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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Yesterday was World MS Day

world ms daySo World MS day was yesterday on May 30th and I did not make any posts about this. I did not ignore World MS Day because I do support the research, but MS is something that plagues my life everyday and it takes so much out of me. My energy level has been pretty low lately and I have been dealing with a lot of fatigue and PAIN! I only want to share information when I can put my heart❤ and soul into writing, but unfortunately yesterday just was not the day! I am trying my best to make up for this today💞!

Y’all know that I have battled MS for almost 18 years without ever giving into the illness. I made myself a promise when I was diagnosed that I would never allow this to control my life and that someday I would win the fight! I am a strong believer that positive thoughts brings positive things into our lives, but you also know sometimes that is easier said than done! MS adds so many different issues to everyone’s life and none of these funworld ms day 1 difficulties are the same for anyone! We all experience this illness in similar, but also different ways. I guess maybe that is the reason it has been so difficult for the doctor’s to figure out a cure, but someday I must believe it will happen for us! 

My journey with MS started when I had lost vision in my left eye, but thankfully the vision came back after a few days of steroids. Y’all already know that steroids are never any fun, but I have definitely had my fair share of this not so pleasant and I guess helpful drug. Over my years with MS, I have experienced so much pain at times and numbness at others, it has been absolutely miserable! But I still refuse to give in and keep fighting a good fight! 

I hope y’all have had a good Friday Eve and hope you are looking forward to a nice relaxing weekend! I really hope y’all are feeling well and of course staying as positive as you possibly can! We all must stay strong to fight through this illness until the wonderful day of a cure. Please never lose hope for this because I do believe it is going to happen for us! Your comments are really appreciated and I love❤ to read them. I do my very best to respond as quickly as I can! I will continue to always send you 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💕

No one said it was easy

living with chronic illnessGood morning Y’all and happy Friday Eve!! Just one last day until the much desired weekend is here! I hope y’all have a wonderful day!

I do not think anyone that lives with a chronic illness has ever said, “This is so easy to deal with.” Living with any type of chronic illness, no matter what it is, takes the willingness to adjust to a life you never dreamt of living and never giving up the fight against the illness itself! It means taking on tasks, that before the diagnosis would have been so simple to handle, but after the diagnosis adds some new challenges you never even knew existed.  It means learning about new medications, that still may seem foreign to you, but you understand them enough to know the benefits to your health. It means relying on doctors to give you accurate and detailed information, but also having the strength and courage to question everything they say to you. It is all about knowing your own body and learning what your “new norms” are and knowing when something is not right! It does not matter how long the doctor went to school for or how many awards he or she has received or even how many of their patients sing their praises, they will never know your body better than you do. They are there for us, as the patient to feed us the knowledge about our illness and the various medications approved to manage said illness, not to tell us what to do because that is not their choice!

weathering-the-storm-alone-can-be-scary-but-in-the-24568066.pngThere are so many things I would have done differently when I was first diagnosed with Multiple Sclerosis, if I had not been SO shell-shocked by the news! I do not think I was ever fully prepared when I went into my doctor’s appointments; I just went because it was required of me. I was so young when I was diagnosed, so I was not mature or logical enough to think things through first, I just acted solely based on impulse and impulse control when we are young is pretty much non-existent.

I have thought a lot about what advice I would give the young me that would be helpful. I would tell the younger me to always keep a notebook of questions and or concerns for the doctor, so that I did not forget them as I so often did. I would also strongly advise the young me to get all doctors’ notes printed out and keep them with the notebook. It is amazing how many inconsistencies there can potentially be between what the doctor puts in his notes, that we do not see and what was actually said in the office. Unless the blogger-image-1184647580doctor’s notes are specifically requested, they will never volunteer them to you and those notes are your business to protect!

How long have you been living with a chronic illness? Do you remember how you handled it in the beginning and would you have done anything different, if anything? Knowing everything you know now, is there anything you would have changed or did you handle everything well and you do not have any regrets? I think most of us have defensive mechanisms that help us with dealing with tragic events in our lives and that is okay, as long as we handle the issue or issues at hand. Some people deal with the difficult events life throws their way in very negative ways that only causes additional issues. I think some of the most troublesome events from life have a way of teaching us valuable lessons and they are not punishments in the least bit! 

I want to thank you, from the bottom of my heart for visiting my site today. I am looking forward to reading your comments as you know they are always encouraged and I will respond as quickly as I possibly can! As always I am sending y’all LOTS of love and comfort!

Love 2

Always, Alyssa

Invisible Illness?

chronic illness factI am so frequently hearing about invisible illnesses now. What does that really mean? Fibromyalgia, Multiple Sclerosis, Rheumatoid Arthritis, Chronic Fatigue Syndrome, Depression, Diabetes and Digestive Disorders are just a few illnesses that have been labeled as invisible illnesses. I have Multiple Sclerosis and yes, for the most part it is invisible because no one can see the pain or any other issues that I am dealing with. I do think the most frustrating things I hear are: “You do not look sick”, “Have you tried vitamins?” and the classic “There must be a cure for it.” I want to believe these comments and questions are not from ill intent, but from those that just do not understand. you don't look sick

Honestly, I think the reason why the label of “Invisible Illness” brings many questions to my mind is because most illnesses are invisible. Why does someone need to have skin rashes, walk with assistance of a cane or walker, require a wheelchair or be attached to an IV to be sick? There are many people out there that may be battling cancer, well that is not really seen. Or what about those that deal with Chronic Sinus problems which is also not seen. They may have a running nose or watery eyes, but no one pays attention to that.

We can even take this a step further! What about people who are HIV positive or even have AIDS? These illnesses are not normally seen unless there has been extensive progression, which may cause rashes, sores and or lesions. You could be walking through the mall and pass several people who suffer from HIV or AIDS and you would not know it because at that moment, it is invisible.

invisible illnessWhat about people who suffer from Migraines or Chronic neck and shoulder pain? Now for the most part this person may look and act completely normal, like they do not suffer from extricating pain several other days of the week, but the fact is they do suffer in pain! During the times when this person does not have a Migraine or shoulder and neck pain, this would in my opinion be an invisible illness, but please tell me if I am wrong.

I do not mean for anything I said to not show credence for our issues, but I would like to be able to acknowledge all the other illnesses that are not visible to the naked eye. I guess I just do not believe those that are dealing with Migraines or other pains should not be included into an invisible label. Statistics state that 2-3 million adults in the United States suffer from Chronic Migraines and 90% of them are forced to miss work because of this issue. As far as I know, Migraines are not in the invisible illness bubble but really should be. Migraines can be completely debilitating and just miserable!

I believe that there is a huge difference between sympathy and empathy. We never really know what another person is going through in their lives, so the best thing to do is always be kind to everyone! We may meet someone who has just been diagnosed with a chronic illness and they are completelyKind word devastated, so something we say to them can either make their day a little better or even worse! Kind words can go along way in another person’s life. I always ask myself when I am talking to a new person, do I want to be a positive in their lives and make them smile or do I just not care enough to make a difference? I always choose to try to make a positive difference in everyone life because everyone’s feelings matter to me!

I appreciate you taking the time to visit my site on this rainy Sunday! I hope y’all had an amazing weekend and I hope you are ready for the new week to start tomorrow. I really do treasure the comments you make and I do always try to respond as quickly as I possibly can. I hope you are able to spend the rest of your weekend comfortable and relaxed. I did not want to forget to mention, the picture at the top, “I Don’t Look Sick? You Don’t Look Stupid. Looks Can Be Deceiving!”, is on a t-shirt that I actually have! I think it is a pretty great shirt, but some would probably disagree! Sometimes you have to add a little bit of humor to a bad situation! As always I am sending you lots of love and comfort!

Love 2

Always, Alyssa

Snowflake Illness

snowflake illnessChronic Illnesses are like snowflakes because like all snowflakes are so different from the other and each person’s situation with illness is different from another. You will never see two snowflakes that look exactly the same, just as you will never find two people with any illness that experience the same exact issues. There might be some similarities, but there are also some strong differences.

Personally, over the almost 18 years I have been living with MS, I have not met anyone that is dealing with the exact same issues that I do each and every day. Again, there are always some similarities, but they are never identical. I have met in person and through this blog others that are battling the MS fight who have equivalent issues to what I live with, but sometimes what they are struggling with is vastly unique to my own experiences. Even though their trials are something I may have not dealt with, I can totally relate to the hassles that are caused by illnesses!

I believe having the ability to meet others that understand what your daily struggles are in life is so helpful. This gives you the opportunity to learn from someone else, so that if you ever experience something similar you have someone to chat with that truly understands! I strongly feel that there are SO many that do not understand what anyone with an invisible illness goes through on a daily basis. Considering these illnesses are so incredibly unpredictable those living with the illness does not even know what to expect day by day, or even hour by hour. Can this be frustrating? Absolutely! But all of us, no matter what battle we are fighting are winning because of how strong we each are!

snowflakesThink about what illness you are fighting and think about those you have met with the same ailment. Now, think about if anyone has ever had the exact same struggles that you do. Can you think of anyone that is a mirror image to you? I know that I can’t! Most of the issues I deal with every day without fail is pain and some numbness problems. After chatting with numerous people, a lot of them also have the same type of issues but their pain and numbness might be in different areas of their body. We all deal with the strains of our illness so differently and with SO much strength and courage! Y’all know I believe that staying positive is one of the most important ways to beat the trials that come my way! I might have my off days where I feel completely defeated, but that state of mind does not last long because it does not help me overcome the issues at hand!

I guess we are each our own unique and beautiful snowflake just floating through our lives. We do not have to worry about melting from our troubles, we just need to continue to stay flying high above the struggles and we will win!

Thank you so much for stopping by my site today! I hope you enjoyed my thoughts for Saturday and I really look forward to reading your responses! I do promise to respond to you as quickly as I can! I can not explain how much the communications I have had with so many of you mean to me! I hope you are enjoying your weekend and doing what makes you happy! As always, I am sending you all lots of love and comfort!

Love 2

Always, Alyssa

Life’s Challenges

joycemeyer1No one has ever said life was easy and really truly mean it. Life comes with so many challenges along the way and many are unforeseen. There may even be times when things get so difficult you just want to give up and stay away from the outside world! It is so important that even during the most grueling times in life to stand up straight and strong, knowing you are fighting a true battle with nothing but courage!

I think sometimes facing our fears is the hardest thing to do. We all have something we are afraid of whether it be moving to a new city, changing career paths, progression of an illness or something as simple as riding a terrifying ride at the amusement park. No matter how minor or major  the fear is, it is real and frightens us. 

Most of the time life is really like riding a roller coaster without the option to slow down at all. There are so many upward hills that are followed by  steep downhill falls that can95263-Life-Is-Like-A-Roller-Coaster completely take your breath away. Then there are the twists and turns that you do not see coming until it is too late and all you can do is hold on tight and hope for the best outcome. 

It may be hard to believe sometimes, but life always has a way of working out the way it is meant to. I might have been dealt a bad hand with being forced to live with Multiple Sclerosis, but I have been blessed with so many other fantastic aspects of life. Even though I deal with a lot of pain everyday and there are somethings I have to sit out of my husband is always extremely understanding and supportive. 

I hope y’all are having an amazing and enjoyable weekend. Considering my pain levels have been very high recently, I am taking it very easy this weekend trying to rest up so that I feel better for next week. 

I want to thank y’all for visiting my site today. I always appreciate you reading my thoughts and I love being able to read your comments. If you have any questions about the different medications I have some experience with or the different things I have been through with MS, please let me a comment and I will be happy to answer in my next posts! Sending y’all lots of love and comfort always!

Love 2

Always, Alyssa