Result are finally in!!

drum-roll-pleaseGood evening y’all! I hope you had a great day and you are thankful tomorrow is Friday, I know I am! I have definitely had a long week because I was so stressed about what my MRI results were going to show. I can honestly say that worrying and stressing did not change the results!

I am beyond happy to share with y’all that the MRI I had on Friday was MUCH better than the one I had last October. In October, in the words of my neurologist, my brain was on FIRE with many new and very active lesions. That was terrifying for me to learn as I am sure it would be for anyone, but the one I just had improved drastically. The numerous good resultslesions that were causing all my issues last year have healed as much as they are going to! My absolutely fabulous NP was so happy to see how much better my MRI was on Friday in comparison to how horrible it was last year! She told me and my husband how surprised she was to see how much I have managed to improve in just ten short months! She also said that it seems that Gilenya is just the right MS drug for me! I told her that I have NO intentions of changing stress-effects-fbmedications again until there is a cure! I am not preaching that everyone should be on Gilenya because we all have different body chemistry. What works for me might have the adverse effect on someone else. 

We did talk about the dizziness and pain I am still dealing with. She has said to me many times before that she thinks that my pain could be caused from the stress I seem unable to control. We have all heard many times that stress is a killer and I do really believe that! You know there is an app for everything, but she shared an app with me about stress and MS. I am going to give it a chance, I mean it can’t hurt anything!stress is the cause This app is available for iPhone and Android under the play store, it is called ImageryWork. There is also a website if you are interested, Imagerywork.com. I have known for a long time that I needed to get a handle on my stress because I have felt what it does to my body. It will be SO INCREDIBLY wonderful if controlling and managing my stress will eliminate the majority of my pain! I think I have lived with this pain for way too long and maybe there is something I can do to help it!

There are a number of reasons I could be experiencing dizzy spells. One the she really pushed on me was eating more! Both her and my husband dizzinessthink I should try eating 4-5 smalls meals each day, which I never do! I am going to try having small snacks throughout the day and not worrying about whether it is healthy or not and if I am going to gain a lot of weight! Weight has always been a huge worry of mine and I know how stupid that is in the big picture. Truthfully, I am NOWHERE near being overweight, in fact I am underweight according to the NP. 

So, I guess what I learned today is all the issues I am having, like increased pain and dizziness is my own fault. I am going to work on making the necessary changes to mytrytobea-min health so I will actually feel normal, whatever that is! All of the support and encouraging comments I have received from y’all have been SO appreciated. Y’all helped me through a very difficult time, which I guess I kind of caused. I really am very relived that my MS is not progressing like I was thinking and that the Gilenya is doing it’s part for me!

I hope y’all have a wonderful and relaxing evening! Please always know that no matter what I might be dealing with, I am always sending y’all LOTS of love ❤and comfort!

My signature heart

❤Always, Alyssa❤

Advertisements

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❤

What do you do when…..

power-outage-generic-320Good afternoon y’all! I really hope your day is going much better than mine has. I already have to get up pretty early for work, but being woken at 3:00 am due to a power outage is a terrible way to wake up. It kind of sets how the day is going to go for you! Waiting patiently for the power to come back on so I could get ready to work was frustrating to say the least. I could not fall back asleep for a few reasons, it was a little hot without the air conditioner and sheer panic in thinking how I would wake up if I fall asleep without an alarm and get ready for my day. Thankfully the power company did work fairly fast and the power was restored by 6:45 am, but I am typically at work at 7:00 am. I guess you can say I was able to partially throw myself together and I was at work at 8:00 am. Even though my manager was fully aware of the situation, my day felt off due to being an hour behind my normal schedule. Thankfully it is over now and hopefully tomorrow will start off much better! 

Of course to add to my frustrations from the power outage this morning, I can not seem to get any responses from my doctor’s office. I am waiting for them to send the MRI order tofrustration the company that might approve for me to get assistance with the co-pay for the extremely expensive MRI. The nurse, that is normally helpful, sent me the paperwork I needed to fill out and then send to the company MSAA, but apparently failed to send me the MRI order that the company requires. After several phone calls and emails they still have not sent this in or responded to me! The doctor is the one that wanted me to get the MRI, but I guess it was not all that important to her after-all! Maybe I am wrong, but I am taking this to mean my health is NOT all that important to her and neither is the MRI she was forcing on me. Through the fatigue and frustration, I emailed the AVP of the practice and SURPRISE still NO response!!!! I mean who else do you go to when even the AVP does not respond?

Maybe this is my fault because I expected this new doctor to care and treat patients the way my previous doctor from this same office did. Nothing has been the same in this Expectation-withoutpractice since my first doctor retired. My first MS Specialist was caring , compassionate and knew how to communicate, but I guess this is a new day in age and doctors like him are scarce. Communication between doctors, nurses and the patient is vital to good health care, but apparently they see things differently. Every time I see this doctor I go into her office prepared with all my questions written out, just so I do not forget anything and considering I know when I leave the office I will never get a response to my questions. I am not sure what happened to doctors that actually care about their patients, I think they are extinct like the dinosaurs! It is really sad that we pay all this money for a few moments of the doctor’s time, but sometimes feel like we are a nuisance to them? Or maybe that is just me.

Thank y’all for visiting my site today and reading my small rant! I really hope you had a lovely day without any of the frustrations I have experienced today. Your comments are always encouraged and very much appreciated! I hope y’all have a great evening doing what makes you happy! As always I am sending y’all LOTS of ❤love and comfort!

My signature heart❤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

Successful appointments can happen!

Friday EveHappy Friday Eve Y’all! I hope you have had a fantastic day! I was having so much anxiety over my doctor’s appointment today because I had been given a run around with this doctor. I went into this appointment very prepared with pages of notes so I would not miss a thing and also had no expectations at all! To my surprise, everything went the right and ethical way!

It was not until recently that I have started going into my appointments with notes because I tend to forget at least one thing because I often feel rushed knowing the doctor has other patients waiting. I have learned that it is very important to take control of the appointment and be very prepared so no time is wasted. By taking control and knowing exactly what you want out of the appointment it shows the doctor that you have expectations of the appointment and demand quality care! These doctors see so many patients each day that they probably feel overwhelmed, even if they do not say those words out loud. I will admit I have learned that if I keep my expectations of my determinedappointments relatively low, I will not be frustrated and disappointed. Today’s appointment went very well and my doctor even apologized to me for all that I have gone through these past couple of weeks!

I think it is extremely important that even when things seem like they are all going wrong, to find it within yourself to never give up! In my opinion, giving up is the only way to truly fail! I have spent a few weeks now fighting for my rights to live a life as pain-free as possible and all my fighting has paid off! I have fought for myself with two different doctors and things are all going right for me now. Sometimes you have to fight in a pleasant way, if that makes any sense. It is so true that you get more flies with honey, so handling all situations in a positive and since way works for the best!

Thank you for visiting my site today and I look forward to reading your comments. I promise you that I will respond to all of your comments just as quickly as I can! I hope you have an amazing and relaxing evening! On an extremely positive note, tomorrow is Friday and then we have the weekend to enjoy ourselves! As always, I am sending y’all lots of love and comfort!!

Love 2

Always, Alyssa

Last day of March!

MS AwarenessAs you already know today is the last day of March and Multiple Sclerosis Awareness Month. Has it been a pretty good month for y’all or have things been like a carbon copy of February? I feel like things are about the same with most things in life. The political world seems like it is still a bit of a mess with a little too much drama for me! Too many grown men acting like children in a playground! We can continue to hope for better times though and even if everyone around us continues to act the same, we can all just stay optimistic and happy with what we have been blessed with in life!

I can say that I have learned so much about how to handle doctor’s appointments better! I use to go into the appointments with many things I wanted to discuss, but then always would get distracted and feel rushed normally by the doctors actions. It never failed, I would leave the appointment and remember things I needed to get answers to and be angry with myself for forgetting. This last appointment I had everything I had questions about written down, which was wonderful because at the end of the appointment I looked at my notes and almost forgot one important question! As y’all know I have another appointment on Thursday and I know already I need to be very prepared and honestly keep my expectations low just so I will not be upset afterwards. I feel my upcoming appointment is pretty important because I am going in fighting for myself and my well-being!

At the end of MS Awareness month, I want to say I hope those that were not familiar with MS learned a lot and those battling MS gained even more knowledge. MS is definitely not the easiest illness to live with, not that any really are easy, but at the same time we all handle it as well as we can! It is a very unpredictable and at times extremely painful illness to live with, but MS Warrior 2there is no use dwelling on that. Dwelling on what we have to live with only causes more issues in the long run. It is extremely important to do our best to remain positive and stand strong to how we manage our illness. Giving up on our hopes for a cure will not make it happen any faster and will not help us living today! I feel very strongly that we all, no matter what our struggles are must live in the now. Living in the past will not change anything, but it might hinder our present times! We all should have already learned from our past experiences and therefore let it all go and moved on!

I hope y’all are enjoying your weekend! Hopefully the weather is beautiful for you and you are able to get a little sunshine! A little bit of sunshine can do wonders for our mind and spirit! I hope y’all are feeling well and of course staying as positive as you can. I appreciate you stopping by my site today and I will of course respond to any comments you might have as quickly as I can! As always I am sending y’all lots of love and comfort!

Love 2

Always, Alyssa

First time for Everything!

be-thankful-to-your-bad-days_516Today was my appointment with my MS Specialist and it went very well! The Nurse Practitioner I saw actually took the time to listen to my concerns and did not dismiss any of my fears. To be perfectly honest, I went into this appointment with low expectations to protect myself from disappointment and frustration. I am so happy to say that even though this appointment lasted a longtime; I left the doctor’s office feeling much better about the issues I have been struggling with. The NP took time to actually talk to me about the headaches I have had for so long and come up with ideas to hopefully eliminate them. We talked about the pain issues that have increased over the past few months and she had some very valid thoughts about why that was happening. She helped relieve the stress I was putting on myself about my illness progressing by reassuring me I am doing everything I can and feels that I am controlling it the best I can. She told me to not over think what could happen and just live in the moment. I thought that was great advice because I do tend to think everything and go to worse case scenarios all the time, which really is not helpful to me or my mental state. Moving forward I am going to stay on the Gilenya because it is the best choice for me and did control my illness for 6 years before I decided to try something new. I was thinking the Gilenya was causing my headaches, but the NP today pointed out that I had headaches way before Gilenya was a factor.  My appointment today was by far the best and most enlightening appointment I expectationshave had in a long time and gave me a new perspective on things!

As I already said, I went into my appointment today with very low expectation, which was helpful overall! I have found over the years if you set your expectations for others too high there will always be a high probability of disappointment. Therefore, if you just keep your expectations lower you will never be disappointed because you are not presuming anything! This may seem like a pessimistic way to live, but it saves a lot of heartache and frustration. In our hearts we know who we can count on in life and who we question counting on. Others must prove to us that we can rely on them and live up to the standards we have. I do believe we all need at least one person that we can truly count on and that person will never let us down. There is always at least one person you confide in and know they will always be there to support you, no matter what! Trust is a very delicate thing that can be destroyed quickly and take a very long time to rebuild, if it is even possible.

Of course I am delighted my appointment went as well as it did today, but now I am hoping the appointment I have next Thursday will go just as well. I will go into the 2-quote-about-no-matter-how-impossible-unattainable-or-unim-image-background-imageappointment next week just as prepared as I was today, but also go in with no expectations at all. I believe that being prepared and having notes with you can be extremely beneficial because it is easy to forget important details. I think being in the exam room can be a little stressful which makes it easy to lose track of what you want to discuss. Doctors have busy schedules and have a limited amount of time allotted to each patient. So I found having set topics you need to talk about ready will make the appointment much more useful to you and not waste any time! I know that if I did not prepare last night for this appointment and have my topics written down, I would have missed a lot of important information. 

I hope y’all had a great Friday Eve and I hope y’all are feeling well! I really appreciate you taking the time to visit my site today and I look forward to reading your comments! All of your comments are very meaningful to me and I will respond as quickly as I can. I hope y’all have a lovely evening!! I am always sending each of you lots of love and comfort! 

Love 2

Always, Alyssa