Reflecting on 2017

dwell on the pastI know there is normally no use dwelling on the past because it is more important to look towards the future, but reading some of my previous posts got me thinking. There was a lot of talk about pain in 2017. Everyone probably already knows that Multiple Sclerosis does come with a fair amount of pain but does talking about it really help? I know that writing about the pain did not make the pain magically go away, but in a way it helps to get those negative feelings out. Sharing my story with many people I unfortunately have not met in person and hearing their stories made the situation a little less lonely.

Living with an invisible illness can make people feel a little isolated at times. Granted for the most part my family understands my illness and is understanding, but when I go to work not many if any of my co-workers really know what I live with. When I park in a handicap parking space at the grocery store, not because it is impossible for me to walkinvisible-illness but because it does cause unnecessary pain to walk far distances, people look at me like I am committing a crime because I look perfectly normal. I have learned to not allow the judgments of others to affect my life but sometimes the looks are a little disturbing. I will never take the last handicap parking space at any store because another person might have a more severe condition and need it a lot more than I do. I always try to be considerate of others even if it does in turn cause me a little extra pain.

I have had Multiple Sclerosis for almost 17 years, but in October I had a ferocious flare up that caused me immense troubles. I was out of work for over a month on short-term disability which caused me some emotional troubles as well. All I could think is why am I only 36 years old and already on short term disability? Is this only going to continue on this path and force me to be viewed as a disabled woman? As crazy as it might sound I strong enoughfelt a vast amount of shame with this. I did not want anyone besides my direct manager to know anything about this so I did not have to deal with any ignorant comments when I did returned to work. Thankfully the short-term disability did not extend and I am slowly getting back into the swing of things at work. I am not working a full 8 hour day yet because it is not worth pushing myself too hard just to have a setback. It is called prioritizing, I am learning to put my health first and put my job second.

Pain is inevitable and continuing to live life is not optional. I still battle pain each day, but I refuse to give up. I want to be able to live a normal life even if my normal is different from others. hne_pain_and_suffering_We are given a chance to enjoy our lives no matter what challenges are we encounter. I am trying to fight my pain and MS with a positive and optimistic mind-set, it might not work every day but I will not allow these issues to control me! 

I hope y’all are having a good weekend! Hopefully you are feeling well and staying warm! These crazy cold temperatures have made me want to stay inside with my blanket and heating pad. According to the weather channel the temperatures will be on the rise next week, but whose to say that will last or really even happen. 

Thank you for visiting and commenting on my thoughts of day! I always appreciate hearing what you have to say and do always respond as quickly as I can! I hope you have a great and relaxing evening!! Much love to y’all!

Love 2

Always, Alyssa

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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

Day 2 back at work

WednesdayYesterday, my second day back at work was not very successful. I had planned to be at work longer than I was on Monday, but after only 3 hours was starting to feel absolutely terrible. Last night, I could not sleep at all because my pain was so extreme. I ended up not going to work today because of not sleeping and being in too much pain. I am hoping tomorrow will be a better day!

Trying to heal from my most recent exacerbation has been pretty difficult and I do not really know why. I am trying to remain positive because I do believe that is the only way healingto deal with hard times. If you constantly stay in the negative mind-set, things will never improve. But honestly, I have been being positive and getting rest, but things are not getting any better. I guess it is possible that I am trying to rush myself to get well and I am being hard on myself if I can not do something, like going to work today. I know my manager is very understanding, but I just want things to be normal again. I could not even do my daily post yesterday because I felt so horrible. I guess tomorrow is always another day to try again!

I am planning to rest tonight and try turning my brain off for a little while. I will do my best to go back to work tomorrow with my adjusted hours, but if for some reason I can not do it, it is going to be okay. We can not rush the way our bodies feel because all that 6a0120a8df43e7970b01b7c8136efe970bwill do is push us in the wrong direction. It is frustrating to think in my mind that I can do everything I was able to do a few months ago but when I try, I can not do it. Pain is such a difficult thing to deal with. No one is able to see what you are going through and trying to explain it is almost impossible! My husband keeps trying to reassure me that my flare up issues will pass just as they have always done before, I am just having a hard time seeing the light at the end of this dark tunnel. I think it is harder for me this time because this is the worst flare up I have had in the 16 years I have had MS. 

Thank you for stopping by and reading my thoughts for the day. As always I truly love your comments and I do always respond as quickly as possible. Our communications really do make me so happy. I am planning to do a few posts explaining when I was first diagnosed and what I went through, I just have to wait until I am feeling a little better. I really hope y’all had a good day today and I hope you have a great evening!!

Love 2

 

Always, Alyssa

 

Minor Set Back

Hang In ThereGood afternoon Y’all! I hope you had a good Thursday! It is amazing, the weather is finally starting to stabilize and be cooler temperatures with no humidity! This summer was insanely hot every single day. High temperatures and humidity makes things miserable.

Today was a pretty bad day for me. As y’all know I went back to work yesterday, but only was able to work 5 hours and had to go home because of the intense pain I was having. I had so much additional pain in my back and so much leg spasticity, I could not even sleep last night, at all! Needless to say, I was not able to go work today. I think it is possible I tried to do too much yesterday and pushed myself further even when I felt the pain getting worse. It is okay though, a minor set back will only make me stronger and things will get better. I amMinor Set Bac hoping tonight I will be able to get some sleep and the spasticity will calm down so that I can go to work tomorrow. No promises as to hour many hours I will work, but I am going to give it an honest effort!

I do think it is best while healing I should not make any promises as to what I am going to do. I think it is best to just take things one day at time, or even sometimes an hour at a time. If I get too much on my mind of what I think I need to do, it will only cause me stress, which will only allow for negative things to come into my life. Even though this flare up has been the worst one I have experienced, I can honestly say that I feel truly lucky. I have had MS for 16 years and only had a couple of bad flare ups. I guess in my opinion that makes me blessed. Having a debilitating illness for this One Day At A Timemany years and still having the ability, most of the time, to do what I want to is purely luck! I can not say for sure though if it is really luck or just the fact that I will not give into anything, no matter how bad things get. Even though my legs and back are as bad as they are, I still want to do as much as I can for myself and only ask for help when I have to. Call it stubborn or headstrong, but it has worked for me. 

I hope y’all have a great and relaxing evening! I truly love all the comments y’all make because I love being able to communicate with others that understand the trials I go through. I hope that during our conversations, I am able to help you as much as you help me. I try to respond to all your comments as quickly as I can and when asked any questions, I do try to give the best advice I can based solely on my experiences. Take Care!!

Love 2

 

Always, Alyssa

Plan of Action!

Happy Tuesday 2I hope y’all are having a good evening! I did not return to work today as I thought I would, but I do have a new plan. I discussed my plan with my boss this morning and he agreed to allow me to adjust my work hours for the rest of this week, I will be working 10-6. Mornings have been significantly harder for me, which is crazy because I have always been a morning person. Hopefully this mild adjustment will help gradually get back into the flow of work. I do not plan to over do anything because I will then be back in a bad situation.

No one can say for sure if this flare up happened because I decided to switch my medication from Gilenya to Tecfidera or if there was another reason for it. However, my doctor did tell me several times that Tecfidera was not strong enough to keep my MS under control, which maybe she is right. I am going back on Gilenya starting Monday October 30th. I do need to go through the 6 hours of observation again, but a doctor is being sent to my house to do this, which makes things a little easier. Last time I had to sit in a room with several other people for 6 very long hours and it was not very comfortable. Hopefully once back on the Gilenya my MS will be under a little more control. Besides going back on Gilenya, I am learning to keep my stress under control. Stress can cause so many issues for everyone, not just those with MS.Butterfly hope 

I am not really sure why but I have had a headache for days now. It will ease up for a short amount of time, but then it gets so bad I can not even see straight. I am wondering if these headaches have something to do with the steroids I was on. Hopefully my body will continue adjusting and these headaches will stop. I do unfortunately still have a lot of pain in my mid to lower back and I have numbness in my legs. But, like the headaches hopefully this will end as well.

I hope you have a great evening! I will let y’all know how my first day back at work goes tomorrow. I am so glad I was able to adjust my hours and do not have to be there until 10:00! As always if you have any comments please feel free to leave them and I will respond as quickly as I can! 

Love 2

 

Always, Alyssa

 

Try again tomorrow

Everything will be okGood afternoon Y’all! I know I said yesterday that I was returning to work today. Unfortunately, my mind was ready to go back to work but my body was not quite there yet. I woke up this morning in severe pain all over and the numbness in my legs and feet was on overdrive. It has been hard for me to continue moving around my house but I am trying!

Just because my plans to return to work today did not go as planned, does not mean I have been defeated. I am going to try again tomorrow and see how it works, but if it does not go as planned I will not be disappointed in myself. I know that I made the right decision to give my body at least one more day to recover from this I willterrible flare up. I know how important it is to not be hard on myself and push to hard, because all that will do is bring me back to square one. I do not want to go backwards in my healing, I want to move forward. Taking the healing process slow and not rushing myself will definitely result in a better outcome. I believe I am getting closer just not quite at the finish line, but I WILL get there!

I really am truly blessed that I have SO much support as I go through this difficult time in life. My family has been amazing, trying to do everything they can to make life a little easier for me. Also, all the friends I have made through this blog have been incredible with encouraging and supportive comments. Thank y’all for all your kindness! I hope you all have a great evening! And as always please leave any comments you have, I will respond as quickly as I possibly can! Take Care!!

Love 2

 

Always, Alyssa

Ready or Not!

Hopeful butterflyI can not believe it is already time to go back to the real life. Returning to work after a little more than two weeks, due to a terrible flare up is going to be challenging but we all have to face difficulties in life. Tomorrow might end up being one of the most difficult Mondays for me, but I am strong enough and have enough courage to handle it.

Many of you have read along during my troubles over the past few weeks and even months, while I battle with decisions, medications, doctor’s appointments, insurance companies, frustrations and so much more. So many of you have gone through some similar situations yourself and have been so incrediblynegative encouraging while I go through my own. I feel that I have learned so much over this time that has made me a stronger and wiser person. Of course, I have had times during this journey that I felt like nothing was ever going to get better and cried what seemed like an endless amount of tears. But, I have also developed a greater sense of positivity. My situation could have been so much worst. We all fall on hard times in life, but it really is how we choose to tackle those times that makes us who we are and builds our strength and determination. 

Even though I am going to return to work tomorrow, I know that I still have some healing to do. I still do not feel 100% yet, as I still have a lot of pain, numbness (which scares me more than the pain), headaches and fatigue. I am completely determined to not allow this illness to control my life. I will not play the victim to an illness, as I do create the lifeknow what changes I need to make and can’t place blame on anyone but myself if they are not made. I have seen what allowing stress and negativity into my life can do to my mind, spirit, health and body, and I will do everything in my power to never allow it to occur again. 

I hope y’all have a good Monday! Wish me luck tomorrow. I am sure it will be fine but I am still very nervous about my morning. Please leave any comments you may have and I will be sure respond as quickly as possible! Take care and thank you so much for always reading my posts!

Love 2

 

Always, Alyssa

Healing Slowly!

butterfly weekend 1Happy Friday Y’all! I hope you had a great week and are ready to enjoy your weekend!

I only have two days left to get better from my flare up, as I am returning to work on Monday. I actually got up this morning and had things that I wanted to do, but after taking a shower, I was out of energy and needed to rest. I guess it might take time for my energy level to stay consistent. I need to spend this weekend allowing my body and mind to continue gaining strength that I need!

I am a little nervous about going back to work on Monday. I mean, I have not been there in 2 weeks. What if I forgot how to do my job? Or, do you think your job is like riding a bike and you never forget? I guess we will see!

Even after all the rest and steroids, I still feel achy and fatigued. I think it is possible this flare up  happened when it did, to teach me patience. Considering I am a strong believer that everything happens for a reason, this makes sense to me. Of course, you are not able to time when a flare up is going to happen or schedule it when it is convenient, but myButterfly hope flare up came at the worst possible time in life!

This could be the universe’s way to teach me some valuable lessons. It is possible that I had started losing hope and faith in life. Maybe I was focusing too much of my energy on the negative aspects life can bring and ignoring how wonderful life really can be. I guess in a way, maybe I was losing myself. I am accepting my flare up as a few lessons that I needed to learn and remember. 

I hope y’all have a great evening! I hope you enjoyed my post today! Please leave any comments you have and I will be happy to respond just as quickly as I can! I really enjoy the communications we all have together! Have a wonderful and restful weekend!

Love 2

 

Always, Alyssa

Constant state of Fatigue!

good afternoonGood afternoon Y’all! I have been out of work for two weeks as of today, due to a MS flare up. It has been a difficult journey for me trying to get myself well again. I did the 5 days of steroids the doctor ordered and of course, it was horrible! I have been trying to rest so my body will be strong enough to go back to work again on Monday. 

After I completed the 5 days of high steroids, I did do a couple of days of a taper down dose. Initially, the doctor was not even ordering a taper but my pharmacist and myself thought it was safer to have the taper. I only ended up doing 3 days of the taper and decided that I just could not handle anymore steroids. 

I have of course had minor set backs over the years, but this flare up I am dealing with now, is the first bad one I have had in years! The last time I was on a high dose of steroids and out of work due to a flare up was probably 7 or 8 years ago. I could be worseremember that flare up pretty well of course. My symptoms were vertigo and pain in my legs and feet. Now, 7 or 8 years later I am back in that same situation, but this time I have pain all over my body and numbness in my legs and feet. I have been dealing with the back pain for years now, so it really is not anything new. I really have nothing to complain about, if I am going to just have one horrible flare up every 7 years and just have minor issues the rest of the time. Of course the minor issues can be painful, but they will heal and probably somewhat expected anyways. I just really hope that the flare ups do not continue to get worse like it was this time. 

The biggest issues I am dealing with right now are: an enormous amount of fatigue, pain, headaches, numbness and lack of concentration. I still think that the steroids are working their way through my body and I will be back to my normal self again soon. I am doing my best to get as much rest as possible and of course not allow myself to get stressed. The craziest thing is, I feel so tired but can not take naps. I still feel very shaky, probably because of the steroids, so all I am able to do is rest while watching TV. 

The numbness issue is strange! I have had numbness in my legs and feet for a while now, but recently the numbness has spread into my lower back and arms. I know the numbness I am experiencing right now is because of new lesions on my spinal cord and brain. I am really just hoping that everything that I am feeling or not feeling right now, will start getting better sooner than later. The wonderful steroids are still working on decreasing my inflammation, so that only thing I can do is sit back, relax and wait!

meditationI have been meditating in the mornings, and even in the afternoon if I start to feel myself getting stressed. I noticed that when I allow my body and mind to stress, my pain and numbness increases drastically.  From now on when something stressful occurs, I am going to take just 2- 5 minutes to meditate. I think this is going to be a huge help for my healing! 

I hope y’all have a great evening! As always, please leave any comments you might have and I will respond just as quickly as I can. I am really enjoying the communications I have been able to experience with so many people and look forward to so many more! Take Care!!

Love 2

 

Always, Alyssa

The positive mind heals!

meditationGood Evening Y’all, I hope you had a good day! I spent my entire morning going back and forth with my doctor’s office and my insurance company, to get my short-term disability paperwork completed. Literally, all that is needed is the doctor’s signature and for the office to fax it for me. That does not seem all that hard to me, so hopefully they will finish that by tomorrow. 

I purchased a book yesterday called, “Meditation: Meditation for Beginners- How to Relieve Stress, Anxiety and Depression”, written by Yesenia Chavan. This short book provided me with some knowledge of how Meditation really does benefit you mind, body and soul. Meditation allows you to focus entirely on the present moment and not any personal worries, stresses or deadlines you may have. I have only done meditation for 2 days now, and only for 5 minutes a day, but I am hoping that if I continue doing this daily it will be beneficial to my health. 

Meditation-Center-GreetingI did read today that meditating 5-10 minutes a day can not only reduce inflammation in the body, but also reduce stress related ailments such as headaches, insomnia and anxiety attacks by lowering the levels of blood lactate. After I read that meditation can decrease inflammation, I thought it could not hurt at all to try adding this to my daily life. I did watch a few videos on YouTube about meditation, just because I wanted to make sure I was doing it right. I really like meditation with Gabby!

One quote I read earlier was, “The soul always knows what to do to heal itself. The challenge is to silence the mind”, Caroline Myss. I absolutely love what this is saying! I know that I need to practice what Caroline says, because I have always been a worrier. I have always wanted to take care of everyone and make everything better, but I know it is not always possible. From now on, when I start feeling myself get extremely stressed and anxious, I am going to sit quietly for at least 5 minutes and just breath. It actually helps me to let my stress go even easier if I have the ocean sound playing in the background!

As y’all already know, I have been on the taper down amount of steroids since yesterday. Even though I am taking a lot less steroids, I still feel absolutely horrible! I guess it is because the high amount is still working its way through my system, but this is almost worse than the flare up itself. My moods are all over the place, I can not taste anything and I am not hungry. If any of you have any advice on how to combat the steroid mood swings, I am all ears! images

Thank you for reading my post today! There is so much more that I really want to say about the doctor’s office, if I am feeling any better at all and even more about meditation, but I will go more into that later! For now, I hope y’all have a nice and relaxing evening!!!  I look forward to any comments you may have and continuing to get to know you more!

Love 2

 

Always, Alyssa