20 Plus Years….

Posted on October 30, 2022 by Positively Alyssa

For the past 20-plus years, I have been forced to live with an incurable illness, Multiple Sclerosis. There have been various challenges I have encountered during the years, but the most frustrating has been how extremely unpredictable this illness is. It does not seem to matter if I follow my doctor’s recommendations and take the necessary medication daily, things can still go wrong. I do realize that I am one of the lucky ones living with this illness as it has not caused me to be disabled and required to use a wheelchair or a cane, but it has caused me many issues.

Of course, I have learned to deal with the pain that I feel 24 hours a day, 7 days a week, 365 days a year as much as anyone can. Lately, the issue that has made me nervous is the increase in dizziness. This is an issue I have dealt with randomly before, but it has been way too frequently over the past few weeks. I have not let my doctor know about the increased dizziness and not sure that I am going to unless it gets worst. After all, I already know what this could mean and do not want her sending me for an MRI or pushing me to take steroids because both make me miserable.

In the past dizziness was a sign there were new or active lesions on my brain. I think to avoid increased levels of stress. I would rather not have a doctor tell me what I already feel like I know because all that would do is make my stress skyrocket and then cause even more issues. Considering I have lived with MS for so many years, I know the most important thing to do now is to, limit and reduce my stress levels, which will hopefully make things better with the dizziness.

I think taking the right steps to reduce stress is going to be the best course of action. I recently did a post about the benefits of journaling, so I am going to try doing this daily and still blog. Writing is a great way to reduce stress and express positive thoughts and vent negative emotions. Now that the temperatures are cooler, I am going to start crocheting again because this has always been relaxing for me. I would love to be able to donate the blankets I make to those who need them to stay warm.

Do you have any specific things you do to reduce stress and relax? We are all unique and have different ways to handle issues in life, but they are all important. No two people are the same, which is what makes the world so interesting. I believe if we were all the same, the world would be boring and not at all interesting. It would be great if we could all learn to accept our differences and still be kind and understanding to one another because this would make the world a better place.

Thank you for visiting my site today. I hope you enjoyed what I have shared, and you are enjoying your weekend. I am looking forward to reading your comments and I will respond as quickly as I possibly can. Thankfully, we do still have one day left to enjoy the weekend and I hope you can do so safely. 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

Posted on February 6, 2022 by Positively Alyssa

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

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

Evil headache/migraine

Posted on March 18, 2020 by Positively Alyssa

I have lived with Multiple Sclerosis for almost 20 VERY long years. During this time I have experienced pain, numbness, dizziness, vision problems, the infamous MS hug, and so much more. The only thing that can really get me down and unable to do anything is the headaches or migraines whatever they may be.

Yesterday all I wanted to do was write, but I wasn’t able to due to a nasty and quite evil migraine. While we are going through this awful pandemic of the coronavirus, I have been told by two great women, my mother and mother- in-law, I should stay in the house because of my weak immune system. While I do understand that grocery stores and other places that have a lot of people aren’t a good idea for me, I hate knowing I can’t do anything. I guess it would be much easier if I was making this decision and it not be forced on me. Even the morons in the government are saying people with underlying issues should not go into public places. It is all I can do to not disobey the government idiots, but my health is more important than my distaste of them.

Thankfully, today my headache/migraine is much better and I am able to write again. I plan to write and read as much as I can while my headache/migraine is at bay. I only hope it stays this way because it is the only thing I can do that I enjoy.

I do want to share a little information about migraines with y’all. All the information I am providing is the information the Migraine Foundation had discovered.

Migraines are the 3^rd most prevalent illness worldwide
1 in 4 households have someone with migraines
Migraine sufferers are 18% women, 6% men, and 10% children
Migraines are most common between the ages of 18 and 44
90% of migraine suffers have a family history

Migraines are more than just a bad headache and suffer from more symptoms including

Typically a severe throbbing recurring pain, usually on one side of the head, about 1/3 of attacks will be on both sides of the head
Attacks often have one or more of the following disabling symptoms: visual disturbances, nausea, vomiting, dizziness, extreme sensitivity to sound, light, touch, and smell, and tingling or numbness in facial extremities
About 25% of migraine sufferers also have a visual disturbance called an aura,
which usually lasts less than an hour
15-20% of attacks have other neurological symptoms before the actual head pain starts
Attacks usually last between 4 and 72 hours

Most people don’t understand how serious and incapacitating a migraine can be

6^th most disabling illness worldwide
Every 10 seconds, someone in the United States goes to the emergency room with complaints of head pain, and approximately 1.2 million visits are for acute migraine attacks
Most sufferers experiences attacks one for twice monthly, more than 4 million people have chronic daily migraines, with at least 15 migraines a day each month
More than 90% of sufferers are unable to function during their migraines

Migraine is a chronic disease that significantly diminishes a person’s quality of life

More than 4 million adults experience chronic daily migraine
Medication overuse is the most common reason why episodic migraine turns chronic
Depression, anxiety, and sleep disturbances are common for migraines sufferers
Over 20% of chronic migraine sufferers are disabled

I do hope this information was helpful for you, but I also hope non of you ever have to experiences this miserable pain. This probably won’t sound great, but if I had a choice between the pain I was in yesterday and death, I think death would have won. Like I already said, I can deal with pain and keep going in life, but headaches/migraines will keep me in bed with an ice pack that melts too soon, unable to eat, and an irritability that makes me just as evil as the pain.

Thank you for visiting my site today. I appreciate you taking the time to read and will look forward to your comment. Please never forget that I am always sending y’all LOTS of love , comfort, and many positive vibes!

Always, Alyssa

What is Multiple Sclerosis?

Posted on March 4, 2020 by Positively Alyssa

What is Multiple Sclerosis?

March is Multiple Sclerosis (MS) Awareness Month. Multiple Sclerosis is an incurable neurological condition that affects the brain, spinal cord, and optic nerves. The body’s immune system attacks the protective myelin sheaths that cover the nerve fibers which cause areas of scarring, known as sclerosis. The immune system also attacks and destroys the fatty myelin coating that surrounds and insulates nerve cells which is a process known as demyelination.

Experts suggest there being 250,000-350,000 people in the United States currently living with this illness. There is an indication the rate of the disease is increasing regularly in the 20^th century with approximately 200 new cases each week. Those of Northern European descent have a higher risk for the disease, but Native Americans of North and South America and Asian Americans are at a lower risk. The disease is much more common in colder climates.

There are four types of Multiple Sclerosis, all having different characteristics.

Relapsing-Remitting Multiple Sclerosis (RRMS). This is the most common form, being that 85% of those with MS are initially diagnosed with. Patients with this form will have relapses and periods of stability in between the relapses. Relapses are the episodes when new or worsening symptoms that are not caused by fever or infection appear. These episodes typically lase more than 48-hours. Between relapses are periods of remission where there is no clinical evidence of disease progression. Periods of remission can last for years, but this can range from person to person.
Secondary-Progressive Multiple Sclerosis (SPMS) can basically be considered the second phase of the disease. Most people that are initially diagnosed with RRMS will transition to this form at some point. Symptoms with SPMS will worsen steadily over time with or without occurrences of relapses or remission. There may or may not be times of relapses caused by inflammation, but will continue towards the progressive phase indicating nerve damage or loss. With this form of MS, the disability only continues to get worse.
Primary-Progressive Multiple Sclerosis (PPMS) is less common than the other forms and only affects 10-15% of those with MS. On average people with PPMS start having symptoms between 35-39 years old. There is a slowly worsening of symptoms from the beginning with no relapses or remissions. With this type of MS there can be times of short-term, but temporary, minor improvements, however the decline of neurologic progression is constant. Symptoms of PPMS include pain, electric-shock-sensation running down the back and limbs when the neck is bent, trouble walking, vision problems, muscle weakness, trouble balancing, paralysis, numbness, prickling feeling, dizziness, shakiness, trouble thinking clearly, mood changes, depression, sexual problems, and trouble with bowel and bladder control.
Progressive-Relapsing Multiple Sclerosis (PRMS) is a rare form of MS. There will be a steadily worsening of the state of the disease from the beginning with acute relapses, but no remission will occur. The symptoms of this form are the same as those with PPMS.

The first neurologic event suggesting MS is known as Clinically Isolated Syndrome (CIS), which usually lasts at least 24-hours. The symptoms will indicate a single lesion (Monofocal) or more than one lesion (Multi-focal) in the central nervous system (CNS). There are many symptoms involved with Multiple Sclerosis some being common and others being less common.

Common Symptoms Associated with Multiple Sclerosis

Fatigue (Mental and Physical)
Pain
Tingling or burning sensation in the arms, legs, trunk of body or face
Vision issues (blurred or loss of vision)
Stiff muscles
Attention and memory issues
Dizziness, vertigo, and clumsiness
Trouble walking

Less Common Symptoms Associated with Multiple Sclerosis

Migraines
Speech problems
Body tremors
Seizures
Hearing loss
Itching for no reason
Mood changes such as depression or euphoria
Ability to concentrate or multi-task effectively
Difficulty making decisions, planning or prioritizing

Secondary Symptoms that can develop

Bladder and bowel problems
Difficulty breathing
Osteoporosis
Muscle weakness
Difficulty swallowing
Sexual health issues

With all the possible symptoms one can experience, there are ways to manage most of them. Bladder control can be something one can experience and this can be rather embarrassing if it happens out in public, but there some suggested strategies to manage this.

Drink enough fluids. The kidneys need at least 2 liters of water daily in order to flush waste products. Do not try rationing intake because this could increase the risk of infection.
Time your drinks. Try to spread fluid intake evenly throughout the day.
Limited caffeine and alcohol intake. Both of these can increase the amount of urination.
Special exercises such as exercises that strengthen the pelvic floor.
Continence aids such as disposable pad can be beneficial.
Medication can be provided to reduce the urgency to urinate and help the bladder empty itself.

Pain with MS can be primarily due to the neurologic condition. Pain could also be due to secondary conditions, such as musculoskeletal issues as a result of altered posture or spasticity. The weakening of leg muscles tends to trigger aches and pain in the back or knees. The unfortunate truth is, people with Multiple Sclerosis can feel pain anywhere, but there are ways to help manage the pain which includes medication, physical therapy, and relaxation techniques.

Every person that lives with Multiple Sclerosis is different and deals with this illness in a way that serves them best. A person can experience similar issues as another but at the end of the day, we all handle it differently. Each symptom, relapse, remission, and medication affects each person vastly different but yet can understand what another person is going through. It is vital that no matter what stage the illness is, there needs to be an understanding of what our limitations are and to never push beyond that.

Thank you for visiting my site today! I hope the information I provided to you was helpful. There is a chance I have stated the same thing in previous years, but I do feel it is important for us to spread as much awareness as we can because it does not seem like this illness is going away anytime soon. I do want to believe that someday in our life time there will be a cure, but until then we must continue to live our lives the best we can. I hope you are having a great day and feeling the best you can. Please never forget that I am always sending y’all LOTS of love , comfort, and many positive vibes!

Always, Alyssa

P.S I will be doing additional posts about MS during the month, but felt they needed to be separate posts because there is SO much information available. The crazy thing is, no matter how many years I have lived with MS, reading about it is a little upsetting.

The Disability Award

Posted on May 4, 2019 by Positively Alyssa

I was at a complete loss for words when I learned that Melinda at https://lookingforthelight.blog/, choose to nominated me for this award because there are so many others with amazing stories of their own. I never in a million years would have thought that I would have such an honor to be nominated for The Disability Award, in part because I hate admitting to having a disability. I will admit that when I read this, it did bring on many emotions and tears, but I then was delighted to be part of this award. Melinda has an amazing site of her own with fabulous knowledge she continues to share. She is dedicated to helping others with disabilities, chronic illnesses and all that comes along with those struggles. Melinda has also gone above and beyond with helping me reblog my posts when I am not able to. Thank you so much Melinda for this amazing opportunity and please anyone that hasn’t viewed her site, check her out and I know you will be happy you did so!

To my Nominees: Please answer the questions, choose your own nominees, and develop your own set of questions. Honestly, Melinda’s questions were so amazing that I wanted to use the same questions, but y’all are of course can choose your own questions if you want. Please display the award badge on your blog. I also do not want to add any pressure onto your already busy life, so if you choose to not participate in this award, I completely understand! I will of course LOVE reading your answers and seeing who you decide to nominate for this award!

My amazing nominees are:

https://msmommy.blog/

invisiblyme.com

https://reclaiminghope.blog/

https://funshinesunshineblog.wordpress.com/

https://mymsrollercoasterride.wordpress.com/

https://makingitthroughtherain.com/

https://brokenlifesite.wordpress.com/

My questions from Melinda are:

What was the first sign of your illness?

The first sign I encountered to this not so fun illness was I lost vision in my left eye. I had absolutely NO idea what was going on and went to my eye doctor. Not only was I in complete and total shock, but I was horrified when of all people an eye doctor told me he suspected MS.

What is your worst symptom and how do you cope with it?

It is a little difficult to say which of the various symptoms I live with being worst because none of them is at all easy. However, the constant pain can be quite trying and cause me to not do as much as before. I feel that due to pain I end up being forced to limit time on my feet and take breaks more than before.

What one thing about you has changed, as a result of your struggles?

I think the only thing about me that has changed since I was diagnosed with Multiple Sclerosis is I have learned to push past pain. I was always strong with this type of issue, but now that I have pain every minute of every day the strength has only grown.

What words of advice or encouragement would you give to someone else suffering?

The advice and words of encouragement I would offer is, let everyone know they are not allow and never will be. This is something I wish I was told all those years ago because being diagnosed with a chronic illness can be a very lonely feeling.

Name one good thing that has come out of having a chronic illness.

It seems crazy to say something good that has come out of this chronic illness, but I would say it has taught me to never give up and to always know others struggle in life and need someone to understand. I have made some amazing friends through the blogging community that live with something similar and we are there for one another.

What one thing do you disagree with that is widely accepted as true about your condition?

There are a few things that I strongly disagree with regarding my condition, but I am only going to share two of them. One is that heat is bad for me and cold is better. The thing is a heating pad gives me a lot of relief. Cold weather causes me to tense up and hurt WAY more. I do think being in the heat too long is not good, but also being cold too long is not good either. I also think with it being 2019 there must be a cure, but the pharmaceutical companies do not want it released because they would not make as much money off ALL of our MANY prescriptions.

If you could change only one aspect of your illness, what would it be?

There are many things I wish I could change about this illness, but the main one is that I wish it did not happen to anyone! No one deserves to face the difficulties any chronic illness imposes on their life, well unless they want to mess with the abilities of insurance we should have!

Name the one thing that works best for you for symptom relief.

The funny this is, even though all doctors tell me heat is horrible for me a heating pad on my legs or back eases the pain for a short amount of time. Of course, pain medication does help the pain, but I refuse to allow myself to be another statistic and become addicted.

Based on your experience, what is one thing that you would tell someone newly diagnosed with chronic illness?

The one thing I would tell someone that was newly diagnosed is something I wish I had been told is, do your own research and learn as much as you can about whatever illness you were diagnosed with. The truth is we are the only one that knows our body better than anyone ever could because no amount of schooling could teach that!

Why did you start blogging?

There were several reasons why I wanted to start blogging. One reason was to be an advocate to illnesses and spread the awareness that is needed. Another reason is because of the pure love I have for writing and I also want to be able to help as many people as I can to know they are not alone in this battle.

Thank y’all for stopping by my site today and thank you to my nominees for being the incredible people you are! Life isn’t easy and living with a chronic illness tries to make things even more difficult, but together we prove these illnesses wrong! I hope if y’all have some free time you will check out my nominees sites and definitely view Melinda’s! I know you will never be disappointment you did so and will feel a sense of encouragement by reading what these individuals share! Thank you once again Melinda for all you do for everyone and the added help you have offered me!

I hope your weekend has started off great and only continues to get better. I do always appreciate the support you offer by reading and commenting on my posts. Never forget that I am always sending y’all LOTS of love , comfort and many positive vibes!

Always, Alyssa

Accepting realities!

Posted on April 21, 2019 by Positively Alyssa

Something that I have had a really hard time admitting and accepting is that Multiple Sclerosis is a disability. Whenever I have applied for a job, there is always that annoying question “Do have or have you had a disability.” I mean what kind of BS question is that to ask someone? Of course I want to say “NO”, but Multiple Sclerosis is listed as a disability on the darn application and I can’t falsify anything on an application because that could result in me being disqualified for a position I applied for and want. I think this is so invasive and completely ridiculous, but I guess it is what it is in life!

For some strange reason the words disabled and disability shatter my heart into a million pieces and cause me to feel like a useless failure . I do realize how irrational this may sound, but that is how I have been feeling. It made me incredibly sad when I had a difficult time walking through a store last weekend because my legs and feet were experiencing SO much pain and weakness. All
I wanted to do was cry, but I couldn’t because I view that as letting this illness win the never-ending battle we have been in for years and that will NEVER be an option for me!!

I know I already shared with y’all that I figured out I am gluten-intolerant without the expensive tests a doctor would want to run. It seems like a punishment to have to deal with the issues Multiple Sclerosis comes along with and then add gluten-intolerant to the mix seems quite unfair. I know we all deal with random issues and keep on moving forward because we do not have a choice. I am also very aware that many others deal with SO many other struggles that are far worse than what I am, so I am really not complaining. I am going to share more about this gluten-intolerant situation in a later post.

The truth is, because I am always so exhausted during the week after working 8 hours every day of the week, I often don’t have the energy to write as much as I would like to. I end up with so many random thoughts running around like crazy in my mind; it gets so hard to keep track of them all and have those thoughts come together for a good read and one that I am proud of.

For the past week or so, I have been experiencing an increase in the number of horrible dizzy/black-out spells. I have had these issues happen before, but never so many in just one day. At least 2 days last week, there were several moments when the room went completely dark and there NO were sounds at all, which under other circumstances would be great. There was one time I was talking with a co-worker at her desk about work and all of sudden I felt weak, light-headed, hot as hell and dizzy. Luckily I was standing very close to the wall, which kept me standing upright. It might have been pretty embarrassing if I all of sudden fell to the floor at this new job.

I am not really sure which of these issues are more terrifying; dizzy spells, black-out moments or the combination of the two. Of course I would say the combination of dizziness and black-out would the most terrifying because you are dealing two different disturbing issues at the same time. I have dealt with dizzy spells for so many years now, but I have found ways that help me limit the duration of my dizziness, most of the time at least.

Truthfully my experiences with black-out spells aren’t plentiful in comparison to dizziness, but I have enough sense and knowledge to understand how horribly upsetting they can be. I remember a few years ago there was a period of time when I had a several short black-outs throughout the week, but they weren’t anywhere near as severe as they are now. I am not sure if its stress, lack of sleep, weather changes or something else. The list of possible reasons really could go on and on and on, but I really just wish they were STOP!

Thank you so much for stopping by my site today. I will never pressure you to leave a comment, but I do encourage your comments if that makes any sense, but I know your thoughts will be amazing. I promise to respond to your comments as quickly as I can! I hope you are feeling well and enjoying your weekend! Sometimes I think the best part of a weekend isn’t getting out and staying busy, but not having any plans at all so there aren’t any time requirements. My days are set in stone during the week with work, which I tend to strongly dislike, but I guess it is just the life of adulthood. I enjoy spending my 2 very short weekend days living in the moment and not doing anything that might cause unnecessary stress. Please remember that I am always sending y’all LOTS of love , comfort and many positive vibes!

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

My Letter to Multiple Sclerosis

Posted on May 27, 2018 by Positively Alyssa

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

Dear my not so loving friend Multiple Sclerosis,

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

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

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

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

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

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

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

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

Always, Alyssa

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