Painful Rain Day

rainy daysHappy Friday Eve Y’all! I hope you all had a good day today. Sometimes I really hate being right. Today with it raining all day long my back and leg pain has been a lot higher. Of course tomorrow we are looking at another day of rain. But I guess there is no use dwelling on what Mother Nature has planned for us, we just have to accept it and keeping moving forward. As a lot of you understand, it is just frustrating having your pain increased every time it rains. With my back and legs both hurting equally as bad it is just hard to get up and move around comfortably. Hopefully even though it is going to be another day of rain tomorrow my pain won’t be as high. I really hate complaining about it raining here for a couple of days, when the poor people in Texas are dealing with so much worse. I sincerely hope they get some relief soon.

rainI am still looking forward to having a three-day weekend with the weather actually looking positive. I am so excited to have three days to spend resting, having quality time with my husband and our sweet cats and enjoying time away from work! I am hoping we get to go to my favorite restaurant where we get to sit outside to enjoy our lunch. Do you have any exciting plans for the long weekend? 

As always thank you for continuing to read my posts! This experience has been so wonderful for me. I am extremely passionate about writing so this has given me that opportunity. Plus, I really love being able to help others and bring some positivity to their lives. My goal of this blog is to be able to help others that are dealing with similar issues or just need someone who can help them cope with a difficulty in life. 

Hope for cure

Always, Alyssa

We are half way there!

WednesdayHappy Wednesday Y’all! I don’t know about you but it has been a long week! Thankfully, once we make it through Friday, we have a three-day weekend! I hope you have some great plans for the long weekend. 

hump-day-weekend-not-far-awayI shared with you yesterday that I have officially started Yoga. It was actually a great experience. I am going to do this three times a week, so tomorrow when I do this my husband is going to assist me. He is going to help me make sure that I am doing things the proper way. It will be nice to have someone to watch the videos with me, then watch how I do it and help me to make sure that things are going the correct way.  While he hasn’t ever done Yoga he was trained in his younger days the proper form and technique in weight training so he may be able to apply that to Yoga. He will be kind of like my coach. I am so thankful to always have his support and the willingness to help me.

I did share with you earlier this week that the pain that I have been having in my right shoulder through my fingertips has improved but the pain in my legs and back has not. For some reason today has been a pretty bad day with my pain level. My guess it is the weather. Although the temperature was still lower than it has been it has been on the verge of rain. Tomorrow and Friday are supposed to be rainy all day, which is never good when you deal with pain. Not to be negative by all means but my guess is tomorrow and Friday my pain will remain relatively high. Luckily the weather for the three-day weekend is looking like lower temperatures with no rain so I should feel pretty good for that! I know many of you experience pain so you already know what it feels like when it rains. Just out of curiosity, what do you do to alleviate the pain when the weather isn’t very friendly? hope 2

I always appreciate all of your comments and I respond to all of them as soon as I can. I love having the opportunity to communicate with all of you. I know many of you already know, I started this blog about a month and a half ago and so far it has been a fantastic experience. I have been able to connect with so many incredible people that have offer great advice and support. I want to personally thank all of you for continuing to read my posts and make comments. I hope the rest of your week goes great!

Hope for cureAlways, Alyssa

First time trying Yoga

yogaHappy Tuesday Y’all! I have been thinking about doing Yoga for a long time but never knew where to start. Well after receiving several suggestions from my fellow bloggers and a slight kick in the butt from another blogger, she knows who she is, I did my first 20 minutes today. I first watch two videos by Rodney Lee then did them along with him. It is definitely going to take some getting use to, but I think this was a step in the right direction. 

yoga catTo start with I am planning to do Yoga three times a week. I am going to try some of Rodney Lee’s other videos. Considering I do have a lot of back and leg pain I think it is smart to start off slowly so I don’t burn myself out or cause more pain, but I am going to continue with this journey. I really need to get my body used to doing these moves as I think it might have been a shock to my system. I am fairly active in the winter months as I am a decent snowboarder. I am by no means a pro but I can hold my own out there!

yoga cat 2I want to thank all of you that gave me the great suggestions and those who gave me the push I needed to actually stop thinking about it and just do it! I am sure it will get easier each time I do my exercises. If anyone has watched any other Yoga YouTube videos that you found to be a good experience, please let me know. Again, thank you all for all your great comments! I hope the rest of your week is great!

 

Always, AlyssaHope for cure

We made it through Monday!

cropped-believeI hope everyone had a good start to the week! I know some of you in the UK had the day off from work, so I hope you enjoyed your time! As promised, I am going into this week with a positive mind that my pain will start to ease up more and more each day. I can say that my headache remained under control today. The pain I have been dealing with in my right shoulder through my fingertips is lingering but has improved some. Unfortunately, my legs and back still hurt pretty bad but I really hope they will start to improve as the days go on.

I still really want to give Yoga a chance as I have heard it has helped a lot of people. There are so many Yoga videos on YouTube so I don’t even know which ones to try. Of course I know it is best to start with something for beginners but still haven’t a clue what is best. Does anyone have any suggestions?

It is looking like the heat wave we have been dealing with is going to give us some relief! Instead of being close to 100 degrees it is going to be in the 80’s. I never thought I would say this, but I am so ready for summer to be over! Until next time, y’all have a great week!

Hope for cure

 

Always, Alyssa

Never Give Up Hope!

hope 2I hope everyone has had a great weekend and is as ready as you can be for the work week to start! I always say that the weekends are too short and this one really has been. On top of all the other pain issues I have had for a few weeks now, I have had a terrible headache since Friday! Honestly, this is the first bad headache I have had since I stopped taking Gilenya. Thank goodness it is finally getting better today!!

Im in the fight of my life16 years ago when I was diagnosed with Multiple Sclerosis I said that I would never let this disease control my life. I promised myself to not let this disease defeat me and I was going to be stronger than it! Over the past few weeks, while dealing with the Pseudo Relapse, I haven’t kept my word to myself. I have been frustrated and a little down about it because I was so tired of dealing with the increased pain. Well, it is the start of a new week and I am going to be true to my word and be positive about things again. It takes way more energy to be negative than it does to be positive. I know that my pain is going to ease up and I can get back to normal. For the past few weeks all the negativity I was feeling didn’t help me get well again. In fact, I always believed that if you think negative then all you are going to experience is negative. I am going into this new week with the thoughts that I am going to start feeling better! My pain is going to ease up and I am going to start taking breaks when I know I need to! I am also going to start not being so hard on myself. 

My goal of this blog has been to be able to help and inspire others to stay strong. I had a goal that by the end of the month I wanted to have 100 followers and could possibly have a good impact on them. I am so proud to say that as of today, I have reached my goal and then some. I truly hope that my posts will help, educate, inspire and have a positive impact on everyone who reads my posts. Thank you so much for reading my blog! Please if you have any comments I really love reading them. I do always respond to all your comments because I truly love being able to connect with so many wonderful people. 

I hope you have a great week!!!

Hope for cureAlways, Alyssa

Still in pain and frustrated

frustrationFor those of you that have already been following my blog, you know that I have been dealing with what they say is a “Pseudo Relapse” for going on three weeks now. I have been suffering with excessive and continued pain in my back, legs and right shoulder through my finger tips during this time. It is an understatement to say that I am getting frustrated and discouraged about this issue. I am doing everything the doctor told me to do but there hasn’t been any success in ending my pain. I am even trying a new medicine that is supposed to help with neuropathy issues but I honestly haven’t really noticed much of a change. Now I know she said that it would probably take a few weeks for this medication to really start working but I guess I just want results faster. I might not be the most patient person in the world!

For those of you that are following my blog have you ever experienced a Pseudo Relapse? Like I said before, I have had MS for 16 years and I just heard of this a few weeks ago. I just want to know if anyone has any idea how long this typically lasts for. I know that rest, limiting stress and staying hydrated in this insanely hot weather are important ways to feel better, but I have been doing all of this and still feel pretty bad. 

I started this site a little over a month ago and it has been a great experience. So many of you have commented and given some really great advice. I can’t even begin to tell you how much you have all helped me. I am learning so much for each of you. I am so thankful for my husband and all my family supporting me through this exciting experience of starting my blog. I also appreciate their continued support as I struggle to get back to my normal self again without pain.

Again, thank you for all of your comments. I always respond because I feel that being able to connect with you is so important. I hope the rest of your week goes well!

Hope for cureAlways, Alyssa

We made it through Monday!

hope 2I hope you all had a good Monday! Sadly, it was a bit difficult for me. I am still struggling pretty bad with my hands hurting, so it is hard to type and write. It is so easy to get discouraged when it seems like there isn’t an end to the pain, but I am a fighter. I push through much of the pain pretty hard!

I hope everyone was able to see the Solar Eclipse. I watched it with my husband, which was a magical experience for us to share together. We didn’t stand outside to do this because I can’t handle being in the heat long or really at all. We were able to sit in his SUV with the sunroof open and see everything perfect. Words can’t even explain how amazing this was for us. 

I hope you have a good day tomorrow! We are getting to Friday slowly but it will be here soon!! I will try to keep you all updated on how my pain is. Hopefully I will be able to share with you soon that at least my hands are better and in time tell you all my pains have eased down and I can be normal again. If anyone has any advice, I am always up for your comments. Every time you make a comment, it helps me through these difficult times. Take care and thank you for all your support!

Hope for cureAlways, Alyssa

Are you ready for Monday?

34091-Ready-For-Monday

I hope everyone had a great weekend! I can’t even believe tomorrow is already the start of another long work week! I do hope y’all enjoyed the weekend as much as possible.

My last post was relatively long, but I thought it was important information to put out there. As I said, I am still battling the effects of the pseudo relapse but am trying hard to not let it get me down. I am not always 100% successful with this but I do try! I have been experiencing a lot of pain in my hands since Friday. It started just in my left hand on my way into work but then progressed and started affecting my right hand as well. Now, I have been dealing with issues with my right shoulder through my fingertips for a while now but the left hand was new. I will be honest with you, I did not rest like I should have over the weekend, but you know how it is when things need to get done you just do them. The things I did for relaxation though were, write and I got my nails done on Saturday. Getting my nails done is always a great experience! I absolutely love the lady that does my nails. I will keep you posted as to when my hands start feeling better, as I do know in my heart they will eventually!

Not ready for MondayI just want to put these questions out there again! Has anyone reading this been on Tecfidera and if so are you still on it and what has your experience been? If you are not on it any longer what made you switch? I will be starting this in just a few weeks, so I am of course just a little curious. Also, has anyone reading this been on Gileyna and switched to another medication, if so why did you change your medication and what did you switch to?

I hope you have a great week! Hopefully you are in a place where you will be able to see the Solar Eclipse. I guess that is something that might make Monday a little better. I hope you have a fantastic week!!

Hope for cure

 

Always, Alyssa

 

Me Without Gilenya!

hope 2It has been a few days since I have posted anything. My body has been adjusting to the changes in my medicine. All in all things are going pretty well. I am still dealing with the pseudo relapse issues but I am remaining positive that everything will ease up soon!

First let me start by saying that I do not want anything in this post to influence anyone’s views of any medication. Each person tolerates everything from over the counter to prescription medication in different ways. The following has just my personal experience. 

After several failed attempts with finding a disease modifying medication (medicine that is designed to slow the progression the disease), oral medications were finally being released. Before I was able to start Gilenya, six years ago, I was required to do an EKG to make sure my heart was healthy enough to handle the Gilenya. I was also required to do blood tests as your white blood cell count is monitored carefully while on this medicine. My doctor explained to me that protocol was to only be on this medicine for two years continuously with no break, then come off of it for six months to give my body a break. I also had to have my blood work done every six months to ensure my white blood cell count did not drop too low. White blood count is supposed to be low while taking Gilenya but at that time could not be below 300. After two years, protocol increased the time limit to four years. Now my new doctor has informed me recently that it is safe to be on Gilenya indefinitely. cropped-believe

Please allow me to share my experience with Gilenya. Before starting Gilenya, I was dealing with leg and feet pain with the occasional “MS Hug”. I never dealt with severe back pain, sinus issues year round, elevated blood pressure all the time and trouble taking in a full deep breath. I went on Gilenya’s website just to see if there was any time limit to taking this medicine. Instead I discovered that everything I had been dealing with were possible side effects to the medicine. Of course when I voiced my concerns my first time at my new doctor’s office, my thoughts were pretty much dismissed. I am only seeing this new doctor because my other two doctors that knew my situation better have retired. During this appointment I wasn’t even supposed to meet the doctor just one of her Nurse Practitioners because the doctor had a full schedule. However, when I became adamant that the Gilenya was the cause of my issues the Nurse Practitioner brought the doctor in to meet me, basically she just needed reinforcements. They both said that side effects typically occur within the first few months, so it wasn’t likely the Gilenya that was causing my issues. It wasn’t until a few hours after my appointment when my mind was clear, I remembered that all the issues I shared with them did start shortly after I started the Gilenya. 

I went into my appointment knowing that I wanted to change my medicine and had an idea of what I wanted to switch to. I knew I wanted to stay on an oral medication so I did my own research prior to my appointment. I clearly said that I wanted to switch to Tecfidera but they told me it wasn’t strong enough for me. That alone didn’t make any sense to me because I am not even able to take the normal dose of Gilenya, which is daily, because it makes my white blood cell count drop too low. Now I completely understand doctors have a medical degree and  know what has been researched on slowing the progression of the disease but I know my body better than they do. I know my tolerance and comfort level with certain types of medication. So, even after I said that I wanted to try Tecfidera and do not want to do any infusion type therapy, the doctor was still pushing me more towards the new infusion medicine and deterring me from Tecfidera. Needless to say I left my appointment without making a final decision and way more confused than I was beforehand. 122311342.1 (1)

After about a month and a half of getting myself stressed and weighing all my options, I decided to discontinue taking the Gileyna. It has been two weeks since I stopped taking Gileyna and I have noticed some changes. The weather has not changed at all but my sinus issues have improved. I do not need to take sinus medicine every 4-6 hours. Plus, I am now able to take a full deep breath in without any struggle. I am still battling the back pain but I do hope that will end as well or at least ease up some. I suppose my back pain could be a result of lesions on my spinal cord but I prefer to have  a more positive outlook and think that pain will end!

Moving forward, the first week of September I will be starting Tecfidera. Considering I have done a lot of research, I know that if for some reason this medicine does not work I have other options. I am able to go back on Gileyna if I choose that route. But at this point, I am going to have an open mind with my new treatment plan!

As always I like to end my post with a few questions. Your comments are appreciated and very helpful. Is there anyone reading this that is currently on Tecfidera or has taken it in the past? Did you experience any side effects and if so what were they? Has anyone switched from Gileyna to Tecfidera and if so what were your reasons? Thank you so much for reading this and I hope you have a great weekend!

Hope for cureAlways, Alyssa

Update on Medication!

hope 1I hope y’all had a good Monday!  Like most people, I am not a Monday person. I think it must be the longest day of the entire week! But on a positive note I did get some good news today about the new medication I am going to be starting. I am very surprised it didn’t take longer but insurance has approved the Tecfidera. Even better than that I talked to someone with financial assistance with the Biogen company and my co-pay went from $100 to $0! Now I can’t start Tecfidera until early September after my next blood test to make sure my blood count is normal but so far, things are moving in the right direction. I only hope this medication will be a success! 

Im in the fight of my lifeOn a less positive note after working 8 1/2 hours today my pain has become a little more intense in my right shoulder through my fingertips. Plus. I was beyond exhausted all day and couldn’t wait for  my day to be over! But I guess my system will get use to the new treatment plan and things will level out over time. I do believe there is something to a positive mind will create positive things in life, so I am being very optimistic about everything! With everything that MS has thrown at me over 16 years, I still say I am never going to allow this disease to defeat me! It will get me down at times but I will stand back up and continue the fight! For all of you battling MS or any other difficult issues, stay strong and you will accomplish more than you think!

Just out of curiosity has anyone been on Tecfidera? Did you have any horrible side effects? Also, how many of you have experienced a Pseudo Relapse and my goodness how long did it last? I appreciate your continued support and really love all your feedback. I hope you have a wonderful evening!

Hope for cureAlways, Alyssa