Half-Way Through the Week

Happy Half-Way through the week! I was, unfortunately, unable to work on Monday because of an awful migraine that was making me extremely nauseous. I get migraines too much and I would rank this one of the worst I have had in a long time. I thought I was going to be able to work, but after twenty minutes decided there was no way I could make it through the day. I was miserable with pain that went into my neck and shoulders. I could hardly see straight much less do anything else. I am used to dealing with pain, but it was so bad nothing helped. I ended up being on the couch with my cats and an ice pack all day with NO relief. Thankfully, I was able to work yesterday, but still had a slight headache throughout the day.

Talking about headaches/migraines, do you get these frequently? I would not have wished the one I had on Monday on my worst enemy because no one should have to deal with that. I can normally use an ice pack to help the pain in my head subside, but nothing was helping me at all. My poor cats did not leave my side and I mean that literally. When you get a nightmare headache/migraine, what do you do about it? I feel bad because I think I probably neglected the cats on Monday, but I could hardly take care of myself, so they were lucky to have been fed.

Enough about migraines/headaches, how has your week been? Thankfully, we are closer to the weekend than we were on Monday, so it will be here soon! Of course, we do still have two more days to make it through and I think we could all use something to make us smile and give us some kind of hope! We have a choice to be happy with the life we were given and if there is something we are unhappy with, we need to find a way to change it. I understand change can be scary, but life is short and we need to make the most of what we were given!

Thank you for visiting my site today! I hope you found what I have shared interesting and you might even be able to relate. I look forward to reading your comments and I will respond 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

Never-ending Headache

Happy Sunday to y’all! I hope you are enjoying your weekend and of course, staying safe. I found out some slightly upsetting information the other day. The mother of a friend of mine from high school has COVID. Unfortunately, so many people are under the impression that COVID is something from the past and is long gone now, but the hard truth is, that COVID is still lingering around and invading the lives of too many. My husband and I have done everything possible to stay safe and I think we are the only two people in our circle of friends and family that have not gotten COVID.

I have been unable to do a post for several days now because I have been battling with an evil headache/migraine/sinuses. Over the past several days, this pain has eased up and came back full force numerous times. Considering I have been used to pain for over 20 years, I can normally ignore the pain, but head pain is something I have not learned to ignore. This typically puts me in the bed or on the couch with the cats in misery. If I had to guess, I think this is coming from the weather changes and stress. We are just now in June and the temperatures where I live have already been too close to 100 degrees. I am dreading the next several months of summertime heat!!!!

Regardless of any stress or pain, I cannot even begin to explain how excited I am for June 10th when I get to meet my literary idol, James Patterson. I know this meet and greet will only be a few minutes to tell him how honored I am to meet him, shake his hand, and hopefully get a picture with him, but those few minutes will be amazing! Many people dream to meet a celebrity or rock star, but this man is a rock star in my eyes. I am in complete awe of his writing abilities and only wish I had his talent. I do not think I have ever looked forward to something so much in my life. I am excited and a little nervous because I do not want to become tongue tide and not be able to tell him how much I appreciate his work and enjoyable books!

Thank you for visiting my site today. I hope you enjoyed what I have shared today and that you might have some advice for when you meet your idol! Today is the last day of the weekend, so I hope you enjoy it to the fullest. Tomorrow is another Monday when the new week starts, so rest up and get prepared. I am only working four days because I am off on Friday to go meet James Patterson. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!

Always, Alyssa

Multiple Sclerosis Pain

Each person that lives with Multiple Sclerosis will have a unique journey, as this illness impacts everyone differently. I believe this is one reason why it is often referred to as the “snowflake” disease. The symptoms are vastly different from person to person, and we all handle the symptoms in our way. Of course, each symptom is frustrating, but some can be much easier to tolerate or even get used to. 

For over twenty years, I have battled with Multiple Sclerosis. When I was diagnosed, I was young and did not have extensive knowledge regarding the disease I would be forced to live with for the rest of my life. I was terrified, angry, sad, confused, and everything in between with the diagnosis because of what I did know about MS. I knew MS did not have a cure and it could be extremely unpredictable and there was a possibility to become disabled. Given my age, I was naïve and could not see any hope for my future, which made acceptance almost impossible.

Over the last two decades, I have experienced many different symptoms that had a variety of challenges. For instance, the first and only symptom I had was optic neuritis. This is commonly one of the first symptoms of MS. Optic Neuritis is a temporary problem. When the optic nerve is inflamed it can cause pain and partial or complete vision loss. Typically, this issue gets better on its own, but some cases require steroid medication to reduce the inflammation. 

During the early years after being diagnosed, I went through several frustrating days. Accepting the doctor’s diagnosis was painful and emotionally draining. Every appointment would start with me being argumentative and dismissive of anything the doctor said but would then end in tears. I could not fathom why I had this condition or why my life had to be altered so drastically and at a very young age. The truth is, I have always been a strong-willed person who could take care of herself without any help! I’ve never wanted to rely on anyone for help and was scared I would have to at some point in my life. 

The other frustrating part was deciding on a medication to slow down the progression of the disease. Back then my choices were limited to injections. I have never had an issue with needles but did not think there would be a way to give myself a shot. Even though I hated the options offered, I decided to try one that was three times a day. Unfortunately, after successfully giving myself a shot Monday, Wednesday, and Friday for a few months, the miserable side effects became too much for me to handle and I started slacking the medication, which made things worst. My first Neurologist was a sweet elderly man who has patience for days. He knew my fears, so to convince me to decide on another medication, he used my fears against me. It was a ruthless way of forcing someone to decide, but it did work. 

Of the various symptoms involved with MS, I did not suffer from pain in my early years. Unfortunately, during the past ten or so years, my pain issues have become increasingly more problematic. There has not been even a second, I have not experienced at least one form of pain. Considering it has been going on for so many years, there is a HUGE part of me that expects it and I can manage. Before I had MS, there were many types of pain I did not know existed. 

Through the rest of this post I am going to explain the different types of pain I deal with 24 hours a day, 7 days a week without a break in between. The reason I am doing this today is that my pain levels have become more intense and now in addition to all the other pains, my right shoulder and arm hurt so bad I can barely move my arm. I know my pain has become worst because of the incredible amount of stress I am under, which I am assuming is why my right shoulder hurts too. 

Although everyone has a different experience with MS, pain is a common symptom. Pain affects approximately two-thirds of people with MS worldwide and can impact their daily activities such as work and recreation, moods, and the ability to enjoy life. Most pain is a direct result of MS and is caused by damage to the nerves in the central nervous system. There are other forms of pain due to changes in the body due to MS, which could include experiencing weakness in your arms and legs, which forces you to walk differently causing pain in the back and hips. 

Neuropathic pain stems directly from damage to the nerves in MS. Pain from weakness, stiffness, or other mobility challenges is thought to be Musculoskeletal pain. Neuropathic and musculoskeletal pain can be acute with a rapid onset and short duration or chronic, which starts gradually and stays persistent. 

Neuropathic pain is miserable and, in my experience, not much helps ease the pain. This occurs due to “short-circuiting” of the nerves which carry signals from the brain to the body because of damage from MS. The pain sensation feels like burning, stabbing, sharp, and squeezing. The best way for me to describe this is, that it feels like spiders are having a constant dance party on my legs and feet. Neuropathic pain can be acute and chronic. 

FOUR TYPES OF ACUTE NEUROPATHIC PAIN

Trigeminal Neuralgia- stabbing pain in the face or jaw area. This can be misinterpreted as dental pain. Most often it is unpredictable, so we do not know when it will occur, but it does come and go.

Lhermitte’s Sign- is a brief stabling, electric-shock sensation that runs from the back of the head down the spine and possibly into the arms and legs. This can manifest by bending the neck forward. It typically means there is or has been damaged to the cervical spine from MS.

MS Hug- is a squeezing sensation around the torse. This feels like a snake is wrapped around your body and refuses to let go until it takes the breath out of you. An MS hug is the kind of hug no one wants and is an invasion of personal space!

Paroxysmal Spasms- is a periodic and painful tightening of muscles. For instance, this can happen in your arm or leg several times throughout the day and night.

Chronic neuropathic pain is normally the continuance of acute pain. This is unpredictable and may be experienced daily. Several issues can increase the likelihood to experience this pain, such as stress, fatigue, illnesses, and becoming overheated. 

Musculoskeletal pain with MS occurs because of weakness, stiffness or coordination struggles that change your walking or other mobility. This is often seen in the hips, legs, arms, and normally when muscles, tendons, and ligaments are immobile for a long period of time. 

Headaches and migraines are other common symptoms of MS. Although I deal with numerous other forms of pain daily, I am unable to tolerate migraines. These put me in the bed with an ice pack for hours and often even when I try to sleep them away, they are still present when I wake up. I have dealt with pain for many years and it never gets easier, but I also know crying or giving up does not fix the issues. I just try to keep pushing forward the best I can. 

Thank you for visiting my site today. I hope you found what I have shared interesting and that it helps you with anything you are experiencing. I hope you have had a safe and relaxing weekend. I am looking forward to reading your comments, which I will respond to 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

Pick Me Up Thursday

Good morning, Friday eve y’all! How has your week been? I meant to do a post yesterday but was battling with a nasty migraine/headache and was not able to. I am not sure if it came from looking at a computer all day long, allergies, stress, or somewhere else. Unfortunately, this started mid-day and I still had several hours left at work, but I somehow pushed through it. Even after my workday was over, I still was not able to rest to get rid of the evil migraine because I had to run to the pharmacy. Sometimes it seems like my day is never over!

The past two days I have been in training for my new job. There is such a difference between the mortgage job I did have and the one I am doing now. Considering this was only day 2 of training, I think I am picking up on this well and will continue to understand what this job entails. I did get frustrated a few times because nothing was making sense to me, but the trainer is patient and helpful with her explanations.

I guess I found the mortgage industry easy because I did it for six years and had a great handle on things. I know learning something new takes time and I need to be patient with myself. Of course, like always I am hard on myself and discourage myself. I will work on this, I promise. I honestly do not think this job is too difficult, it is just an entirely new world from what I am used to. I will continue to put my best foot forward and keep y’all updated!

We have almost made it to the weekend, and we only have one more day to get through, which may seem impossible. I feel like we could all use a little pick-me-up to help push us forward. I hope the quote I am sharing with y’all today provides you with the strength and courage to get through. Life gets challenging and overwhelming, which is why we need to focus on taking one step at a time. Do you try taking on too much at the same time as I do?

Unfortunately, Ukraine is still experiencing tragic times. During these times, we need to continue sending them as many prayers and good thoughts as we possibly can. There are no valid reasons for anyone to go through what they are and it is past time for the invasion of this country to end. It is a blessing they have a fearless and strong leader who is standing with his people and not running.

Thank you for visiting my site today. I hope you enjoyed what I have shared and the quote helps you get through until we are finally enjoying the weekend. I look forward to reading your comments and will respond as quickly as I can. I will try to do better with blogging and not miss a day again. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!

Always, Alyssa

Invisible Illness

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

Frustrations of living with Multiple Sclerosis

Living with Multiple Sclerosis has been challenging and frustrating at times. Yes, the disease itself is painful, but many do not understand the symptoms and how they affect daily life. If someone does not have the disease, they are not able to fully comprehend what it is like to deal with the symptoms. Even those that are closest to me and see me daily but do not suffer with the consequences of the disease have a difficult time knowing what it is like to manage. Many people I meet would not even know that I have Multiple Sclerosis because I look perfectly normal, but underneath the mask I wear is a battle with my own body. 

When your body manages to attack itself and you have no control over the symptoms, it can be challenging to explain to others that do not understand because they do not have to endure the difficulties. It is not easy when you have no control of how your body reacts to the pressures in life or even to just being awake. I have said to some that they would not understand unless they could live in my body for one day, but most could not handle it well at all.

One extremely frustrating symptom is the constant feeling of fatigue. It does not matter what time I go to bed or how much sleep I get (which is normally NEVER enough), the fatigue issue consumes my life. I can say that it does get worse as the day progresses and by about 1:00 PM I need a nap, so by the time my husband is ready to have dinner and watch a TV show I am spent and exhausted. I have explained this to him numerous times, but it does not register to him, and he continues to want to have dinner and watch TV or a movie later at night. I guess I can understand this because he does work nights, but I still think there needs to be some compromise and meeting in the middle.

Another frustrating symptom is the never-ending pain. Being in pain 24 hours a day, 7 days a week with hardly any relief is not easy. I try to ignore the pain, but there are times when it is extreme and overbearing, and I am unable to ignore it. Pushing through the pain when it is at the worse and it is hard to stand, or move is immensely demanding. Heck getting out of bed when I know what the day holds, is aggravating and irritating. It is not that staying in bed would help much because just lying in the bed, I still hurt! 

The issue with neuropathy is also a challenge. The feeling of pins and needles or spiders crawling around on my legs and feet is hard, especially because NOTHING helps. I am already maxed out on the medication that is “supposed” to help so how can I have hope for relief, when the medication that should help the neuropathy is not helping? I know it is best to believe things will improve, but it has been many years of this, and it is not coming to an end.

Thankfully, even though I do experience dizziness frequently, I have learned how to cope with it. I have learned that when I do get a dizzy spell, if I focus on a still object, it will help to get the dizziness under some control. However, when it happens when I am driving, it can be a little terrifying, but then I will focus on the lines on the road and manage to stay in between the lines.

I am sure there are other symptoms are not easy to handle, but the one I want to mention is the headaches/migraines. Out of all the other types of pain I endure, this is probably the worst and the only one that will have me in the bed for hours or at least until it gets better. Most pain is something we can learn to deal with, but headaches/migraines I have not been able to learn to deal with and I have been experiencing these since I was a child. I guess when the pain is concentrated on the head, it starts to affect the way we think and communicate.

I know that stress is my biggest enemy and not a friend to the Multiple Sclerosis. The only thing that stress does is make any symptoms with MS more intense. Right now, I am trying to get my medication that helps keep the MS at bay but going through the process and jumping through all their hoops is stressful. This is a medication that without the Gilenya Go Program would cost about $8,000 per month and that is not something any normal person can afford. Unfortunately, I only have enough medication to get me through until Saturday and then I am out. This medication has done well keeping the MS under control and being off of it will only cause me stress.

Thank you for visiting my site today. I hope you found this post helpful with understanding the frustrations of living with an uncurable disease. This post was meant to be a quick overview of the complications of living with Multiple Sclerosis. I would love the change to read your comments and will respond to all of them 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

Hard times with Multiple Sclerosis

I think most of you reading this already know that I have had Multiple Sclerosis since I was only 19 years old. Living with MS for 21 years has not been easy, but I also try to not let it get the best of me. There are always going to be good days and bad days with this disease. Over the years, people have asked me various questions, which some do not bother me at all because I think that means people want to gain knowledge. However, there are other types of questions that do bother me tremendously because the questions show how inconsiderate and cruel people can be.

In this post, I am going to tell you the questions that are hurtful and why I feel the way I do. I am also going to share a few things about this disease that are hard to live with.

One question that always gets to me is, “Why do you not go on disability?”. The reason this question affects me the way it does is because I have always worked and without restrictions. There is no logical reason anyone should think that I need to be on disability because my MS has not progressed to that level. Do I know if it will someday? Absolutely, not because I do not have a crystal ball that sees the future.

Another question that rubs me the wrong way is when people ask me, “What did you do to cause it?”. I mean, really who would ask someone a question like that? In the beginning, when someone asked me this I would wonder if there was something I did wrong and then it would send me into a tailspin of negative feelings about myself. No matter what the disease is, most of the time the person living with it did not do anything to cause it and this is very true with Multiple Sclerosis. The top doctors and researchers in the world, still do not know what causes this disease to happen.

This next question that I find disrespectful and vicious is, “Do you think this could all be in your head?”. My response is normally not pleasant or polite, but I do not think they deserve a nice response. I simply say, “Yes, this is all in my head. The numerous lesions in my brain do cause many issues that I must deal with daily. Maybe you would understand if you had even half of a working brain cell.” I told you my response was harsh, but how do you think I should answer a question like that?

Another question I have been asked that bothers me immensely is, “When do you think you are going to need a wheelchair?”. This question used to bring me to tears because it was my #1 fear when I was diagnosed. As I said, I was only 19 years old and might have still had a partial childlike mind plus, I did not know much about the disease, and I was terrified of a wheelchair. During times when my legs and feet are at their worst with pain and the annoying tingly sensation, this thought does enter my mind again. It is hard to not think this might be something I have to deal with in life, but it is not going to happen anytime soon, or at least that is what I hope for.

Multiple Sclerosis comes along with the pains of different types and severities. After living with these for half of my life, I tend to expect them. Most days, my pain levels are manageable, and I can try ignoring them. However, as the days progress the pain increases gradually. Since I am so used to pain, I often have said if there is ever a day or even an hour when I do not hurt, I would think I died and am on a cloud still comfortably. My life would not be the same without the constant pain, but it would be amazing to have a few minutes with NO pain at all.

The migraines that happen at least once a week are brutal and even more ruthless when they are accompanied by a sinus headache. I do know that migraines are one of the symptoms of MS and sinus issues are a side effect of the medication I take. There is not anything I can do to end these. I cannot stop the MS from being in my body and I cannot stop taking the medication because then the disease would progress and possibly quickly.

Neuropathy is an incredibly annoying symptom of Multiple Sclerosis. The feeling of spiders having a party on my legs and feet is irritating, to say the least. This tends to happen more during the evening hours, which includes times when I am “trying” and failing to sleep. The past few days, the neuropathy has not been limited to the evening hours and instead has been all day long dealing with the spider party. The crazy thing is a heating pad is the only thing that offers any kind of relief and yet, heat is also something that makes the MS flare up.

The final symptom of Multiple Sclerosis I deal with that is mildly obnoxious is fatigue. Everyone experiences fatigue from time to time, but I do on most days. The awful part about this is, even though I get extremely tired halfway through the day, I also at times cannot sleep. My guess is the reason I cannot sleep is because of the pain and neuropathy.

There are many times throughout the days that I wish Multiple Sclerosis did not exist, but it does and affect millions of people around the world. I think it has increased the strength I have to fight against it and every other difficult time in life. I have always been the type of person that does not allow anything to defeat me, at least not easily. Over the years, I have met many other people living with this disease and been able to offer them support, which makes me happy to help someone else struggling.

Thank you for visiting my site today. I am sorry this post was a longer than some of my others, but there was a lot to say about fun times with Multiple Sclerosis. I hope you found what I have shared helpful, and I look forward to reading your comments. I will respond to all of your fabulous comments as quickly as I can. Hopefully, your weekend has been wonderful and safe. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!

Always, Alyssa

Two Days of Head Pain

For many years now, one of the most consistent parts of my life has been the pain issues. Living with pain 24/7 is not easy but most pain I can deal with. I suppose I have learned how to continue living my life, despite the pain because I have realized it was not going anywhere. Over the years, there have been several frustrating things I have encountered when I would say, “If you can’t beat them, join them.” There are no ways to join the pain, so acceptance is the next best thing to do.

Regardless of how I have learned to live with pain, there is one type I am unable to tolerate. Everyone handles pain differently, but for me, head pain is the most unbearable. Unfortunately, headaches are something I have endured long before I was diagnosed with Multiple Sclerosis. One of my first memories of having a headache was as a child. A little girl in kindergarten getting off the school busy with so much head pain I was on the couch all night unable to move.

The painful truth about headaches is, they seem impossible to get used to. All I can do is lay down in a dark and quiet room with an ice pack on my head waiting for the pain to lessen. Every headache I get is a miserable experience that I would not wish on anyone, even my worst enemy.

Since Friday evening, I have been battling with a sinus/migraine. A normal sinus headache or migraine are bad enough on their own, but to gang up on me was just evil. Nothing was helping to ease my pain. I tried an ice pack on my head, but it continued to get too warm. I took Excedrin, Advil, and Sudafed, but it refused to ease up. This double hit of head pain caused me to feel nauseous and dizzy. After staying on the couch with my cats trying their best to make me feel better all day yesterday, I am finally somewhat better today. As I write this post, I am still dealing with the head pain, but I can tolerate it much better now.

Several years ago, when I was getting these nasty migraine/sinus headaches on a regular, I tried going off the Gilenya that I take for Multiple Sclerosis. I had known that sinus issues were a side effect of Gilenya and thought if I went off the source, the sinus headaches would stop. Of course, my doctor advised against this, but I was so sick and tired of the sinus pain, I was willing to do anything to put a stop to it. Unfortunately, going off the Gilenya for a short amount of time caused the MS to get worse and I ended up with additional lesions.

I made the decision years ago that I would rather endure the head pain rather than allow the MS to get worst. Gilenya has been a saving grace because it has slowed the progression of the MS and that means more to me than not having head pain. Yes, I do get sinus and or migraines weekly, but at least my MS is not progressing and putting me in a wheelchair. NO, being in a wheelchair is not the worst thing that could happen, but it is something that I have been terrified of since being diagnosed with MS when I was 19 years old.  I will continue to fight the MS with everything I have and if that means dealing with the head pain, so be it!

Thank you for visiting my site today. I hope you are having a great and safe weekend. I am sure y’all have heard that COVID numbers are increasing again, so I hope you are either already vaccinated or plan to do so soon! I would love to read your comments on what I have shared today and promise to 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

Bad News Week

I hope y’all have had a wonderful week and you are looking forward to the weekend. I managed to fall behind with my blog and still have a few comments to respond to. The past few days I have been consumed with either a migraine or back pain that was so awful I could hardly do anything. Wednesday morning, my back pain was in a different location than normal. On a typical day, it is my mid to lower back that is in pain, but Wednesday morning it was only in my lower back and it took me at least fifteen minutes to pull myself from the bed. This pain was like nothing I have experienced before and had me mildly concerned. I did not lift anything in the previous days, so it did not make sense and I detest when things do not make sense.

I started having another mean migraine on Wednesday that nothing would help it to ease up. Having a migraine and the unusual back pain was extremely frustrating and nothing was making any sense. I detest when things do not make sense because I am the type that needs logical answers. I guess with Multiple Sclerosis, answers are one thing I may never get.

I would assume I know why there were so many issues with pain and a migraine. I do believe I could make an educated guess because after dealing with this unpredictable and hateful illness and knowing my body better than anyone else. My assumption for these issues is none other than stress. I feel like I continue getting bad news daily almost like there is a sign on my head saying, “Please do something that is going to create more problems in life” on my forehead. I mean getting laid off on December 9th and two weeks later having my truck in the shop with an expensive repair, and then on Wednesday learning that my former company is not paying out for the PTO I did not use threw me into the worst stress tailspin.

I was counting on the PTO payout for bills, my husband’s birthday, and a few other things. I cannot say I am surprised that my former company was going to screw me over again. Apparently, my former company thinks it is perfectly acceptable to basically steal money from me and it seems they can do that legally.

I have been constantly looking for another job and it has been beyond frustrating. Many places are hiring for remote positions, but it has been almost a month and I am still unemployed. Being unemployed is causing my personality to change and I do not like it. I feel like my anger about what has occurred and keeps happening is causing me to be a little hateful. I love my cats more than I can explain, but my mood even has me being angry with them and not wanting to be anywhere around them.

I am trying my best to stay positive, but it is becoming harder every day. I keep trying to tell myself that everything happens for a reason and the perfect job is out there for me and will surface when the time is right. I do not know what I did wrong in a previous life to have to continue dealing with challenges, but whatever it was I am so sorry. I just really need a break and have something, just one small thing happen work out.

I am working on another post and will hopefully have it completed tonight. I have also been working on a short story to help build on the creativity I know that I have inside. Writing has been an outlet for me and even though two of my cats are doing everything possible to not let me write because they want my attention, it is still the only thing that lets me escape from reality.

Thank you for visiting my site today. I appreciate your time and look forward to reading your comments. I will be responding to comments today and tomorrow, so I will be caught up soon. I hope you have a lovely and safe weekend. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!

Always, Alyssa

Defeat Chronic Pain

Pain is not something anyone wants to deal with or finds easy to manage. Of course, there are many that battle with chronic pain due to an illness. It does not mean anyone experiencing pain 24 hours a day, 7 days a week, and 365 days a year any easier, but they may become used to it. Since my Multiple Sclerosis diagnosis 20 plus years ago, my days have been accompanied by pain. At the beginning of my MS journey, my pain was minimal in comparison to what it is now and mainly focuses on my legs. To be honest, the leg pain generated pain significant enough to make standing, let alone walking challenging and agonizing.

There is no denying that the leg pain I endure is a direct result of neuropathic pain due to my MS. Neuropathic pain is typically described as a burning sensation in the affected areas. This type of pain is caused by short-circuiting of nerves carrying signals from the brain to the body due to damage inflicted from MS. Not only does the painful sensation feel like burning, but also like a stabbing, sharp, and pressing sensation. For anyone that deals with this neuropathic pain, it can be acute or chronic, which I will explain further.

Acute Neuropathic Pain may be an initial symptom of MS or part of an MS relapse. This can be described as a rapid onset and is for a short duration. The four different types of Acute Neuropathic pain are:

Trigeminal Neuralgia is typically described as a sharp and or shooting pain in the face or jaw area. This pain may occur as an initial symptom of MS or as part of a relapse. Considering the location of this pain it has been misidentified as dental pain, but this is caused by damage to the trigeminal nerve. Like many other issues associated with MS, this pain is unpredictable and comes and goes as it pleases.

Lhermitte’s Sign is a sudden and momentary sensation like an electric shock traveling from the back of the head, down the spine, and often extending into the arms and legs. This issue is often due to bending the neck forward. The pain indicates there was damage in the cervical spine caused by MS, which could be the first sign of MS or a relapse.

MS Hug most commonly is due to damage to the spine due to MS. I do not like the name of this issue because it is a hug that no one in their right mind wants to have ever! The best way to explain how this feels is a tight squeezing sensation around the torso, almost feeling like the blood pressure cuff on your arm or possibly how it would feel if a snake wrapped itself tightly around the torso.

Paroxysmal Spasms can be described as a sporadic and painful tightening of muscles. This is commonly a brief twitching that comes on suddenly and disappears as quickly as it came on. Frequently, this is felt in the arm or leg and occurs several times throughout the day and or night.

Chronic Neuropathic Pain tends to be the continuance of acute neuropathic pain I previously explained. When MS is involved, the pain can be experienced daily or nearly daily but is often unpredictable. When someone endures acute neuropathic pain, the likelihood it will become chronic is significantly higher. Some specific issues can increase this type of pain, including higher levels of stress, fatigue, illnesses, and becoming overheated.

Unfortunately, pain plays a vital part in many illnesses. Most of these illnesses are lifelong because cures have not been discovered as of now. Pain is not easy to live with, which is why it is so important to continue searching for various ways to keep the pain as under control as possible. I do not plan on allowing the pain I experience to dictate my life but will use the pain to fuel my determination to find pain relief strategies. Throughout my 20 plus years of living with various severities of MS pain, I have learned ways to tolerate the pain better including but not limited to the following. I say not limited to because I am sure there are many other amazing ways to handle pain and if you have any ideas, please share!

Utilize your breathing:

Of course, when the pain becomes high it is common to become increasingly tense. During these times it is crucial to try attempting relaxing techniques in a quiet, comfortable body position, and block out any distractions. You can envision the area below the navel or the area your pain is in and breathe into that area calmly, filling your abdomen with air and slowly exhaling. Imaging a deflating balloon may help with this part.

Decrease stress in life:

Pessimistic emotions such as depression, anxiety, stress, and all other negative emotions can drastically increase our body’s response to pain. Once we learn how to overpower the nagging stresses we may feel, we are likely to feel less pain. I think we have all heard that stress is a silent killer and I do passionately believe this.

To be completely honest, stress has been the most common culprit when my pain becomes more intense. Many techniques can help reduce stress, but everyone is different with what will work best for them. Often soothing and calming music can create a relaxing environment, which may promote feelings of less stress. Truthfully, most types of music will relax me because I enjoy listening to the lyrics and feeling what the songwriter was feeling.

Natural Endorphins Through Exercise:

When we are experiencing constant pain, it is very understandable we do not feel like we can be active. We may think the activity will make the pain we already feel worse, but that is not always the situation. Often when we are challenging ourselves physically, it can be beneficial if it is not too hard, long, or too much exertion. It has been stated that exercise strengthens muscles, which can help to reduce additional pain or further injury. It is advised to discuss exercise regimens with a professional because they will have the most knowledge and be able to describe what the best possible exercises would be for everyone.

Understand that alcohol creates problems:

Pain and alcohol cause problems with sleep. With that being states, drinking less or none may improve the overall quality of life, decrease pain levels, and enhance sleeping quality.

Journal daily activities and pain:

To treat pain effectively, it is important to be able to explain how we are feeling to our specialists. It is easy to forget things during doctor’s appointments because we might feel flustered, which is why it is crucial to document daily pain levels and what activities may have caused them. We will be able to discover what we were doing before the times when pain is highest. It could also be beneficial to document daily meals because some foods can increase pain.

Beneficial to maintain a healthy diet:

There are several reasons a well-balanced diet is of vital importance to one’s overall health. Nourishing our body with this type of diet can assist the digestive process, decrease the risks of heart disease, provide weight control, and boost blood sugar levels. Deciding to follow a low-fat and low-sodium diet the options can include the following: fresh fruits and vegetables, cooked dried beans and peas, whole-grain bread and cereal, low-fat cheese, milk, yogurt, and lean meats. A few examples of lean meats are beef, lamb, veal, pork, chicken, turkey duck, fish, and seafood (fish, prawns, crab, lobster, mussels, clam, etc) I do not eat seafood so I am not 100% sure what somethings are, but you might enjoy seafood and know a lot more than I do about it.

Discover enjoyable distractions:

If we allow ourselves to focus solely on our pain, it will get worse before it gets better and consume our life. Activities that keep the mind busy and thinking about other things besides the pain can be a successful way to decrease pain. Even if this is only for a short time, I think it is worth trying, don’t you? Sudoku puzzles are thought-provoking and fun, or at least I think they are.

Life with a painful chronic illness can be incredibly challenging, but I think together as a community we can help one another through these times. I hope the information I have shared in this post will be helpful for you or someone you know. Please just remember that I am not a medical professional and everything I have written was based on research and personal experience.

While I have been dealing with pain for over 20 years, I have been able to expect it, but I do not enjoy it obviously. Some days are worse than others and on the truly miserable days, I will keep fighting my battle because I am not ready to surrender to it. I guess it is the same with anything, good and bad days come and go, but they do not need to restrain life!

Thank you for taking the time to read this post. I know it was a little longer than my normal posts, but there was a lot of valuable information to share. I am looking forward to reading your comments and I will respond to all comments as quickly as I can. I hope your week is going well and you are staying as safe as you can. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!

Always, Alyssa