31 Reasons

Posted on March 4, 2023 by Positively Alyssa

Most likely many of you are aware that March is Multiple Sclerosis Awareness month. There are only 31 days to raise awareness of a disease that impacts and changes the lives of those living with the disease for the rest of their lives. Although I am sure there are more, I am going to share with you 31 reasons why I detest MS. Of course, I do not mean to sound negative, but this disease is anything but pleasant or easy to deal with. Please know these reasons are not in any specific order.

1. This disease is incurable and a lifelong condition.

2. Multiple Sclerosis is unpredictable and can strike at any time without any notice.

3. Neuropathy is something that can cause issues such as pain, numbness, tingling, weakness, and a pins and needles sensation.

4. Random and frequent headaches, which no one could ever get used to.

5. Numerous appointments with different doctors.

6. The expenses of medication are higher than they should be in the United States where free healthcare is not an option.

7. Vision changes can happen to anyone but seem more common with MS.

8. Multiple Sclerosis can be hard to control considering there are no answers to the causes.

9. Never-ending fears of losing mobility.

10. Constant daily changes.

11. Back Pain, which I have lived with for years in my lower to mid back.

12. Leg pain, mostly neuropathy. This can make walking challenging.

13. Heat intolerance, which living in the south can be miserable.

14. Weight gain due to the inability to exercise much because of the pain.

15. Sleeping troubles due to waking up with pain and not being able to fall back to sleep.

16. Frustrations! You can do everything the doctors recommend, but it does not appear to make a difference.

17. Memory issues.

18. Missing the feeling of being normal.

19. Adjusting to weather changes can be challenging. Too hot creates issues, but too cold can cause me to tense and cause even more pain.

20. Dealing with doctors that do not always listen or understand. Doctors may understand the disease as much as they can, but they have no idea what it is like to live with it. Studying and reading can only do so much.

21. Understanding what creates additional issues, such as food, lack of sleep, stress, etc.

22. Worrying about the possibility of progression. This has always been a huge concern for me.

23. No answers regarding the causes of the disease.

24. With the unpredictability, one needs to always have a backup plan. This may be easy, but it is not easy explaining to friends and family.

25. Trying to stay positive without any changes in medical progress.

26. Knowing the best medication for the disease can be different for each person.

27. MS Hug. This is a painful hug that no one would ever want!

28. Dizziness

29. Flareups and steroids can weaken teeth causing them to break easily.

30. Fatigue. It is difficult to always feel tired because you are unable to get enough sleep.

31. Trying to explain to others how one can appear normal but are always in pain.

I have always known that this disease can take away my mobility and it has terrified me since I was diagnosed. Of course, I am always aware that it could be worse because my form of the disease is minor in comparison. I used to believe this disease was a punishment for something I did wrong in life, but logically know that it is not. We all have negative moments in life and trying to push past those thoughts can be challenging, but also necessary. This disease does not discriminate and can happen to anyone.

It is always important to remember that no matter what we are dealing with in life, someone else is dealing with something worse. While I do detest MS, I do know that no of us will have to endure something that we cannot handle. Whether this is true or not, it does help me to keep moving forward. Plus, I did make my late grandfather a promise that I will never all this disease to get and keep me down.

Thank you for visiting my site today. I hope you have a wonderful weekend and you are able to recuperate from last week because I know it was a long week. I hope you found what I have shared today interesting and I look forward to reading your comments. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!

Always, Alyssa

Invisible Illness

Posted on March 18, 2022 by Positively Alyssa

I have written about Multiple Sclerosis many times before and I have talked about it a lot as well, but neither of these can explain what it is like to live with it. Many people have heard Multiple Sclerosis referred to as the “invisible disease” and I supposed for the most part it is invisible. Of course, some people stumble because they struggle their balance, or they may have challenges to walk and are bound to a wheelchair or use a walker. These challenges are obviously visible because the person cannot and should not feel compelled to hide them. However, some try to out of fear of being judged. There was a time that I felt I needed to hide my illness because I know people talk and it is always about things, they know nothing about, but that is not my fault, and it is on them.

Out of all the issues Multiple Sclerosis puts on a person, many that are truly invisible issues to deal with. No one can feel the pain someone feels, which those with Multiple Sclerosis tend to face daily. I have mentioned before that I live in pain every minute of every day but try my best to hide it and not because I am afraid of what people may think. I hide the pain because nothing helps my pain ease. It does not matter if I explain how I feel or even cry about it, the pain will still be there. I am thankful that the pain I feel cannot be felt by those around me because I would not wish that on anyone, and it is not fair for anyone to experience it.

Another issue I deal with that is invisible is the neuropathy. The feeling of spiders crawling around on my legs and feet is only something I endure, and no one can see it. This is something that I feel daily and mostly it increases at night, but still there are times during the day I get experience this. Of course, my husband that is with me all the time can see it because I start getting fidgety and cannot stay still. Not that it helps but I will start rubbing my legs when we are watching TV or having lunch together. I cannot explain why I rub my legs or feet, but I supposed I am trying to make the feeling go away. My husband has even asked me if it helps or why I do it and I cannot explain it to him, I guess it is just a habit.

Stress causing my condition to deteriorate is not something anyone can see. Heck, I cannot even see it immediately, but will understand later what stress does to me. Stress can cause symptoms to worsen and potentially cause a relapse. Anyone that has Multiple Sclerosis or knows someone with it understands how bad a relapse can be and it is something that we all try to avoid. A relapse can be awful, but the actions taken to decrease the length of time one deals with them are typically by using steroids. For anyone that has been on a high dose of IV steroids, you know how terrible that can make you feel. I can admit that the steroids will make the relapse not last as long, I would prefer to not take them.

The only person that knows how exhausted I always feel is me. It is not something anyone can see, but I do see and feel it. I cannot even explain it to anyone because it does not matter how much sleep I get. I will wake up feeling like I have not slept at all and truthfully, I probably did not sleep well through the night. The pain and tingling will wake me or prevent me from falling asleep, but I still try pushing through the day like I have slept eight hours.

COVID introduced a new invisible issue to Multiple Sclerosis. Everyone had to deal with the normal things that came with COVID, but anyone that is on a medication that weakened their immune system had to be even more careful. Even after there were vaccines available, we had to determine how safe they were mixed with their medication. Being under isolation could make people feel even more isolated and nervous for what could happen if they got COVID. I know I was afraid that if I got COVID and being on Gilenya if I would survive. Anytime I left the house, I would wear a mask and be looked at like I was insane, but I do this because I refuse to gamble with my life.

I think COVID has made everyone feel like they are living under house arrest. My mother moved to Texas a few years ago and we did not see each other before she moved because of the fears of COVID. It is not that I do not want to see my mother, but I refuse to get on an airplane until COVID is gone and there are no new variants. I also do not want her getting on an airplane to come to where I live because I do not want her getting COVID or bringing it into my house. It is not easy dealing with this because she is my mother and I know she would get on a plane tomorrow, but it is not safe for either of us.

Considering March is Multiple Sclerosis Awareness Month, I thought it would be good to do a post about the invisible side of it. I understand why people would call it the invisible disease because much of it is invisible. Truthfully, I would prefer the balance issues I deal with to be invisible because I feared when I was diagnosed about being in a wheelchair and not that it is a bad thing. After all, it can happen. Although the pain is invisible, anyone that knows me can see how much I hurt.

Thank you for visiting my site today and reading what I have written. I hope this provides some clarification to the issues I deal with that are truly invisible and why I hide some of them. I am not hiding things because I am ashamed, but because it does not help. I do look forward to reading your comments because I know they will be insightful. I will respond to all comments as quickly as I can. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!

Always, Alyssa

What is an exacerbation?

Posted on March 5, 2020 by Positively Alyssa

What is an exacerbation?

An exacerbation of Multiple Sclerosis can also be referred to as an attack, a relapse or an episode. All the terms all mean the same thing which is the occurrence of new symptoms or worsening of an old symptom. These range from mild to severe enough to interfere with a person’s ability to function in daily life. The exacerbation will follow the following criteria:

Previous symptoms become more severe or new symptoms have started to show.
Symptoms last longer than 24 hours, commonly lasting days or weeks.
A total of 30 days has passed since the start of the previous relapse.
Healthcare provider has ruled out all other possible causes for an exacerbation, including infection, heat, and stress.

It is critical to know when this is happening because early treatment can help reduce the impact on the person’s body. It must be known that no two exacerbations are alike and can change slightly.

The reason an exacerbation occurs is due to the immune system attack on the myelin sheath, which then causes slow or interrupted neuronal signals in the brain and spinal cord. An exacerbation can consist of balance problems, coordination, eyesight, bladder function, memory or concentration problems, mobility, fatigue, weakness, numbness or needle-link sensation.

Mild symptoms such as fatigue, numbness, and needle-link sensation could potentially improve on their own and not require treatment. More intense issues could be considered a severe exacerbation which could include vision loss, extreme weakness, and poor balance. During a severe exacerbation, a person’s daily activities could be affected and a short course of high-dose corticosteroids may be recommended by the specialist.

The high-dose of steroids helps reduce the severity and duration of the exacerbation. Even though steroids work well with the exacerbation, they can also have some rather unpleasant side effects including increased appetite, weight gain, fluid retention, high blood pressure, irritability, confusion or delirium, increased risk for infection, and easy bruising.

Symptoms for each person with Multiple Sclerosis are different. Being aware of common triggers for an exacerbation is vital for each person to know and even though symptoms can occur without any notice it is important to try avoiding certain things the best one possibly can.

4 Common Triggers for an Exacerbation:

Stress- Part of living with an illness like MS is emotional stress which can lead to other common MS symptoms such as depression. Stress does have the potential to lead to additional MS symptoms such as fatigue and confusion. It is a crucial part of MS treatment to have a good and solid support network of people that can help out both physically and emotionally.
Fatigue- Sleep is essential for those with Multiple Sclerosis. Small issues like lack of sleep can trigger MS symptoms. It is very important to have good healthy eating habits, sleep well, and getting exercise daily which will help combat MS fatigue.
Infection- Infections cause about one-third of all exacerbation. Urinary tract infections are very common because some people with MS have reduced bladder function. Any infection can weaken the immune system; even the simple ones like a cold or the flu and cause an exacerbation. It is extremely important to avoid being around sick people, but when it is unavoidable be sure to wash hands frequently.
Heat- Infections leading to fever can be something to worry about considering increased body temperature is a very common trigger. MS symptoms, especially tingling gets worse in the summer because of the heat. It is predominant to get into the air conditioning or take a cool shower to reduce heat symptoms from occurring.

Thank y’all for visiting my site and reading about what an exacerbation is. Speaking from personal experience an exacerbation can be awful and also frustrating. Even though I do know that steroids help the episode duration be shorter, they cause my mood to change so much that I have a hard time with them. They cause my temper to come out much faster than it normally would and also cause me to feel edgy and unable to sleep.

For any of you that have experienced an exacerbation and were put on steroids, how did the steroids make you feel and did they help the episode not last too long? Also, if you have anything you would like to add to this, please let me know. I always want to spread the awareness as much as I can because I think it is important. Even in 2020 I do still think there are a lot of misconceptions about MS and people are very quick to judge, which can cause feelings to be hurt. Please never forget that I am always sending y’all LOTS of love , comfort, and many positive vibes!

Always, Alyssa

My Letter to Multiple Sclerosis

Posted on May 27, 2018 by Positively Alyssa

Good morning Y’all! I hope you are having a great weekend so far and you will be able to enjoy your Sunday! After all the topics I have been able to address, I managed to forget one of the most important topics. While reading several different blogging forums, I thought it would be a good idea to address the thing that brought me to blogging in the first place, my Multiple Sclerosis. So today I am going to share with you the letter I would love to send to this illness. This might be a little longer and full of emotions, but it is also very real! I hope you enjoy this! Maybe this could be something for you to try, write a letter to your illness!

Dear my not so loving friend Multiple Sclerosis,

You invaded my body about 18 years ago and just stuck with me without fail. We have been through many relapses together over the years; all the while you tried to defeat me. But let’s face it, I will not surrender to your persistent bad behaviors and will not allow you to keep me down for too long.

In the beginning of our “so-called friendship”, you tried to take my vision from me, which let me just say was not a good way to become the lifelong friends we were forced to be!! Of course it took a little help from the not so exciting steroids, but my vision thankfully returned to normal! You have tried over and over again throughout the years to take control of my legs by causing me so much pain and numbness, but I am still able to walk without the assistance of what I think you were aiming for. You have caused me so much pain and suffering for way too many years, but I still continue to fight back with all my might because I never plan to give up and allow you to control my life! The truth is, you are the one losing our constant battle and I am shockingly enough the one winning the war!

Let us not forget the fact that you have chosen to take up to residence in my brain causing many other issues for me! There are the several times a week debiting headaches which normally end to severe nausea. The headaches you decided to inflict me with make it nearly impossible to do anything at all! It was also decided by YOU to cause some brain fog and dizziness, making me feel confused and frustrated. The horrible back, neck and leg pain is more than enough for me to live with, don’t you think? Please get out of my brain because you are being EVICTED IMMEDIATELY!

I bet you thought you were being clever by giving me hugs every now and then! Well I do not like or appreciate your unwelcome hugs! So in the future, please do not do that! Just in case you did not already know, your hugs are very painful!

I guess during the 18 years we have spent together, you have become the friend that I never asked for or wanted and you just will not go way to give me a break. You are pretty much worse than the most obnoxious uninvited guest that will NOT LEAVE no matter how many hints you are given! The only thing I can do now is just embrace the fact that you are just here for the long haul and will surface whenever you please without so much as a warning which let’s face it is really inconsiderate!

Oh and what about all those different medications you want me to take? Do you not realize just how much some of these medications can and do affect a person’s body or do you just not care? Why must you be so complicated that the smartest minds of the world can’t seem to find a way to make you vanish? They sure can create so many drugs to “slow” the progression of the illness down but not make the illness stay in a remission state FOREVER! I am starting to think that you, the malicious drug companies and the not so compassionate greedy insurance companies are working closely together to do nothing more but make LOTS OF MONEY yourselves!

So my dear not so sweet friend MS, now that you have heard a little from me about how you make me feel, when are you going to move out of my body allowing me to be free of you? I think it is long since time to depart from each other!

Thank y’all for visiting my site today! I really hope you enjoyed reading the letter I would love to be able to send off to Multiple Sclerosis. Of course I would love to read your thoughts on this, so please let a comment for me and I will respond as quickly as I can. I really hope you are feeling well today and can enjoy your Sunday! As always remember that I am sending you LOTS of love and comfort!

Always, Alyssa

Multiple Sclerosis Awareness

Posted on March 4, 2018 by Positively Alyssa

The Multiple Sclerosis Association of America (MSAA) recognizes March as Multiple Sclerosis Awareness Month, so I would like to share some valuable information about this illness with y’all. Many of you already have a decent amount of knowledge on this illness because either you are living with it or know someone who is, so some of this information you are already aware of! Preliminary results from the National Multiple Sclerosis Society reported nearly 1 million people in the United States live with Multiple Sclerosis and 2.3 million worldwide. This seems like a massive amount of people living with this illness worldwide with no cure, yet. I would ask why, with so many fundraisers to find a cure for this illness, why there has not been one found yet, but I think it is pretty obvious what the reason is. You might disagree with me and that is okay, but the drug companies would lose so much money if a cure was released and the greed takes control with that! I might be wrong about this and it is just hard to find a cure for a debilitating illness, but it would be really great if there could be as it would help so many worldwide.

Multiple Sclerosis is a very unpredictable and sometimes debilitating disease of the central nervous system. This disrupts the flow of information within the brain and between the brain and body. MS is typically diagnosed between the ages of 20-50 and diagnosed 2-3 times more often in women than men. Symptoms do range from numbness and tingling to blindness and paralysis and the severity of symptoms differs drastically between each person.

In 1868 the famous neurologist, Jean-Martin Charcot, lectured on features of Multiple Sclerosis and actually gave it the name. Jean-Martin Charcot was a French scientist, instructor and physician who was the claimed founder of modern neurology. Throughout the 1800’s and 1900’s many other therapists/physicians tried without any success in the treatment of MS. These therapists/physicians created and tested what to me sounds like some very dangerous treatments. One of these dangerous ideas was something called Deadly Nightshade. Deadly Nightshade was a plant with poisonous fruit, arsenic, mercury and injection of malaria parasites. This sounds more like a death sentence than a treatment for the illness.

It was not until 1951 when steroids started being used to treat relapses in MS patients. Steroids are used to reduce the severity and duration of the relapse. They do not have long-term effects on the disease, but are just used as a short-term fix like a band-aid that just assists the issue. For those of you that have been on steroids, you already know they are not any fun at all. I know when I have been on steroids they make me extremely irritable, exhausted and I have literally no appetite. I think normally steroids increase appetites, but they do the exact opposite for me. I guess I am a little abnormal! Even though steroids have some horrible side effects, they do seem to make the relapse a little shorter.

The first drug that was proven to be effective for a long-term treatment of Multiple Sclerosis was approved in 1993. Since 1993, there have been 15 long-term treatments approved for MS. The 15 approved disease modifying medications include injection, infusion and oral. These disease modifying medications are meant to slow the progression of the disease and delay any disability, but unfortunately is not a cure.

In all honesty, I had no idea that this illness had been around since the 1800’s. When I was first diagnosed, I knew hardly anything about the disease. I only knew one person that had MS and granted she was older than me, but she was disabled. I had this overwhelming fear that I would end up in a wheelchair like her. But, it has been almost 18 years and I am still walking just fine. I do experience terrible amounts of pain, numbness and tingling, but at least I have not lost my ability to walk and look like I am perfectly fine. During the times my pain is extremely high is when my motto is “Fake it til you make it!”

For those of you that have been following my blog, you already know I tried numerous different disease modifying medications until I found the one that has been working well for me. I guess back in 1993 when the medications were being released there were far fewer choices for a person to choose from, which must have made things a little easier. Now with so many to choose from you must do your research and test for yourself what works. It is okay to start a medication and find it does not work well with your body chemistry and switch to something else. It is however very important to find one that will work for you so you can have a little better control of the disease. There are a couple of websites that I would encourage y’all to check out as it has a lot of important information about MS, https://www.nationalmssociety.org/ and https://mymsaa.org/ .

I hope y’all have had an amazing weekend. The weather sure has changed here in the south towards more of a spring like time. It is crazy considering it is technically still winter until March 20th, but I can not complain. It was so warm in February which does make me a little worry about what summer is going to be like. I mean seriously, it was 80 at the end of February, so what are the temperatures going to be in July?

Thank y’all for stopping by my site today. I hope the information I have given was valuable and interesting. I spent a lot of time researching Multiple Sclerosis when I was first diagnosed, but over the past few days I did a little more reading and what I discovered was so interesting. I hope you enjoy the rest of your Sunday and I hope you are prepared for the new week to start. Truthfully, I am never completely prepared for a new week because the weekend is so short, I always feel like I did not get anything accomplished, if only the weekends were longer! I look forward to any comments you may have about this post today and I will respond to you as quickly as I can! As always I am sending y’all lots of love and comfort!

Always, Alyssa

First time with Rebif

Posted on November 27, 2017 by Positively Alyssa

As 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. That 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 acknowledge 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!!

Always, Alyssa

Constant state of Fatigue!

Posted on October 19, 2017 by Positively Alyssa

Good 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 remember 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!

I 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!!

Always, Alyssa

The positive mind heals!

Posted on October 18, 2017 by Positively Alyssa

meditation Good 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-Greeting I 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!

Always, Alyssa

Almost done!!

Posted on October 15, 2017 by Positively Alyssa

Happy Sunday 1 Today, 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 Patient the 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-love were 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 hope normally 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!

Always, Alyssa

Happy Friday!

Posted on October 13, 2017 by Positively Alyssa

Happy Friday 13 Good 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