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

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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

Almost done!!

Happy Sunday 1Today, is officially day 5 of the insanely high amount of steroids my doctor had me on! I am so glad that tomorrow I will be just doing the taper down amount for only a few days, but at least I will not have to push through taking 20 steroids a day! Steroids have to be the absolute worst tasting thing in this entire world! I have gone through 5 very long days of not being able to taste a single thing and not wanting to eat because of it. I am really hoping that I will start gaining taste buds back soon!

During this course of steroids, I felt like my emotions were literally all over the place! I could go from being so angry and irritated, then 3 seconds later be in tears about absolutely nothing. I kind of feel bad for my husband, the poor man never knew what  mood I was going to be in. But he did try to distract me with other things, like watching interesting videos on YouTube. I am not going to lie, I knew he was trying to help but all that did was make me angry because I did not want to not have to focus on anything. My neighbor even tried distracting me by bring over a 6 week old kitten, that completely stole my heart. 

Now that day 5 of high steroids is over, I of course was hoping to see an amazing change in how I am feeling. But, I can not lie, I went to bed around 2 am and I woke up at 6 am in a terrible amount of pain. That was a little frustrating, but I do know steroids do have to run their course and I will be back to my normal self soon! I do still have to go through Butterfly Patientthe taper down, which is of course a lot less but it is still for about another week. I really do not want to take anymore. I told my husband yesterday that I have been taking more medicine over the past week that actually eating and drinking. I know that was not a good decision on my part, but I just could not taste anything and I just was not hungry. Granted, it has been a difficult few weeks but I still have some hope that life is going to improve and I will not live the rest of my life in pain! I have had to force myself to learn patience during this time, which I have never been good at. 

Y’all can probably tell that I love butterflies! I believe that butterflies come around to offer some kind of support when we are struggling. I always believed that butterflies Butterfly-lovewere a sign from someone who has left this world and they are flying around to let you know they are with you still. This actually came into my mind after my Grandfather passed away. I remember sitting outside for lunch and this same butterfly continued to fly around me. It gave my heart comfort to think that butterfly was my Grandfather that knew I was having a hard time with losing him. It may sound crazy, but anytime I am having a hard time in life a butterfly seems to appear in front of me. 

I am supposed to be returning back to work on Tuesday. I am a little nervous about this because I still do not feel 100% and might still have some mood issues then. I know it is a few days away, so hopefully things will improve before then. I know that my job is understanding, so if I start the day and can not make it they will understand. Steroids Butterfly hopenormally give people so much energy, but I just feel completely worn out all the time. But again, I am going to remain hopeful that things are going to get better and I will actually be able to work a full day without getting too fatigued. If you can just hold onto hope, you can really accomplish anything you want!

I also recently made the decision to start researching new MS Specialists. Sadly, there are not many in the area in which I live, so I am looking at other cities nearby. As you probably already know, I am not all that comfortable with the Specialist I am currently seeing. So instead of just settling on a doctor that I may not trust completely, I am doing something about it. I already have a short list of doctors that I am interested in. I have been able to read about them and it seems like they have a passion to help and actually listen to the patient. I will start making phone calls on Monday and just go from there. In order to make a change in your life, you have to take the initiative to do so.

I hope y’all had a great weekend! Thank you so much for continuing to read my posts and making comments on them as well. All the support and communication with you has been so helpful to me! I really enjoy being able to get out what I am dealing with and I hope that I have been able to help others dealing with something similar. Remember, never hesitate to leave a comment and I will respond as quickly as I can. You are also very welcomed to email me anytime and I will respond to you as well! Enjoy the rest of your Sunday and try to stay positive through anything life throws your way!

Love 2

 

Always, Alyssa

Happy Friday!

Happy Friday 13Good morning Y’all! I know it is Friday the 13th and some people do not like that day, but I normally have good luck on the 13th. It really is just another day, so just try to enjoy it as much as you can!!!

Today is day 3 of my high dose of steroids. Thank goodness my doctor finally started seeing my point, and has called in a taper the amount! It only makes sense to me, that going from a very high dose of steroids to taper off, instead of going from 1000 mgs to nothing at all. It is just healthier on the body and mind! For anyone that has been on a super high dose of oral steroids, I am sure your doctor had you taper. Please tell me if I am wrong! Now granted, my emotions are all over the place and I have NO appetite, but I am hoping that the steroids are helping my inflammation. Something good has to come from how miserable I have been taking this medication! I do sometimes wonder if the treatments are worse than the actual issues of a flare up!

On the bright side, I finally got a full good nights sleep last night! Besides waking up just a couple of times, I slept in late for once in my life! Hopefully my sleep will help both my pain and attitude! Thankfully, I am still out of work right now until at least Tuesday, so I have time to recover from this awful flare up. Happy Friday

I hope y’all have a good Friday and a wonderful weekend. I already said earlier that I have to do posts slowly due to my lack of concentration, but I want to continue making posts because writing really helps me to process things better and get feelings out! Everyone of you has helped me so much by your wonderful comments and advice! I hope y’all are feeling well today and resting when it is necessary! I will keep you informed on how the healing is going for me! Let’s just hope it gets better sooner than later!!

Love 2

Always, Alyssa