What are the struggles & benefits of living with a chronic illness?

Struggles and benefitsThe struggles of living with any chronic illness are numerous and endless. So many chronic illnesses come with various issues that might be difficult to treat, which can and does lead to SO much frustration. Through many visits to several different doctors, we are caught up in SO much medical debt, because the United States does not offer free healthcare like ALL other developed countries offer! For instance, I am required to see my MS Specialist to try slowing the progression of my illness down, but have to see another specialist to treat the pain issues! It does not make any sense to me because the pain is a direct result of the MS, so why it is my MS specialist can not treat the pain as well? Oh that’s right, because there is an opioid epidemic so anything related to pain needs to be monitored by a painchronic-pain-chain-diagram specialist who only sees me for 3-5 minutes every 2 months! Do you really think the pain doctor actually specialized in pain or they just could not hack it with being a real doctor? That might sound a little cruel as I am sure this “pain specialist” passed medical school, but seriously there are no medical schools out there that really specialize in pain!

Another struggle those of us that are living with a chronic illness faces is dealing with the dreaded insurance companies! We all know these insurance companies only see $$ dollar signs when they see our information come through! They know our medications cost a small fortune, so therefore we pad their paychecks with the many medications we are required to take. I know that my Gilenya alone without assistance would cost around $1500 a month and that is with insurance! Who can afford that on the wages we make? That’s right NO ONE can and quotes-to-inspire-people-with-chronic-illness-RM-alt-722x406therefore our conditions would worsen drastically over time! Do the insurance companies care? NOT AT ALL! I do believe that the insurance companies and government work together so they can be very well off in life without any regard for human life! Now with the talk among the government, some of us many worry that we will lose our expensive insurance in the near future. I do sincerely hope that I am wrong about this though, but that is honestly what I think is on the agenda!

Some of us may worry about the struggles of working a full-time job, as many of us probably can not afford to work part-time hours! Even if we are able to work a schedule with reduced hours this can not only be a financial burden, but also causes nonsenseYou-Dont-Look-Sick-722x406 judgments from co-workers! The comments that are made can be extremely frustrating and offensive, but we are doing all we can in life! I know that all of us would prefer to be able to tolerate full-time work, but when we are not able to we are doing the best we can and should not be looked down on! As you can probably tell I have heard the comments made about working ONLY 6 hour days, but I am pushing myself to do this!

Another struggle some of us may face is fun times with parking! Some of us may have handicap parking, which should be making our lives easier! However, some may look perfectly normal to the naked eye. We may suffer from something know as an “Invisible Illness”, which of course we feel but NO ONE sees our struggles! They may make butterflies-cant-see-their-wingsignorant comments about someone who looks completely normal parking in a handicap parking space. Rude comments have been made towards me and it did hurt my feeling terribly! But it has now been a few years since I was given the handicap parking, so I have had many experiences that I want to forget ever happened. Now days I do not allow negative comments to get to me as much and just feel sorry for the people making the ignorant comments and even worse for their children to grow up in that horrible environment because they may end up just as ignorant!

Fatigue and migraines are somethings I know many of us deal with almost daily! Both of these can be relatively difficult, but we handle them the best we can! Now I do not get migraines daily, but I get them enough to understand how hard they are to cope with.Background concept wordcloud illustration of fatigue Fatigue on the other hand I struggle with daily! I normally begin feeling much fatigue around 1:00 every day which is why I get into work earlier. For some reason, I feel much better earlier in the day and worse as the day progresses. It does not matter what time I wake up, always around 1:00 I feel like I need a nap!

OH WOW I almost forgot, I did say there were benefits to living with a chronic illness! The benefits are often very difficult to find, but they are there somewhere deep down. When living with an illness has NO cure it can make us more sympathetic, empathetic, and compassionate to what others might be dealing with at any moment in life. It may falling down is how we groweven give us the opportunity to meet others that understand our struggles and also offer support to others living with something similar! It may take work, but we are able to build strong networks with many others that can be very beneficial to all that is involved. Through the blogging community, I have been able to build powerful and valuable connections with SO many very incredible people who I have come to care so much for! I am truly thankful for all of my blogging friends and feel we might not have met if it were not for the chronic illness!

I sincerely appreciate you visiting my site today and always encourage your comments as they are fantastic! I hope y’all have a lovely day and you are feeling the best you can! Please remember that I am always sending y’all LOTS of love❤ and comfort!

My signature heart

❤Always, Alyssa❤

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Thank you!

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I really want to thank y’all ❤for all of the amazing support you have provided me through my amazing journey of starting this blog! I remember when I started my blog in July 2017, I knew literally nothing about the blogging community! The only thing I knew was I loved❤ to write and I wanted to help others but also really wanted to raise awareness about Multiple Sclerosis. My intentions have always and will always be to encourage and inspire others to live their lives to the fullest, no matter what struggles they are faced with. Everyone experiences some kind of struggle throughout their life time whether it be a chronic illness, knowing what really makes you happy, moving to a new city, career changes, loss of a loved one or anything else that may bring you down. As silly as this may sound, I have always wanted to bring sunshine☀ to the darkest of days for all those in need. 

I really want y’all to know that I am always here to offer support whenever you need it! We may live in different cities and even countries, but I am just an email away! I hope here for youyour weekend has been wonderful and now you are ready to start a new week with a fresh start! Thank you for visiting my site and leaving great comments! I do really enjoy the conversations I have had with so many of you! I honestly view each of you as great friends! As always I am sending y’all LOTS of love❤ and comfort!

My signature heart

❤Always, Alyssa❤

800 + Followers!

Sending best wishesSince starting my blog on July 17, 2017 with 3 fantastic supporters my husband, mother and mother in-law, I have had the opportunity to get to know so many incredible people all over the world❤. My goal for starting my blog was to raise the awareness about Multiple Sclerosis and I really wanted to help others battling Multiple Sclerosis and other chronic illnesses by offering support and endless encouragement. We all know that our daily lives are not easy with random symptoms that appear with and without warning, taking various medications, going to countless doctors’ appointments, being confronted with numerous challenges, being forced to accept innumerable changes to our lives daily, even hourly and so much more! It is never easy finding others that truly understand what our lives are like.💕 By creating this blog, I have been able to learn from so many others that live with Multiple Sclerosis and other chronic illnesses affecting their daily life how they find the strength and courage to keep moving forward!

In our society today, I think it can be really difficult to be “different” from everyone else. I do not believe being different should be frowned upon, but it should we should all be proud of our differences no matter what they may be💕. Whether our illness is visible by the way we walk or talk, or invisible it can be challenging. Some people have been forced to leave their career as it became too much to handle. Some people have even been forced out of their career because people have lost their ability to have compassion and empathy for others. That just is not right to cause anyone unnecessary stress and shame!

❤I am so excited and honored to be able to share this with you! As I said when I started my blog in July 2017, I had 3 followers and that was great. Now 10 months later I am 800+ Followersfortunate enough to have more than 800 amazing followers that I am able to get to know! ❤The individuals I have met through this blog have been absolutely amazing! I would say that starting my blog was one of the best decisions I have ever made as it has brought me so much joy! 🌷The numerous extraordinary people I have been able to make strong connections and friendships with has been beyond incredible! All of us know what it is like to live with a chronic and incurable illness so we are able to offer support and encouragement to each other! ❤Y’all have truly been a blessing in my life and I am thankful for each and every one of you!

💕I really want to thank all of you for continuing to follow my blog and making incredibly inspiring comments. Through the comments you make on my site and the communications we have on your own site, I feel like I have made so many lifelong 🌷friends! 💕Let me just say once again, thank y’all for your support, encouragement, great advice and never judging my crazy moments, because I do tend to have them! I hope y’all are having a fantastic week and I hope y’all are feeling well! As always, I am sending y’all LOTS of love and comfort!

Love 2

❤Always, Alyssa💕

Top 50 Multiple Sclerosis Blogs

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Top 50 Multiple Sclerosis Blog

Good morning y’all! I want to wish you a great day and I hope you are feeling well! I actually received an email on Tuesday from Anuj Agarwal, the founder of Feedspot notifying me that my blog had been selected by the panelist as one of the top 50 Multiple Sclerosis blogs on the internet. I do want to share the link with you as well https://blog.feedspot.com/multiple_sclerosis_blogs/.

I am still at almost at a complete loss for words have found this out, but also so incredible thankful! It is an honor to be associated with blogs created by Jen with trippingthroughtreacle.wordpress.com, Heather and Dizzy at dinosaursdonkeysandms.com, Angela at fuckms.ca, Megan with bbhwithms.com, Ashleyslifewithms.wordpress.com and many others. These ladies are absolutely breathtaking and so full of inspiration; I only hope that I can live up to their standards with as much grace as they have!

I started my blog in July of 2017 with the intentions to not only raise awareness about Multiple Sclerosis, but also to inspire and encourage others battling this illness to keep moving forward and never give up! I have always believed that giving up is never an option no matter how difficult the journey becomes. I have wanted to share the experiences I have dealt with over the almost 18 years I have lived with Multiple Sclerosis to shine light on what you can and will overcome! I find it extremely important to always do our own research on ALL medications that may be suggested from the specialists because it is our body that will be dealing with the possible side effects and we all know our body’s way better than any doctor ever will!

Since starting my blog, I have had the opportunity to communicate with SO many people all over the world that are either living with Multiple Sclerosis or another chronic illness. All these of people have taught me so much about their illness and how they manage their illness, which has been very enlightening for me! Those that I have been able toMS Warrior have continued communication with about Multiple Sclerosis have also taught me a great deal about things I honestly did not know about or possibly was told but I ignored completely! When I was first diagnosed, I did not want to hear or believe ANYTHING my ❤sweet and patient doctor had to say, so it went in one ear and out the other. Sadly, most of what he said back then was actually true, who knew?

I feel privileged to have built so many ❤friendships with people in other states and countries because we have so much in common due to the struggles we face daily! This is a network of others that truly understand what it is like to live with an illness that does not yet have a cure, but hold onto the hopes a cure will be found sooner than later!

I would like to sincerely thank all of my followers for your continued support over the past 10 months❤! I appreciate everyone that takes the time to read my posts and make fabulous comments; this has enabled us to build great friendships even if we have not actually met in person! The support we are able to offer each other online is fantastic and incredibly helpful! For anyone that has not been able to visit Jen, Heather & Dizzy, Angela, Megan or Ashley’s site, they all provide great information and are truly lovely ladies, you will never regret checking out their sites💕! Always remember that I am sending y’all lots of love and comfort daily!

Love 2

Always, Alyssa

Different types of Multiple Sclerosis

types_of_ms_chart_largeAs y’all already know, Multiple Sclerosis is a very unpredictable and for some debilitating illness of the Central Nervous System. With MS, the immune system eats away at the protective covering of the nerves. MS disrupts the flow of information within the brain and between the brain and body. Multiple Sclerosis does not discriminate and can attack anyone no matter race or gender, but it is diagnosed 2 to 3 times more often in women than men. Multiple Sclerosis does affect each person differently, so no single person even if they have the same type of MS will experience the same exact symptoms. With that said I would like to take this moment to give a description of the four different types of Multiple Sclerosis.

Relapsing-Remitting Multiple Sclerosis, (RRMS) is by far the most common form. This type is 80-85% the initial diagnosis of MS cases.  RRMS involves clear episodes of inflammatory activity and well-defined attacks of new or recurrent symptoms. The patient will typically experience partial or even full recovery between the episodes. Symptoms do vary between each individual, but some well know traits are: tingling and numbness, visual loss or changes in one or both eyes, fatigue, weakness and balance problems. It is important to know what your baseline is on all these issues so you can communicate any changes with your specialist.

Primary-Progressive Multiple Sclerosis, (PPMS) is another type that is less common. Ms_progression_types.svgThis type is composed of only 10-15% of all MS cases.  With PPMS neurological functions are impaired and become more significant as the disease progresses. Patients will experience occasional plateaus in the progression, but symptoms can also worsen with no relapse between them. There is less damage done to the brain with PPMS, but more damage done to the spinal cord. Symptoms that can come along with PPMS are problems walking, stiff legs and trouble with balance. Like I have already said, it is so important to know what your baseline is with anything to do with your health, so when there are changes you are able to communicate those changes with your specialist.

Secondary-Progressive Multiple Sclerosis, (SPMS) is actually the next stage of Multiple Sclerosis. I have already shared with y’all that I was diagnosed with Multiple Sclerosis when I was only 19 years old, so this year will make 19 years for me. Time flies because it feels like it was just yesterday when my specialist flipped my world upside down telling me I had this illness. Reports indicate that 50% of those with RRMS will develop SPMS within 10 years and 90% will develop in 25 years. SPMS is similar to RRMS, but may or may not involve the occasional relapse. Symptoms with this progressively worsen and may include bowel and bladder problems, weakness and coordination issues, stiff and tightness in legs, fatigue, depression and problems thinking.

MS SymptomsProgressive-Relapsing Multiple Sclerosis, (PRMS) is progressive from the beginning.  With PRMS there will be clear and acute relapses with and without recovery from the damages. The illness will continue to progress between relapses. Symptoms that are associated with PRMS are muscle spasm, weak muscles, chronic pain, vision changes, dizziness and decreased bladder functions.

All those years ago when I was first diagnosed I did a lot of research on Multiple Sclerosis. Now it was a long time ago, but I do not remember reading that RRMS can possibly progress into SPMS in a matter of time. Sadly it was not until recently I learned that I did not know everything I should have. It was not completely my doctor’s fault for not sharing this with me, it was mine for not learning and or remembering this information. Talk about being a little shocked when I found out it does not necessarily matter if I take the medication I am supposed to in order to slow the progression down. This illness has a mind of its own and can progress no matter how hard you fight it. Maybe that sounds a little negative, but I guess the truth is reality is not always positive. 

I know many of you already have a lot of knowledge regarding Multiple Sclerosis, but I have a goal to raise awareness for everyone! This is an illness that crept its way into so many lives, completely uninvited and just will not go away. I want to believe that fight for a curesomeday there will be a cure and our lives will improve drastically. I look forward to the day that I am not dealing with massive amounts of pain, headaches, numbness, that annoying tingling feeling and vision issues. Until that day comes though, I will continue to live my life and enjoy it as much as possible. I will continue to do my best to help and motivate others that are struggling with illnesses and other issues in life. I want to be able to bring positivity into the lives of others to combat the world of so much negativity. I would love to believe it only takes one person to change another person’s  life!

I hope y’all are enjoying your weekend and feeling well! Again the weekend went by pretty fast, but I was able to get my hair done and some cleaning done in my house, which was a fantastic feeling! It is so helpful being able to take short breaks in between cleaning the house because if I didn’t, it would make me feel absolutely horrible with additional pain!

Thank you for visiting my site today! As always I would love to hear your comments on what I have shared. Being able to read your comments and respond builds a great and supportive network that we all need. I hope the rest of your Sunday goes very well and you are able to rest up for the week ahead! Sending y’all much love and comfort!!

Love 2

 

Always, Alyssa

Huge thank you!

Thank-You-So-MuchI am completely astonished by the amazing amount of support all of you have offered me since I start my blog in July 2017. I started this blog with only one follower initially, my husband. I made the decision to start this journey because of my passion for writing and my strong desire to help others that may be going through hard times. I felt that after living with a chronic illness for almost 18 years I could offer some hope, courage and strength for others. I am very proud to say that I am achieving my goal more and more each day due to the gratitude I have received from many of you. At this moment with each post I make over 600 individuals are reading what I write and so many make gracious comments to me that I am helping them through difficult times. I have heard so many times that my positive thoughts and encouraging words have inspired others, which really makes me incredibly happy. All I have ever wanted to do is help and motivate others that may have fallen on hard times or may possibly be struggling with illness.i-am-here-for-you

I want y’all to know how much I have enjoyed getting to know you and also learning so much from each of you! All of us deal with something that is not easy and we all have special and unique ways to cope our situations. I truly hope that y’all know that I am always here to help in any way I can. Our struggles are real, but they are always strengthening our abilities to handle the next day! Continue to stay positive and know that it is okay to lean on others. It is also okay to have a bad day and not feel very optimistic, we all have those days. However, it is important to not dwell on a bad day and remember that tomorrow is a new day with new opportunities for happiness!

I hope y’all have a great evening! Thank you so much for stopping by my site today. I look forward to hearing your thoughts in the comments and I do promise to respond to you as quickly as I can! I love the fabulous communications we have had! I am sending all of you lots of love and comfort!!

Love 2

Always, Alyssa

You behind the illness- told in 4’s

About me

Thank you Kim, Keepitmindful, I am so sorry I am a bit behind with answering the questions! I really loved learning more about you! It is still crazy how alike we are! I feel that we have a great community through this blog and I really enjoy getting to know so many people! It is great being able to connect with others that truly understand what we deal with on a daily basis! I am so thankful that you asked me to be apart of this! I hope you are doing well and feeling great!!

Four places I’ve lived:

  1. Springfield, VT
  2. Dover, NH
  3. Charlotte, NC
  4. Greenville, SC (Well soon this will happen)

I  am a little boring because I have only lived in the United States

Four places I’ve worked:

  1. Tribute Properties (Apartment Manager)
  2. Carolinas HealthCare System (CNA)
  3. Carolinas HealthCare System (Human Resources)
  4. Movement Mortgage

Four favourite hobbies:

  1. Listening to music
  2. Reading my favorite books
  3. Reading blogs
  4. Writing

Four things I like to watch:

  1. Hawaii 5.0
  2. General Hospital
  3. Designated Survivor
  4. Law & Order Special Victims Unit

Four things I like to read:

  1. Blogs
  2. James Patterson’s book
  3. Nicholas Sparks book
  4. Educational/Self-help books (Getting control of stress!)

Four places I have been:

  1. Jamaica (My honeymoon)
  2. South Beach Miami
  3. Key West Florida
  4. Snowshoe, WV

Four things I love to eat:

  1. Pizza
  2. Lasagna
  3. Donuts (not too often)
  4. Italian food

Four favourite things to drink:

  1. Sprite
  2. Hi-C Fruit Punch
  3. Mimosas (extremely rarely)
  4. Wine (on holiday)

Four places I want to visit:

  1. England
  2. Hawaii
  3. St Lucia
  4. Austrialia

Four bloggers I’d like to tag:

  1. msgracefulnot
  2. Hillaryrobyn
  3. Colettechristianson
  4. Crankypants

We were only able to tag 4 people but if anyone reading this would like to take part, please do. I really look forward to learning more about y’all!! 

Love 2

Always, Alyssa