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!
~Let Us Begin This Week With All Positive Thoughts~
Happy Monday y’all! I hope you had a nice, relaxing, and safe weekend, and you are ready to begin this new week. My weekend was uneventful which is a great way to spend the weekend or at least it is for me. The only bad part of the weekend was I could hardly sleep but 2 hours on Friday night, so Saturday I was exhausted. The crazier thing was, there was no reason for me not to sleep Friday night. Normally, when I have sleepless nights I am worried about something or stressed and I do not think I was, at least not consciously.
As our week begins and the weekend has ended I always feel we might need a little motivation to get us started in the best way possible. I try to share quotes that I enjoy, but do hope the one I am sharing today will serve you with the motivation and inspiration you need. Most of us think of Jim Carey as a comedian, but he can be insightful like this quote indicates. Of course, I hope your week begins well and continues to improve with each day that passes. I am looking forward to reading your comments and promise to respond as quickly as I can, which will probably be when I am out of work.
As y’all know March is Multiple Sclerosis Awareness Month and I am planning to do a few more posts about MS. I have my virtual appointment with my neurologist tomorrow afternoon and I am hoping we will be discussing the MRI I had several weeks ago. In the past, I was always nervous about hearing the results, but I did read the report and it looked to me as a good report with no terrible changes. I guess I will hear what the neurologist says and I will keep y’all informed.
Thank you for visiting my site today! I hope you have a great and safe day will very little unnecessary stress. I have learned over the years that most things I stress over are not as important as I think they are and should just let go of these things. I cannot say I always let go of things, but I am trying. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!
Good afternoon y’all! I was not able to do my normal Let It Go Friday post, but do have an even better one to share with y’all! I hope you had a good week, and you are ready to enjoy your weekend safely! Do y’all have any plans for the weekend? We were thinking about going to look at kittens, but I think we are putting this on hold for a little while. We might hold off for summertime because there is a ragdoll mama that will be having kittens and they will be available!
There is always so much bad news we hear about daily, so when we finally get good news it is something to celebrate and share! I believe I told y’all that I was waiting for my reapproval for my Gilenya copay assistance. This medication had worked very well keeping my Multiple Sclerosis at bay, which is wonderful. The only problem with this medication is the cost. With insurance, but without copay assistance, this medication would cost $8,000 per month. Logically, who can afford something this outrageous?
I had mailed the application to the Gilenya Go Program about 2 weeks ago because I do not have a fax machine at home, we all know how slow mail is! Anyways, last week I received a request for additional information from the Gilenya Go Program. Thankfully, while I was at my doctor’s appointment last week, the nice ladies there faxed the paperwork that was requested for me. Today, I heard the BEST news I have heard all month, and my application was approved. Instead of paying $8,000 per month for this medication, I will pay nothing!
Of course, I have not had an appointment with my Neurologist to go over the results from my MRI, but I did read the report. From what I read and not having a medical license, it appeared that the results were stable, and nothing had changed from the previous MRI I had a few years ago. In my naïve and not professional thoughts, no change is much better than changes for the worst! This is all thanks to the Gilenya that I take daily for my MS. Previously, after I had an MRI, I dreaded the results because there were normally negative results.
I have an appointment on March 23rd to hear my neurologist talk about the results in medical terms. I am not dreading this appointment because from what I read, my results are not awful and remaining better than they were in the past! I am just extremely relieved that my application with the Gilenya Go Program was approved and I will be able to get the medication every month, without any delays or problems!
Thank you for stopping by my site today! I know we are all busy and I appreciate you taking the time to read what I wrong, and share your amazing comments. I hope you have a great Friday and a fantastic, and safe weekend! Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!
After work yesterday I went to have my dreaded MRI. I have been dreading getting another MRI for about three years, but finally did not have a choice and had to get it. I already mentioned that the MRI is insanely expensive because of our ridiculous healthcare in the United States. I think I have had an issue with the healthcare issue for a long time because we are the ONLY developed country that does not have “free healthcare”. It seems that many Americans believe that free healthcare is wrong, and I cannot understand their logic. I have heard from many people living in countries that do have free healthcare and they love it.
The complaint I have heard about free healthcare is you have to wait a long time before seeing a specialist or having a procedure, such as an MRI. The thought process is ludicrous and typically the thoughts of someone that believes what the politicians are saying, which is mostly lies.
Anyways, my MRI was not that bad. It was EXCEPTIONALLY long and LOUD. One of the images felt more like a small earthquake because it felt like the entire machine was shaking vigorously. The other images had annoying sounds that were way too loud. I can say the two radiology techs were nice and told me how long each image would take. Midway through the MRI, they pulled me out to add the contrast, and at that time, I told them that one of my hands and both feet and my back were numb. They laughed and said it was probably because I was trying too hard to stay still, which was true, but I did not want to be there any longer than I had to for images to be taken again. I did ask one of the techs if anyone had ever told him that he caused headaches with all the loud noises, he just laughed and said he had heard that a few times before!
I am sure many of you have had an MRI before and know how not comfortable it is. Did you ever notice the moment you are in the machine and told to stay still, everything itches! My hair kept blowing in my face and making my nose itch, and almost every part of my body itched as well. I think it is just because I was told to stay still, and I am not good at being still for long periods. The good news is, I was told I did well, and all images were taken the way they needed to be.
I do know that I am not excited about hearing the results and would prefer my specialist just tell my husband. I figure he would be able to give me the news better if it is not good than the doctor could. I tend to think that most neurologists have the personality of a fly if that! I did have a neurologist previously that was amazing and truly kind, but he understood me and my personality because I reminded him of his daughter. I cannot begin to say how much I miss him! I think I like the Nurse Practitioner at my new specialist office better than the actual doctor, but that is how I normally am.
I am glad the MRI is over and hopefully will not need to do it again for many years! I went about three years before this last one and hopefully can do that again! When I do know what the results of the MRI are, I will do a post about it and share the news, whether it is good or bad news. Let us just hope for the best!
Thank you for visiting my site today. I know I normally do “Tranquil Tuesday”, but felt it was better to tell you about the MRI experience. Overall, the MRI was not as awful as I was making it out to be, but it did cause a mild headache. I hope you are having a good week and staying as safe as you possibly can. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!
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!
How has your week been so far? My week has been an emotional roller-coaster. I told you earlier in the week that our older cat, Chloe, had been diagnosed with early-stage kidney failure a few years ago and seemed to not be doing so well in the past few days. Initially, her doctor’s appointment was scheduled for today, but on Tuesday night I noticed what looked to be blood in the litter box, so I called the vet frantic and requested her an earlier appointment. My husband and I took her to the vet yesterday morning to have her checked out. They drew blood, sent the blood for testing, and gave her fluids, and sent her home with us. I am supposed to hear from the doctor today before noon and if I do not, believe me, I will call them! The one thing the doctor said is that Chloe is getting older and with her kidney failure, she might also have a thyroid issue, which is treatable. Waiting for answers is torture, but hopefully, we will not get awful news.
Considering, this week has been difficult for me at least, I think we could use a little pick me up to get us through one final day before the weekend begins! I am hopeful that the quote I am sharing with y’all today, will provide you with the energy and optimism to get you through to the weekend. We all go through challenging and even tragic times in our lives, but I have confidence that we can make it through just about anything. I do believe that the combination of love and peace provides us with strength.
None of you are going to be surprised, but I do not have any plans for the weekend. Do any of you have anything planned? Whatever you decide to do this weekend, please make sure you stay as safe as you possibly can! I am looking forward to a quiet and peaceful weekend giving me the time to give Chloe LOTS of love. I will also plan on trying to help my mother through the difficult news she received on Wednesday. Once we got home from Chloe’s appointment, my mother called to tell me her mother’s doctor gave her a month to live. I feel for my mother, but her mother (yes, my grandmother) and I are not and have never been close.
Thank you for visiting my site today. I hope you enjoyed the quote I shared and I look forward to reading your comments. I do 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!!
Happy Friday Eve y’all! It has been a crazy and long week, but we have almost made it to the weekend! I was supposed to have my virtual appointment today with my neurologist, but she rescheduled it because I did not get my MRI. The reason I did not get the MRI done is because of COVID-19 and I was not ready to take any unnecessary chances. I am not going to lie to y’all I was and still am a little frustrated with her about this because she “should” understand that with my weak immune system, I am HIGH risk. Even though my doctor pretty much failed me, my husband came through for me. He went to get his second COVID vaccine shot on Wednesday and told the right person about my situation. This lady is an angel and sent me an invite for the vaccine, which I will be getting my first shot on Saturday! It is amazing how kind some people can be, this person does not know either one of us and has done something very remarkable. Even though there is a lot of hate in the world, people like this one person has restored my faith in humanity!
We only have one day left of this week and I don’t know about y’all, but I could use a little pick me up. Of course, part of the reason I say this is because I am disappointed with the neurologist, but I am also ready to be able to sleep in. I hope the quote that I am sharing with y’all today will be the pick me up you might need! No matter what we have seen go on in the world, please know even though they are rare, there are still some good, caring, and compassionate people that exist! Also, please remember that hope is something that is powerful and makes a huge difference in our lives!
How have y’all been feeling lately? And, how has your week been? My plans for the weekend are to get the first COVID vaccine on Saturday morning and have groceries delivered at some point, but other than that just relaxing and recuperating from this past week. We have all seen the news and the terrible things that have taken place, but we are all better than to get caught up in the massive levels of hate. Now more than ever, it is crucial to spread as much love, understanding, compassion, and kindness to as many as we can. Whatever your plans are for the weekend, please just remember to stay safe!
Thank you for visiting my site today! We all deserve a break from the craziness and to be able to enjoy our lives. I hope y’all already know this, but if you did not know how much I appreciate your continued support and kindness. I love reading your comments and even though I might not respond quickly, I can promise I will as soon as I can. Please never forget that I am always sending y’all LOTS of love, compassion, support, and MANY positive vibes!
Happy Friday y’all! I hope you had a great week and you are looking forward to enjoying your weekend, safely of course! Do you have anything planned for the weekend? No surprise to anyone, I have no plans at all. Truthfully, I really like a weekend with no plans involved and not just because I need a break after the long week, but also because it is SO much safer! I do want to try writing a post about the doctor’s appointment I had yesterday and about celebrating holidays during a pandemic.
Now that we are at the end of this week, some of us may have some pent up frustrations from the week to let go of. Y’all already know that I do not think we should ever cloud our very short weekends with the dark feelings we had during the week. With the massive amount of negativity that is bleeding through the states, oceans, and countries, we need to try our best to distance ourselves from the negative people and things! I hope the quote I am sharing today will help you let go of the problems, avoid overly negative people, and enjoy your weekend with a positive outlook on life! Negative emotions are contagious, but so are positive emotions!
Thank you for visiting my site today! I hope you have good day and a great, and safe weekend! I would love to know how your week was and also what you thought about the quote I shared today! Now, I did say I do not have any plans for the weekend, especially out of the house, but I would love to continue crocheting the blanket I am making for my mother and her boyfriend and write a few posts. I do want to ask y’all to please stay safe this weekend! Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!
We have almost made it through another week y’all! How has your week been? Against my good judgement, I have to go to a doctor’s appointment today. I have tried for 2 weeks to get this appointment to be virtual, but they just would not give into my request. My reason for being so against this is because of how awful COVID numbers are in the state I live in. Considering I hardly have an immune system, I am pretty upset and nervous about this appointment, but as always I will be very careful. It really doesn’t make sense to me because when this pandemic first started and cases were not very high, this doctor did do virtual appointments and now that numbers are escalating they refuse.
The good new is, we only have one more day of the week and we will have made it to the weekend! I don’t know about y’all, but I definitely could use a little Pick Me Up. I do hope the quote I am sharing with y’all today will provide you with the pick me up you need to get through the final day of the week! I would love to read your thoughts though because I know they will be great and insightful!
I hope you have a lovely and safe day! I will try tonight to do a post about how my doctor’s appointment went today, but it will depend on how I feel when I get home. This doctor is about an hour and a half away from my house and I really do not like driving. What makes this drive even worse is the fact that people can’t drive and there is SO much road construction. Even though I do not feel comfortable going to the office and dread driving, it still might be nice to get out of the house for a little while. I have felt very isolated and frustrated being home ALL the time.
Thank you for visiting my site today! Try to not stress too much about anything too much today because nothing is worth that much of your time. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!
Many of you already know that I have battled my fight with Multiple Sclerosis for going on 20 years now. Most days I can’t even believe it has been that long and yet I still remember the day I heard the doctor say the words to me “Alyssa, you have Multiple Sclerosis.”I was a 19- year- old girl, alone in the exam room, and was in complete shock. At the time of my diagnosis, I was naïve, scared, and did not know what my life was going to be like. I only knew one person that had MS and she was in a wheelchair. Being so young and clueless I thought I was going to be diagnosed, and then bound to a wheelchair, and then death. I know how ridiculous that sounds now because I have a better understanding of this disease.
Of course, the past 20 years have come with many ups and downs, but not only am I still here to talk about it and hopefully help others living with chronic illnesses. Yes, I do live with various issues, but I have learned to live a fairly normal and full life with all of it. I think it is important to understand that no matter what our struggles are in life, we can learn to make the most of it. Life is short and no one ever said it was going to be easy. I think the more struggles we overcome, the stronger we are.
It has been a while since I have written about Multiple Sclerosis and considering I had an appointment a little more than a week ago with my new neurologist; it might be a good time to write a little about what I deal with day in and day out with Multiple Sclerosis. The real reason I do not write much about it anymore is I do not think it is good to dwell on things we have no control over, but it is important to help others that do not have MS understand what it is all about and others that live with this unpredictable disease to know they are not alone. I say this because I remember when I was first diagnosed, I felt so incredibly and painfully alone.
One of the most important things when living with any chronic illness is finding a specialist that you trust and can work well with. Over my years with Multiple Sclerosis, I have had my fair share of specialists that I respected and trusted, but then there were those I would do anything just to avoid them. The only reason those I trusted, respected, and admired are not my specialist anymore is that they retired. I have only met my new specialist was virtually, but she said one thing that won me over, she knew, admired, respected, and loved my first neurologist. As simple as this may sound, I have been missing my first neurologist since the day he retired. It did take me time to be accepting of him because he was the one that confirmed I had Multiple Sclerosis. The only reason I left the practice he was at is because the neurologist that was taking his place insulted him when speaking with me and this was a HUGE no, no!
During my two decades of living with Multiple Sclerosis, (WOW that sounds like a LONG time), I have faced and dealt with various issues. Of course, some of what I have struggled with have ranged anywhere between being a minor inconvenience to almost unbearable, and everything in between. Symptoms involved with Multiple Sclerosis and any other chronic illness can be different for each individual because we are all unique.
I am sure that most of you know about Multiple Sclerosis because you or someone you know has it, but I am going to take this time to provide you a brief overview, and then I will describe the issues I battle with every day of my life. I will begin by explaining what Multiple Sclerosis is.
What is Multiple Sclerosis?
Multiple Sclerosis is a disease that may become disabling of both the brain and spinal cord. With MS, the immune system attacks the myelin, which is the protective sheath covering nerve fibers and creates communication issues between the brain and the rest of the body.
What are the types of Multiple Sclerosis?
Unfortunately, in 2020 there is still not a way to foresee with absolute certainty how a person’s disease will advance and or how fast this will happen. The four main types of MS have been established by the: International Advisory Committee on Clinical Trials of MS and were defined as the following explanations.
Clinically Isolated Syndrome (CIS):
This is the first occurrence of neurological symptoms that are caused by inflammation and demyelination in the central nervous system. Although the occurrence must last for at least 24-hours to be considered a characteristic of MS, it still doesn’t meet the specifications for an MS diagnosis because those that experience CIS may or may not have MS.
It is when CIS comes along with lesion on a brain MRI, which is typically seen in MS, that the probability of the person having a 2nd MRI is high, and being diagnosed with RRMS is very common.
Relapsing-Remitting Multiple Sclerosis (RRMS):
This is the most common form of MS with 85% of people being diagnosed originally with it. RRMS is distinguished by undeniably defined attacks of new or increasing neurological symptoms, which are known as relapse or exacerbation and are typically followed with partial or complete times of partial or complete remission. While in remission, all symptoms may disappear or the symptoms may continue and be permanent, but during this time there isn’t any progression seen. RRMS can be further described as either active, which is with relapse and or confirmation of new MRI activity in a specific time frame, or NOT active, as well as worsening or not worsening.
Secondary Progressive Multiple Sclerosis (SPMS):
Secondary Progressive Multiple Sclerosis is a type when one was initially diagnosed with RRMS and progressed into SPMS. The progression from RRMS to SPMS is due to the increasing worsening of neurological function over time. SPMS can also e distinguished as either active, not active, as well as progression indicating disability accrual over time.
Primary Progressive Multiple Sclerosis (PPMS):
Primary Progressive Multiple Sclerosis is classified by increased deteriorating neurological function from the onset of this disease and without early relapse or remissions. Just like the first few types of MS, PPMS can also be distinguished as active, not active, progression, and without progression. Only about 15% of people with MS are diagnosed with PPMS.
The symptoms for each person living with Multiple Sclerosis might be very different, slightly different, similar, but they will never be exactly the same because we are all very different. I really did not mean for this post to get so long, so I will briefly share with you the symptoms I deal with both daily and or randomly.
The way I discovered that I had MS all those years ago, is because I lost vision in my left eye and went to the eye doctor. Never in a million years did I expect that this vision loss was the start of my journey with Multiple Sclerosis. After going through the MRI to confirm the doctor’s suspicions, I was put on an insane amount of steroids, which even though I completely and utterly detest steroids; they did help restore my vision. One would think I would have been relieved to learn I wasn’t going blind, but I often think the diagnosis was worse than the diagnosis.
Through the years, I have experienced a wide range of symptoms that have varied from mild and tolerable to awful and intolerable. A few things that have been a constant are pain, numbness and tingling, and spasticity. Sometimes I think that if I had one day without any pain, numbness and tingling life wouldn’t seem as normal. My legs always have that numbness and tingling sensation from my knees to the tips of my toes. It can make walking be challenging depending on how bad it is, but normally I am fine with walking. My back hurts every minute of every day from the middle to lower back, but I try not to let that get me down too much. There are times when the mixture of pain, numbness, and tingling can contribute to muscle weakness. I also experience a lot of fatigue and then have a hard time falling asleep. It is an annoying cycle!
Another symptom I have dealt with over the past two decades that is not very often is vertigo. There was a time several years ago when I was having vertigo very bad, but had a doctor’s appointment with my neurologist and drove myself to the appointment. I did well driving when a little dizzy because I managed to keep between the lines. It is insane that I hardly could walk a straight line, but drove perfectly fine! I have also dealt with the MS hug, which is not a huge anyone ever wants. The MS hug feels like there is a huge snake around you and just keeps squeezing. Another issue I deal with at least three times a week is headaches/migraines. Headaches/migraines are a form of pain that I can’t deal with.
Thank you for visiting my site today and reading about my LONG journey of living with Multiple Sclerosis. It has been a long journey and one I never wanted, but one I wanted to give up on 20 years ago. I am thankful that I did not give up and followed advice from my dear Poppy. When I was diagnosed, my Poppy told me that I was strong enough to handle this disease and to always remember that no matter what I am going through, someone else is going through something a lot worse. I have held onto his words all these years and hope that I can inspire y’all to never give up because you are far stronger than you ever knew.
I know this post got a little long and longer than I anticipated, but there is so much involved when living with Multiple Sclerosis. All the challenges you experience throughout your life are making you stronger and therefore you can inspire someone else to never give up! I am looking forward to reading your comments and I promise to 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!
We have finally almost made it through this week! How has your week been? This week has been a long one, but it is almost over. Today is the day of my first virtual appointment with my new neurologist, I am hoping it goes well. I will do a post about how my appointment well, but I do appreciate all of your kind and encouraging comments!
Now that we only have one day left of this week, I think we could all use a little pick me up. I am hoping the quote I am sharing with y’all, will serve you with the right amount of encouragement and lift you need to make it just one last day! With all that is going on with COVID and the stress it is causing, we all need to stay together and help one another get through all this stress!
Thank you for visiting my site today! I hope your Friday Eve goes well and you are staying as safe as you possibly can. Please always remember I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!