Good morning Y’all! I hope you have an amazing day!! I wanted to take a moment to share what life is like living each day with Multiple Sclerosis. It obviously is not all sunshine and rainbows, there is so much more to it!
I have lived with Multiple Sclerosis for almost 18 very long years and this illness is still a mystery to me! I mean for some the cold makes them feel much better, whereas for others it makes them feel absolutely horrible. Some feel a little better with warmer temperatures and others it takes away all their energy and makes them feel terrible. There is no right or wrong, it is all based on each individual person!
My doctor always told me that the heat is the worst thing for me and that might be true in a sense, but the heat does not bother me near as much as extreme humidity!!! Of course the heat causes me a lot more fatigue, but it does not cause the increase pain that cold weather does. I actually swear by my friendly heating pad because it decreases my pain immensely! I might live in the city, but I am a beach girl at heart! I love the beautiful and relaxing sounds of the ocean waves. I think it is the only time that I am not full of stress and anxiety.
The cold weather on the other hand causes me nothing but extreme pain because I get so tense from being cold. Of course with cold weather you can put enough layers of clothing on to stay warm, but the chill that lingers in the air can be miserable. I did find an amazing solution for dealing with the frigged temperatures. They sell a heating pad that is mobile and no batteries needed. This fabulous product is called Thermacare Heat Wrap.
Living with Multiple Sclerosis comes along with a lot of decisions that need to be made and sometimes they need to be made immediately, which I am not all that great at. There are tons of diseases modifying medications available now and finding the right one can be quite challenging. Of course when I was first diagnosed there was a limited amount of choices, so I put ALL of my trust into my doctor. We soon found out that I am not one that can give myself shots. The funny thing is I do not have any fears of needles; it was the medication I was injecting myself with that I could not handle. The medication would cause me to feel like I had the flu and burned like fire going in. I did try everything possible to stay on the injection based medications, but I failed and just stopped without telling my doctor at first! After a few months, I did finally confess to my doctor and we had to figure out what I would be comfortable with and could tolerate. After several failed attempts, I did finally find the medication that worked best for my body chemistry. My goodness my doctor was a very kind a patient man, it really is too bad he had to retire! I do not think I will EVER find another doctor I will connect to as much as I did him.
Of course there are always more decisions that need to made because MS is a constant changing illness. Even after deciding on the disease modifying medication there seems to always be more medications that doctors think should be taken. I do believe that living with MS you have to be willing and able to alter your life when necessary. To me it does seem that the conditions with MS can change at any moment and without any kind of warning.
Over my years with MS, I have experienced vision loss (which I did gain back), intense legs pains, muscle spasms throughout my entire body, fierce back pain, persistent headaches and some memory loss at random times, which is a little unsettling. But through it all, I have never truly given up. Of course I have had some massive frustration issues, but I will NOT let this illness to defeat the strong person I know I am. I am very determined to remain as strong as I possibly can, but I also want to help others hold onto their optimism. Y’all know that I am a very strong believer in the fact that positive thoughts will bring positive results. I honestly believe that it takes a lot more energy to be negative than to just be as positive as you can!
Thank y’all for visiting my site today. I hope y’all enjoyed my thoughts on my life with MS so far and of course I will appreciate any comments you have. I do promise to respond to all comments just as soon as I possibly can. I hope y’all have a wonderful Wednesday! Thankfully we are half way through the week and the weekend is coming up soon. Please remember that I am always sending y’all LOTS of love and comfort!
Always, Alyssa
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thank you for showing others how to keep on going!
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My pleasure! There really was SO much more I could have wrote, but I try my hardest to keep posts shorter. I highly doubt people want to read my “book” of issues!
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it gets overwhelming to write everything down I am sure…………
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It definitely gets overwhelming, but sometimes writing it down clears my mind of it!
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so glad that blogging helps! and you help others by helping yourself! thank you.
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Thank you so much! I do hope that I am helping others, that has been my goal!
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Reblogged this on Survivors Blog Here.
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❤❤❤❤❤❤❤❤❤ you are a strong and beautiful person. I am so sorry for your struggles, but so impressed with your attitude.
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Thank you so much! I am not feeling all that great today, but your comment made me feel a little better!! Struggles come with life and I believe it is all about finding the best way to handle them. Thank you so much for your encouraging comment!!
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Think positive of finding an even better doctor who is an expert with MS, it can happen. We made many sacrifices to allow me Lyme treatment. Insurance will only pay for RX’s. Most of my drugs were IV’s. We flew to DC every month for three year at the cost of 6K a visit. We took a second mortgage on our house so I could live. I didn’t like it and felt quilty. We decided if I would get well it was all in. Your health is number one to you, you will find a way no matter how many sacrifices made. 🙂
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Thank you so much! I am searching for a better doctor. I do not need a doctor to give me warm and fuzzys, but I do need to feel comfortable with them and know they are knowledgeable. WOW you went through a lot. I am glad things are going better for you now!
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I do consider myself a Survivor. The problems as an adults are not the trauma. My childhood was fucked.
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I completely understand, especially about childhood!!!!
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I love the sea also…so calming. :). What treatment were you on when you first started injecting?. I’m on plegridy, and still get flu symptoms, and it hurts going in!. But, its working so I’ve put up with it. :(. Hope you have a good rest of the week.:).
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The sea is definitely the most relaxing and beautiful place ever♡! I tried Rebif and Copaxone in the beginning, but now I have an oral medicine, Gilenya. I am glad plegridy is working for you! I hope you have a great week as well ♡
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:). I am pleased you have an oral medicine. So much easier, and hope the side effects are bearable. Sun has been shinning in the UK, so rest of the week should be nice. Still job hunting though, so a bit blurgh. Keep smiling lovely. 🙂
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It definitely is a lot easier and seems to be working. I am so happy to hear the sun is shining in the UK enjoy it as much as you can ♡♡!
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Oh and try to not stress much with job hunting. I am doing the same because my husband and I are moving soon. It has been a little frustrating and stressful. I wish you lots of luck!
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I love this! You truly are a warrior and an inspiration!! I can’t imagine all that you’ve been through, but you remain so upbeat and positive; it’s wonderful!
I really enjoy reading your posts and learning more about you and MS and how you deal with/overcome it. Keep on keeping on! ❤️
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Thank you SO much Hillary!! You have no idea how much your comment means to me. I try my best to keep moving forward and remain positive, some days are a lot harder than others!
I hope you are doing well and I am so glad to hear from you!!
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You are so welcome!! I can imagine there are some bad days, but I hope you’re doing well pushing through them!
I am doing well, I hope you are too! ❤️
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I am so glad to hear you are doing well today! There are always the good days followed by the bad day, but I will always push through them! Strength and positive thinking are powerful things!! Much love sweetie!!
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This was a great post, I can see your MS is a bitch of a thing, all the best to you in your fight to calm it down …
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Thank you so much! Yes, my MS is not the nicest thing in the world, but I will not surrender!!
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Wow. I have a much better understanding. We all have such individualized needs to meet, dealing with chronic issues. This was an excellent post. I so enjoyed it, Alyssa! XO
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Thank you so much! I am glad you liked this post. It took a lot of thought and maybe a few tears, but I am glad it came across well!!
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This was a beautiful and encouraging post for those battling through their illnesses. I pray for your comfort this week. I will end with this…..YOU ARE TRULY A WARRIOR. What a story and a testimony to your strength. You are so resilient, always so positive, encouraging, thoughtful and kind. Sometimes the strength is best seen through a person’s heart. Hope you’re enjoying your week so far.
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Thank you so much! I really appreciate you telling me that I am a true warrior. I am trying so hard to keep fighting this battle. Honestly, some days are much harder than others. I do refuse to allow this illness to win our battle!! I hope your week is going well, thank goodness tomorrow is Friday!! I hope you have a nice evening and a great day tomorrow!
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I am a beach girl also. Grew up on the east coast of North Carolina. I live further inland now but I miss how calming the sounds of the oceans was to me. Keep fighting.
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Oh wow another Carolina girl! It seems like the Carolinas have become tropical with the crazy weather! If I was at the beach, it would not be much of an issue. Unfortunately I am about 4 hours inland. Do you still live in North Carolina?
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Yes, but only 45 mins inland. I don’t get down there much anymore.
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I am sorry you are 45 minutes from the ocean, but at least you are a little closer than I am. Sadly, I only get to go maybe once a year. Seriously the beach is the only place where I feel no stress and anxiety! I live in a city that is way too big and really can not wait to get out of it! The older I get, the less I like city living!
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I agree. I love being out in the country away from the crazy city and the beach is still close enough to spend the day there. I just don’t go anymore because it is just too hard for me now. I did do a girls weekend last year there and I did much better than I thought I would.
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I am glad you were able to enjoy a girls weekend last year, I hope you will be able to go again this year. I understand traveling not being easy, but you will get back there when the time is right!!
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Definitely, and when I can’t get down there, I have apps that I can play to hear the sounds of the crashing waves!
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That is great to have apps with the ocean sounds! I have one of those noise machines with the sounds and I LOVE it!
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Those are really good too! I sleep with my earphones on. It gives me something to focus on when the pain wakes me up.
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It is great to have something helps sleep. Sometimes with the pain we endure, sleep is almost impossible!
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The heat drains me something fierce. Luckily there is no humidity where I am. That makes it unbearable. The cold hurts. 😉 I love your blog! You’re real and compassionate. Hope your weekend is going well!
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Oh the heat definitely drains me as well, but nothing compared to the humidity!!! That is all there is right now where I live is heat and nasty humidity! I just need to accept it though because it isn’t going anywhere until probably November! I am so honored to hear you love my blog. I do try to always keep everything very real because I do not like to sugar coat things! I really appreciate you reading my post and taking the time to comment. It means so much to me!!!
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Hi Alyssa, thank you for sharing. We understand the struggle of having to deal with an autoimmune disease and recognize your strength. If you would like to learn more about autoimmune diseases and ways to improve your health through functional medicine (such as food therapy and movement therapy) check out our blog. We just posted a food spotlight (best and words foods) for Multiple Sclerosis you should check out: https://drbonnie360.com/2018/12/05/food-spotlight-on-multiple-sclerosis/ 🙂 #spooniestrong
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Thank you for stopping by my site and sharing your site with me. I am definitely going to check it out as I am more than certain you will have very helpful information!!! I do appreciate your advice!
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