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❤

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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❤

Amazing benefits of Yoga!

good morning butterflyGood morning y’all! I hope your week has started your week off on a good note and you are feeling well today! I hope y’all have a lovely day and continue feeling the best you possibly can!

This past Sunday I received an amazing yoga tip that can be done at my desk at work from a fabulous fellow blogger! ❤Heather & Dizzy from https://dinosaursdonkeysandms.com/ sent me a YouTube link for a short yoga option that can be done easily at work! It is easy and incredibly helpful. Not only do I encourage you to check out Heather & Dizzy’s site, but please check out this short yoga video. I tried it at work on Monday and was shocked on how much it helped! https://www.youtube.com/watch?v=tAUf7aajBWE

Both Heather & Dizzy have been doing yoga for some time now and knew how much Itransform your health really wanted to give this a try! The two of them share great videos showing just how easy yoga can be. Dizzy ❤is adorable with all her honest efforts and I know that Heather ❤will give Dizzy her favorite treats, ginger cookies!

So not just those of us living with a chronic illness, but everyone could benefit from practicing yoga. There are so many positives to trying this, with no negatives that follow! I think the improvements practicing yoga can provide us can and will be a benefit to our health!

5b25d83cf185a54b8dbe00c0871a5ae2The video I did while at work on Monday (the same one I shared with y’all) was relaxing and allowed the pain in my body to ease up some, which was wonderful! As I discover more easy-to-do yoga videos, I will continue to share them with y’all and if you know of any, please share them with me. I am really trying to find more ways to help me relax and therefore reduce the levels of stress I tend to feel daily!

Thank you so much for stopping by my site today and I do look forward to reading your comments! I do promise to respond to all comments as quickly as I can! Again, please if you have not already viewed💞 Heather & Dizzy’s site, stop by their amazing site as I am more than certain you will find Heather’s personality and humor very encouraging and contagious! Thank you again Heather💞 for all of your kind & encouraging comments & your amazing advice about yoga!  Always remember that I am always sending y’all LOTS of love ❤and comfort! 

My signature heart

❤Always, Alyssa❤

1,000+ Amazing Supporters!

1000 followersI started my blog on July 17, 2017 to raise awareness about Multiple Sclerosis, but also to encourage and inspire those that suffer from any chronic illness or just difficulties life has to offer us that we really do not want. I was just learning about the blogging community and I had only 3 followers, my husband, mother and mother-in-law. Since that time my blog has grown to over 1,000 amazing followers❤! I have learned so much from each and every one of you and I really hope that I have been able to do some good for you as well. I am so very thankful for y’all!!  I never thought that blogging would be so incredible but I am really glad I made the decision to start my blog!

I hope y’all are having a good week! I know you are probably happy that tomorrow is kindnessFriday and then we have the weekend to enjoy! I am definitely really glad the weekend is near considering I have not been feeling all that great. Y’all already know that I have been dealing with a lot of pain and headaches for weeks now without any help from my doctor! I reached out to my doctor on Monday to inform her about the fainting spells I was having, but there was NO response. Unfortunately the lack of caring from my doctor does not surprise me at all and it only makes me more excited to move soon and find a new doctor that will hopefully be more attentive!

I would really like to thank y’all for always being so amazing and caring! In our society kindtoday it is so hard to find people who really truly care about more than just themselves. It seems as though so many have adopted a selfish behavior, but none of you have gone that way in life! All of you are so caring, compassionate, sympathetic and empathetic for others and I appreciate this more than words can even begin to describe! Y’all have given me so much hope that love❤ and kindness still exists in this world!

Thank you for stopping by my site today! I always appreciate you taking the time to read and make fabulous comments, which I will always respond to as quickly as I can. Again, thank you so much for your continued support. I value all the friendships I have been able to make through this blog! As always I am sending you LOTS of❤ love and comfort!

My signature heart

❤Always, Alyssa❤

Behind the scenes of life with Multiple Sclerosis!

My-life-with-Multiple-SclerosisGood 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. ribbonThere 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 multiple-sclerosis-quotes-3course 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 thermacareamazing 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 only choice we havemedication 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.

positive over negativeOver 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!

My signature heart

❤Always, Alyssa❤

 

 

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What I have overcome that has made me stronger!

happy tuesdayGood morning Y’all! I hope your long weekend was full of nothing but happiness and you are feeling great starting this short week at work! I can say that the majority of my weekend was dedicated to resting to get myself feeling better and hopefully making my pain issues just go away! I guess we will see now that the week has started!

When I was first diagnosed with Multiple Sclerosis almost 18 years ago, I honestly viewed this as a punishment of something I must have done wrong during my life. I could not for the life of me understand what I could have done so wrong to deserve a battle like this to live with. It took me so many years to accept the diagnosis and findHope ways to live a❤ happy life not allowing an illness to EVER alter or control my life in any way! I wanted to be the one to continue controlling my life because I did not feel it was fair for an illness to be in control of MY life!

The sad truth is we are not able to choose the way our life is going to play out before we are here to actually live it. Once we are born we just need to live the life we were given the best way we can and not ever give up when things get too difficult. Life is not all about ☀sunshine, butterflies, rainbows and waltzing through the days easily, hard times fall on every one of us and we must learn to alter life when it is required.

I am a firm believer that everything happens for a reason and even if we do not like it or 11324-Everything-Happens-For-A-Reason..agree with what is happening, it is just the way it is! Any obstacles that we are given are not intended to be a punishment in any way, it is just what was meant for our life and all of these obstacles make us even stronger than we were before! All the hurdles along our journeys are put in place so we can just learn to sore over them with grace and strength! These frustrating impediments are all a learning experience for us to grow further!

Let me just say that I think overcoming the complete shock of my diagnosis in some crazy ways made me a stronger person. Yes, I have my bad days when I feel absolutely terrible, but in time I get back to my “normal” self or maybe it is better to say my “new normal” self. It sounds so crazy to say that an incurable and sometimes debilitating present situationillness made me stronger, but it really has! This illness gave me so many reasons to keep fighting for my own health and it has empowered me with determination that does not waver.

Thank you so much for visiting my site today! I always appreciate you taking the time to read my thoughts and ❤LOVE to read your fantastic comments. I hope you have a great day and I really hope you are feeling well. Please always remember that I am sending you LOTS of love❤ and comfort!

My signature heart

❤Always, Alyssa❤

Disability or NOT?

Disability-bannerThere are many people out there that qualify and truly need to be put on disability and there is absolutely nothing wrong with that. When someone makes the decision that they are not able to work any longer and their doctor agrees with them, then you just know it is the right time for taking that route in life. Do some people actually take advantage of this? Absolutely and that is just really sad and an insult to those that do need disability! No one can really be pushed or forced to file for disability as it is a very involved process and does require a lot!

Disability does not have to be permanent, but you must be totally disabled as is defined by the Social Security Administration. The Social Security Administration (SSR) actually anticipates that the condition can improve at any point in time! Aren’t they thoughtful and optimistic? Therefore this requires those that were awarded benefits to participate in a process called Continuing Disability Review (CDR). The reason for CDR is to determine if there have been any improvements in the claimant’s medical or financial circumstances. All approved claims are subject to “diary review dates” after one, three and seven years. Now this does depend on the condition the disability was awarded for and the probability for improvement. All that is required to avoid interruption in disabilitydisability benefits is medical documentation that the claimant still suffers from the impairment the disability was originally awarded for and that there have not been any improvements.

The SSR tries to make this process a little easier for those filing, so their list of impairments are broken down by bodily systems or functions:

  • Musculoskeletal Problems:
    • Back conditions and other dysfunctions of the joints and bones
  • Senses and Speech Issues:
    • Vision and hearing loss
  • Cardiovascular Conditions:
    • Chronic Heart Failure
    • Coronary Artery Disease
  • Digestive Trace Problems:
    • Liver Disease
    • Inflammatory Bowel Disease (IBS)
  • Neurological Disorders:
    • Multiple Sclerosis
    • Cerebral Palsy
    • Parkinson’s Disease
    • Epilepsy
  • Blood Disorders:
    • Sickle Cell Disease
    • Hemophilia
  • Mental Disorders:
    • Depression
    • Anxiety
    • Schizophrenia
    • Autism
    • Intellectual Disability

The medical evidence that needs to be shown must be recent and encompass the time period when the disability started to present is:

  • Physical Examination
  • Treatment notes or reports
  • MRI (depending on illness)
  • CAT Scan (depending on illness)
  • X-ray (depending on illness)
  • Mental Health Notes
  • Blood work notes

 

If I am being realistic and logical, I know that living with a chronic illness disability may be involved in my life at some point. I mean heck, I know the Multiple Sclerosis is not Montelgoing to magically disappear😿, but I do not have to own this until it is absolutely necessary, which is not right now❤!! I believe if I continue living my life in the best way possible, control my stress (which we all know I am really bad at), and take the medication that is best for my body chemistry, I am doing all I am able to control the progression of this illness💞! I am only 36 years old and have been living with this illness for almost 18 years, besides the constant pain I deal with; I think I am doing rather well! As you can probably tell it really bothers😿 me when people make the suggestion I go on disability. It has happened way too many times just because people know what I live with, but they really do not know how it affects me. I do my very best to hide my feelings of pain, however people make assumptions! I do not disagree with anyone that is on disability, but I am so darn stubborn and even if my body might be ready, I am not emotionally😿 ready to take that step.

I really want to thank y’all for reading my rant today❤! This was suggested to me today and as you can tell it did not sit well with me😿! I am not going to say that I will not ever file for disability, but at this point in my life I am not ready as I feel I am still able to disability_is_not_inabilitywork, even if I am not working full-time right now. My working pretty much part-time hours is just the right now, in a few more weeks or months even I might be fully capable of doing those long full-time hours again. 

I hope y’all had a good day! Thank goodness we are half way through the week and the weekend is coming!! Of course I appreciate and even encourage your comments as I promise to respond as quickly as I can! I hope y’all have a wonderful and relaxing evening. As always I am sending y’all LOTS of❤ love and comfort!

My signature heart

❤Always, Alyssa❤