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

Frustrations of living with Multiple Sclerosis

Posted on March 10, 2022 by Positively Alyssa

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

9 Multiple Sclerosis Facts

Posted on March 24, 2021 by Positively Alyssa

In previous posts, I have explained that Multiple Sclerosis is an autoimmune and neurologist illness. What this means is MS affects the nerves, but also the body’s defenses to fight disease fails and begins to attack the cells. The immune system attacks the body’s myelin when you have MS. Myelin is a protective substance covering the nerves, so when this happens it leaves the nerves unprotected. The nerves being unprotected makes them vulnerable to damage, which causes them to not function as they would if there was healthy myelin. The damaged nerves create a wide range of symptoms that vary in seriousness.

A few additional facts regarding MS to understand are:

1.Multiple Sclerosis is a chronic condition, which means it is a lifelong condition and it does not currently have a cure. It is important to understand that even though there is not a cure, it is not fatal. There are 2.3 million people worldwide living with MS and they all have the standard life expectancy. It is only in rare cases there might be complications severe enough to shorten the life of a person. Overall, with MS most symptoms can be regulated with medication, adjustment to lifestyle, or both.

2. Multiple Sclerosis affects younger adults, and often women. Although MS can be diagnosed in children and older adults, people are mainly diagnosed between the ages of 20 and 50. Women are two to three times more likely to develop MS than men. If the person is diagnosed is over the age of 50, this is normally called late-onset MS. It can be challenging for older adults to find a diagnosis of MS due to other age-related conditions having similar symptoms.

3. Multiple Sclerosis can be arduous to diagnose. Often symptoms and single tests are not enough to be able to make an accurate MS diagnosis. The challenges are due to the symptoms mirroring the symptoms of other conditions. Numerous tests that can be used to rule out other potential causes of the symptoms a person is experiencing, which include:

A. Blood tests to rule out Lyme disease, which can trigger the same symptoms of MS.

B Neurologist Exam

C. Magnetic resonance imaging (MRI)

D. Visual evoked potential (VEP) test, which looks for impaired transmission present along the optic nerve pathways.

E. Cerebral Spinal Fluid (CSF) Analysis is a way to look for conditions affecting the brain and spine. The CSF analysis is a series of laboratory tests performed on a sample of the CSF, which is a clear fluid that cushions and delivers nutrients to the CNS.

F. Optical coherence tomography (OCT)

4. The symptoms involved with Multiple Sclerosis vary and the list is long. The truth is, there is no such thing as typical symptoms because everyone that lives with this illness experiences it differently. Some symptoms may simply come and go, or some may regain a lost function, such as bladder control. A few possible symptoms include numbness and tingling, vision problems, balance and mobility issues, and slurred speech. The unforeseeable pattern of symptoms is due to whatever nerves are being attacked by the immune system at any given time. Most things are just unpredictable, and we must deal with the issues as they come up.

5. Multiple Sclerosis is comprised of relapses and remissions. Remission is the period of time when the symptoms have improved. Remission does not indicate the MS is gone, but these periods may last days, weeks, months, or in some cases years. Relapse or exacerbation is the incidence of a new symptom or worsening of an old symptom. This occurrence can be mild or severe enough to interfere with the ability to function. No two exacerbations are the same, so it is important to consult with your neurologist when you deal with one.

6. There is a cognitive part to Multiple Sclerosis. All the damage MS causes to the nerves can also impact critical thinking and other cognitive (mental) skills. It is not unheard of or abnormal for people with MS to have issues with memory and or finding the right words to convey what they are thinking. A few other cognitive effects may include:

*An inability to concentrate or pay attention

*Decreased problem-solving skills

*Difficulty with spatial relations, which means the ability to perceive two or more objects positioned in space relative to oneself and in relation to each other.

*It is normal for cognitive problems to create frustration, depression, and/or anger, but these are issues your doctor can help monitor and manage.

7. Multiple Sclerosis has been labeled as an “invisible illness” or “silent disease”, which makes sense because at face value people with MS look no different than those without MS. Symptoms such as blurred vision, sensory problems, and chronic pain cannot be seen by anyone else. However, some people that do require special accommodations, even though they do not have mobility issues and appear to be fine. One reason why MS has been labeled a “silent disease” is that even during remission, the disease is still, unfortunately, progressing, which has been referred to as “silent progression” of MS.

8. Staying cool whenever possible is greatly beneficial. Heat intolerance is another common issue that can cause an exacerbation of symptoms. People with MS may experience an increase of symptoms from hot weather or sun exposure, fever or illness, hot baths, or showers, and overheating from exercise.

It might be helpful to use fans and air conditioning, cool drinks, and/or icy compresses to stay cool. Wearing layers of lightweight clothing that is easy to remove may serve as a benefit as well. Also, utilizing a cooling vest that can be purchased online. Although people might experience a heat-related relapse, it is important to understand that heat does not cause MS to progress any faster.

9. Vitamin D plays a vital role in Multiple Sclerosis. Research has indicated a link between Vitamin D and MS, which showed the nutrient can function as a protector against MS and possibly lead to fewer relapses. Sunlight triggers the production of Vitamin D in the body, but that sun exposure can also lead to heat-induced symptoms. There are plenty of ways to increase Vitamin D without sun exposure which include fortified milk, orange juice, cod liver oil, salmon, tuna, and eggs or there are also Vitamin D supplements available.

I hope you found this information useful for yourself or someone you know. Please just keep in mind that I am not a doctor or medical professional, I am just someone that has lived with MS for over 20 years. I have experienced most of what is in this post, but that one thing I did not do when I was diagnosed was have the CSF Analysis. I have heard it is not pleasant, but people do live through it. There are still a few days left in the month of March and I do plan on doing a few more posts for Multiple Sclerosis Awareness. I do feel like there is a lot of information available and it needs to be shared with as many people as possible!

Thank you for visiting my site today. I always appreciate your continued support and truly love reading your comments. I hope you are having a good week and you are staying safe because COVID is still a threat. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!

Always, Alyssa

Brain Health with Multiple Sclerosis

Posted on March 11, 2021 by Positively Alyssa

~Ways To Keep Your Brain Healthy~

Living with Multiple Sclerosis over the past twenty years has taught me a lot about strength, determination, and the power of the mind. Of course, I am always wanting to learn more about different ways to beat this unpredictable illness and I would like to share with y’all something that I learned with research. I have said this in previous posts, but feel it is important to say again, I am not a doctor or a medical professional and what I write about when discussing anything related to the medical field is based on my research.

It is common knowledge that Multiple Sclerosis is a neurological condition that affects the brain and nervous system. With that said, I am going to explain 5 approaches that can help protect our brain health.

1. See a neurologist:

A neurologist is a doctor that specializes in the nervous system, which includes the brain. There are several ways a neurologist can be helpful that include, but not limited to:

A . Monitor any progression of the condition we are dealing with.

B. Evaluate the treatment plan to ensure it is providing the best prevention of progression and or disability.

C. When necessary, recommend changes to the current treatment plan

D. Disclose information regarding any new and/or experimental treatment options.

I think it is crucial to have a neurologist you trust and are comfortable with because they are the ones helping prevent the progression of the specific disease. This type of specialist tends to have a personality of a gnat, but there is one out there for all of us. Over my 20 year stretch with Multiple Sclerosis, I have seen around 5 or 6 and at least 3 of them did not work because I did not trust their abilities, nor did I feel comfortable with them. You must feel comfortable and trust the specialist you see because your health is basically in their hands.

2. Discover the disease-modifying treatment (DMT) that works best for you:

Disease-modifying treatments are a class of medications that were designed to slow the progression of MS. These medications can help in several ways which include, but not limited to:

A. Ward off the growth of lesions on the brain and/or spinal cord

B. Decrease the frequency and seriousness of relapses.

C. Diminish the risk of disability.

The specialist you see should be able to explain the various types of DMT’s, which include explaining the potential benefits and risks of each. During my MS journey, I have tried several and found some that worked well for other people but did not work for me. I think it can be one of those trial-and-error situations. I learned quickly that I cannot do shots and it has nothing to do with the needle, as I do not have a fear of needles, but everything to do with the side effects I could not handle.

3. Be involved with Cognitive Rehabilitation:

Cognitive rehabilitation entails utilizing memory or learning exercises to improve cognitive functioning. These exercises have the potential to help many things which include the following: Memory, learning, and attention.

4. Find time for mentally stimulation activities:

If we try taking part in mentally stimulating activities daily, it can increase brain volume and expand our cognitive reserves. By doing these activities daily or at least every other day, they can help protect us from memory loss and other cognitive changes. Simply giving our brain a good workout with thought-provoking activities could prove to be fun and keep our brain healthy. It may be beneficial to make time in our schedule for something such as:

A. Complete a crossword puzzle, Sudoku puzzle, or any other word or numbers game. I love Sudoku puzzles but have never been good with crossword puzzles, but then again, I have not actually tried.

B. Read books, magazines, or other types of materials.

C. Write diary/journal entries, short stories, or poetry (all for your eyes only if you choose)

D. Paint, sculpt, or other types of work of art.

5. Try getting some exercise:

Getting a little regular physical activity is vital for our overall health. This does not mean we must join a gym and go every day; it can be something simple and easy to do at home. Exercise can possibly help with various things, such as:

A. Preserve OR increase brain volume.

B. Improve cognitive processing speed

C. Boost memory

D. Lessen fatigue.

E. Decrease the risk of depression.

I hope the information provided in this post was helpful for you or someone you know. It is important we do all we can to protect our brain health, which can help to prevent any additional challenges with Multiple Sclerosis. I decided 20 years ago when I was first diagnosed with this disease and promised my late Grandfather, I was not going to allow it to defeat me, and I would continue to fight until I lost the ability to do so which has not happened yet!

Thank you for visiting my site today! I always appreciate your continued support and enjoy reading your comments, which I do my best to respond as quickly as I can. I hope your week is going well and you are looking forward to the upcoming weekend, which is finally almost here! I do hope any plans you have for the weekend you will remain safe!! Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!

Always, Alyssa

Multiple Sclerosis Awareness Month

Posted on March 7, 2021 by Positively Alyssa

As you read this post, please be advised that I am not a medical professional. The information in this post is based on the research I have done since being diagnosed with this disease 20 years ago. The one thing about this disease that is important to understand is, it is extremely unpredictable and everyone, no matter what type of MS they have experiences it different. It does not matter if two people have the same type of MS, everyone experiences and deals with it differently.

Multiple Sclerosis (MS) is an autoimmune disease that means that the body’s immune system attacks its tissues. This is a very unpredictable disease, and everyone experiences it differently. In this post, I am going to explain the four different types of MS and the distinctive characteristics of each type.

Radiologically Isolated Syndrome (RIS), is not considered part of the MS path, but has been utilized to categorize those with abnormalities on the brain and/or spinal cord that are consistent with a lesion of MS, and do not have any current or previous neurological symptoms or abnormalities discovered on a neurological exam. Many individuals had an MRI due to symptoms, such as headache, and revealed lesions appearing similar to those found in MS. During a study in 2020, it was uncovered that more than half of individuals with RIS will develop MS within 10 years.

Clinically Isolated Syndrome (CIS) is a path of MS. CIS is referred to as the first occurrence of neurologic symptoms, which last at least 24 hours. This occurrence is caused by inflammation OR demyelination in the Central Nervous System (CNS). CIS can be classified as monofocal OR multifocal. Monofocal is when a person experiences a single neurologic sign or symptom that is caused by a single lesion. An example of this is an optic neuritis attack. Multifocal occurs when a person endures more than one sign or symptom caused by lesions in more than one area. An example of this is an optic neuritis attack and tingling in the feet. An important thing to be aware of is, just because an individual experiences CIS, it does not mean they will develop MS. The healthcare provider faces two challenges with diagnosing CIS:

1. Determining if the person is experiencing a neurologic episode caused by damage to the CNS.

2. Determine the chance from the damage the person is experiencing is a form of demyelination that will develop into MS.

Relapsing-remitting MS (RRMS) is the most common and the type I was diagnosed with 20 years ago. Approximately, 85% of individuals with MS are originally diagnosed with RRMS. This type of MS has evidently defined the attack of new or increasing neurologic symptoms. The attacks are also referred to as relapse or exacerbations and are followed by periods of partial or complete recovery, which is also known as remissions. While there is not any obvious progression of the disease during a remission, symptoms may disappear or some of the symptoms may continue and become permanent.

RRMS can be further described by inflammatory attacks on myelin, which is the layers insulating membranes surrounding nerve fibers in the central nervous system (CNS) and the nerve fibers. Throughout the inflammatory attacks, activated immune cells cause small, restricted areas of damage that create the symptoms of MS. Considering the areas of the damage varies, no two people will experience the same symptoms at any given time.

Those who have RRMS tend to have more brain lesions and more inflammatory lesions that appear on the MRI scans. Individuals are often diagnosed with RRMS in their 20’s and 30’s but can also occur in both childhood and later adulthood. Women are diagnosed 2-3 times more often than men.

The symptoms of RRMS can and normally are different for each person, but there are some common issues. The most common symptoms for RRMS are fatigue, numbness, vision problems, spasticity or stiffness, bowel and bladder problems, and issues with cognition. It has been suggested that a transition from RRMS to years SPMS typically will take place in people who have lived with RRMS for at least 10, but this does not always happen.

Secondary Progressive MS (SPMS) is another type of MS. This type of MS usually follows a period of the relapsing-remitting disease, the levels of disability gradually increase with or without evidence of disease activity.

SPMS is basically a second phase of the disease. Individuals with this type of MS may or may not ensure relapses caused by inflammation. However, the disease slowly changes from the inflammatory process like seen with RRMS to a consistent phase classified by nerve damage or loss.

Before the availability of disease-modifying therapies, some studies suggested that 50% of those diagnosed with RRMS would shift to SPMS within 10 years, and 90% would change within 25 years. The many different medications that are available in 2021 have provided a positive impact on disease progression. However, experts say it is still too soon to know the extent to which these disease-modifying treatments will change or slow the transition to SPMS.

Considering the transition from RRMS to SPMS is a gradual process, the healthcare provider will not know when exactly it occurs. The challenges the healthcare provider faces is establishing if:

1. The worsening is permanent, but some damage remains after the inflammatory attack ended, meaning the individual is experiencing an RRMS disease course.

2. OR the disease continues to get worse, but the individual is no longer enduring an inflammatory relapse, which would indicate the person has transitioned to an SPMS disease course.

The fourth type of Multiple Sclerosis is Primary Progressive MS (PPMS). This type is classified by worsening neurologic function from the onset of symptoms without early relapses or remissions.

Each person that lives with PPMS will experience this disease differently. Commonly, PPMS may have short intervals when the disease is stable, with or without a relapse or any MRI activity, as well as duration when there is increasing disability occurring with or without new relapses or lesions on an MRI.

PPMS is different from RRMS and SPMS because it does not include the same issues with inflammation. Although people with PPMS have fewer brain lesions than those with RRMS and SPMS, they do tend to have more lesions on their spinal cord. Typically, people with PPMS experience more problems with walking and may require more assistance with everyday activities.

From my own experience with Multiple Sclerosis, I was a terrified child when I was diagnosed. I was only 18 years old and did not know much about the disease. In my naïve childlike mind, I was going from being diagnosed to a wheelchair and then death. Yes, I was diagnosed, but did not end up in a wheelchair yet. I think it is extremely important for anyone newly diagnosed to do research, build a strong and honest relationship with a neurologist, and have a strong support system. It can be a scary and terrifying diagnosis, but a normal life can still be lived, especially one the right disease-modifying treatment is found!

Thank you for visiting my site today. This is my first post about Multiple Sclerosis for MS Awareness Month. There is so much information out there about this disease and I only wish I had this when I was diagnosed all those years ago. I can remember how I felt because I was alone in the exam room when I heard the news and it felt like the room was spinning out of control. I did not want anyone to know I had MS, but that was rather silly. Now days, I am open about it and want to help others that are dealing with this disease. I want y’all to know, no matter how alone you feel, you are never alone! Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes! I also want you to feel free reaching out to me any time if you ever need any extra support and help!

Always, Alyssa

~Motivational Monday~

Posted on September 28, 2020 by Positively Alyssa

~A New Fresh Week Ahead~

Happy Monday y’all! I hope you had a wonderful and safe weekend! I know it is never easy to start a new week because it still feels like it was Friday about 10 minutes ago, but this week should be great. Let’s see my week has a few different events that may be exciting. Wednesday is my birthday and getting older is never exciting. Thursday is my 9th wedding anniversary, which is exciting and makes me super happy! Before COVID-19, my husband and I always went away to my favorite place, the beach to celebrate both days. This year we are not able to do so, but spending the weekend together is what really matters!

Y’all know I think we always need a little motivation to start the week off on a good and positive note. I found the quote I am sharing with y’all beautiful and hope it provides you the motivation you need to start this week off on the right foot! I am looking forward to reading what you think of the quote I shared with y’all today and promise to respond to all comments as quickly as I can!

I think the quote that I shared with y’all today, pretty much sums up the way I feel about life in general. I believe seeing opportunities in everything in our life is a necessity for our growth. We have to continue growing. We are almost going to be beginning 2021, and I think we should be progressing with the times, which would include being more accepting and open-minded.

Thank you for taking the time to visit my site today. I hope you have a great, and safe and your days only continue getting better. Please never forget that I am always sending y’all LOTS of love, comfort, support, and many positive vibes!

Always, Alyssa

Changing my thought process!

Posted on August 22, 2018 by Positively Alyssa

Good evening y’all! I hope you have had a wonderful Wednesday! Thankfully we are half way through the week and only have two days left until we reach the weekend! I am pretty sure we can make it two days! Of course, I could not be any happier tomorrow is FINALLY Thursday, the day I have waited for since last week!

I think y’all know that I have done nothing but stress myself silly about the MRI I had last Friday. Tomorrow afternoon is when I will get the “official” results and will actually be able to talk with the NP. So thinking in a logical state of mind, did me getting all worked up do anything for the good? ABSOLUTELY NOT! In fact, all that stress only caused me to feel twice as much pain, which has honestly been miserable! I think the worrying was a complete waste of time!

I have adopted a new way of thinking and I feel that is much more healthy for my mind and body. There is nothing at all I can do to change what the results of my MRI are, so why bother thinking about it anymore? If my MRI results are the same as they were in October, when the doctor said it was the “worst” MRI she had ever seen, so be it! I guess it is better to be the same instead of there being even more active lesions and I will handle it the best I can. I think I am a pretty strong person and can tolerate anything life throws my way.

Multiple Sclerosis can have constant changes and we must learn new ways to get through our life. Of course, if there are no changes at all and I will be forced to just get through the rest of my life with a lot of pain, it could be much worse!

I am a fighter and will never allow for this illness to consume my life. I did promise myself 18 years ago, when I was diagnosed that I would never surrender to it and I would find a way to control the illness, not the other way around! I know this post is a lot different and lighter than some of my previous posts, but I am learning to just accept what I can not control or change and continue on with the life I was given!

Thank you for visiting my site today and thank you from the bottom of my heart for ALL of your support during these past few stressful days! I do know that I was getting incredibly stressed for NO reason at all! I hope you have a wonderful and restful evening. I am going to try to share the news I get tomorrow afternoon once I get home, you know as long as I am not too upset! As always please remember that I am sending y’all LOTS of love and comfort!

Always, Alyssa

What are the struggles & benefits of living with a chronic illness?

Posted on August 13, 2018 by Positively Alyssa

The struggles of living with any chronic illness are numerous and endless. So many chronic illnesses come with various issues that might be difficult to treat, which can and does lead to SO much frustration. Through many visits to several different doctors, we are caught up in SO much medical debt, because the United States does not offer free healthcare like ALL other developed countries offer! For instance, I am required to see my MS Specialist to try slowing the progression of my illness down, but have to see another specialist to treat the pain issues! It does not make any sense to me because the pain is a direct result of the MS, so why it is my MS specialist can not treat the pain as well? Oh that’s right, because there is an opioid epidemic so anything related to pain needs to be monitored by a pain specialist who only sees me for 3-5 minutes every 2 months! Do you really think the pain doctor actually specialized in pain or they just could not hack it with being a real doctor? That might sound a little cruel as I am sure this “pain specialist” passed medical school, but seriously there are no medical schools out there that really specialize in pain!

Another struggle those of us that are living with a chronic illness faces is dealing with the dreaded insurance companies! We all know these insurance companies only see $$ dollar signs when they see our information come through! They know our medications cost a small fortune, so therefore we pad their paychecks with the many medications we are required to take. I know that my Gilenya alone without assistance would cost around $1500 a month and that is with insurance! Who can afford that on the wages we make? That’s right NO ONE can and therefore our conditions would worsen drastically over time! Do the insurance companies care? NOT AT ALL! I do believe that the insurance companies and government work together so they can be very well off in life without any regard for human life! Now with the talk among the government, some of us many worry that we will lose our expensive insurance in the near future. I do sincerely hope that I am wrong about this though, but that is honestly what I think is on the agenda!

Some of us may worry about the struggles of working a full-time job, as many of us probably can not afford to work part-time hours! Even if we are able to work a schedule with reduced hours this can not only be a financial burden, but also causes nonsense judgments from co-workers! The comments that are made can be extremely frustrating and offensive, but we are doing all we can in life! I know that all of us would prefer to be able to tolerate full-time work, but when we are not able to we are doing the best we can and should not be looked down on! As you can probably tell I have heard the comments made about working ONLY 6 hour days, but I am pushing myself to do this!

Another struggle some of us may face is fun times with parking! Some of us may have handicap parking, which should be making our lives easier! However, some may look perfectly normal to the naked eye. We may suffer from something know as an “Invisible Illness”, which of course we feel but NO ONE sees our struggles! They may make ignorant comments about someone who looks completely normal parking in a handicap parking space. Rude comments have been made towards me and it did hurt my feeling terribly! But it has now been a few years since I was given the handicap parking, so I have had many experiences that I want to forget ever happened. Now days I do not allow negative comments to get to me as much and just feel sorry for the people making the ignorant comments and even worse for their children to grow up in that horrible environment because they may end up just as ignorant!

Fatigue and migraines are somethings I know many of us deal with almost daily! Both of these can be relatively difficult, but we handle them the best we can! Now I do not get migraines daily, but I get them enough to understand how hard they are to cope with. Fatigue on the other hand I struggle with daily! I normally begin feeling much fatigue around 1:00 every day which is why I get into work earlier. For some reason, I feel much better earlier in the day and worse as the day progresses. It does not matter what time I wake up, always around 1:00 I feel like I need a nap!

OH WOW I almost forgot, I did say there were benefits to living with a chronic illness! The benefits are often very difficult to find, but they are there somewhere deep down. When living with an illness has NO cure it can make us more sympathetic, empathetic, and compassionate to what others might be dealing with at any moment in life. It may even give us the opportunity to meet others that understand our struggles and also offer support to others living with something similar! It may take work, but we are able to build strong networks with many others that can be very beneficial to all that is involved. Through the blogging community, I have been able to build powerful and valuable connections with SO many very incredible people who I have come to care so much for! I am truly thankful for all of my blogging friends and feel we might not have met if it were not for the chronic illness!

I sincerely appreciate you visiting my site today and always encourage your comments as they are fantastic! I hope y’all have a lovely day and you are feeling the best you can! Please remember that I am always sending y’all LOTS of love and comfort!

Always, Alyssa

Lesion Party

Posted on June 18, 2018 by Positively Alyssa

For the past few weeks it seems that the issues I have had with my legs, arms and back has increased drastically! Now like most of us I was curious as to what could be causing this increase of pain, tingling, burning sensation and pins and needles, so I looked it up on Google. Oh my word looking things up online is almost worse than dealing with what the doctors have to say! Honestly the main reason why what I read online was disturbing is because it was pretty close to what I already suspected, but there really is something about reading it that makes it a little more upsetting.

It has been in my overworked and mildly stressed mind for weeks now that these issues are being caused from new lesions or those that were already present are active now. It does not seem to matter if I am resting or moving around, the pain does not just go away! This possible lesion party that is going on in my body needs to be shut down! This party is more like a hostile takeover of my ability to live pain-free rather than a happy time with friends having fun like most parties are!

With all of the different issues I have been fighting with for far too long and keeping it from my doctor, today I finally have had enough and sent a message to my doctor to see her recommendations would be. Y’all already know that I completed paperwork last week to hopefully receive MRI assistance, as I do realize that is what is going to be needed, but I am still waiting to hear back about that. Do you just wish these doctors could hear what we are going through, make a true educated assessment and not have to go through the MRI ordeals? I personally think what we are suffering with could be something a true and competent specialist could easily figure out what is causing it and diagnosis the issue.

With all the said, I ended up staying out of work today because of how I was feeling. Even though my legs did not feel stable enough, I did get up when my alarm went off this morning and made an attempt to try getting ready for work. However, when the short distance from our room to the bathroom felt like 10 miles, I knew anything more would be too hard on my broken body. Crazy thing is I did rest all weekend, but it did not help at all! It really seems like rest hurts, moving hurts and basically anything I do is painful so what do you do when that happens?

I certainly hope y’all had a good start to the week and I hope you are feeling well. I appreciate you taking the time to visit my site today and your comments are always appreciated and encouraged. It may take me a little longer to respond just because it is a difficult day, but I promise I will respond! As always, no matter what I am going through I am sending y’all LOTS of love and comfort!

Always, Alyssa

Disability or NOT?

Posted on May 23, 2018 by Positively Alyssa

There are many people out there that qualify and truly need to be put on disability and there is absolutely nothing wrong with that. When someone makes the decision that they are not able to work any longer and their doctor agrees with them, then you just know it is the right time for taking that route in life. Do some people actually take advantage of this? Absolutely and that is just really sad and an insult to those that do need disability! No one can really be pushed or forced to file for disability as it is a very involved process and does require a lot!

Disability does not have to be permanent, but you must be totally disabled as is defined by the Social Security Administration. The Social Security Administration (SSR) actually anticipates that the condition can improve at any point in time! Aren’t they thoughtful and optimistic? Therefore this requires those that were awarded benefits to participate in a process called Continuing Disability Review (CDR). The reason for CDR is to determine if there have been any improvements in the claimant’s medical or financial circumstances. All approved claims are subject to “diary review dates” after one, three and seven years. Now this does depend on the condition the disability was awarded for and the probability for improvement. All that is required to avoid interruption in disability benefits is medical documentation that the claimant still suffers from the impairment the disability was originally awarded for and that there have not been any improvements.

The SSR tries to make this process a little easier for those filing, so their list of impairments are broken down by bodily systems or functions:

Musculoskeletal Problems:
- Back conditions and other dysfunctions of the joints and bones
Senses and Speech Issues:
- Vision and hearing loss
Cardiovascular Conditions:
- Chronic Heart Failure
- Coronary Artery Disease
Digestive Trace Problems:
- Liver Disease
- Inflammatory Bowel Disease (IBS)
Neurological Disorders:
- Multiple Sclerosis
- Cerebral Palsy
- Parkinson’s Disease
- Epilepsy
Blood Disorders:
- Sickle Cell Disease
- Hemophilia
Mental Disorders:
- Depression
- Anxiety
- Schizophrenia
- Autism
- Intellectual Disability

The medical evidence that needs to be shown must be recent and encompass the time period when the disability started to present is:

Physical Examination
Treatment notes or reports
MRI (depending on illness)
CAT Scan (depending on illness)
X-ray (depending on illness)
Mental Health Notes
Blood work notes

If I am being realistic and logical, I know that living with a chronic illness disability may be involved in my life at some point. I mean heck, I know the Multiple Sclerosis is not going to magically disappear, but I do not have to own this until it is absolutely necessary, which is not right now!! I believe if I continue living my life in the best way possible, control my stress (which we all know I am really bad at), and take the medication that is best for my body chemistry, I am doing all I am able to control the progression of this illness! I am only 36 years old and have been living with this illness for almost 18 years, besides the constant pain I deal with; I think I am doing rather well! As you can probably tell it really bothers me when people make the suggestion I go on disability. It has happened way too many times just because people know what I live with, but they really do not know how it affects me. I do my very best to hide my feelings of pain, however people make assumptions! I do not disagree with anyone that is on disability, but I am so darn stubborn and even if my body might be ready, I am not emotionally ready to take that step.

I really want to thank y’all for reading my rant today! This was suggested to me today and as you can tell it did not sit well with me! I am not going to say that I will not ever file for disability, but at this point in my life I am not ready as I feel I am still able to work, even if I am not working full-time right now. My working pretty much part-time hours is just the right now, in a few more weeks or months even I might be fully capable of doing those long full-time hours again.

I hope y’all had a good day! Thank goodness we are half way through the week and the weekend is coming!! Of course I appreciate and even encourage your comments as I promise to respond as quickly as I can! I hope y’all have a wonderful and relaxing evening. As always I am sending y’all LOTS of love and comfort!

Always, Alyssa