Prisoner of my own body

prison bodyIn a previous post I shared with y’all that my recent MRI results showed improvement and there were NO new lesions, which is great news! I felt so incredibly relieved with these wonderful results, but for some reason which I am sure is probably stress related, I still feel an incredible amount of pain and burning in my legs/feet. This pain and burning sensation is constant and unrelenting, which is nothing more than frustrating.

Trying to continue doing all that I want and need to do become trying because it seems like not much really help the issues I continue to struggle with. I feel that my body is trying to hold me as a prisoner from my own illness. Isn’t there normally parole from prison? Unfortunately parole has not been offered to me, so maybe that means I have not stay in painshowed good behavior! I know I do not listen well to my doctor (whom I do my best to avoid to at all costs), but I also continue to ignore the advice from the Nurse Practitioner (NP) that I actually like and respect, considering she worked closely with my first specialist that I just loved! During the MRI results reading with the NP, she encouraged me once again to try things to reduce my stress, considering she seems to believe that is where my pain is stemming from. I am do not agree with her completely on this, but maybe she is right.

Avoiding stress in the world we live in seems completely impossible to me, but maybe and not very likely I am wrong. I mean you are not able to turn the TV on without interruptions from the government, spewing nothing but lies! It is impossible to be out stress everywhereamong people without one them mentioning some lie they heard on the news that they of course believe. Avoiding stressors that I have been aware of for a long time is possible, but then through no fault of my own they seep through and then cause me nothing but frustrating feelings. I have even tried to ignore the stress-factors, but all that does is bottle up hostile feelings which tend to come out in rather terrible and unhealthy ways!

Now considering my MRI results indicated improvement, I am left to wonder if the pain and burning sensation that will not let up is just my life. This is what makes me feel that I am nothing more than a prisoner in my own body. How do you break-free when nothing seems to help? All that seems to be happening is the walls are growing taller and more impossible to escape from.light

Even though the issues I continue to face are frustrating, I will continue searching for the light I know is there somewhere. There must be an end to the pain and burning sensation and in time I am sure I will figure it out. However, by the time I figure out ways to end the pain and burning I am probably going to be very elderly and in an assistant living home, in which they will have to deal with me! I definitely feel bad for those individuals! 

I would like to thank y’all for stopping by my site today. I always appreciate you reading my thoughts for the day and leaving your amazing comments! I hope y’all have had a nice day and I hope you are feeling well. Please remember that I will respond to all comments as quickly as I can, as I really do enjoy the open communication we have. As always I am sending y’all LOTS of love❤ and comfort!

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❤Always, Alyssa❤

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Somewhere between lonely

lonelinessThere are times during our lifetime we may feel extremely lonely because we think that no one really understands what we are fighting against. There might be some situations that we just do not want to talk about anything because it is too painful to relive. Has there ever been a time when you were in a room full of other people, but yet you still felt so lonely? I often wonder if it is normal to feel lonely when I am actually not really alone. It even sounds silly when I read what I just wrote, but it is the way I feel sometimes, especially lately. I think there are times that I get so lost in my own thoughts, which honestly are normally unhealthy stress points, but I do not have a desire to talk at all because it is way too frustrating. In fact during those lost moments, I just want to sit in complete silence as I try to wrap my mind around all the turmoil of life! Whether it was supposed to be or not, life is a challenge that just keeps going without giving us a break to recuperate from what we have already dealt with.

I do believe that sometimes life can become SO overwhelmingly stressful and it feels likeoverwhelmed there is just no way out of those moments. Why is it the great and delightful moments in life go by so incredibly fast, but the difficult times seem to drag on FOREVER!? I remember my wedding day that was almost 7 years ago, it was one of the happiest days of my life and it went by in the blink of an eye. Then the day the doctor told me I had MS, which was 18 years ago seemed to have lasted forever! I can still see and feel myself in the room with my old doctor and listening to him say, “Alyssa, you have Multiple Sclerosis”, but all the words after that are a blur. It seems as though the bad times in our lifetime taint our views on life in general and it just leaves a permanent scar that never truly heals.

Do you ever want to become a recluse, just to escape all the craziness of the world we live in? Living in solitude can become depressing and therefore is not healthy at all! On aristotle1the flip side of that, living in a world that has so much negativity is not healthy either! It is a catch 22 with how to proceed. I have tried to convince myself that one smile can go along way and if everyone could just adopt that concept there would be a lot more happiness surrounding all of us. Even though I might be feeling a little down right now, I do still believe smiles go so much further than anyone realizes.

Of course right now I am drowning in my thoughts about what the MRI results are going to be. Then I have a moment of clarity and know that there is absolutely nothing at all I can do to change what my results will tell me on Thursday. So why in the world am I unable to let these negative thoughts go? I think that is the million dollar question that might never be answered!

Y’all know me by now and know that I pride myself on thinking more on the positive051aa4b37f544a9783141575bb01c1dd61b51b-wm.jpg side of things. This is just a phase of negativity that will clear up as it always does. Things could be worse than they are, but my poor mind has been SO overwhelmed with stress. It honestly feels like I have been engulfed in way too many decisions and changes that need to be made that it is hard to breath sometimes. I try to handle one moment at a time, but then more thoughts pop up in my mind making it go into a tail spin!

Thank you for reading my random thoughts of the day or I guess I should say of my weekend. I am terribly sorry for all the negative thoughts, but I will say writing my feelings out helps so much! Tomorrow is another day and things will hopefully be much brighter. The countdown is on for when I get to hear my MRI results, good or bad I will handle them with grace and dignity. I will not go into the appointment with all my negative thoughts, but I will be calm and ready for anything. I hope y’all enjoy the rest of what is left of the weekend! As always, please remember that no matter what I might be going through, I am always sending y’all LOTS of love❤ and comfort!

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❤Always, Alyssa❤

Brain MRI Day

good afternoonGood afternoon y’all! I hope your weekend is starting off wonderfully! Last night I was able to have my much-needed and dreaded brain MRI. Even though over my 18 years with Multiple Sclerosis I have had SO many MRI’s, I was still extremely nervous! However, if I am being 100% honest I am WAY more nervous about getting the results next week! The waiting period will be brutal because my mind will go in a million different directions and most of those directions lead to the negative thoughts. I am trying to be logical, which is not always easy for me because I know there is no amount of stress or worrying that will change what these results are going to show and all that worrying will just add stress to my life leading to even more PAIN!  

With all the MRI’s I have had in my 18 years with Multiple Sclerosis, this one was just of the brain. It was not long at all and the two MRI techs were absolutely amazing. One of them was the same tech I have had several times before, so it was not scary at all. It was pretty funny because Radiologythe one I have seen many time previously said to me, “Alyssa, do you have any questions before we get started?” Before I was even able to speak he said, “You know I can not tell you anything because this needs to be read by the Radiologist and I just do not have that type of knowledge. Now you also already know you can go online in a few days and read the full report.” I do tend to always ask at the end of the test if they saw anything like lesions. I hate waiting to see the doctor and I know the techs can see the images and probably have a somewhat educated guess on what they are looking at. My goodness they are so stubborn about sharing any news with me which I kind of think that is just mean, just kidding! He did make one funny remark by saying he was happy to announce that I do still have a brain!

For some reason today I am in so much pain, but I am doing my best to just rest. I do tend to use my Saturday’s as a day of rest and anything I think needs to be done waits until Intraoperative-MRI_Joyce_690x380pxlSunday. More than likely the reason for my pain is due to stressing about the MRI and also the argument I had with my mother on the way to the MRI. Isn’t it funny how when you are stressed about something all it takes is one comment to make the calm barriers fall down hard? The smallest of disagreements can turn into a disaster! I am not proud of this, but I am very strong in my nature and can have a hot temper when provoked. Anything I am really passionate about causes me to protect and defend it to the fullest. I will say things I mean, but it will come out in a very hostile manner. I do also believe that anything that happened yesterday is in the past and can not be changed, so all you can do is move on with life and hopefully be less hostile, but we will see about that!

Thank you for visiting my site today and I hope y’all have a great and restful weekend! IHappy-Weekend.-Do-what-makes-you-smile-and-be-happy will do my best to stay calm and definitely not continue thinking about “what” the results are going to tell me on Thursday. I think the only thing I can do between now and Thursday is keep my mind busy by thinking about only the positives aspects of life! Even though those positives can be hard to find because of all the negative in life are still there! Please remember that I am always sending y’all LOTS of love ❤and comfort!

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❤Always, Alyssa❤

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!

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❤Always, Alyssa❤

When a storm is brewing!

Storm nearing inIt sounds a little crazy to say, but I can feel a storm before it even arrives! Before I actually heard the thunder moving in all of my pain became increasing more intense. As this storm continues to build up in my area my back, legs and right arm have started to become more like a 10 on the pain scale. which isn’t any fun!

Honestly, I felt my pain increasing while I was still at work and was just chalking it up to the insane amount of frustration I was feeling! I was having a pretty heated disagreement with my direct supervisor. I normally would just let things go because I really hate confrontation, but I was sick and tired of being disrespected and thought it needed to be addressed and dealt with. To say the very least though, I ended the conversation by walking away when I saw it was not goingupload anywhere. When I get extremely angry I tend to cry before I yell and I could not give him the satisfaction to see how much he was getting under my skin! I am not looking forward to going back to work tomorrow and hope that he will not continue on with his petty harassing ways!

Anyways I got a little off topic with how the stormy weather causes me to feel so much additional pain! I feel like I could be a better weather person because my body tells me what to expect from Mother Nature! In my younger days, I would hear about how an elderly person can feel the rain in their bones and I never really put much thought into that. Now I may not be a young carefree person in her 20’s, but I am NOT an elderly person either! However, I do feel the rain in my body terribly! When it rains I just want to be able to stay at home where I am comfortable and not have to ever go out in it at all, but maturity with arguementunfortunately I do have to leave the comfort of my home to go to that place I work at, which as I already mentioned isn’t a pleasant place to be! When I add rainy weather and a semi-hostile work environment to my day, I often feel absolutely miserable!!! In these times I find it best to just stay very silent! Do y’all feel the rain in your bones, as I know many of you live with chronic illnesses? 

Thank y’all for visiting my site today. I do not typically do two posts in one day, but this was on my mind and felt it would be good to share this with you! I always appreciate your amazing comments which are always fantastic! I hope your day was much better than mine and I hope you have a very relaxing evening! Never forget that I am always sending you LOTS of love ❤and comfort!

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❤Always, Alyssa❤

Calming Sunday!

happy sundayGood evening y’all! I hope your weekend has been very pleasant and enjoyable! Considering I am still feeling so much pain and fatigue, I literally have done NOTHING today! Doing absolutely nothing for one entire day has been both calming to my out of control nerves and peaceful! I can not believe I have missed out on this feeling for so many years! I am always one who wants to be on the constant move no matter how I am feeling, partially because when I am still, I feel pain a lot more!. Doing things around the house, organizing my week ahead and ensuring that everything that needs to be completed is done by the end of the day on Sunday has always been the way my weekends flow. It sounds SO crazy when I think about that a little deeper because things will always get taken care of when they are meant to, so why rush things along?

I think everyone is already very well aware that I am very disturbed by how the United States has been behaving lately. I feel strongly that the behavior of those in charge is setting a very BAD impression and example for all Americans, as some of us do still struggles and frustrationsbelieve in EQUALITY and LOVE❤! Of course there are still some Americans that blindly follow those in charge, which is sad and unfortunate! I find it extremely hard to relate to anyone that does not see what is really happening in this country! I am sorry if anyone finds this statement offensive, but it is how I feel everyday of my life. I have and always will see everyone as just human with no other judgement! I do not appreciate being constantly lied to from those in power of the country I live in because I feel that honesty is the best and only way to live!

I want to apologize for the slight tangent I went off on. I try to stay hopeful that things are going to get better and not any worse, but there is no guarantees with those making the decisions that inflict damage on our lives daily! Currently I feel that I am living in a your patienceconstant state of fear that I am going to end up losing health insurance because I have a pre-existing condition that I never choose to live with. I do not feel that I should be punished for living with a chronic illness, as that alone is punishment enough, so for our government to decide I may not qualify for insurance is absurd! This has not happened yet, but I do think it is in the works! Hell I think I already pay WAY too much for insurance! But it is scary for me  to think that Trump could easily have a bad day and have a temper tantrum that will eliminate healthcare for those with chronic illness! 

I want to thank you from the bottom of my heart for visiting my site today! I do encourage your amazing comments and promise I will response as quickly as I possibly can! I know some of what I have written is a lot different that what I normally write about, but my frustrations have been elevating drastically each day and every day I hear of what is going on in the United States. Trying to find the positive in what is going on is difficult, but I am sure it is there somewhere! I hope you have a lovely and relaxing evening! Please never forget that I am always sending you LOTS of love❤ and comfort!

** I forgot to ask y’all! Do any of you have Facebook as well? As of August 1st, all my blog post do not link to Facebook any longer and I kind of want them to still link to Facebook. Do you by chance know what I need to do, so I do not have to continue posting to Facebook manually?**

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❤Always, Alyssa❤

 

Unanswered Questions!

drowningI sometimes feel like I am drowning in all the unanswered questions in my mind. Life works in such mysterious and unexpected ways which at times cause a whirlwind of various emotions to run through me! My unanswered questions typically lead to overwhelming frustration because life makes absolutely NO sense. For starters one question I have had since I was 19 years old is what causes all these incurable illnesses? In a world that has many brilliant minds why have more cures been not discovered yet? Or have many cures actually been discovered but not released because the greedy people with Big Pharma do not want to lose massive amounts of money from less prescriptions being written? Big Pharma makes a living from all of us that need prescription medications, so without us they would see what it is like to struggle to scrap by pay check to pay check.

Another question that plagues my mind is why is there always so much hate and terribly unfair treatment for SO many? Why can people not all be treated with nothing but love and respect? I do not think it is at all right to judge someone for how they choose to live love and respecttheir life, especially when it does not cause any harm to anyone! I am a firm believer that we should ALL be treated equally because no matter what choices are made, we are all human-beings with feelings that can and do get hurt. For those of us that fight through life with a chronic illness, we often get judged by those that just do not understand! Many of us have a family to support, so we are forced to go to a job we may not enjoy just for a paycheck. When you struggle through a day of work in pain and then have altered hours, our co-workers tend to make ignorant comments that are hard to hear! One comment that just irritates me to the core is, “I wish I had your hours! It must be nice to be able to leave early daily.” Every time I hear this comment my response is ALWAYS, “Well I wish I had your hours because working fewer hours kind of hurts the paycheck!”  I guess life was never meant to be a walk in the park, but sometimes it seems incredibly unfair!

helping othersIn the city I live in you can not make the short drive to the grocery store and not see a homeless person holding a sign asking for money for food, which is terribly sad for me. Why do those that are in power chose to invade other countries wanting to make changes that are unwelcome, when the country they “stand” to protect needs our help? If our so-called help for other countries is not wanted, I think we should focus on the problems right here in front of us every day! I guess I believe our tax dollars should be spent on making changes to the education system, road conditions, homeless, healthcare and helping other countries when they WANT it, not when we think it is necessary!

Another question that I find extremely troubling is why do we pay massive amounts of money for health insurance, but then still get terrible coverage and pay extremely high co-pays? I am supposed to have an MRI once a year, but the co-pay is absolutelyhealthcare is a right ridiculous and completely not affordable to do once a year! Every other developed country offers FREE healthcare for all and that works for them, so why does the United States not try something that actually helps the citizens instead of keeping us in mounds of medical debt?

There are times when these unanswered questions cause me so much anger, but I do not help otherswant to focus my entire life on what will never be answered! I do not have the ability or the power to change other people, but I will always stand up for what my beliefs! I will continue for the rest of my life wishing for cures we all need and I will never treat anyone in a bad nature because of how they live their life!

Thank y’all for visiting my site today! I know this might seem like a bit of a rant, but I feel like certain issues need to be voiced! I really hope y’all are having a nice weekend and feeling well! I definitely encourage your amazing comments and I do promise to respond just as quickly as I can! Please remember that I am always sending y’all LOTS of love❤ and comfort!

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❤Always, Alyssa❤