Fight for your health!

fight for a cureI hope y’all have a lovely Monday! First day of a new week may bring some wonderful and positive changes to all of our lives! I really appreciate y’all visiting my site today and as always love to read your comments, which I do respond to as quickly as I can! Most of the time I like to write about the random things that are on my mind. This helps me to release all those emotions and then getting your feedback help tremendously, so thank you for all of your fantastic comments!

How do you fight for your health instead of fight against it? It is so important to be vocal with your doctor and never allow them to dismiss what you say or rush you out of the exam room. We all know our bodies and how we are feeling better than anyone, so that should be listened to. I think at times it is hard to admit what our body is telling us and our body feels as though it has to scream it at us, which may cause additional issues. I am one that will ignore issues that arise for as long as possible because I do not want to admit to the problems. Ignoring or neglecting our health will never result in anything beneficial. This is where fighting for our health becomes extremely important. If we ignore what our body is telling us we are actually fighting against our own health.

I am actually going to my MS Specialist on Thursday. I am going to my specialist partially because I am supposed to see her every 6 months and partially because I want to share with her my concerns. I already know going in that my issues with headaches will be dismissed because she seems to think that MS and headaches have no correlation, but I think it is still important to bring the topic up once again. I also want to discuss with her the fact that the issues that came with my relapse in October have not really gone away. I am fully aware that the body heals from each relapse differently, but I should have improved drastically by now and not continue to have pain that affects my ability to work full-time. I just really need answers to why I seem to be at a stand still in health. Do y’all have any suggestions to how to grab this doctor’s attention?

I hope y’all have a great and relaxing evening! As always I am sending y’all lots of love and comfort! Try to hold onto your positive thoughts because they will help in the long run and negative thoughts will only hold you back.

Love 2

Always, Alyssa

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Hiding behind a mask

maskDo you ever try to hide behind a mask of what you think you should be? Or hide behind the mask of what other’s think you should be? Sometimes admitting how you truly feel can be terrifying and almost make you feel weak. Periodically I think most of us try to be strong and act like everything is fine when it really isn’t. Always trying to be strong by not allowing anyone to see your pain and struggles becomes a normal way of life, but is that really the best way to live life?

Do you ever feel that you need to disguise your feelings? I can fully admit that I try to not allow my feelings to  come to surface when I think they will cause others additional stress. If I am being honest, I do worry about my Multiple Sclerosis and if things are progressing too fast, but it is not good to over think situations you have absolutely no fake our smilecontrol over. Holding on tight to positive thoughts can be very difficult, but can really change your life, whereas allowing negative thoughts in your mind can be pretty destructive. If I allow my mind to think that my MS is progressing it makes it a real thought opening doors that I prefer not walk through. Building a barrier between our thoughts and reality is sometimes possible if we try!

Stress is a silent killer that can impact all of our lives. So how in the world do you avoid it? Some stress is actually avoidable, but then some stress is completely impossible to avoid because it will come at you with full force. The ways we handle stress are really important! I have tried doing some research about how to avoid stress and found some tips that might be helpful. Avoid caffeine, alcohol and nicotine. So many turn to alcohol when they become overwhelmed, but it is very well know that alcohol is a depressant so that will never be helpful in any way and could cause even more problems. Indulging in physical activity can be helpful for our health as well. Stressful situations increase the levels of stress hormones such as cortisol and adrenaline in the body. So we might be able to take some of the adrenaline from stress and turn it into something positive. Lack of sleep is a significant cause of stress. Stress can interrupt our sleep because our minds are in a constant whirlwind of thoughts which stops us from relaxing enough to even fall asleep. If we are having a hard time falling asleep there are things to try like taking a warm bath or reading a book because these will calm the mind! Starting a stress diary where you can write out your feelings and keep track of your thoughts can be very helpful! Writing out your feelings can help you find ways to solve your problems and not have to worry about judgement from others; your journal will not talk back! These were just a few MS Hopeideas that stuck out to me, but I know there are so many other ways to handle stress! 

I have been very worried about health care in the United States. There have been so many changes that are not really for the positive. I think doctor’s schedules are so full it makes it hard for them to give each patient the attention they deserve and they may even confuse patients. With the doctor’s schedules being so incredibly full, I think sometimes their notes can be misleading and incorrect. I actually know this to be true because I recently had my doctor’s office give me a copy of the notes for the last few years.  I have also been very concerned about my MS because things have not gotten much better since the relapse I had in October. I do not know if this means the MS has progressed or if the additional non-stop pain is just here for the long haul. All illnesses are like uninvited guests that just will not leave and make messes during their stay.

I know the weather has been a little crazy all over the world, but I hope y’all had a great weekend! The snowstorms that have occurred at the end of March have been pretty unusual, but I hope if y’all have experienced this you were able to stay warm. I am hoping that this upcoming week will bring us all some pretty spring temperatures. Y’all have already read before that I am never fully ready for the new week to start because I would prefer to have another day of rest. Hopefully this new week will give us some real joy and comfort! I really appreciate y’all visiting my site today and I do look forward to all of your comments! I hope the remaining part of your weekend is absolutely fantastic and restful! I am always sending y’all much love and comfort!!

Love 2

Always, Alyssa

Common Triggers for an MS Flare Ups

TriggersGood evening Y’all! I am carrying on with MS Awareness Month sharing more information with you about the illness. Have you even analyzed what was going on in your life when you had a MS Flare Up? In a way I guess I have, but still never made any changes to what was going on in my life. I know it will not be any fun and might be a little painful thinking back to your most recent flare up, but what was going on at that moment in your life? I will tell you that the major flare up I had this past October was completely and 100% due to stress. Below are some very common triggers for an MS flare up.

 1. Stress:

         a. Emotional stress can lead to a very common MS symptom, depression.

         b. Stress can lead to additional fatigue and confusion, probably from lack of sleep.

    2. Fatigue:

       a. Sleep is very important for everyone, but it is vital for those with MS.

       b. Most people with MS have a lower reserve for energy, so small tasks can be           exhausting.

    3. Infection:

        a. Infections cause about 1/3 of all flares up.

        b. Due to reduced bladder functions in some MS patients, Urinary Tract Infections are very common, which in turn can cause a flare up. 

        c. Even a slight cold or the flu can initiate a flare up. This makes it very important to seek medical attention at the first indicator of a cold or the flu so you can get in front of the ailment before things get worse. 

     4. Heat:

        a. Increased body temperatures, whether due to the weather or having a fever.

        b. Symptoms, like tingling and numbness tend to be more intense during the summer because of the outside temperatures. It is important to stay in the air conditioning as much as possible or try things like cooling vests.

Flare UpNot all MS flare ups are going to need to be treated with steroids. Lord knows, for any of you that have had to be on them they are miserable. Even though I know steroids help shorten the flare up, I will do just about anything to avoid them! Typically issues like tingling, fatigue and mental fogginess will go away on their own, especially once the trigger has been eliminated. Unfortunately there are more severe MS symptoms that can affect mobility and vision that will require a short course of steroids. Each person does need to learn what triggers the various symptoms that take place during a flare up. Sometimes it is easy to acknowledge what your triggers are, but an entirely different situation addressing those known triggers.

Do you know what triggers any flare ups you have had in the past? Do you think there was a way to avoid this flare up if any behaviors had been altered? I do believe if I could learn to manage my stress a little better, I could possibly avoid many flare ups in the future. I can acknowledge what my triggers are, but I have a problem making changes with the issue, which is normally stress. This is not a good excuse for not making changes, but it is in my nature to worry about people I care about and feel an overwhelming need to help them through their problem or problems. I always want to fix whatever issue or issues my loved one are experiencing. Even though logically I do know that I am not able to fix everyone mselse’s issues, but should really focus more on my own life I do still try. This does not fix whatever my loved one is going through, but just causes me so many more issues with my health and an increase in my pain. 

I want to thank y’all for visiting my site today. As always, your comments are very welcomed and I will respond to you as quickly as I possibly can. I know this information is probably well know already, but I hope that it reminded you to be mindful of your own health and try to know what could be possible triggers for you. This information about flares and triggers is not just isolated to MS, but can also carry onto other illnesses. All illnesses can have triggers that cause that illness to rear their ugly heads. I hope y’all have a nice and relaxing evening. As always, I am sending you lots of love and comfort!

Love 2

Always, Alyssa

 

Multiple Sclerosis Awareness

Awareness_buttonThe Multiple Sclerosis Association of America (MSAA) recognizes March as Multiple Sclerosis Awareness Month, so I would like to share some valuable information about this illness with y’all. Many of you already have a decent amount of knowledge on this illness because either you are living with it or know someone who is, so some of this information you are already aware of! Preliminary results from the National Multiple Sclerosis Society reported nearly 1 million people in the United States live with Multiple Sclerosis and 2.3 million worldwide. This seems like a massive amount of people living with this illness worldwide with no cure, yet. I would ask why, with so many fundraisers to find a cure for this illness, why there has not been one found yet, but I think it is pretty obvious what the reason is. You might disagree with me and that is okay, but the drug companies would lose so much money if a cure was released and the greed takes control with that!  I might be wrong about this and it is just hard to find a cure for a debilitating illness, but it would be really great if there could be as it would help so many worldwide.fight for a cure

Multiple Sclerosis is a very unpredictable and sometimes debilitating disease of the central nervous system. This disrupts the flow of information within the brain and between the brain and body. MS is typically diagnosed between the ages of 20-50 and diagnosed 2-3 times more often in women than men. Symptoms do range from numbness and tingling to blindness and paralysis and the severity of symptoms differs drastically between each person.MS Awareness

In 1868 the famous neurologist, Jean-Martin Charcot, lectured on features of Multiple Sclerosis and actually gave it the name. Jean-Martin Charcot was a French scientist, instructor and physician who was the claimed founder of modern neurology. Throughout the 1800’s and 1900’s many other therapists/physicians tried without any success in the treatment of MS. These therapists/physicians created and tested what to me sounds like some very dangerous treatments. One of these dangerous ideas was something called Deadly Nightshade. Deadly Nightshade was a plant with poisonous fruit, arsenic, mercury and injection of malaria parasites. This sounds more like a death sentence than a treatment for the illness. 

It was not until 1951 when steroids started being used to treat relapses in MS patients. Steroids are used to reduce the severity and duration of the relapse. They do not have long-term effects on the disease, but are just used as a short-term fix like a band-aid that just assists the issue. For those of you that have been on steroids, you already know they are not any fun at all. I know when I have been on steroids they make me extremely irritable, exhausted and I have literally no appetite. I think normally steroids increase appetites, but they do the exact opposite for me. I guess I am a little abnormal! Even though steroids have some horrible side effects, they do seem to make the relapse a little shorter.

The first drug that was proven to be effective for a long-term treatment of Multiple Sclerosis was approved in 1993. Since 1993, there have been 15 long-term treatments approved for MS. The 15 approved disease modifying medications include injection, infusion and oral. These disease modifying medications are meant to slow the March is MS Awareness monthprogression of the disease and delay any disability, but unfortunately is not a cure.

In all honesty, I had no idea that this illness had been around since the 1800’s. When I was first diagnosed, I knew hardly anything about the disease. I only knew one person that had MS and granted she was older than me, but she was disabled. I had this overwhelming fear that I would end up in a wheelchair like her. But, it has been almost 18 years and I am still walking just fine. I do experience terrible amounts of pain, numbness and tingling, but at least I have not lost my ability to walk and look like I am perfectly fine. During the times my pain is extremely high is when my motto is “Fake it til you make it!”

For those of you that have been following my blog, you already know I tried numerous different disease modifying medications until I found the one that has been working well for me. I guess back in 1993 when the medications were being released there were far fewer choices for a person to choose from, which must have made things a little easier. Now with so many to choose from you must do your research and test for yourself what works. It is okay to start a medication and find it does not work well with your body chemistry and switch to something else. It is however very important to find one that will work for you so you can have a little better control of the disease. There are a couple of websites that I would encourage y’all to check out as it has a lot of important information MS Warriorabout MS, https://www.nationalmssociety.org/ and https://mymsaa.org/ .

I hope y’all have had an amazing weekend. The weather sure has changed here in the south towards more of a spring like time. It is crazy considering it is technically still winter until March 20th, but I can not complain. It was so warm in February which does make me a little worry about what summer is going to be like. I mean seriously, it was 80 at the end of February, so what are the temperatures going to be in July? 

Thank y’all for stopping by my site today. I hope the information I have given was valuable and interesting. I spent a lot of time researching Multiple Sclerosis when I was first diagnosed, but over the past few days I did a little more reading and what I discovered was so interesting. I hope you enjoy the rest of your Sunday and I hope you are prepared for the new week to start. Truthfully, I am never completely prepared for a new week because the weekend is so short, I always feel like I did not get anything accomplished, if only the weekends were longer! I look forward to any comments you may have about this post today and I will respond to you as quickly as I can! As always I am sending y’all lots of love and comfort!

Love 2

Always, Alyssa

 

 

Reflecting on 2017

dwell on the pastI know there is normally no use dwelling on the past because it is more important to look towards the future, but reading some of my previous posts got me thinking. There was a lot of talk about pain in 2017. Everyone probably already knows that Multiple Sclerosis does come with a fair amount of pain but does talking about it really help? I know that writing about the pain did not make the pain magically go away, but in a way it helps to get those negative feelings out. Sharing my story with many people I unfortunately have not met in person and hearing their stories made the situation a little less lonely.

Living with an invisible illness can make people feel a little isolated at times. Granted for the most part my family understands my illness and is understanding, but when I go to work not many if any of my co-workers really know what I live with. When I park in a handicap parking space at the grocery store, not because it is impossible for me to walkinvisible-illness but because it does cause unnecessary pain to walk far distances, people look at me like I am committing a crime because I look perfectly normal. I have learned to not allow the judgments of others to affect my life but sometimes the looks are a little disturbing. I will never take the last handicap parking space at any store because another person might have a more severe condition and need it a lot more than I do. I always try to be considerate of others even if it does in turn cause me a little extra pain.

I have had Multiple Sclerosis for almost 17 years, but in October I had a ferocious flare up that caused me immense troubles. I was out of work for over a month on short-term disability which caused me some emotional troubles as well. All I could think is why am I only 36 years old and already on short term disability? Is this only going to continue on this path and force me to be viewed as a disabled woman? As crazy as it might sound I strong enoughfelt a vast amount of shame with this. I did not want anyone besides my direct manager to know anything about this so I did not have to deal with any ignorant comments when I did returned to work. Thankfully the short-term disability did not extend and I am slowly getting back into the swing of things at work. I am not working a full 8 hour day yet because it is not worth pushing myself too hard just to have a setback. It is called prioritizing, I am learning to put my health first and put my job second.

Pain is inevitable and continuing to live life is not optional. I still battle pain each day, but I refuse to give up. I want to be able to live a normal life even if my normal is different from others. hne_pain_and_suffering_We are given a chance to enjoy our lives no matter what challenges are we encounter. I am trying to fight my pain and MS with a positive and optimistic mind-set, it might not work every day but I will not allow these issues to control me! 

I hope y’all are having a good weekend! Hopefully you are feeling well and staying warm! These crazy cold temperatures have made me want to stay inside with my blanket and heating pad. According to the weather channel the temperatures will be on the rise next week, but whose to say that will last or really even happen. 

Thank you for visiting and commenting on my thoughts of day! I always appreciate hearing what you have to say and do always respond as quickly as I can! I hope you have a great and relaxing evening!! Much love to y’all!

Love 2

Always, Alyssa

First time with Rebif

journey continuesAs promised, I am carrying on with my fun journey of being diagnosed with Multiple Sclerosis. Unfortunately, when I was first diagnosed in 2002, there had not been oral medication approved or probably even thought of yet, so I did not have many choices. Like I had said in one my previous posts,  my doctor strongly urged me to try Rebif because he had seen a lot of success with his other patients, so I did give him the benefit of the doubt.

I can remember the first time I gave myself the Rebif shot! It took me forever to get the needle into my skin only because I was so scared of what was going to happen and how it was going to feel. I remember I asking my mother to be at my apartment with me because I never thought I was not going to have the courage to do it by myself, especially the first time and I needed a little support. Shockingly enough I did manage to get the needle in but then had a hard time actually releasing the medicine because it was already burning like fire. All in all I think my first injection took me about 20 minutes to complete, but I was proud of myself when it was over because I actually did it myself! I can still remember how much the medicine burned as it was released from the syringe and told my mother I would never do it again because I hated every moment of it. ThatRef evening I woke up several times feeling like I had the flu because I was cold but sweating and my body ached all over. Even the next morning I felt like I was still sick so I called the doctor worried. My doctor told me it was very common to have flu-like symptoms with Rebif and before my next dose I should premedicate with Advil or Tylenol,  as they would combat those negative side effects. Of course me being the patient I think every doctor dreads having had a lot of questions! I could not understand why a medicine that was supposed to be helping me would cause me to be even sicker and require more medicine. My goal was to take as little medicine as possible and they were only increasing what I had to take.

The next time I had to do the Rebif, I asked my mother to come over to my apartment and do the injection for me. I just could not handle  pushing a needle into my skin knowing  exactly how bad the medicine would burn and how I would feel the following day. Thankfully my mother was able to help me and do the injection for me. Afterwards, I did manage to do the injections myself for the most part. My husband knew what days I was supposed to do the injections and would remind me and encourage me to do what was needed. 

Technically, I was prescribed Rebif for about two years but slowly stopped doing the injections on the days I was supposed to because I had too many bruises and ran out of injection sites that were the easiest for me to do. My doctor figured out that the medication was not working because I was having more issues arise but he did not know the real reason it was not working, so I finally told my doctor that I was not taking the medicine any longer and told him why. I explained to him that I was not good at doing an injection every other day, so he and I discussed different options. Unfortunately my options were limited to other injection based medications or IV medications and I was not comfortable with any of my options and needed time to think about what I would do next. 

From my own personal experiences I know just how important it is to find the right disease modifying medication that works best for you. Back then, the diagnosis was still new to me and I was still being stubborn not wanting to face the facts that I needed to do something to slow the progression of the disease. I made bad decisions solely based on not wanting the illness to have any effects on my daily life and not wanting to  admit that this illness was not going anywhere. It was a childlike mind thinking if I did not Unknownacknowledge it, there would not be any consequences. I went as far to tell my doctor he was wrong and I did not have MS and I was getting a second opinion. I did exactly what I said and got a second opinion from another specialist. Those were two bad decisions all in a matter of a few months. I stopped taking anything for the MS and went to another doctor that did not seem to have as much knowledge. I ended up having my first bad exacerbation which caused me a lot of weakness and dizziness and I ended up back with my first doctor. As terrified as I was about going back to the doctor I told was wrong, he was very understanding about my feelings. This was also the first time the exacerbation was bad enough to require IV steroids. There were a few other medications I tried before finding the one that was best for me, which I will get to in my next post. These posts are taking a little longer because they are all emotionally draining for me.

I do completely understand how hard it is when finding the right medication for MS, but it is really important to do your own research and give things a try with an open mind. I have tried a number of medications so please do not hesitate to reach out to me if there are any questions I can answer for you. Please keep in mind all my answers are only based on my own experiences as I do not have a medical degree. Considering I have gone without taking anything I do know it is not the best idea and I only want to help!

Thank you for visiting today and sharing any comments you may have. I will respond to all comments and emails as soon as I can! I hope y’all had a good Monday and I hope you are having a great evening! Much love and take care!!

Love 2

Always, Alyssa

Day 2 back at work

WednesdayYesterday, my second day back at work was not very successful. I had planned to be at work longer than I was on Monday, but after only 3 hours was starting to feel absolutely terrible. Last night, I could not sleep at all because my pain was so extreme. I ended up not going to work today because of not sleeping and being in too much pain. I am hoping tomorrow will be a better day!

Trying to heal from my most recent exacerbation has been pretty difficult and I do not really know why. I am trying to remain positive because I do believe that is the only way healingto deal with hard times. If you constantly stay in the negative mind-set, things will never improve. But honestly, I have been being positive and getting rest, but things are not getting any better. I guess it is possible that I am trying to rush myself to get well and I am being hard on myself if I can not do something, like going to work today. I know my manager is very understanding, but I just want things to be normal again. I could not even do my daily post yesterday because I felt so horrible. I guess tomorrow is always another day to try again!

I am planning to rest tonight and try turning my brain off for a little while. I will do my best to go back to work tomorrow with my adjusted hours, but if for some reason I can not do it, it is going to be okay. We can not rush the way our bodies feel because all that 6a0120a8df43e7970b01b7c8136efe970bwill do is push us in the wrong direction. It is frustrating to think in my mind that I can do everything I was able to do a few months ago but when I try, I can not do it. Pain is such a difficult thing to deal with. No one is able to see what you are going through and trying to explain it is almost impossible! My husband keeps trying to reassure me that my flare up issues will pass just as they have always done before, I am just having a hard time seeing the light at the end of this dark tunnel. I think it is harder for me this time because this is the worst flare up I have had in the 16 years I have had MS. 

Thank you for stopping by and reading my thoughts for the day. As always I truly love your comments and I do always respond as quickly as possible. Our communications really do make me so happy. I am planning to do a few posts explaining when I was first diagnosed and what I went through, I just have to wait until I am feeling a little better. I really hope y’all had a good day today and I hope you have a great evening!!

Love 2

 

Always, Alyssa