Changing my thought process!

800px_COLOURBOX18602182Good evening y’all! I hope you have had a wonderful Wednesday! Thankfully we are half way through the week and only have two days left until we reach the weekend! I am pretty sure we can make it two days! Of course, I could not be any happier tomorrow is FINALLY Thursday, the day I have waited for since last week! 

I think y’all know that I have done nothing but stress myself silly about the MRI I had last Friday. Tomorrow afternoon is when I will get the “official” results and will actually be able to talk with the NP. So thinking in a logical state of mind, did me getting all worked up do anything for the good? ABSOLUTELY NOT! In fact, all that stress only caused me to feel twice as much pain, which has honestly been miserable! I think the worrying was a complete waste of time!

I have adopted a new way of thinking and I feel that is much more healthy for my mind changeand body. There is nothing at all I can do to change what the results of my MRI are, so why bother thinking about it anymore? If my MRI results are the same as they were in October, when the doctor said it was the “worst” MRI she had ever seen, so be it! I guess it is  better to be the same instead of there being even more active lesions and I will handle it the best I can. I think I am a pretty strong person and can tolerate anything life throws my way.

Multiple Sclerosis can have constant changes and we must learn new ways to get through our life. Of course, if there are no changes at all and I will be forced to just get through the rest of my life with a lot of pain, it could be much worse!

I am a fighter and will never allow for this illness to consume my life. I did promise imagesmyself 18 years ago, when I was diagnosed that I would never surrender to it and I would find a way to control the illness, not the other way around! I know this post is a lot different and lighter than some of my previous posts, but I am learning to just accept what I can not control or change and continue on with the life I was given!

Thank you for visiting my site today and thank you from the bottom of my heart❤ for ALL of your support during these past few stressful days! I do know that I was getting incredibly stressed for NO reason at all! I hope you have a wonderful and restful evening. I am going to try to share the news I get tomorrow afternoon once I get home, you know as long as I am not too upset! As always please remember that I am sending y’all LOTS of love❤ and comfort!

My signature heart

❤Always, Alyssa❤

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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❤

Lesion Party

discouraging.jpgFor the past few weeks it seems that the issues I have had with my legs, arms and back has increased drastically! Now like most of us I was curious as to what could be causing this increase of pain, tingling, burning sensation and pins and needles, so I looked it up on Google. Oh my word looking things up online is almost worse than dealing with what the doctors have to say! Honestly the main reason why what I read online was disturbing is because it was pretty close to what I already suspected, but there really is something about reading it that makes it a little more upsetting.

It has been in my overworked and mildly stressed mind for weeks now that these issues are being caused from new lesions or those that were already present are active now. It shut down the partydoes not seem to matter if I am resting or moving around, the pain does not just go away! This possible lesion party that is going on in my body needs to be shut down! This party is more like a hostile takeover of my ability to live pain-free rather than a happy time with friends having fun like most parties are!

With all of the different issues I have been fighting with for far too long and keeping it from my doctor, today I finally have had enough and sent a message to my doctor to see her recommendations would be. Y’all already know that I completed paperwork last week to hopefully receive MRI assistance, as I do realize that is what is going to be needed, but I am still waiting to hear back about that. Do you just wish these doctors could hear what we are going through, make a true educated assessment and not have to go through the MRI ordeals? I personally think what we are suffering with could be something a true and competent specialist could easily figure out what is causing it and diagnosis the issue.

With all the said, I ended up staying out of work today because of how I was feeling. Even though my legs did not feel stable enough, I did get up when my alarm went off this morning  and made an attempt to try getting ready for work. However, when the short distance from ribbon-e1528247275292.jpgour room to the bathroom felt like 10 miles, I knew anything more would be too hard on my broken body. Crazy thing is I did rest all weekend, but it did not help at all! It really seems like rest hurts, moving hurts and basically anything I do is painful so what do you do when that happens?

I certainly hope y’all had a good start to the week and I hope you are feeling well. I appreciate you taking the time to visit my site today and your comments are always appreciated and encouraged. It may take me a little longer to respond just because it is a difficult day, but I promise I will respond! As always, no matter what I am going through I am sending y’all LOTS of love and comfort!

Love

❤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❤

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

Winter in the South!

closedHappy Wednesday Y’all! It has actually snowed in the south, which closes everything down! I am definitely not complaining since my office was closed today, but will it close again tomorrow due to the icy roads we will have? I do believe it would be the logical and safe thing to do, I just wonder if they will see things the way I do!

I am not a huge fan of the cold weather as it does cause me so much additional pain, but it was really pretty to wake up to see snow falling! The snow has blanketed the cars and ground which is a beautiful sight, as long as I do not have to go out in it or try driving in snowdayit! I am not saying I can not drive in the snow, but my car does not see things the same way I do. However, I do not believe anyone can drive in the ice, which is what things are going to result in tomorrow!

I do believe we have one good snow fall every year! Considering I did grow up in the north a couple of inches would really not mean too much but it does in the south! The south does not see much snow, so I do not believe we have the necessary equipment to handle much if any!

Yesterday I kept saying we were going to have snow today and I do not think anyone believed me! I even sang my made up snow song in hopes for the snow and it worked! Maybe I need to make up another song for my office to be closed tomorrow, so I do not have to try to drive with icy conditions!

Just to give y’all an update on how I have been feeling physically. I have noticed that I do seen better daysstart feeling much worse as the day progresses. My pain and headache issues will be fine in the morning until about 2:00 in the afternoon, but then everything starts to come back. I will slowly start to get a headache and my back and leg pain will hit me hard. This would be the reason why I am not back to my normal full-time hours at work yet, my body just can not handle it. I really am hoping that someday soon I will be back to as normal as I can be and work a full day. Prior to my most recent flare up I could easily work 8 or more hours a day and be fine, but now after 6 hours I am in bad shape. I have been trying to push myself a little further each week and now I am working 7 hours, which has been working fine. If I am able to come home and rest comfortably my pain will subside some! 

I hope y’all are having a good week so far! Thank you for stopping by today to read my thoughts for this fantastic Wednesday! As always your comments are very much appreciated and I will respond to you as quickly as I can! Remember to always do your best to stay positive because y’all know I believe it make dramatic difference in life! I hope y’all are feeling well today and stay feeling well! Sending much love and comfort to all of you!

Love 2

Always, Alyssa

Last Friday in October!

butterfly weekendGood Evening, I hope y’all had a great Friday! Today was a beautiful day with the temperature being nothing short of perfect! The sun was shining and it was cool out! I love the weather in the fall!!

I ended up changing my follow-up appointment with the Nurse Practitioner at my doctor’s office, from Tuesday to today. The NP that I met with today was actually pretty fantastic. She listened to me and made good suggestions as to how to help my leg spasticity. She is also having the doctor extend my Short Term Disability until Wednesday. She does not want me to rush back to work after the flare up and also with starting back on the Gilenya on Monday. She told me that rest is very important right now. 

One thing the NP recommended to help with the leg spasticity is stretching exercises. She said it would be helpful to do stretches for 10 minutes in the morning and 10 minutes in the evenings. She shared with me that YouTube has a lot of stretching exercises, where you can watch videos and then try them. I have already found several, but I honestly do not know how to add a video to my blog. If any of you can tell me how to do this, I will be happy to do it in my next blog and really appreciate your assistance.  

As y’all know this flare up has taken a lot out of me, but I am still trying my hardest to stay positive. I told the NP that I saw today, how discouraging it was to be on Short Term Disability, when I am only 36 years old. She was very empathetic to my feelings and told me, it is nothing to be ashamed about. She understood that it can be a little discouraging to use those words, Short Term Disability, but said that I am doing what I need to do to take care of myself. I told her about a comment that was made by someone I had once Life Goes Onconsidered a friend, that I need to just quit my job and go on disability. I told her that comment really hit a sensitive part in my mine and had really hurt my feelings and kind of discouraged me. She reassured me that people say mean things like that because they really do not understand and because MS is like an invisible disease that only I feel, some might tend to make the assumption that it is all made up, but to just ignore comments like that. I do know she is right but it made me feel a lot better about things to have a medical professional not only acknowledge how I was feeling but also reassure me everything will be okay.

I hope y’all have a good evening and a fantastic weekend. Please let me know if you have any comments and I will be sure to respond as quickly as I can. Oh and please let me know if you know how to add videos to blogs. I am still relatively new at this, so I am learning as I go! Thank y’all for all you do not just for me, but for others that are on this blog and yourself. We have a very strong support system that really does blow me away! Take Care!!

Love 2

 

Always, Alyssa