Living life with a chronic illness is definitely not easy. But I do my best to push through all the barriers this illness puts in front of me! In my heart and mind, I believe maintaining a positive outlook on all situations in life will carry us through to much better times! I hope you find the information that I provide both helpful and inspirational!
Sunday is “supposed” to be a day to relax and get ready for the week ahead of us, right? Unfortunately, I woke up early this morning with a killer headache/migraine. I am not sure what caused this to happen, but it has left me thinking the “daith” piercing might not help these. I do tend to get sick with a cold or something like that every time there is a weather change, which could explain the body aches and head pain. Needless to say, it was not a good Sunday for me at least.
It did not help that my pain doctor screwed up and NEVER called my refill in for today like she was “supposed” to. I called the pharmacy on Friday afternoon to follow up and ensure the Nurse Practitioner did what she was supposed to. When I learned the Nurse Practitioner did not call this in, I did call the office and was told they were taking care of it. They did NOT! Sadly, we need to make sure our doctors do what they are supposed to, especially with our medications, but I guess it is what it is! I am unsure if this is just an issue with medical professionals in the United States or if it is worldwide!
I hope you have had a nice and relaxing weekend. Do you have issues with your doctors or Nurse Practitioners not doing what they are supposed to do? How do you handle these issues? I already left a voicemail for my doctor’s office to let them know their so-called care is unacceptable. I am not sure they fully understand what it is like to live life in constant pain because if they did I am sure they would not be so incompetent and inconsiderate.
Thank you for visiting my site today. I am looking forward to reading your comments and I will respond as quickly as I can. I feel confident that most of you understand my frustration with my doctor’s office, so I would love to know how you would handle things. I try to always be polite, but I think that seems to make them think I am a pushover and they can screw up. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!
We managed to survive another Monday😊! I made it to my pain management appointment on time and of course, they had me wait 40 minutes before the Nurse Practitioner came in to see me. Big surprise, right!? I was getting frustrated, but when she came into the room, she apologized for making me reschedule my appointment two weeks ago and for the wait. She had a doctor’s appointment that she could not miss, which I can understand. I know that doctors are always running behind schedule and the only reason I can come up with is terrible time management. The hour and a half drive to my appointment were just like I had expected, miserable!
I did check the weather on Sunday night, and it was not calling for rain, but of course, as soon as I walked out the door to my house it started raining. I do not like driving in the rain, especially on the interstate. I have a fear of those big 18-wheeler trucks, so anytime I am near one I go much faster just to get past them. For some reason, the drive home was much faster than the drive to the appointment. The only time traffic came to a standstill was when I crossed the county line to where I live, which always seems to happen, and it does not matter the time of day.
How did your week start? I hope you had a wonderful and stress-free day yesterday and each day that goes by until Friday is fantastic😊! I think throughout our lives we learn many valuable lessons that might not seem that important at the moment, but years later make sense and you implement them into your daily life. We are always going to come across people that may seem unpleasant and even downright miserable, which they might say or do something that insults us or makes us feel disrespect. It is important to never go to their level and maintain your dignity and self-respect. I hope the quote I found will help to remind you to never allow anyone else to forget who you are and the manners you hold close!
Thank you for visiting my site today! I hope you enjoyed this post and the quote sparks something inside you mind and heart. When you have a kind, compassionate, loving, thoughtful, willing to help others way of thinking, it crucial to stand up for yourself in a firm but kind way. I am looking forward to reading your comments and will respond as quickly as I can. Please never forget that I am always sending y’all LOTS of love, comfort support, and MANY positive vibes!
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!
~Terms to know when living with Multiple Sclerosis~
Whether you are newly diagnosed with Multiple Sclerosis or you have been living with MS for many years, you already know it is hard enough living with MS. Then adding learning and remembering an entirely new vocabulary makes things even more challenging, and confusing. I know there are times I still get a little flustered when talking to my neurologist or try explaining to someone the way I am feeling. I am going to share some useful terms to try to help make things somewhat easier to understand. Please keep in mind that I am not a doctor or medical professional, just a person that has lived with MS for more than twenty years.
Fatigue is one term we are probably all too aware of. This is one of the most common and important symptoms relating to MS. It has been suggested by the National Multiple Sclerosis Society, that this affects about 80% of all people living with MS.
Vision problems tend to be the first sign of MS for many people. This was the way the doctors discovered that I had MS. I think I have told y’all before, I had gone to the eye doctor thinking I was going blind in one eye, but the doctor said as gently as he could that he thought I had MS. I was terrified and only 19 years old, so I was still a child with a naïve mind. Inflammation of the optic nerves is knowns as optic neuritis. This can cause several problems, such as blurred vision, eye pain, and/or blind spots.
Brain fog is not a medical condition, but a term that is used to explain certain symptoms affecting the ability to think. Brain fog can make thoughts seem cloudy and you are not able to think clearly. This might cause you to feel confused, disorganized, and/or find it difficult to focus or put thoughts into words. This is also sometimes referred to as MS brain, cog fog, or cotton brain.
Slurred speech is often due to the loss of coordination of the tongue, lip, cheek, and mouth muscles. This loss of coordination may also result in trouble swallowing.
Loopy, which can be best described as feeling tired and/or almost like you are drunk.
Jelly leg, which may be referred to as jell0o legs or noodle legs. When experiencing jelly legs, you are legs will not work correctly.
Hallway pinball is when your walk is weaving from side to side. With MS, your legs may sometimes feel wobbling, weak, and tired. You might lose some control of your legs and when walking down a hallway, forcing you to bounce back and forth from side to side like something you would see on a pinball machine, hence the name.
Wooden leg or legs is a phrase that is used to describe the stiffness in the legs.
Foot drop is a term used to explain weak muscles that make it difficult to lift the front part of your foot or feet as you walk.
One major symptom of MS is chronic or acute pain. Shooting pains are typically acute, which means they come on suddenly, intensely, and then disappear. Pain is something I have battled with for the past 20 years and it does not get easier with each year that passes. However, I will not allow the pain that my life is plagued with bring me down and will always try to continue pushing through it, no matter how awful it gets. Truthfully, the pain does get worse when it rains or I am stressed. Lhermitte’s sign is a type of shooting pain. This is a sudden sensation that mirrors an electric shock passing down the back and into the spine and might radiate out into your arms and legs. This is usually triggered by bending your head forward towards your chest.
MS hug is a type of hug I never want. This term describes a constricting pressure surrounding the chest or waist area. It feels like there is a snake around you and just continues to squeeze or at least that is how it feels to me. The pain involved with the MS hug can range anywhere from mildly annoying to extremely annoying and tends to come along with a burning sensation. An MS hug is caused by spasms of the muscles between the ribs.
Spasticity, also referred to as spazzy. This is a common symptom of MS and can occur in any area of the body, but most commonly is in the legs. With this, the muscles might feel simply tight or can be extremely painful. There are two types of spasticity:
1. Flexor affects the back of the leg and upper thigh.
2. Extensor which affects the front of the upper thigh and inside of the upper leg.
Twitchy means you are experiencing twitching from spasticity.
Considering MS affects the central nervous system, the pins and needles sensation is common and most often felt in the limbs. This has been something I have dealt with for years and it is not easy to deal with. Even though I am on a high amount of Gabapentin, I do still feel this every day of my life.
Thank you for visiting my site today. I hope you found this information helpful or at least made things a little clearer. Believe me when I say, I understand how hard it is to remember every term used in the medical field and I have learned more by sharing this information with y’all. I think we can all continue to learn more, and we can help one another with this learning curve. I would love to read your comments on this post, and I will respond as quickly as I can. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!
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!
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!
Today, I am going to write about two different things. One topic is about today being three weeks since we lost our sweet little girl, Chloe. The second topic is the MRI I am being forced to get. Both topics are weighing heavily on my mind, so I need to write about them because that is how I cope with difficulties with life. The one thing that is and always will be a constant in our lives is challenging times. There is no way to avoid challenges, but we need to be able to address them head-on!
I think most of you already read my post about when we lost Chloe. I cannot believe it has already been three weeks since that precious little girl took her last breath. Even though this loss was extremely painful, and we are still struggling with losing her, we can find some comfort, and peace that we provided her with a wonderful life full of love. The Friday before Chloe passed, we had been informed by her doctor that she probably would not make it through the weekend. Of course, the offer was made we could have put her to sleep, but I am glad we decided not to, and she was able to pass in the comfort of her home and on my lap.
Tomorrow, after work on I am going to get an MRI (Magnetic Resonance Imaging). If I remember correctly, my last MRI was almost three years ago, and while I was dealing with a relapse. Of course, this type of testing is non-invasive and does not include any pain. I am sure most of you have had an MRI in the past, so you know they are uncomfortable, in part because they seem longer than they are, and you cannot move, or the image will need to be done again.
The images generated from an MRI enable doctors to see lesions in the CNS (Central Nervous System). Depending on the type of damage and the scan used, lesions will show up as white or dark spots. An MRI will show damaged areas called lesions, or plaques on the brain or spinal cord and can be used to monitor disease activity or progression.
An MRI with contrast dye can show MS disease activity by showing a pattern consistent with inflammation of active demyelinating lesions. Contrast dye is a substance injected into the vein and used to make certain types of lesions show clearer on the MRI scan. Demyelinating lesions are a kind of lesion that is either new or increasing in size due to demyelination, which is damage to the myelin covering certain nerves. The images obtained with contrast can also indicate areas of permanent damage that will appear as dark holes in the brain.
I have resisted getting another MRI for several years for a few reasons. One reason being, they are insanely expensive, even with insurance. The estimate for the MRI I am getting tomorrow was $2,700. The price does not make sense to me because I do have insurance and almost makes me wonder what the point of is paying for healthcare insurance when I still have an outrageous out-of-pocket for everything. I have said this several times before, but I will say it again, the United States has some of the worst healthcare in the world.
Another reason I have resisted the MRI is that the results do not matter, and I am not changing my MS medication. I feel confident saying the Gilenya is doing what it is supposed to with slowing the progression of my MS. Medications I have been on previously did not work near as well and it could have been because I was not taking them like I was supposed to. I hated doing the medications that involved giving myself shots, so with the Gilenya being oral, it is easier!
The final reason I have been stubborn about getting the MRI is because of COVID. I am still worried about going into the imagining place, but I will be wearing my mask and stay as safe as I can. I am logical enough to know the MRI is needed, but I am not thrilled about going tomorrow. I do not want to hear what the results are because they always make me cry and it is not worth the emotions or stress, so I will have the results shared with my husband.
I hope you are having a nice and safe weekend! I know y’all have busy lives, but I appreciate you taking the time to visit my site today and read what I have written. I look forward to reading your comments and promise to respond to all comments as quickly as I can. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!
On Saturday morning, with an incredibly special thank you to my wonderful husband, I was finally able to get the COVID vaccine. If I had waited for either my specialist or the governor of the state, I live in to get this vaccine, I am sure I would have been waiting until at least summer. I do understand the need for front line workers and elderly individuals to be among the first to get the vaccine. However, I also think people with a weak immune system should be able to get the vaccine as well. Truthfully, it is not just because I have a weak immune system but those with a weak immune system can become deathly ill with this virus. I guess in a sense it is a blessing this vaccine was created so quickly, but it is also awful there are so many people that will have to wait to get the vaccine because not enough were rolled out.
It typically takes 5-10 years to create a vaccine and yet the COVID vaccine was done in less than one year. I know I did just get the vaccine, but one of many reasons why I was so hesitant about getting the COVID vaccine was because it so fast. I was obviously concerned about the side effects it might have that they were unaware of. I do not think there were enough tests completed, but during this pandemic with so many people dying each day, I guess there were not many options.
We have all been living in fear for so many months and most of us have been staying at home to be safe. This past year has created the feeling of isolation, which can feel very lonely. Many of us missed out on celebrating the holidays with our family because of this virus. I do still believe that if everyone had followed the advice from experts in the beginning, things might have been better. There was a lot of misinformation being released from the government, which as y’all already know had me feeling terribly angry. It will not be a surprise to any of you that have been reading my posts during the Trump administration, but I think the way the pandemic was handled or rather not handled was all wrong.
I do passionately believe that if there had been someone else in charge in the beginning of the pandemic, things would have been handled faster and more efficiently. We were all told so many lies about the virus either not being that serious or that the virus was a hoax. Many people never thought anyone could put the lives of other human beings in danger, but that was not the situation. Unfortunately, the former president of the United States did not have any concerns about anyone but his own safely.
I know y’all are not reading this to hear about what I think of the former president or the ways this virus got so out of control, but I do want to let y’all know how my experience was getting the COVID vaccine. I am not going to lie to y’all I was very nervous. As I already said one of my biggest concerns was the possible side effects of a new vaccine. Another concern I had was any potential interactions with my MS medications. The Nurse Practitioner at my specialist’s office told me some of the other patients on Gilenya did already get the vaccine and did not have any side effects. I also called the manufacturer of Gilenya to find out if they heard of anyone taking this medication getting the vaccine and having a bad interaction, but with the vaccine being so new they did not have any information. I am also very aware that no two people will probably experience the medication, the vaccine or the two together the same way, but I had to cover all basis before I got the vaccine.
Before I even got the vaccine, I was already dealing with a nasty headache, but I think it may have been caused by stress and lack of sleep. After I got the vaccine on Saturday morning, my husband and I stopped to get some breakfast because I was so hungry. We just went through the drive-thru and took the food home to eat. My headache did not ease up and I was exhausted, but again, the night before I hardly slept at all. Overall, besides the fatigue and headache, I did experience body aches all weekend. To be completely transparent, I could not tell if the body aches were from the vaccine or the rainy weather we were expecting. On most days I do ache from head to toe, but the aches seemed much more intense.
Much to my surprise, I did not have any severe side effects from the vaccine and even have the second one scheduled for February 13 at 9:00 AM. I prefer to do things like this early in the day and when I have a day or so without having to work just in case, I end up not feeling well. I think another reason I was so terrified of the vaccine is because I never even got the normal flu shot because of possible negative interactions with my MS medicine.
My husband has already had his 2nd COVID vaccine and even after I do as well, we will continue to behave as if we did not get it. We will both continue to wear masks, social distance, and sanitize everything because we both feel that you can never be too safe. It is awful that thousands of people are still dying daily because of this virus and upsetting how many others still refuse to wear a mask. I will never understand why people cannot see the increased numbers of new cases and deaths, and still think a mask is too uncomfortable to wear. In my eyes, a little discomfort for a short amount of time is worth it if it will save lives!
I am not going to be one of those people that says you must get the vaccine because I think you need to be comfortable with this. Nothing I have said in this post is meant to be medical advice and I would still advise you to consult your physician before getting the vaccine. Yes, I think it will keep you safer, but even after getting the vaccine you can still get COVID. I was told if you have had the vaccine and get the virus, symptoms might not be as severe. Unfortunately, with this virus and the vaccine still being new, I do not think anyone really knows answers to be 100% true, but they are working with the information they do have.
I would like to thank you for taking the time to read my post today! I guess this topic can be controversial, but I did want to share my vaccine experience with y’all. I hope you enjoyed what I have shared and hope it will help you to make your own decision to get the vaccine or to not get the vaccine. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!
I might be a few days late for my normal “Let It Go” Friday quote, but I think I am going to go a little off-script today. There are things we can and should let go of, especially when it is from the craziness of the week, but there are also somethings that are not that easy to just simply “let go” of. The few issues I have tried, but failed to find a way to let go of are the hundreds and thousands of death from COVID-19, discrimination, violence, and hatred, the lies heard from those we “should” be able to trust, and the healthcare or lack thereof in the United States.
I am having a hard time not letting ALL the deaths due to COVID-19 bother me. I guess I can’t understand why we are all still in the same or even the worst situation since we were at the beginning of the year. This isn’t a political thing, this is a life and death situation and having the good common sense to do what is necessary. Wearing a mask isn’t fun and even feels a little suffocating, but it can be life-saving. Or even just social distancing should not be that difficult, but some seem to think it is. It is way past time to follow the advice from the experts. So, please when you leave the safety of your house, wear a mask and social distance!
I will also never understand why there is SO much hatred in this world which is spreading faster than a wildfire. Discrimination is nothing new, as it has been going on for decades now. The color of another person’s skin, who they love, where they are from or anything else should not matter! Forgive me for saying this, but I do think the amount of hatred escalated much more over the past four years. I mean, we have heard the president of the United States call COVID-19 the Chinese virus. We have also heard this same person talk negatively about people from other countries and of other nationalities, which is very wrong, but that is only my opinion.
There has been a widespread amount of violence over the past few years as well and honestly, it goes back even further than this. Again, this only my opinion and it is okay if you disagree with me, but violence does not do anything productive and only creates more problems. I wish that there would come a day where we can all get along and join together for the good of humanity. I guess maybe I am just naïve, but there is no reason why everyone can’t unite and help one another during troubling times.
The United States is one of the richest countries in the world, but yet the healthcare is a complete disgrace. The United States is the only developed country that does not offer the citizens free healthcare and instead allows the insurance companies to charge an insane amount of money, and that money still does not cover the policy holder’s entire amount. For those of us that have several medications we need to take daily, the pharmaceutical companies charge a ridiculous amount for each prescription. If it was not for the Gilenya Go Program, my medication for one month would cost more than my car and I don’t mean just one car payment, I mean the full amount of the car, which I would never be able to afford it. The Gilenya for only one month costs over $8,000, which is ridiculous! Unfortunately, without the Gilenya, I am afraid my condition would deteriorate rapidly.
After reading all of this, can any of you suggest a way to let go of these things? I have tried, but I am not able to. I am also one of those people, as y’all probably already know, who wears my heart on my sleeve. My heart breaks for what so many people have gone through and I wish there was something I could do to help, but I am only one person.
Thank you for reading this post, which is a little more of a rant of my feelings and nowhere near the positive way I am normally. Change is something that is necessary and I have no idea how to implement the changes that are required.I do hope you had a nice and relaxing weekend! I am looking forward to reading your comments and promise to respond as quickly as I can. Thankfully, my husband and I do not have two- legged children that we have to worry about going to school; our four- legged children never leave the house and are always safe! I am a chronic worrier and I do not think I could handle having any more people to worry about. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!
We can say, one day down and four to go! How has your week started off? I hope it is going well and you are feeling as good as you possibly can! Y’all know I had to go yesterday for blood work and it was not all that bad. The worst part of the entire appointment was, nothing went the way it should have because the doctor did not put the codes on the paperwork that was required. Things happen and we all know nothing goes the way it should with medical things and doctors do not listen!
As we are entering the second day of our week, we need to do our best to remain optimistic and understanding. Things are not easy for so many people right now and I do know we should not stay in the negative land of COVID-19, but we do need to be practical and do what we can to stay safe. I hope the quote I am sharing will give you a sense of tranquility! I am looking forward to reading your amazing comments and I will respond as quickly as I possibly can!
I want to thank you for visiting my site today and I hope you have a wonderful and safe day! The week has just begun and hopefully it is going great and only getting better each day! Please never forget that I am always sending y’all LOTS of love, comfort, support, and many positive vibes!