Strong enough for the struggles!

strong enoughI do believe that all the struggles we go through in life, even though we may not be able to see it at the time, only to make us stronger! We do not get to choose what difficulties we face throughout life, but we can decide how we cope we them. Every battle we tackle can teach us better ways to handle anything else the future holds for us. 

Life is an uphill journey that we are always learning from. An experience you have endured previously can potentially help yourself not struggle as hard if faced with the same situation again or someone else moving forward. We all confront issues in life differently, so what works well for me may not work as well for someone else and visa versa.

Looking back at life I realize that some situations I thought were impossible, were not nearly as bad as I made them out to be. During high stress situations I think we may Beautiful strugglesometimes allow our emotions to have more control than necessary, instead of focusing on logic. Without a doubt I am very guilty of this because I always become very emotional when I am under a great deal of stress and put zero emphasis on being logical. In my sane and clear mind, I do know the only way to make it through difficult times is to look at the issues and find logical ways to fix the problems. For me personally being too emotional causes me to make irrational decisions that in the end never help myself or anyone else that was involved. 

I believe while we are going through difficult times in our lives, we should be able to be open up with our feelings to at least one person! The difficult part might be the person you can always open up to is actually involved with what you are struggling with. Even though it may be hard and you feel like you are suffocating with stress, you still need to find a way to be open about your feelings. Sometimes I will bottle my feelings up which only causes additional stress but I really do not like confrontation! 

I am still dealing with some issues from my exacerbation but I am doing much better. Honestly I can not say what is worse the pain or fatigue I feel everyday! Even though I have had a terrible head cold I have been able to work 5 hours each day this week and next week I will be doing at least 6 hours a day! It has been really hard for me to get back to my normal self, but I am not giving up my fight! 

Thank you for reading and commenting on my short thoughts for today! I will respond to all comments and emails as soon as I am able. I hope y’all have had a good day! Take care and much love to y’all!

Love 2

Always, Alyssa

 

 

First time with Rebif

journey continuesAs promised, I am carrying on with my fun journey of being diagnosed with Multiple Sclerosis. Unfortunately, when I was first diagnosed in 2002, there had not been oral medication approved or probably even thought of yet, so I did not have many choices. Like I had said in one my previous posts,  my doctor strongly urged me to try Rebif because he had seen a lot of success with his other patients, so I did give him the benefit of the doubt.

I can remember the first time I gave myself the Rebif shot! It took me forever to get the needle into my skin only because I was so scared of what was going to happen and how it was going to feel. I remember I asking my mother to be at my apartment with me because I never thought I was not going to have the courage to do it by myself, especially the first time and I needed a little support. Shockingly enough I did manage to get the needle in but then had a hard time actually releasing the medicine because it was already burning like fire. All in all I think my first injection took me about 20 minutes to complete, but I was proud of myself when it was over because I actually did it myself! I can still remember how much the medicine burned as it was released from the syringe and told my mother I would never do it again because I hated every moment of it. ThatRef evening I woke up several times feeling like I had the flu because I was cold but sweating and my body ached all over. Even the next morning I felt like I was still sick so I called the doctor worried. My doctor told me it was very common to have flu-like symptoms with Rebif and before my next dose I should premedicate with Advil or Tylenol,  as they would combat those negative side effects. Of course me being the patient I think every doctor dreads having had a lot of questions! I could not understand why a medicine that was supposed to be helping me would cause me to be even sicker and require more medicine. My goal was to take as little medicine as possible and they were only increasing what I had to take.

The next time I had to do the Rebif, I asked my mother to come over to my apartment and do the injection for me. I just could not handle  pushing a needle into my skin knowing  exactly how bad the medicine would burn and how I would feel the following day. Thankfully my mother was able to help me and do the injection for me. Afterwards, I did manage to do the injections myself for the most part. My husband knew what days I was supposed to do the injections and would remind me and encourage me to do what was needed. 

Technically, I was prescribed Rebif for about two years but slowly stopped doing the injections on the days I was supposed to because I had too many bruises and ran out of injection sites that were the easiest for me to do. My doctor figured out that the medication was not working because I was having more issues arise but he did not know the real reason it was not working, so I finally told my doctor that I was not taking the medicine any longer and told him why. I explained to him that I was not good at doing an injection every other day, so he and I discussed different options. Unfortunately my options were limited to other injection based medications or IV medications and I was not comfortable with any of my options and needed time to think about what I would do next. 

From my own personal experiences I know just how important it is to find the right disease modifying medication that works best for you. Back then, the diagnosis was still new to me and I was still being stubborn not wanting to face the facts that I needed to do something to slow the progression of the disease. I made bad decisions solely based on not wanting the illness to have any effects on my daily life and not wanting to  admit that this illness was not going anywhere. It was a childlike mind thinking if I did not Unknownacknowledge it, there would not be any consequences. I went as far to tell my doctor he was wrong and I did not have MS and I was getting a second opinion. I did exactly what I said and got a second opinion from another specialist. Those were two bad decisions all in a matter of a few months. I stopped taking anything for the MS and went to another doctor that did not seem to have as much knowledge. I ended up having my first bad exacerbation which caused me a lot of weakness and dizziness and I ended up back with my first doctor. As terrified as I was about going back to the doctor I told was wrong, he was very understanding about my feelings. This was also the first time the exacerbation was bad enough to require IV steroids. There were a few other medications I tried before finding the one that was best for me, which I will get to in my next post. These posts are taking a little longer because they are all emotionally draining for me.

I do completely understand how hard it is when finding the right medication for MS, but it is really important to do your own research and give things a try with an open mind. I have tried a number of medications so please do not hesitate to reach out to me if there are any questions I can answer for you. Please keep in mind all my answers are only based on my own experiences as I do not have a medical degree. Considering I have gone without taking anything I do know it is not the best idea and I only want to help!

Thank you for visiting today and sharing any comments you may have. I will respond to all comments and emails as soon as I can! I hope y’all had a good Monday and I hope you are having a great evening! Much love and take care!!

Love 2

Always, Alyssa

Awesome Blogger Award Nomination!

awesomeblogger

I feel so honored, privileged and thankful for you to consider me a nominee! Thank you Mackenzie for nominating me, I really appreciate this and you more than words can say! Mackenzie is a very passionate writer that is full of positivity and handles her illnesses with such grace! I encourage everyone to check out her blog lifewithanillness.

Rules For This Award:

  • Thank the person who nominated you.
  • Include the reason behind the award.
  • Tag it under #awesomebloggeraward in the Reader.
  • Answer the questions your nominator gave you.
  • Nominate at least 5 awesome bloggers.
  • Give your nominees 10 new questions to answer.
  • Let your nominees know that they’ve been nominated.

 

Mackenzie’s Questions

  • What is your biggest goal in life?

My biggest goal is life is to someday be able to write a book! I even have a plan for what my book will be able!

  • What is your favorite food?

If I am being honest, my favorite food is very unhealthy but it is pizza.

  • Cats or dogs?

I do love all animals but I guess I would have to say cats!

  • Why did you start blogging?

I started blogging because of my love and passion for writing and also to be able to help others that battle chronic illnesses. I want to be able to provide positive thoughts to illnesses that are not fun to live with and show everyone that there is a way to make it through even the hardest times in life. I want to be able to encourage others to never give up on dreams, even when you feel like all the cards are stacked up against you.

  • Where is your dream vacation?

My dream vacation would be to travel the world. I would start off in Hawaii! Then, I would go to Australia, Ireland, Sweden, Italy and then Denmark. I have big dreams for an amazing vacation!

  • What advice would you tell your 13-year-old self?

The best advice I could give the 13-year-old me would be to never give up on life and dreams because anything you set your mind to can be achieved in time.

  • How many pets do you have?

I have two amazing cats that truly bring so much happiness to me everyday!

  • Who inspires you?

The person in my life that has inspired me the most would be my Grandfather. The reason he was the most inspiring person to me is because he knew nothing but love and always treated others with respect. My Grandfather had no room in his life for hate or discrimination. 

My Nominees:

  1. Create Space
  2. Army of Angels
  3. Fuck MS
  4. Robyn’s Reflection
  5. Just a Quiet Girl, Living in a Noisy World

 

My Questions:

  • What made you decide to start blogging?
  • What is your biggest dream in life?
  • Do you have pets?
  • What is your favorite color?
  • Who or what is your greatest inspiration?
  • Where was your best vacation?
  • What is your most challenging goal in life?
  • What did you want to be as a child?
  • If you could give advice to the 15-year-old you, what would it be?
  • Who is your idol in life?

First, I want to thank all of my nominees for all your amazing posts and for all of your support since I started my blog! All of you are absolutely amazing and have great writing abilities. I have loved getting to know all of you and I am really looking forward to reading your answers! Thank you again to Mackenzie, livewithanillness, for nominating me for this incredible award! I hope y’all have a great day and keep your amazing blogs going! 

Love 2

Much Love, Alyssa

Invisible Illness

What-is-it-like-300x167What does invisible illness mean? Invisible Illness are disabilities that are not immediately seen. Illnesses like Multiple Sclerosis, Depression, COPD (Chronic Obstructive Pulmonary), APD (Auditory Processing Disorder) and many others are felt but not seen by outsiders. 

Living life with an invisible illness can be extremely frustrating because when something is not seen to the naked eye, people tend to think the condition is being made up and not a real problem. For all of us that battle with one of these invisible illnesses we know how much we feel it, so when anyone questions our illness it can be emotionally draining. I do  completely understand that a lot of people have not been well-educated as to what MS is and what it does to the body, so I do my best to explain it to those I have to be around like co-workers.  Honestly the only time explaining gets frustrating is when I have explained things is the simplest terms possible and the same person still does not get it and does not even try to understand. Invisible-illness-under-the-surface

We have all learned the best ways to survive any illness we have been inflicted with and continue to carry on an amazing life. Some would say I live a very dull and boring life because I typically go to work, come home, my husband and I have our TV shows we watch together every night, eat dinner, take care of our fur babies, read, write and that is pretty much all. We do not go out “on the town”, we both prefer to stay in the comfort of our home. When we are able to we like to go on vacations to the beach or the mountains for snowboarding, but we do not have a deep desire to be out constantly doing something. I prefer to not allow any kind of drama and disaster into my peaceful life because all that does is cause stress which leads to further health issues. I am able to survive the MS because of the choices I make in my life. I try to stay calm and positive because to me that is the only way to make it in this world. 

There are so many reasons why staying positive is the best way to live life! A positive mind will improve daily interactions with others, makes it easier to avoid worries and negative thoughts and it will bring optimism to your life! Even during the most difficult times in life it really will help to try to find the positive in the situation. I do believe that everything happens for a reason, it is just hard sometimes to figure out the reasons. I hope one reason I have MS is so I can show others that you can live a fulfilling life even while battling an illness!

Yesterday my husband and I went to have lunch with my in-laws, sister-in-law and niece. It was a nice to be able to catch up with family and I was able to show how much I have familyimproved with my flare up. I was in a lot of pain by the end of the visit but I had a good time. I am so thankful for the wonderful family that I married into. There is always great conversations and fun times! While it was great to be around family, I was so happy when we got home so I could change into comfortable clothes and be surrounded by our wonderful fur babies!

I hope y’all are having a nice weekend so far and if you went out shopping you were safe! I can only imagine how crowded the stores are, but I hope it was a good time overall! I always like to rest and not do much house work on Saturday, but on Sunday I will do the fun job of grocery shopping and laundry. 

Thank you so much for reading and commenting on my thoughts of the day! I have been so delighted by how many people I have been able to have great conversations with! I really love getting to know to know y’all! I really hope that I have been able to help y’all with things you are dealing with. I obviously have a lot of experience and knowledge with the struggles of MS but I actually have a lot of knowledge with making it through other strains life throws our way! Please feel free to email me anytime and I will respond as soon as possible! Much love and wishing you lots of comfort! I hope you have a great evening!

Love 2

Always, Alyssa

 

Being Thankful

203445-Happy-Thursday-Good-Morning-ButterflyGood morning Y’all! Today I am not giving thanks just because it is “Thanksgiving”, I am giving thanks because there are so many things and people I am thankful for everyday of my life. Like I said yesterday, I do not need a designated day that some countries only acknowledge thanks once a year for, I am thankful everyday for my life. I do understand that there are actually many countries that do not celebrate Thanksgiving and I do appreciate that, but they love their family just as much if not more than we do here in the United States.

This morning I was very curious on how Thanksgiving really started and what I read and watched was a bit disturbing. There were numerous Native Americans asked how they feel about Thanksgiving and their responses were upsetting because I never realized how cruel things were back when this holiday was introduced. I am going to attached the article I read online and y’all view more than what I talk about, http://www.independent.co.uk/news/world/americas/thanksgiving-2017-native-americans-videos-what-do-they-think-racism-columbus-redskins-a8070611.html . Many of the Native Americans that were asked about Thanksgiving believe it was simply a massacre. Puritans came and slaughtered millions of Native Americans, stole their traditional land and damned their rivers. Many believed that Christopher Columbus was the first terrorist in America. These people believe that now Thanksgiving is just a reason to have family together and over eat. Of course then after a massive meal, everyone wants to start shopping and spending insane amounts of money for Christmas gifts. Anyone that lives in the United States knows that the stores will be exceedingly busy from now until January with a tremendous amount of consumerism. I mean for God’s sakes there are stores that are opening in the early afternoon of Thanksgiving Day with  early bird savings. What happened to enjoying time with loved ones? I do not mean to sound so negative about a holiday that is meant to be surrounded by family, but it is quite upsetting to think about how this “holiday” really started in 1619.

I am eternally thankful for my family that is still here with us and those that have passedhappy thanksgiving in heaven on. I was truly blessed to have had my wonderful Grandfather in my life and my husband’s amazing Grandparents for so many years! My Grandfather and my husband’s Grandparents made such a positive impact on my life! They were by all means the most loving, accepting, compassionate and all around truly amazing people who ever walked the face of this earth. It makes me sad that they are no longer with us in the physical sense, but they will always be a strong part of our heart!

After reading the article and watching the videos that I shared with you, I really do not know how I feel about Thanksgiving. I do not like to hear of anyone being mistreated because I feel like anyone and everyone must be treated with love and respect. Let me ask you, how do you feel about Thanksgiving and how do you celebrate it? I will love my family daily until my last breath and I will always enjoy any precious time I am able to spend with them! My heart breaks to know that even almost 400 years ago there were so many people being treated unfairly and it still goes on today in 2017. It makes me sad to know there are so many people who are not fortunate enough to have food on the table but then there are so many others that will spend a small fortune on shopping. What would happen if all those that spend so much money shopping the “greatest deals” around the holidays, would spend even a fraction of that to that to help those in need?

Thank you for taking the time to read my thoughts for the day. Again, I was not meaning to be negative I just like to know as much as I can about our holidays and what we are celebrating for. I truly hope that you enjoy whatever you are doing on this beautiful day! Please leave any comments you have for what I have written today and I will respond as quickly as I can. No matter what the day is, please enjoy your life as much as you possibly can and never forget to share love with those you hold dear before you miss that opportunity!

Love 2

Always, Alyssa

So Much To Be Thankful For!

Reason_To_Be_ThankfulI have always found it a little strange that we need a day that is titled “Thanksgiving” in order to think about what we are truly thankful for in life. No matter what kinds of struggles we may deal with in our lives, there is always something that we should be able to think of that we are thankful for! I do not need a “special” day to appreciate and acknowledge the great parts of my life. I feel blessed to have family that loves me unconditionally and offers me emotional support when I need it! 

Everyone at work today was talking about their plans were for Thanksgiving. Most people complain about either making a huge meal or having to drive long distances, when it is really all about spending time with loved ones. For Thanksgiving my husband and I are planning to have a quiet day at home together with our cats! I did talk about making us the traditional Thanksgiving meal but I decided to make what I am best at, lasagna! I feel like it has been a little while, but we are planning to visit with my in-laws on Friday. With my mother being a nurse, she has to work tomorrow but I hope for her sake it will not be a busy day!

In a very crazy way, I am even thankful for MS. As difficult as it can make my life, it Thankfulreally has made me a stronger person. Plus, I do know that as much pain as I have been experiencing, it could be so much worse than it is. I am so grateful that I still have full function of all my body parts, even if they hurt like hell! I remember when I was first heard I had MS, I was terrified that I was going to be in a wheelchair. Even if someday I do have to use a wheelchair, I am old enough now to know my life will still carry on, I will still be able to do most things I do now but back then I thought it would be absolutely horrible. 

Even though it has taken me a while, I have been able to slowly build my strength up which is enabling to work more hours daily. Shockingly enough I had a fairly good 5 hours at work today and I was able to control my stress and pain slightly better. Next week, hopefully things will continue to improve and I will get closer to my normal work schedule of 40+ hours. I know my plans of working so many hours does not seem very exciting but the paycheck is always nice to see! I guess it is true, you have to work hard in order to play and do what you want to do in life.

friendship_and_butterflies_note_card_set_of_eight_681d5cb5Another thing I am very thankful for is my blog and the amazing friends I have made through this. I have had the opportunity to communicate with people all over the world and learn not only about their experiences but also their country. Being able to learn so much about other countries I feel like I have almost traveled the world! 

I have learned that not all countries celebrate Thanksgiving, but I hope that whatever y’all do tomorrow and the rest of the week is filled with happiness and comfort. I am so excited that I have the next four days off of work to rest up more so that I can feel close to 100% better for next week. I also really want go this weekend to Crisis Ministry so I can give my donations for those that are in need of warm clothes. The temperatures have been steadily dropping, so I know there are people out there that will benefit from some warm sweaters and jeans! 

As always thank for you for taking the time to read and comment on my thoughts for the day, I will respond to all comments as quickly as I can! I hope y’all had a great day and I hope your evening goes very well! Take care and much love to all of you!!

Love 2

Always, Alyssa

Another Day Down!

Happy Tuesday 1Today was just another day trying to work towards my goal of increasing my hours. I found that now I am doing better early on in the day, which is opposite that it was a few weeks ago. After working non stop for four hours I started to feel my body start aching and the headache start to slowly come back, but that might have been from staring at the computer for too long. But, I do think overall I am slowly getting better. A few weeks ago I would be crying and hardly able to move because I was in so much pain, but now things are nowhere near that level!

Tomorrow is going to be a very busy day because we have one person out sick and another person whose wife just had a baby today. My small team of co-workers just decreased by half! I told my manager that I was going to try to get to work earlier tomorrow and stay a little later than I have been, but that I would not leave until my half calm and slowof the work was completed. I get pretty determined and ambitious at times! I also told him that next week I am not promising to be back at 40 hours a week, but I would do as much as possible and wanted to just play my time by ear for now. He was very understanding and told me he definitely wants me to be back to work full time, but did not want me to rush myself. I do believe that my manager knows I value my work and want to be able to give all I do 100% but right now I do not have that ability, but I will get there!

I do know already that MS flare ups can last anywhere from a few days to months before all the symptoms have passed. The last terrible flare up I had was probably 8 years ago and I was out of work for 2 months, which was so frustrating for me. I have had a few minor set backs since that last bad flare up 8 years ago, but I only had to miss work a few days before I was back to my “normal” self. I really can not complain because as long as I take care of myself, rest enough and stay on the damn Gilenya, I do not think I will have anything too detrimental happen again for hopefully years. I know I need to learn to relax more and stress A LOT less I am trying, but I am 36 years old so it is hard to change old habits. 

Speaking of learning to relax more and stress less, I started a fabulous book today. My newGet your shit together book, that might end up being what I live by is called “Get Your Shit Together” by Sarah Knight. The key thing that caught my eye right away is she says, “How to stop worrying about what you should do so you can finish want you need to do.” I have a problem when I am always thinking about what I think “needs” to be done and forget the things that I actually want to finish. This book is a very easy and fun read, but I will warn you ahead of time she might use a lot of profanity which I guess the title gives that away. I truly love how real Sarah seems to be as she writes, which I find really inspiring. She does not try to sugar coat what we all sometimes do wrong when we make plans or allow for more  obligations to our lives that are not needed. I am really enjoying this book, so of course I wanted to share this with y’all! 

Thank you for reading and commenting on my thoughts for the day! Now that I am starting to feel better I am able to focus a lot better on my writing. I think there have been a few days that I was all over the place but I had so much building up in my mind and writing is how I can deal with those thoughts! Now that I am thinking clearly I will be able to continue my flash backs of when I was first diagnosed. I hope that what I went through all those years ago will be able to help someone else that maybe dealing with something similar now.

Until next time, I hope y’all have a great and relaxing evening! Take care and thank you again for all of your continued support!

Love 2

Always, Alyssa

Successful Monday!

Monday 4I hope y’all had a great start to your week! Hopefully it was not a dreadful long Monday! I went to bed last night with a terrible headache and woke up early this morning with the same headache with no relief. But, I did still go to work and make it almost 5 hours, which was more than I had been able to do in a long time! So, I take this as a step in the right direction! I think things can only go up from here on out!

Considering this is a short week, I am hoping that I will be able to build on the amount of hours I can handle at work. After three hours all my pains started to increase, but I was determined to push myself further and not just cave into that pain. I thought maybe if I got up and walked away from my desk it would help with the blood flow and relieve some of the pain I was having. Getting up to stretch did help some and allowed me to continue my work for an additional 2 hours! I do think sitting at a desk, staring at a computer screen for extended periods of time is not really healthy for anyone and we all need to be able to move around for short lengths of time. Back at work

I can not say if the alarm going off or getting ready for work or the drive into the office is more draining, but all of them together are exhausting. Then you have to add the actual work to the mix! My goodness after my almost 5 hours today not only do I feel very fatigued but I also have a lot of pain. I plan to spend my evening trying to relax doing as little as possible! 

I really hope I have the strength to increase my hours over the next two days and then I will have a four-day break from work responsibilities. I can not say how I will be feeling physically next week, but I am going to try to stay very positive and take things slow. I do not want to set myself up for failure by saying next week I am going to work my normal Cure MSfull-time hours and be perfectly fine, because that is just making an irrational assumption. If I had the ability to control all the pain I have, I would have done that weeks ago, so who is to say I will be able to have that control next week? I am doing the best I can right now with dealing with pain that does not seem to go away or even ease up and the stress all of this is causing me, if only I had a magic wand to make everything better!

Thank y’all for visiting and reading my thoughts for the day! I do know and understand that things could be much worse and I do believe they are slowly getting better, I just wish things could be back to normal sooner than later! I hope y’all have a nice and relaxing evening!! Take care and I look forward to reading your posts and your comments to my post today!

Love 2

Always, Alyssa

Quiet Sunday

Good afternoon Y’all, ISunday hope you have had a great weekend! It is hard to believe tomorrow is already Monday and the weekend is over. Unfortunately, I was not able get anything done that I wanted to over the weekend but I guess there is always next weekend. The only thing that I really wanted to do over the weekend was get the rest of my donations together and bring them to Crisis Ministry. With the change in the weather, I want to be able to donate some sweaters, socks, jeans and hoodies to those that are struggling and give them some warmth and comfort.

I am currently working to keep my flash back experience from when I was diagnosed going, but needed to gather my thoughts a little more about everything that happened. Today, I just wanted to write something that has more to do with what my passions are in life and a little less about the dreaded diagnosis!

I accepted many years ago that I had a chronic illness, that did not as of yet have a cure and may actually require me to adjust some parts of my life. Sometimes I can admit, I do allow the thoughts of what I should adjust in my life take over and forget that I just need to live life to the fullest!

There are so many other parts of life that I absolutely love and enjoy! I was very nervouswriting is my passion but I had several reasons for starting my blog four months ago. I have always been very passionate about writing and did write a lot of poems. I also have a strong desire to help others that are going through hard times. When I learned about blogging, I thought it would be the perfect way to use two of my passions and hopefully be able to do something good for others.

Through writing about my experiences with Multiple Sclerosis, I have had the amazing opportunity to connect with others that battle other Chronic Illness and learned so much about various illnesses that I only knew a little about. I have learned how others deal with their struggles and it is absolutely astonishing what some people do go through daily. The reactions that I have had over these four months have been both encouraging and enlightening. The positive attitude I do try to portray has given those that read my posts hope and courage, which I am so happy I have been able to do. I do strongly believe that the only way to make it through the hardest of times in life is to put a positive spin on the issues. During my most recent flare up, I have found that if you only think about the negative nothing is going to improve, but if you try to see the bright light through all the dark clouds, things will improve but it takes time.

when it rains it poursIt is so true that when it rains it pours. I guess it is almost a good thing for all bad things to happen all at the same time, because once you get through all the negative, good days will follow! Y’all know that I went through one heck of a flare up but at the same time my husband was battling with his own chronic pain. He suffers from migraines and terrible neck problems that literally nothing seems to help. Thankfully, my job was very understanding about my issues but I almost think it is because their hands were tired. Now his job on the other hand was not as understanding which is really ashame. Many people in this world have something that they have to deal with, but of course there is a lack of understanding from co-workers, friends and even family sometimes. I think that if someone does not have any kind of pains they deal with or have a family member with something similar they just can not relate. I will never understand why it takes most people to have someone close to them that suffers from an illness for them to be truly care. I have said it before, but there is a difference in empathy and sympathy but they are both very important. I can say from my own personal experience, it is frustrating and lonely when you feel like no one understands or even cares to try to understand what you are dealing with in life. 

I love our cats with all of my heart. They both bring so much joy and laughter871 to our lives on a daily basis. Animals are wonderful, because they have not been tarnished with all the hate, greed, jealousy and cruelty that society brings into our lives. Our cats do not know hate they only show unconditional love to us and each other. I am so thankful for them and all their love! I wish people today could learn something from animals love!

I am truly thankful for my family as well. My mother does her very best to understand and sympathize with my MS struggles but I know it is hard for her because she does not family is importantlike to see me in pain. Even though my husband has been dealing with his own struggles, he tries to be my rock and assure me that my pain issues will get better. My in-laws are wonderful people who are always trying to do what they can to help their loved ones. My mother in law is a lot like me and wants to see the good in people. With all the hatred in the world today, it is sometimes so hard to see the good but it is important to at least try. My sister-in-law came to our house last night with our niece and let me just say, that little girls laughter can brighten the room so easily. This 5 year old girl has more sense and can carry on a conversation better than most people I come in contact with daily! When I was growing up, my family was not close at all, so I never really understood how important a strong family bond was. I did always have a strong connection with my Grandfather, but that was all I knew besides my mother. I am delighted that my mother and I have always been able to maintain our relationship, even through really hard times. I am so incredibly thankful for the family love my husband has brought into my life! I am truly thankful to finally understand a true family bond!

I really hope y’all had a great weekend and are ready to start a new week. This week I am going to make a true effort to be able to work more than 4 hours, but I am also not going to push myself too hard. Thankfully, it is going to be a short week regardless of how many hours I can handle! My office will be closed on Thursday and Friday, so I only have to get through three days. It hopefully will not be too hard. I am working on a post about medications I have tried and what that experience was like for me. Thank y’all for visiting today and as always, I do appreciate all of your comments! I do respond as quickly as I can! I hope the rest of your day goes well and take care!!!

Love 2

 

Always, Alyssa

 

First Neurologist Appointment

butterfly weekendI hope y’all had a nice Friday and a great week! This week I actually worked more than I have in over a month due to my crazy flare up. Luckily my job has been very understanding with my reduced hours. Reducing my hours has been so much helpful.

Even though it is a little difficult and slightly emotional for me, I want to try to carry on with my journey of being diagnosed with Multiple Sclerosis so many years ago. As I already said, my fabulous eye doctor had worked out my meeting with the best Neurologist (well that is how I feel at least!) where I live, before we even had the official MRI results. I guess he just had that doctor intuition to know what was going on and how to handle it as quickly as possible. It still completely blows my mind that an eye doctor, of all people, has the ability to figure something like MS out, when a lot of general physicians might not be able to do so. As most of you know getting an appointment with a Neurologist seems to take forever, but my eye doctor got me an appointment 2 days after we had the MRI results, which was amazing in itself! I think they must have been friends or golf buddies! 

The two days I waited to meet my Neurologists seemed like the longest days of my life! I did so much research on MS during those days and truthfully, it scared the hell out of me. I felt like my entire life was changing before my eyes and there was no stopping it. When you get diagnosed with a chronic illness at any age but being as young as I was, you still have a childlike mind and think life is over and will never be normal again.Cure MS

Between my research and crying, the days finally went by and it was time to come face to face with the Neurologist, that seemed to hold the cards of my future in his hands. I remember walking into the office and seeing so many people either sitting peacefully waiting or in a wheelchair or there was a cane or walker beside them. This was a scary experience for me because I already thought that someday, what those people were going through would be me and it terrified me to no end. 

Finally after a long wait, which was honestly only about 5 minutes the nurse called me back. The nurse was an amazing woman who was comforting and understanding of my emotions and fears. After she did the vitals and vision test, the nurse left the room telling me the doctor would be in shortly. It was not but 5 minutes when the doctor came in and introduced himself as Dr. Kaufman. He informed me that Dr. Atlas told him a little about what I had been going through but asked me if there were any other alarming symptoms I had been dealing with. At that time I told him that I had been battling headaches my entire life but was not sure if he would consider that an alarming symptom. Of course he entered those notes in my chart and then told me he wanted to go over the details of my MRI. He explained the issue I was having with my left eye was known as Optic Neuritis but it can and will go away. He told me that Optic Neuritis is demyelinating inflammation of the optic nerve and was common with MS patients. I did not handle that well andleast expect it started crying again because he had just classified me as a MS Patient and I was not ready for that yet. He continued with explaining what the MRI results were. He told me that I had several lesions in my brain and in my spine, but we may be able to reduce their size by using steroids. He told me that my MRI results indicated that, yes I did in fact definitely have MS and I needed to start thinking of medication to take to slow the progression. He asked if anyone in my family had MS and I told him no one had MS. He did say it was good that we were able to catch this while I was young because we had a better chance of controlling it and that to date I was his youngest patient, oh what luck I have!

It was not until the end of our conversation he brought up the disease modifying medication again, which I was dreading. He said he would recommend I try Rebif, which is a sub cue injection to be done three times a week. I was not thrilled about having to give myself a shot 3 times a week, but back then there were not oral medications available yet and Rebif was the best drug for Relapsing Remitting Multiple Sclerosis, so I said I would try it. The nurse came back into discuss with me how to do the shots and what the common side effects may be, but they would all pass.

So I left the doctor’s office and headed home with this new medication that I had to give myself 3 times a week. I was so scared and exhausted from all the emotions that I felt before the visit and during the visit, all I wanted to do was get home to the comfort of my bed and try to forget everything!

Trying to come to terms with what I would have to live with was so hard but I promised myself way back then I would get through it the best I could. I actually vowed to myself that no matter what I would never allow my illness to control my life but I would negative 1somehow control the illness. I did not know anyone that had MS besides my father’s wife so I did not have many people to talk to about it. I actually did my best to hide it from most people because I felt too much shame that I had an incurable illness that I would have to live with for the rest of my life. At that time there were only a handful of people who knew what I was going through, which were my mother and grandfather who were so supportive and caring! For the few shots I had to do my mother came to my house to help me because I just could not do the shot at first. It is truly amazing what we can all learn to live with, especially when we know there is no other option!

Thank you all for reading my post today. I am slowly trying to go through my experience with being diagnosed with MS years ago and it is not easy. As much as I wanted to forget everything, I still remember this diagnosed like it was yesterday. Over my next few posts I will write more about my experience with the medications because there were a few I was on before Gilenya. Please feel free to leave any comments you may have and I will respond as quickly as I can! I hope y’all have a nice evening and a great weekend!!

Love 2

 

Always, Alyssa