have no one to talk to about it and most doctors know nothing about them. My internist is trying to help, and is sending me to a dermatologist because the skin around my catheter is red and painful. I have had ports for about 10 years, but it;s hard to find a doctor who knows how to treat them when they’re infected. My internist also put me on oral antibiotics, which was a relief because I thought he was going to send me to ER.
        Being sick can be very lonely. Writing helps with that.
        Take care. Aunt Martha

        Liked by 1 person

      • Oh goodness Martha, I am so sorry for what you are going through. Yes, being sick can make us feel very lonely because not a lot of people understand. I have always said writing helps me feel better about things. Please never forget you can email anytime you need anything and I will always be there for you!!!!!!

        Liked by 1 person

      • Thank you. That means a lot. Feel free to email me anytime too.

        Liked by 1 person

      • Oh my dear sweet Martha, I know things get hard in life and everyone needs a escape that works for them. With that said, no one should tell us what we are doing is wrong. I have loved to write since I was a child and I still love it and it helps me through SO much. I hope you have a great evening a good day tomorrow. I am ALWAYS here for you!!

        Liked by 1 person

      • Thank you. All of your writing is very uplifting. Reading about another person’s struggles can make me feel less alone, and put things in perspective. I recently read a great book by Amy Silverstein, called My Glory was I Had Such Friends. She had a heart transplant at age 25, then needed another one at age 50. She writes about her fears and all the medical procedures etc, but she never seems to lose her will to live. I’m often reminded that things could be worse. When I had my left lung removed in 2005 at UCLA Medical Center, the young woman in the bed next to me was having a double lung transplant. As miserable and scared as I was, my situation seemed like a walk in the park(not really) in comparison to hers.
        Thanks for being there. I’m always here for you too.

        Liked by 1 person

      • I can imagine you were terrified going through that and of course the person next you was terrified as well, but that should never discount how you felt. All of us go through struggles in life and they are all hard but getting through is what we should be proud of. I am always glad to be there for you and wish I could do more. Stay your strong and amazing self and things will get so much better!! Always, Alyssa

        Liked by 1 person

  9. cassieo1993 says:

    I hope my bluntness doesn’t offend you Alyssa. But one thing that helps me is remembering it could always be worse. I’ve been off work (except for a three week attempt to go back in July) since June 10th. And now because I’m so bad, this past week my neurologist took me off work until February. I’ve been walker and/or wheelchair bound since Oct. 3rd and everything is numb/tingly below my collarbone. And I’m only 24 years old… I don’t want to discount that what you’re going through isn’t difficult. I thought it was difficult when I wasn’t as bad as I am now so I get it. Despite all my hope and positivity it still got worse. But I’m still stronger than this! Now I pray and I pray to get back to where I was two months ago, even though at that time I thought it was at its worst. No matter what, I still try to remind myself it could always be worse. Know that you’re a survivor, because no matter what, every day you get out of bed and you’re stronger than this disease.

    Liked by 2 people

    • Thank you for that!!! I know things can always be worse than they are now, I just get so frustrated with myself and some that are around me. I am sorry for what you are going through, but you are stronger than this and someday very soon you will be all of this!!! I pray that things will improve for you really soon. If there is ever anything I can do for you please do not hesitate to contact me. Well wishes to you!!

      Liked by 1 person

  10. Whatever helps you cope with your illness is the right thing for you! I don’t always write about mine, but when I do, its beneficial to me, and my readers. Two for one! I feel so much better after I write my thoughts and emotions. ((hugs))

    Liked by 1 person

  11. As someone who gets how you feel and who is blogging about it too, I think you should do whatever is therapeutic for you to do and if that means writing about your struggle, then That is what you should do. I find that there is strength in what you talk about and I love that even while you are struggling, I am amazed at how positive you manage to stay. It shows your resilience and that is inspiring. I hope things turn around for you soon xo

    Liked by 1 person

    • Oh my goodness you have NO idea how much I needed to hear that! My husband is the one that thinks it is not healthy to blog about the MS or read about it a lot. I honestly do not only do blog things, lately I have been resting so I can get better. I do not have the ability to focus enough to do a real from the heart blog and that is what I want to be able to do again. This helps me because so many other that read my posts understand what I am going through and offer comments. I love reading other peoples issues and try to help them as well. My main focus has always been to helps others, while learning from them which does in turn help me so much! You helped me SO much today to know that blogging is what I want to do, I want to write about what I am dealing with and I want to include other things that get my mind spinning as well. Thank you for everything you said in your comment!!!!!!!!!!!!!!!!!!!

      Liked by 1 person

  12. I definitely believe it is completely healthy and can be beneficial to read and write about your illness. Sometimes through writing your true thoughts and feelings that you may have been suppressing come out and that is good. It is unhealthy not to talk about your illness, to pretend it doesn’t exist, or to suppress your emotions. And reading about it can help you learn different ways to treat/deal with the illness. It can also give you an insight into other people’s lives who have the same illness and will help you feel less alone.

    Keep doing what you’re doing! I love your blog and I will be praying for your health!

    Liked by 1 person

    • Thank you so much! I really do agree with you. I have had a few people in my life tell me it isn’t healthy to write about MS and read about it but I strongly disagree with them. It isn’t like I am obsessing about my illness I am just living with this. Not writing about things does not make them just go away. I honestly have take a break and not doing a post daily because I just do not have the energy to do it but I will get back there I am sure! Thank you SO much for your wonderful comment. I can not tell you how much this meant to me!!!!!!!

      Like

  13. We need each other! No one else understands! Keep on writing!😘😘

    Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s