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!

My signature heart

❤Always, Alyssa❤

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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❤

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❤

Never a straight answer!

Relaxing QuotesGood afternoon y’all! I hope you have had a wonderful day! Look on the bright side, we have made it through two days and only have three to go!

So, y’all already know that I had the brain MRI on Friday evening, but of course I am not able to get the results until Thursday afternoon when I see the Nurse Practitioner! Typically I have always been able to read the radiologists reports online, but for some UNKNOWN reason the results are blocked to my viewing! Thankfully I do honestly prefer to see the NP rather than seeing the doctor because the doctor left a really bad taste in my mouth after her reaction to the MRI I had last October. I still find her reaction very unprofessional and disturbing, but what’s done is done and there is no correcting that experience! In front of my husband she actually told us it was the WORST MRI she had ever seen! I mean I think I reacted just as anyone else would as this was a very rude and hurtful way to share the results. Unfortunately in front of her I did cry, but then got extremely angry! Her reaction made me feel absolutely terrible, like I was going downhill fast and my illness was just progressing rapidly!Waiting torture

On Monday when I was not able to view the radiologists report, I contacted my doctor’s office. Monday afternoon the nurse responded back to my email by saying it did not look like my MRI had changed much since the one I had in October. That should have been good news and good enough, right? But being the person I am that wants more answers, I simply asked if this was indicating that considering I was still feeling the same way and the MRI apparently had not changed all that much since October, does this mean that I am just going to feel this way for the rest of my life? I think that was a very valid question, don’t you? Today this same nurse went from saying the MRI did not show much change to saying the doctor weighed in and he was not able to share any information with me as I need to wait to see the NP. How does something change so much overnight? I just do not understand why he suddenly is unable to share anything else with me. The way my mind works is I am thinking something a little more has changed and the NP needs to discuss this with me so I am clear on the situation at hand! Do you think I am overreacting?

waiting for answersI can be semi-logical sometimes because I do know there is nothing I can do to change what my MRI has found, but yet I still can not get my mind to slow down! Last night being SO stressed about this, I was able to contact a fellow blogger on Facebook. I thank Alex so much as she really did make me feel so much better, but now today I am back to being stressed to the MAX! Thanks to the blogging community and people as wonderful as Alex I know I have support and encouragement when I need it most! If you have not already visited Alex’s site, I am going to strongly recommend it. Alex offers so much support, love, compassion, and understanding, which I do think you will find as well once you visit her amazing site https://mswithmsalex.com/. Sending you so much LOVE ❤and thanks Alex!

Thank y’all for stopping by my site today and I do really look forward to your comments. Your comments always mean so much to me and really add some fantastic insights that I probably have not been able to see. I hope you have a nice and relaxing evening. Please always remember that I am always sending y’all LOTS of love ❤and comfort!

My signature heart

❤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!

My signature heart

❤Always, Alyssa❤

Finally received GOOD news!

relax-quote-mind-quotes-imagesGood afternoon y’all! I hope you are having an amazing weekend so far and feeling the best you possibly can. After a really LONG week all I wanted to have was a peaceful weekend, which so far is what I am enjoying! Rest is so important for everyone and some of us are a little more stubborn about resting when we should. I am definitely the type of person that is stubborn about everything so it takes me feeling terrible to actually rest! I have vowed to myself that I will spend the weekend resting and taking care of myself so that I will feel refreshed for the upcoming week! 

I know I mentioned to y’all a few weeks ago that I had applied for co-pay assistance with the Multiple Sclerosis Association of America (MSAA) for a much needed MRI. I had been in communication with someone with this company throughout the weeks and she even told me that I was “going” to be approved, but she did not know when it would actually take place. I finally received the APPROVAL letter in the mail today! I am so incredibly MSAA_Logo_2017delighted that I after all this time waiting I can finally get my Cranial MRI and I will not have to pay a dime for it! I find it amazing that after living with MS for 18 very long years and having numerous MRI’s that cost a fortune, I was finally introduced to help! I know some of you do not live in the United States so this may not help you as much, but for those of you that do live in the states I am going to encourage you to visit MSAA’s website as they might be able to offer you some help https://mymsaa.org/. Now for those of you that do not live in the states you probably have free healthcare, which is really how the states should treat the people living here! 

So how is your weekend going? I really hope your weekend is very enjoyable for you so far and continues to be wonderful! The week was so full of constant rain☔ which always HOTcauses my pain to be elevated tremendously, but the weekend so far has been dry and just terribly HOT!!  Of course with the heat, I am just staying inside with the air conditioning as much as I possibly can! 

I always appreciate y’all visiting my site and I love reading your comments, which I do respond to just as quickly as I can! I hope the rest of your Saturday is spent only doing what makes you happy because that is what you deserve! Please never forget 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❤