Fur Babies Love!

Resting together

Well it is that time yet again. It is Sunday already and another weekend has gone by so incredibly fast. I don’t know about you, but I think the work weeks are painfully long and our weekends are unbelievably short! But no matter how fleeting the weekend was, it still gave me time to rest, read, write and spend quality time with my husband, Jon and our two beloved cats, Chloe and Sundance!

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We have had Chloe for 13 years wonderful years now. She has to be the most loving, loyal and sweetest cat ever! She is also astoundingly smart. She seems to always know exactly when and where I am having pain. For instances, when I am struggling with one of my ever so frequent headaches, Chloe will come lay on my pillow near my head. Or when my legs are causing me so much discomfort that I start thinking there is nothing that will help them feel better, Chloe will come and lay on my legs. She doesn’t just lay anywhere on my legs but will literally lay on the area that hurts the most. Our kind heart baby girl is trying to alleviate my pain with her soothing purr. With all her sweetness, she without a doubt has her other side that doesn’t put up with anything she doesn’t like. She can go from being loving to hateful in less than 2 seconds, especially if you touch her back feet. We think that she must be ticklish. Her facial expressions are pretty amusing!

Sundance 2

We then also have a younger fur baby, Sundance! He is about 5 years old. When we took him in, we did not know anything about his medical history because his previous owner passed away. After a couple of weeks, we found out that he had asthma, so we have to give him medicine daily to control that. Even if we had known this when we brought him home, it wouldn’t have changed our minds. He is so sweet, full of joy and laughter! Oh and he is a true ladies man! It is hilarious because he follows me around everywhere I go and if another female comes to our house, he will follow her as well.

It was a slow start for Chloe and Sundance to build a loving relationship. They have become great friends over the year and a half or so Sundance has lived with us. We always find them laying close to each other sleeping. Of course they have their little spats when Chloe decides to smack him a few times for no reason at all. But Sundance is always a perfect gentlemen and never hits back, he just rolls over to surrenders to the attack!

It is a wonderful feeling to be greeted at the door after a long day at work by two beautiful cats. They are both always so excited to see us when we get home and have a look of complete happiness on their faces. 

Chloe and Sundance offer both my husband and I unconditional and non judgmental love. They don’t care if I come tired and temporarily grouchy, they just want to be petted and loved on. They are very therapeutic and do a great job relaxing me. Watching them play or follow each other around is so amusing.

I hope you enjoyed this post! Again please share this site with anyone you know that has been been living with MS for years or has been newly diagnosed. Or please share with someone that might need some extra encouragement and inspiration!

122311342.1 (1)Take Care, Alyssa

 

 

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DISEASE MANAGEMENT: Essential oils to relieve pain

Fantastic Information I read from a fellow blogger! This is excellent information and definitely seems like it is worth a try!!!! The website for this products is https://essentialoilexperts.com/essential-oils-for-pain/

The Chronic Illness Warriors

DISEASE MANAGEMENT: Essential oils to relieve pain

Essential oils can be a huge help in pain relief. Many of us don’t want to rely on pills for pain management, and little other help is available, save a few salves and other topical applicants. You’ll notice many of the same essential oils are used to mitigate pain. I buy these in the bigger sizes, usually 4oz. Let’s begin!

There are three ways to use essential oils. The first is topical, whether diluted with a carrier oil or not (depending on the oil), applied directly to the affected area. The second, aromatic, consists of putting a couple of drops of the oil(s) in water in a diffuser. The third, which is probably the most difficult, is internal. You can buy empty veggie caps and fill them with a combination of carrier oils and essential oils. Most of these I would recommend applying…

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MS Meds: So many difficult decisions…

f505582bc2e45648307fd6a35837f4b0--multiple-sclerosis-awareness-flip-flopToday, I want to start by thanking my family, friends and fellow bloggers for reading my posts and following my site. I truly appreciate all the support while starting this new adventure in my life.  While my goal is to post positive and inspiring entries, I do also plan to over time, share my continued fight with Multiple Sclerosis. Granted, this is a daily battle of ups and downs but I never plan to allow this disease to defeat me! This entry is very personal, heartfelt and a little difficult to share. Please let me also tell you I am not a Physician nor do I do anything with the medical field, all the information I share is only from my personal experiences. 

There are already so many different types of medications that are available to slow down the progression of MS. These medications now do vary from subcutaneous injection to intramuscular injection to infusions to an oral pill form. It can definitely be a very frustrating and overwhelming process trying to find the disease modifying treatment that works best for you. Each individual has a different body chemistry, different tolerance levels and different challenges all together, so it almost seems like a trial and error situation with medicine. Im in the fight of my life

I will be honest to say, I wasn’t the best patient when I was first diagnosed going on 16 years ago. But, I was so young, stubborn (which I still am that), scared of what my future held and in complete denial. I didn’t want to have to inject myself with a needle at all. However, my doctor at that time, who I did have trust and have faith in his abilities, wanted me to try Rebif. Rebif is a subcutaneous injection to be administered three times a week. I was on Rebif for several years but I always complained that after doing the injection I felt like I had the flu, plus the medication itself burned like fire while going in. My doctor did suggest that I try “pre-medicating” with things like Advil to counter the symptoms I was experiencing, which I did follow his instructions. But in the end, I started missing a lot of doses, so my doctor suggested we try something different that may not have “as many” side effects.    

I went along with my doctor’s advice and switched to Copaxone. Copaxone is again another subcutaneous injection to be administered three times a week. I know you are probably wondering why in the world I would switch to another injection medication but I did this because my options were very limited at that time. I ended up having issues with this one as well. See, I told you I was a difficult patient! For starters, it was very obvious that I just was horrible at giving myself a shot but Copaxone also gave me bruises at each of the injection sites. I bruise easily on a good day and bruises take forever to heal for me.  I told my doctor that I continued to run out of injection sites because they all had huge bruises on or near them so I was skipping doses. Needless to say, my doctor was becoming concerned because he wanted me to take something to slow the progression down, so again he suggested trying something different where I didn’t have to inject myself.

At the time of all of this, there had not been any oral medications available yet so he suggested I try Tysabri. Tysabri is a monthly infusion that requires going to a specialty clinic so nurses are able to monitor you while the medication is administered through an IV. I thought this was going to be great because I was still getting the medicine that was needed but I didn’t have to stick myself with a needle! But again, I didn’t tolerate this medicine well as it made me very sick for several days after the infusion. I only remained on Tysabri for two months when my doctor agreed that this was not a good option for me. It is pretty clear that I do not tolerate medication well.

Finally, at this time oral medications were being released. Again, trusting my Specialists expertise on this subject, I started Gilenya. Honestly after sharing possible side effects with my family, they were concerned but I decided to try this anyways. Gilenya is an oral medication that is “normally” taken once daily. Now there are several things to do prior to starting Gilenya, like getting blood work, getting an MRI done and doing an EKG to test your heart function.  The first dose of this medicine must be taken at the doctor’s office so you can be monitored for any complications for six hours. I was also informed that protocol for Gilenya stated you could only be on this medicine for two years then would have to come off of it for a short time, I guess this is to give your body a break from the strong medicine. This was all six years ago and now protocols continue to change!

During my first blood test a few months after starting the Gilenya it appeared that my white blood cell count had dropped to a dangerously low-level. I was very nervous because I was getting sick a lot and was planning my wedding! Instead of just taking me off of this medicine my doctor suggested that I only take it four times a week, which I did. After several months, my white blood cell count became as normal as it can be while taking Gilenya. Technically, they want the white blood cell count to be low but there is a limit they allow. I am currently ordered to take Gilenya five times a week.  

As you can tell I have tried numerous medications to help slow down the progression of this disease. To say the least it has been extremely discouraging and frustrating at times but I refuse to give up hope! Considering initially the protocol for Gilenya was only two years and everything seems to have changed to a case by case basis, I might be getting a little concerned. Over the six years I have been on the Gilenya, I have noticed several changes and issues that are actually listed on the Gilenya website as potential side effects. I have voiced my concerns with my Specialist that it might be time to try something different with the hope that my additional issues will cease to exist but I am not sure what to switch to. The options I was given do not seem like good options as side effects are extremely dangerous.   Believe     Please leave a comment or send me a message as to what medicines you have tried and what has worked and what hasn’t. I sincerely appreciate your opinions and suggestions especially considering right now I am not sure what to do…… 

For anyone reading this that is not following my blog already, please follow this as I am trying to build my site so I have additional abilities to reach people and hopefully help them and learn from their experiences. I want to be able to make a positive difference with the struggles people are going through. I will continue to try to make an entry every other day with updates as to how I am doing, different things I have experienced, motivational topics and so much more….

Thank you for visiting and thank you for your support!

Staying positive and strong, AlyssaHope for cure

Music Is My Therapy

 

 

butterfly noteYa’ll probably already know that I want to keep all of my posts positive and uplifting to hopefully be an inspiration to those going through difficult times.  Whether you are dealing with the struggles that living with MS can bring or another difficult time, I want you to be able to visit my site and find encouragement. But allow me to be completely honest with you as well, I am in pain everyday all day. For those of you that have MS or pain that is caused from something else, you can really understand where I am coming from. The pain I deal with alone can be very frustrating but then add that with driving home from work with my feet feeling like they are on fire and it brings about an entirely different frustration.  

To combat my frustrations of “driving” in stand still traffic with my feet on fire, I just turn up the music! Music has this magical way of relaxing me. It helps get my mind off of my burning feet and the horrible 5:00 traffic. I also have my earbuds in all day long at work. This not only helps me to concentrate better which makes my work work efficient but it also eliminates almost all of the annoying sounds around me. I am very sensitive to the smallest sounds, like gum chewing, smacking and popping. I know it sounds silly but this drives me crazy!

There are so many songs that I find inspiring but there is one that I really want to share with you today. This song gives me so much strength, hope and determination in battling MS. The artist is David Osmond, son of Alan Osmond, who was the founder of the 1970’s group, The Osmonds. David was diagnosed with Relapsing Remitting Multiple Sclerosis at the age of 26. He already had some knowledge of the disease because his father, Alan, has Primary Progressive Multiple Sclerosis. David wrote “I Can Do This” to help people cope with this disease. I have included a link so you can listen to this absolutely amazing song! https://www.youtube.com/watch?v=2l1lTkKsaDs

Do you have any music that inspires you? Are there any songs that reach you on so many levels? As I have already said, music is my therapy in life and I am always interested to listen to new music. Please leave a comment to share with me any music that you find inspiring or just a song that when you hear it automatically relaxes you and makes you smile! I always enjoy your comments and feedback. 

Thank you for visiting my blog and reading this post! I appreciate all of your suggestions for future posts and support. Please share this site with anyone you know that has battled MS for years or was newly diagnosed or anyone that might need a little encouraging words!

4ef436d37fc2ec3a193105d668818c71--treble-clef-heart-tattoo-templatesTake Care, Alyssa

What brings you joy?

peace and cuare What is it that brings joy to your life? What helps you relax and escape the same day to day activities, even just for a short amount of time? Do you have hobbies that make all the horrendous things that go on in this world disappear? With all of the negative and completely mind blowing things we see every time we turn the television on, it is important to find something that will allow us to break free from reality for a little while.

Of course society makes everything all about spending a lot of money. But there is still so much you can do that can be both enjoyable and relaxing that either doesn’t require any money at all or very little. (As you can see, I am a very caution spender!) 

For instance, writing costs absolutely no money at all and can be a fantastic outlet of emotions. You can share what you write with others or you can have a personal journal where you write all your feelings down just to get them off your chest. It is amazing how much a pen and piece of paper can relieve so much stress and pain. It is only an added bonus if what you write can help someone else that is dealing with similar issues as you.

Sitting down with a good book can be very inexpensive and extremely relaxing. With all the negative that continues to occur on a daily basis in not just our country but all over the world, being able to read a fiction book can help escape realities of life. It is nice to come out of the craziness of the world and step into someone else’s creative imagination for a little while!

Something else that I find so relaxing is getting a manicure and pedicure. Yes, I know getting a manicure and pedicure can be somewhat expensive but, when you walk out of the nail salon you feel so incredible. Considering I experience a lot of leg and feet pain from the MS, this is just so therapeutic for me. For the amount of pain in my legs and feet that I deal with on a daily basis, the amount I will spend on a pedicure is worth it. Thankfully my husband fully agrees with that and is supportive when I tell him that is what I want to do on a Saturday or Sunday afternoon. No, that doesn’t mean he goes with me to get one too but he does encourage me to do so and to enjoy it!

Living with MS can be very challenging at times. Sometimes it is a day to day battle of emotions. Then some days are an hour to hour battle of emotions. But instead of dwelling on any pain I am experiencing, I try to occupy my mind with something else. If I sit around and allow that pain to consume my life I am afraid I am going to miss out on the good things that life has to offer, like snowboarding in the winter or going to have lazy days at the beach in the summer! I of course do snowboard in moderation so that I do not overexert myself and have my lazy days at the beach at a minimum amount of time to not get overheated. Even those that do not have MS but are faced with other struggles, maybe trying to focus some energy on something enjoyable will give way to the answers that are being searched for. Or maybe giving the mind a break from the obstacles that are being faced will make the situation easier to handle. 

Thank you for visiting my blog and taking the time to read my post! Just like my previous post this wasn’t strictly for those that suffer from MS but can be very helpful for everyone! Please feel free to make comments if this post was helpful to you and please feel free to contact me if there are any suggestions you have that you would like to see on future posts. I love doing research and sharing information that I find. Also, please share this site with anyone you know that has either been battling MS for years or was newly diagnosed or anyone that has any other diseases that cures haven’t been discovered yet or even anyone that needs some words of encouragement, after all that is what my goal is to help others through hard times! I really do appreciate all of your support!

Hope for cureTake Care, Alyssa

Importance of a Strong Support System

fight ms butterflyEveryone in this world has something they are going through in their life. Whether you are dealing with a break-up, starting a new relationship, loss of a job, loss of a loved one, financial struggles or getting diagnosed with an illness that has no cure,yet. All of these troubles are difficult to get through if you do not have someone there to help you see that there is hope. Being able to talk to someone you trust about something that is troubling you will not only reduce extra stress but will also help you process what you are being faced with.

Like everyone else, I have bad days. There are times I have come home from working a long 8+ hour day so exhausted and in so much pain that I am just about in tears. I am almost always home from work before my husband, Jon, so I will sit on the couch with our ever so loving cats and vent to them and even cry. As soon as Jon walks in the door he can always tell that something is wrong even if I am not in tears. He will automatically come over to give me a hug and so kindly ask what is wrong. I am able to share with him how frustrated I am about how much my back and legs hurt and that my right arm from my shoulder to my finger tips hurt from typing all day. After listening to all my complaints and trying to help me remember that the pain will get better but I do need to rest in order to get better. I am so thankful that Jon is so supportive, understanding and patient with me during my negative moments. Anyone that knows me, especially him, knows that I am too stubborn for my own good and I am horrible about just sitting back to relax. So he does everything in his power to take care of, listen to me and make sure that I am as comfortable as I can get. 

No matter what we are dealing with in life it is impossible to remain positive all of the time. We all have our bad days. We might feel helpless to a specific situation or we might feel like things will never change or we might even start wondering why me, what did I do so wrong to deserve this much pain and frustration. It is okay to feel like that and it doesn’t make you weak, it just makes you human. My Grandfather, who was a very strong and wonderful man, use to tell me “No matter what you are going through in life, there is always someone else that is going through something worse.” To me, those are some very powerful words to live by. I have always kept that in my mind when I start feeling sorry for myself when I am struggling with pain issues. It is normal to get upset about something but is so important to keep your head held high and remember tomorrow is another day and things will get better!

Thank you for returning to visit by blog. I hope that this post was helpful to everyone. This blog is meant to help keep spirits lifted and even be a resource if you need someone to connect with. Please share this site with anyone you know that is battling an incurable illness or someone who needs help with struggles.  

Hope for cureBest Wishes and thank you for your support,

             Alyssa

 

 

Crazy Summer Weather

fight ms butterflyWelcome back to my blog! 

I can not speak for everyone but when I go outside and the temperature is 93 degrees with a humidity level of 60%, I can barely get a breath in. A short from my office door to my car feels almost like I have run a marathon. Then getting in the car that has been sitting in the sun all day long feels like a sauna. All that together makes me feel very faint. What I have been trying to do when I get into the hot car is, roll the windows down and turn the a/c on high. I do not try to drive until the car has cooled down because we all know that when the a/c first comes on it blows more hot air which of course makes everything that much worse! After the car is cooler and there aren’t any signs of dizziness it is safe to drive home! I have heard of cooling vests and cooling towels that can be used during this time of year but I have not tried any of them yet. I will share that information in the future after I do try these helpful items. 

Of course I do understand that humidity affects everyone in different ways. But I was curious if humidity causes additional issues for those battling MS. After reading an article on Web MD’s website I have found that it does. According to Web MD, heat or high humidity can make people with Multiple Sclerosis experience a temporary worsening of their symptoms. This occurs because heat causes nerves, whose myelin covering has been destroyed from MS, to conduct electrical signals even less efficiently. For anyone that is interested in reading more about this the full article can be found at, www.webmd.com/multiple-sclerosis/guide/impact-temperature.  Also, for anyone that is unsure of what myelin is, it is a fatty substance that surrounds the axon (long threadlike part of a nerve cell along which impulses are conducted from the cell body to other cells) of nerve cells, forming an electrically insulating layer. Myelin is really for the proper functioning of the nervous system. 

When the temperatures and humidity are as high as they have been it seems like there is no escaping it. This insanely hot weather and humidity has actually been causing me a lot of breathing problems and pain issues even when I am inside with the air conditioner. Until summer is over the best thing to do is to stay inside and try to relax!

Thank you for visiting my blog and reading some information that I have found very interesting. If you know someone that has been battling MS for a long time or someone that has been recently diagnosed, please share this site with them. My main goal is to help those suffering and learn from their experiences as well. 

Best Wishes, Alyssa

Hope for cure