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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My Letter to Multiple Sclerosis

Good Morning

Good morning Y’all! I hope you are having a great weekend so far and you will be able to enjoy your Sunday! After all the topics I have been able to address, I managed to forget one of the most important topics. While reading several different blogging forums, I thought it would be a good idea to address the thing that brought me to blogging in the first place, my Multiple Sclerosis. So today I am going to share with you the letter I would love to send to this illness. This might be a little longer and full of emotions, but it is also very real! I hope you enjoy this! Maybe this could be something for you to try, write a letter to your illness!

Dear my not so loving friend Multiple Sclerosis,

You invaded my body about 18 years ago and just stuck with me without fail. We have been through many relapses together over the years; all the while you tried to defeat me. But let’s face it, I will not surrender to your persistent bad behaviors and will not allowms 3 you to keep me down for too long.  

In the beginning of our “so-called friendship”❤, you tried to take my vision from me, which let me just say was not a good way to become the lifelong friends we were forced to be!! Of course it took a little help from the not so exciting steroids, but my vision thankfully returned to normal! You have tried over and over again throughout the years to take control of my legs by causing me so much pain and numbness, but I am still able to walk without the assistance of what I think you were aiming for. You have caused me so much pain and suffering for way too many years, but I still continue to fight back with all my might because I never plan to give up and allow you to control my life! The truth is, you are the one losing our constant battle and I am shockingly enough the one winning the war!

Let us not forget the fact that you have chosen to take up to residence in my brain causing many other issues for me! There are the several times a week debiting only choice we haveheadaches which normally end to severe nausea. The headaches you decided to inflict me with make it nearly impossible to do anything at all! It was also decided by YOU to cause some brain fog and dizziness, making me feel confused and frustrated. The horrible back, neck and leg pain is more than enough for me to live with, don’t you think? Please get out of my brain because you are being EVICTED IMMEDIATELY!

I bet you thought you were being clever by giving me hugs every now and then! Well I do not like or appreciate your unwelcome hugs! So in the future, please do not do that! Just in case you did not already know, your hugs are very painful!

I guess during the 18 years we have spent together, you have become the ❤friend that I never asked for or wanted and you just will not go way to give me a break. You are pretty much worse than the most obnoxious uninvited guest that will NOT LEAVE no matter how many hints you are given! The only thing I can do now is just embrace the fact that you are just here for the long haul and will surface whenever you please without so much as a warning which let’s face it is really inconsiderate! 

Oh and what about all those different medications you want me to take? Do you not realize just how much some of these medications can and do affect a person’s body or do you just not care? Why must you be so complicated that the smartest minds of the world can’t seem to find a way to make you vanish? They sure can create so many drugs to “slow” the progression of the illness down but not make the illness stay in a remission Get MS montage plate picstate FOREVER! I am starting to think that you, the malicious drug companies and the not so compassionate greedy insurance companies are working closely together to do nothing more but make LOTS OF MONEY yourselves!

So my dear not so sweet friend MS, now that you have heard a little from me about how you make me feel, when are you going to move out of my body allowing me to be free of you? I think it is long since time to depart from each other!

Thank y’all for visiting my site today❤! I really hope you enjoyed reading the letter I would love❤ to be able to send off to Multiple Sclerosis. Of course I would love to read your thoughts on this, so please let a comment for me and I will respond as quickly as I can. I really hope you are feeling well today and can enjoy your Sunday! As 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❤