My Letter to Multiple Sclerosis

Good Morning

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

Dear my not so loving friend Multiple Sclerosis,

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

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

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

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

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

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

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

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

My signature heart

❤Always, Alyssa❤

 

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Friday Sunshine!

struggleGood morning Y’all and a very happy Friday! Even though logically I know it is not possible, it feels like the weeks are getting longer. I had expectations for myself for this week, but those expectations were unfortunately not met. I told y’all in the beginning of the week I was going to try to increase my work hours from 6 hours daily to 7, but I was not able to. I also said I would not be hard on myself if I did not achieve this goal, which is a little untrue. As y’all know I have been struggling with a lot of spasticity in my legs, which is causing a massive amount of pain. I tried to push myself further so I could work 7 hours, but the most I was able to do was 6.5 hours. All I can say is, better luck next week because you know I will keep trying until I achieve my goal!

How was your week? Do you feel like the weeks are getting longer or is it all in my head? I think my week might have felt longer because I wanted so much to work longer hours and I was having so much pain! Frustration was definitely at a high! 

I am trying to make an important decision about whether I should or should not get another MRI. The only reason why my specialist sent the order in was because I haveMS Warrior been back on the Gilenya for 6 months and they want to see if it is helping my illness. Until I mentioned that I was on Gilenya for 6 years previously they did not seem to have any idea and now it might not even be necessary. It is a little disturbing to me that my specialist did not know or remember that I was on Gilenya for so many years prior to October. When she first told me I needed to have the MRI, I thought it was to see if the new active lesions from the October MRI had went into remission or if there were new lesions, I did not know she was ordering this because of the 6 month time line due to restarting the Gilenya! If I am being 100% honest, the only reason I would want this MRI done is to see if there are new active lesions causing all this spasticity and pain. But all the MRI will do is cause me a lot of unnecessary stress and in turn upset me way too much, which we all know the damage being upset will cause. I mean seriously, if all is well with the MRI the specialist mswill say I am doing well with the Gilenya but, if there is any activity on the scan she might say the Gilenya is not strong enough for me and I need to consider starting a different medication. The bottom line is I am NOT switching medications again until there is a cure because the Gilenya worked SO well for me for 6 long years and if the MS has progressed to Secondary, Gilenya is still used to treat the illness. Do you think I am being logical or irrational with my thought process?

I really appreciate you taking the time to visit my site today and I am really looking forward to your comments, which you know I will always respond to as soon as I possibly can! I hope y’all have a fantastic Friday and I also hope you are feeling well! Please never forget that I am always sending y’all positive vibes and lots of ❤love and comfort!

Love 2

Always, Alyssa

Intense Spasticity

Definition+of+spasticityFor the past few days I have been dealing with a lot of pain and discomfort in my legs and even in my arms. I have experienced this sensation many times over the years, so I was almost immune to it and did not allow it to alarm me too much. In all honesty though, as the days and feeling continued it just started to become quite annoying and incredibly uncomfortable. Nothing but my trusty heating pad ❤ seems to alleviate this feeling of pain, which is just VERY frustrating. So I decided to share a little information with y’all about spasticity, which I am sure most of you already know about!

Spasticity is feelings of stiffness and various ranges of involuntary muscle spasms. This is extremely common with those living with Multiple Sclerosis. Spasticity could be as mild as feelings of tightness of the muscles or so severe that it causes painful, uncontrollable spasms of the extremities, most commonly in the legs. Spasticity can cause pain and tightness in and around the joints and cause intense lower back pain, which is horrible to manage! Spasticity can be triggered by a number of things like sudden movement or position changes, extremes in temperatures, humidity or infection, but can also be ms spasticityaggravated by tight clothing!

There are different types of Spasticity are:

Flexor Spasticity involving the hamstrings which are the muscles on back of the upper leg and hip flexor which are the muscles at the top of the upper thigh. The hips and knees are bent and difficult to straighten.

Extensor Spasticity involving the quadriceps and adductors which are the muscles on the front and inside of the upper leg. The hips and knees remain straight with legs very close together or crossed over at the ankles.

There are treatments available for this possibly painful situation. Treatments are on an individual basis, but for any treatment it is important to work closely with a specialist. Some treatments may include certain exercises recommended by the specialist, changes in daily activities, medication or a combination of all three of these options. The two most common antispasticity medications are Baclofen and Tizanidine. Baclofen is a muscle relaxant that works on nerves in the spinal cord. Tizanidine works quickly to calm spasms and to relax tightened muscles. All medications that can be used, can and will work differently with each individual person, which is why it is SO IMPORTANT to always consult with a specialist and report all side effect experienced.

**Important Disclaimer** I am not a physician nor am I in the medical field, all information I am sharing is based completely on my own research and personal experiences, so please if you are experiencing anything to do with spasticity consult with your physician.

Thank y’all for visiting my site today! I hope this information was interesting to you and if you have any comments, please do not hesitate to leave them. I love❤ being able to read your comments and I do always respond as quickly as I can. If any of you have experienced this feeling and have found a good way to relieve the pain and discomfort, please let me know!! I hope y’all have a great day and are feeling well. As always remember 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

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

Purpose of Pain Management Doctors?

Pain management**Full disclosure, this gets a little political!**

I am starting to wonder why there are pain management doctors around and what good they actually do! Are these doctors supposed to be helping those who suffer with chronic pain or is there some other reasons for them I am not aware of? Why are patients that deal with a chronic illness that causes an incredible amount of pain expected to see the doctor that treats their illness, but also have to go to another doctor that is there to treat the pain caused from their illness? Why is the original specialist not capable enough to not just treat the illness, but also treat the pain symptoms that come along with it?

In the recent few months my pain management specialist has done absolutely nothing but give me the run around. This doctor that claims he wants to help him patients, has not only changed his story so many times, but also lied about what was said. What he has said to me during the appointments, verbally of course, were mildly different from what he put into his notes that I had never received until I finally demanded them. It does not seem to matter if you follow the directions of the doctor verbatim; they still find ways around doing what they took an oath for when they became a doctor. All physicians take what is called “Hippocratic Oath”, which forces them to uphold specific ethical standards, including medical confidentiality and Non-Maleficence, which means do no harm.

It is all over the news about what is called the “Opioid Epidemic” spreading around the country and also how the president says he wants to end the so-called “war on drugs”.  The president has claimed he wants to reduce opioid prescriptions by 1/3 of three years and the doctors are supposed to just fall in line with this insanity! The last time I DYrqFg6VwAAE4WPchecked, the president did not go to medical school and therefore does not know anything about medications and or illnesses that affect the people of the country he is supposed to care for! I do not think the doctors are going to fight for their patient’s well-being against the government and risk losing their medical licenses.

I can completely understand that there are people out there that abuse drugs of all different types. I do not think that those that need pain relief should be punished for another person’s abuse because the fault does not lie on the one in need; it lies on the one who has abused the drugs in the first place! If there is someone who has a true and well-documented reason from a medical professional for needing pain relief, they should not ever be scrutinized about this! Those living in pain never asked for this to happen to them and we all wish there was a different option, but we do what we have to do to continue living as normal of a life as we can. When a doctor tells a patient what is needed to continue care, the doctor should not change their minds multiple times and force the patient to go to other doctors and spend money they do not have, just to have the doctor say it isn’t good enough! In my opinion, they are failing drastically is the oath they took!

Looking at the big picture, I know that I really cannot blame the doctors completely because they are doing what they have to do in order to protect their jobs. They are following the laws that are put in place by the people who have absolutely no idea how to treat people! Doctors are listening to those in Washington DC that are on some kind of hne_pain_and_suffering_power trip, trying to fight a war that was created by the government! Logically, how else would all these drugs get onto the streets causing deaths across the nation? The people in this world who suffer are not being taken care of, but they are being mistreated and forced to handle the pain that is ruining their lives daily! A person that suffers from terrible pain has a hard enough time getting out of bed every day, so how can they be expected to do the normal daily things many can do without having any kind of relief from the pain they are inflicted with?

Thinking back about 10 years ago, my specialist who fully knew what I was dealing with was full capable to deal with my pain issues as well without sending me to another expensive doctor. What has changed and why did it change? It was not until recently, those at the top felt it was necessary to crack down on everyone. Pain apparently does not matter if a person is battling cancer, which is slowly killing them each day; they are going to have their pain medicine taken from them. Or what about those dealing with a chronic illness that is slowly taking away their mobility and affecting their day-to-day lives. Why should anyone that does not understand be able to be the judge on what is necessary for that person? Why should anyone be able to make a law that will take away a one-third of people’s rights to a pain-free life? How would the people making the laws, feel if they or someone they loved had to live in pain or would that just be different because it is closer to home for them?

As y’all can tell by this post, I have had a difficult couple days and I am beyond frustrated. My pain is at a high right now and is only getting higher when I have to deal with the doctors! Nothing is making sense to me right now, but I do see the changes being made at the top are doing nothing good for the country! It really makes me sad to see how only one single man can take a country to an extreme low!  I know some are going to disagree with me and that is okay, we are all entitled to our own opinions and I hope nothing I have said offended anyone.

I do really appreciate you taking the time to read this post and I look forward to your comments. I hope y’all have had a great week and the good news is it is almost Friday!  I hope y’all have a nice and relaxing evening. As always, I am sending all of you lots of love and comfort!!

Love 2

Always, Alyssa

What is right for YOU?!

nobody walks in your shoesThere can be so much confusion, frustration and sadness when you are first diagnosed will any illness. The doctor’s want to talk about medications “they” think you should take and sometimes they want to rush you to make the decision that affects your body. I think it is obviously important to listen to what they have to say; after all they are the “experts” so they should know what is best for medicine, right? But they maybe the expert with medications and illness but you are always going to be the expert in your own body!

I can remember when I was first diagnosed with Multiple Sclerosis my doctor wanted me to start something immediately. He had it in his own mind what was going to work best for me. Considering I was young and in complete shock I did not question him too much and just went along with his suggestion. Of course 17 years ago there were not as many disease modifying medications as there are today, so my choices would have been limited anyways. The disease modifying medication he suggested did not work for long because I was not capable of doing my own shots, but we live and learn through events like this!whats right

My best suggestion for anyone that has been diagnosed with any illness is, do as much research as you possibly can! Research the illness you have been diagnosed with, so you have a better understanding of what you are dealing with. Then research the medications available for your specific illness. The decision on medications is very important because it can slow the progression down of your illness. You need to feel comfortable with you decision because you are the one in control of your health!

Dealing with any illness is very difficult so it is extremely important to have a very strong support system! There might be times you need to vent out your frustrations! It can be vital to have at least one person that will be understanding, encouraging and listen patiently! During times when your illness causes you to feel worse than normal having someone there to help with daily tasks is fantastic. Of course I am not one that is good at asking for help, but if my pain issues get bad enough I will eventually ask for some minor help.  

Acceptance is probably one of the hardest things. But, once you know what you are battling, have done your own research and made an initial plan for how you want to manage your health, you are off to a good start! As time passes your plans may change and that is okay. You have to learn to be flexible because life is always changing! I have also found it very helpful to find a hobby that is almost an escape from whatever you have been exposed to. It is mentally helpful to have something that helps you relax and do whats right for youhide away from reality in short-term! 

I hope y’all have had a nice weekend! Are you ready for another Monday and start to a new week? I can honestly say that I am never ready for Monday because it is just a rude awakening to another long work week! On a positive note at least we are still here living our lives! I have been working 6 hours days so I may try to increase my hours for this week but we will see how the days go! 

Thank you for visiting my site today and making comments! I always love to read what you have to say. Y’all have the ability to open my eyes to new views which is so amazing!! I hope you have a great and relaxing evening! Much love to y’all!

Love 2

Always, Alyssa