My Open Letter to Pain

pain go awayDear Pain,

Our relationship started so many years ago and let’s be honest it has never been a healthy relationship. I have tried to break free from you for years, but somehow you manage to always find a way to sneak back into my life.

At this point I do not even remember exactly

when all of this pain started. It is both sad and crazy it has been that log and I can’t pinpoint a day! It seems as though you just creeped on me until you pretty much consumed my days. You have always been an unwelcomed intruded who wanted to invade my life and almost control me. Unfortunately, the harder I fight you, the more persistent you are.download (5)

When I sit here thinking about our history I do know you slowly started causing me pain in my only my legs. While having consistent pain in both legs wasn’t easy, I felt like in a strange way a little more control of you. I don’t remember you causing me as many tears back then, but this was just the beginning of a long relationship.

download (7)As our very toxic relationship progressed, my pain travelled through more areas in my body. Let’s see, the next area you tried to take over was in my mid to lower back. This was still early on and was absolutely horrible. It seemed like no matter what I did, I was still in excruciating pain. Nothing was really helping this type of pain, but early on a heating pad did help some. Of course I still deal with this now, but it is SO much more intense. Yes, heat does still help some, but not as much as it used to. I do the best I can to ignore you, but you just never take a break!

In addition you are trying to make my massive headaches/migraines to take me out of commission because you know it is the only pain I can’t handle. These miserable 895ff6a44348f4a668000c879dd12480headaches/migraines have become more frequent and much more severe! The only thing that seems to help a  little is a dark, quite room with an ice pack on my head for hours. Unfortunately, I can’t really do this while at work and I have to go home early.

These days not only do I feel you in my legs, my mid to lower back and the head, but you are now trying to attack my neck, shoulders and arms. Did I just not pay you enough attention and that upset you? Do you just need me to acknowledge you and allow you to take the wheel of my life? Well this isn’t going to happen because I am not going to allow you the control me anymore.

Oh and I almost forgot the lovely MS hug! What is the point of this anyways? That originalhorrible feeling that the life is being squeezed out of you is so mean! You already know that nothing helps this at all, so why force me to deal with at various times?

All the years that have gone by, I need to break free from you. It is now time to separate and just END this relationship. I am sure you think I am going to give up, but I refuse to! Our relationship is OVER and you need to just walk away and accept it! Please leave me alone!

Goodbye pain, this is the end!

Alyssa

Thank y’all for visiting my site today and reading my letter to pain. I think I have lived with this pain long enough and it is time for it to stop. I have been reading more books about MS and even though I have lived with this illness for almost 2 decades, these books were helpful. I do believe they would be beneficial for anyone that either lives with this illness or has someone close them with MS. I think the books I have read give a pretty good explanation of this unpredictable illness. Please never forget that no matter what I am dealing with I am always sending y’all LOTS of love ❤, comfort, and many positive vibes!

love-2-e1526867753936

❤Always, Alyssa❤

 

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Things I didn’t know about Gluten Intolerance!

good-evening-images-63Good evening y’all! I hope you are having a good week so far and hope it stays pleasant! Just think, we already made it through two days of the week, so we are almost half way there!

Y’all already know I have been battling with what I thought was a nasty stomach bug, but after doing a little research I do not think that is the case anymore. Of course I haven’t seen a doctor about it because I do not have insurance, but I think I figured it out on my own. I am about 99.9% sure I have developed Gluten Intolerance. I guess that is actually a good thing because understanding what is images (1)going on and understanding how to handle it will provide me with some relief or at least I hope it will! Obviously I am not a doctor, but I think I am familiar enough with the body I have lived in for almost 38 years. I am going to share with y’all what I have learned and please if you have any other helpful tips or ideas, please let me know!

Wheat-Gluten-IntoleranceI first want to clarify a few important details I have learned! Gluten Intolerance is often confused with other issues, like Celiac Disease or food allergies, but there are some differences and similarities. Gluten is a protein found mainly in wheat, barley and rye. This protein can cause digestive problems like gassiness, abdominal pain or diarrhea. With food allergies, the immune system overreacts to a particular food causing various reactions and levels of severity. Celiac Disease is an inherited autoimmune disorder that can damage the small intestines, but Gluten Intolerance almost mimics this.

Signs & Symptoms of Gluten Intolerance:10-Signs-Youre-Gluten-Intolerant-

  1. Bloating: This is when the belly is swollen or full of gas after eating. This is very common and does occur in 87% of individuals with Gluten Intolerance.
  2. Diarrhea, constipation and smelly feces: About 50% of individuals with gluten intolerance deal with diarrhea and 25% experience constipation. This is when you would experience inflammation in the gut after eating gluten. This damages gut lining, leading to poor nutrient absorption.
  3. Abdominal Pain: This is something else that is very common with Gluten Intolerance. 83% of individuals living with this intolerance experience abdominal pain.
  4. Headaches:  About 10-12% of the Western population experiences migraines. People with Gluten Intolerance are prone to migraines. 
  5. Feeling Tired: This is also being very common, leading to 60-82% of individuals with Gluten Intolerance experience this. People with this condition are prone to Gluten-Intolerance-Symptoms-Do-You-Have-Themfatigue and tiredness, having very low energy. Gluten Intolerance can cause iron-deficiency anemia. This is a condition in which blood lacks adequate healthy red blood cells. Red blood cells carry oxygen to the body’s tissues
  6. Skin Problems: There is a blistering skin condition called Dermatitis Herpetiformis, which is a manifestation of gluten-sensitive enteropathy, commonly known as celiac disease. This is not as common and can improve once on a Gluten-Free Diet!
  7. Depression:  Depression is not as common and only affects 6% of those living with11246-health-1-1 this intolerance. People with digestive issues seem more prone to both anxiety and depression.-Even though depression is not too common, there are a few theories for how Gluten Intolerance can lead to depression.*Abnormal  serotonin levels. Serotonin is a neurotransmitter allowing cells to communicate and is commonly referred to as “Happiness” hormones.

    *Gluten Exorphines, these peptides are formed during digestion of the gluten proteins. The gluten proteins may interfere with the Central Nervous System, which may raise the risk of depression.

    *Changes in gut microbiota. This is increased harmful bacteria and decrease beneficial bacteria increasing the risk of depression.

  8. Unexplained Weight Loss
  9. Iron-Deficiency Anemia: This causes symptoms such as low blood volume, fatigue, 6-signs-of-gluten-intolerance-300x165shortness of breath, dizziness, headaches, pale skin and weakness.
  10. Anxiety: This can affect anywhere from 3% to 30% of people worldwide. Involves feelings of worry, nervousness, unease and agitation. People with gluten intolerance are more prone to anxiety and panic disorders.
  11.  Autoimmune Disorders: Even though Gluten Intolerance is a separate issue from Celiac Disorder, I thought it would be good to share this as well. Celiac Disease is an autoimmune disorder causing your immune system to attach the digestive tract after consuming gluten. Typically people with gluten intolerance also have another autoimmune diseases to cope with.Gluten-Intolerance-Symptoms
  12. Joint and Muscle Pain: There is a  theory that people with Celiac Disease have a genetically determined over-sensitive or over-excitable nervous system. Gluten exposure may cause inflammation in gluten sensitive people. This inflammation may result in wide-spread pain, including joints and muscles.
  13. Leg or Arm Numbness:  Neuropathy symptoms involving numbness and tingling in the arms and legs.
  14. Brain Fog: This issue affects up to 40% of those with Gluten Intolerance. Forgetful, difficulty thinking, feeling cloudy and mental fatigue.

After learning more about this the things I deal with almost make more sense in  a way. Battling with stomach issues for over on month, numerous headaches/migraines, ud6zQ3sJTmewbULOd0n7_Beyond-Gluten-Free-Article-2018-1280x720-1constant feeling of fatigue, obnoxious levels of anxiety, nervousness, worrying and quick agitation, dizziness at random times, weakness, joint and muscle pain, numbness and cloudiness in my mind. I always blamed so many of these symptoms on Multiple Sclerosis and maybe that is still the case, but maybe it is a Gluten Intolerance causing more of it. 

I am doing my best right now to change my diet, but it really isn’t easy. I bought several gluten-free products at the grocery store, clementines and carrots, but honestly have not seen much of a change. Logically, I have only been trying this for a couple of days and I know it takes time for this type of change, but at least I am trying! Do y’all have any advice you would be willing to share? I know you always have great ideas and fantastic suggestions that I do appreciate!download

Thank y’all for stopping by my site today and I am sorry this was a little longer than most of my posts, but there was so much information to share. I hope you have a lovely and relaxing evening and of course I hope you are feeling well! I know it often takes me longer to respond to your comments, but I promise to respond as quickly as I can! Please never forget that I am always sending y’all LOTS of love ❤, comfort and many positive vibes!

My signature heart

❤Always, Alyssa❤

 

Crazy decisions and side effects!

side effectsI have always thought it was a little crazy and extremely frustrating that medications meant to slow the progression of illnesses down, are accompanied by a long list of possible side effects. I know that the Gilenya I take daily is supposed to slow the progression of my Multiple Sclerosis, but it has a really LONG list of potential side effects and at one point that was what pushed me to want to make a change in my treatment plan.

The middle of last year I was having so many issues with terrible sinus headaches and migraines that I wanted to find out what was causing them. After reviewing what side images (2)effects Gilenya posed, I saw somethings that were common was headaches and sinus troubles. I was not just looking the side effects up on Google, but I was on Gilenya’s actual website, so I took this very serious as I am sure most people would. I went to my doctor with these concerns and she pretty much dismissed my thoughts claiming that it was not all that common with this medication and that I shouldn’t be doing this kind of research because it was “false” information. I argued back asking how it could be false when it was on the manufactures real website!? Of course I was frustrated that my valid concerns regarding my health was being ignored and not even willing to discuss more at that oral_therapy02time, so I decided to ignore her medical advice and demanded that I try a new medication immediately. It wasn’t until I told her there was another oral medication I read about that I thought would be better for me she finally decided it was worth her precious time to have a conversation with me. She tried her darndest to use the fear tactic, which of course wasn’t working well with me and only caused me to question her logic further. I know it sounds crazy, but I was completely convinced that she was receiving kick-backs from the drug company and me not changing medications would continue to be financially beneficial to her.

In preparation to change my treatment plan from Gilenya to Tecfidera I discontinued the Gilenya last July. I was required to be off medication completely for 6 weeks, so all the 51WIQmA-fnL._SL1000_Gilenya I had taken needed be out of my system and allow the Tecfidera to be able get into my system. In early September I started on Tecfidera which again is an oral medication. During this time my MS did not get better, but much worse! I guess MAYBE the doctor was correct when she said Tecfidera wasn’t going to be strong enough for me or maybe I had the nasty relapse because of ALL the stress I was under. I was so worried about the headaches and the fact that Gilenya could have been the cause and then even more concerned that my MS was progressing way too soon in my life. Whatever the cause was the MRI I had in early October was HORRIBLE, landing me right back to the drug I was convinced was causing my headaches!

It still doesn’t seem fair to me that we have to make the decision if we would rather deal Gilenya+Fingolimidewith the side effects of these so-called helpful drugs or be disabled. As difficult as it is to deal with the massive headaches/migraines, I would much rather deal with them rather than lose my normal abilities, like walking without assistance. I still do not think it is right for anyone to have to make a decision like this, but I guess it is what it is!

I have been back on the Gilenya for a little over a year now and I do still deal with sinus trouble and migraines, but at least the MS hasn’t to have progressed. I do think that until there is a cure for MS, which I must believe will happen in my lifetime, I will not be changing medications! Now that my husband and I have completed our move, I am ms-research-2013-6-638searching for a new MS Specialist, who will hopefully be more knowledgeable and have much better bedside manner. I know I have already shared this with y’all, but I am NOT a fan of my previous specialist. As crazy as this may sound, I want a specialist that is an older gentlemen because I have found they are more understanding and considerate. Of course going with an older person, I run the risk of them retiring, like two of my previous specialist did and I absolutely ❤ LOVED❤ them! I am sure that with the determination I have, I will find one that is best for me and my personality. I guess it shouldn’t be as important to have the warm and fuzzy with a doctor as it is for the doctor to be knowledgeable, but I need to feel comfortable with them in order to trust the doctor.

I always appreciate you taking the time to stop by my site today and I always love reading your got-hope1comments! I hope y’all are having a nice weekend and you are feeling as good as you possibly can! I must say having a long weekend is absolutely wonderful and I have been able to rest, but still do things that needed to be done! Please never forget that I am always sending y’all LOTS of ❤ love, comfort and many positive vibes!

My signature heart

❤Always, Alyssa❤

The world keeps spinning!

The world keeps spinningThe world seems to keep spinning around me so fast, but I feel like I standing still. I think it might be important to just accept the things in life that we have no control over and just embrace life for what it is. There really is so much about life that we might want to change, but I think whatever we might be living with or dealing with is in front of us for a reason. The reasons might be unknown, but there are reasons that we will discover someday!

If you sit down and really think about the way your life has played out, is there any outcome you would want to be different? All the struggles we might have encountered have not made us weak by any means, but they have all built our strength to continue onstruggle is real fighting a good fight! Sure none of us want to have a chronic illness or financial struggles or anything that might appear to be a negative aspect of life, but if we did not go through all the trials in life who would we be? I would like to think that everything we go through in life creates who we are and how we treat others, but maybe we would still be the same person if we did not go through any hard times. No one can say and be 100% sure!

Personally, I have always been very empathetic towards others and sympathetic to other’s needs. Everyone’s thoughts and emotions matter to me❤! I guess I am and probably always will be a very sentimental and sometimes overly emotional person. The way I am now has not changed since I was diagnosed with Multiple Sclerosis, I am just me!

There are so many people we all encounter that never learned how to be empathetic, which if you think about it is pretty sad for them. I guess for some people, especially in the world we live in frederickdouglass1today, if you have never experienced a life altering illness that causes many different issues, they are unable to understand. It is okay for people to not fully understand, but they should never judge another because how they say they are feeling. Pain is VERY REAL! Migraines are VERY REAL! Instability when walking is VERY REAL! Mood changes are also VERY REAL! Everything we deal with in life is VERY REAL! None of us asked to have a chronic illness and I am sure we all wished we didn’t. But considering we have one, we face the world with a different perspective that involves a lot of acceptance and willingness to make changes at a moment’s notice. Our days are typically never the same, but most of never complain about it, we just manage it the best we can.

Basically I have taught myself and I am still learning how to accept the fact that I haveaccept what we can not control no control over many things in my life. I know I can control how I view situations and how I react to them, but that is all!  As a person that might have some control issues, this isn’t easy for me. I have always had a strong desire to make the lives of those I care about better. Learning that I have NO control over how someone else’s life works out for them is hard! I have learned that there isn’t anything I can do to make life easy for anyone because I do not think life was meant to always be easy! We all just need to live our life to the fullest and never dwell on what we think or wish would happen!

Thank y’all for visiting my site today! I always appreciate you taking the time to read my sometimes random thoughts and really LOVE reading your comments! I hope y’all are having a wonderful weekend and I hope you are feeling well. Please always know that I am sending y’all LOTS of love❤ and comfort!

My signature heart

❤Always, Alyssa❤

Out Sick!

out sick todayGood morning y’all. I am so sorry I have not been able to respond to all of your great comments from yesterday and today. I started having a terrible migraine on Sunday afternoon, but thought it had eased up enough to go to work yesterday. I was very wrong about my migraine being better because while I did work yesterday, I started feeling the pain ease back in. Even one of my co-workers looked at me and said “Alyssa, you look terrible!” I did manage to work for six hours, but when I came home did not leave the bed. The massive migraine brought all of my pain to the extreme! Unfortunately, I am home from work today to try to get better. I will do my best to start responding to your comments, but please be patient with me I am still feeling pretty darn horrible!!

I certainly hope you are having a good day and I hope you are feeling okay. Thank you so much for taking the time to visit my site and leave me great comments. Even though I am feeling pretty bad I am still sending y’all LOTS of love❤ and comfort!

My signature heart

❤Always, Alyssa❤