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!
Happy Monday y’all! How was your weekend? Honestly, I had a lot of ideas of what I wanted to do over the weekend. Unfortunately, because of a nasty rainy weekend I did not feel well enough to do any of it. Rain makes me feel all my pain more and causes an extreme amount of fatigue. I do hope your weekend was spent better than mine and you are felt well all weekend.
Are you ready to begin another week? It isn’t ever easy to say goodbye to the weekend and begin another week that should be full of opportunities! Each week offers us opportunities for even more chances of success! I am wishing for y’all to have a nice and safe week! I am hoping the quote I am sharing with y’all today offers you the motivation you need to start your week with positivity and optimism!
I can tell you how some of my week is going to go. I have a doctor’s appointment on Thursday afternoon and unfortunately, I have to go to the office. I will be as careful as I possibly can be. I will wear my mask and sanitize as much as possible! I am not too concerned about safety with this office because they do not have people sit in the lobby. I will be immediately taken into the exam room, where I will sit and wait all by myself. The Nurse Practitioner will be quick and she is careful and understanding.
Thank you for visiting my site today! I hope you enjoyed the quote I shared and I am looking forward to reading your comments, and I promise to respond as quickly as I possibly can. I am sorry there are some comments I didn’t respond to yet over the weekend because I really wasn’t feeling well at all. Please never forget that I am always sending y’all LOTS of love, comfort, support, and many positive vibes!
I hope y’all are having a great long weekend and that you are feeling great and staying safe! Do you have anything planned for today? I do hope no matter what you are planning to do, you will stay safe and listen to what expects are telling us. Unfortunately, even though many of us are off today for Labor Day, but COVID-19 does not take days off. In fact, I know many people are completely forgetting about this virus and doing what they would normally do to celebrate a holiday.
On Friday, my thoughts for the weekend were finish a few posts that I had started, organize a few things, and clean, which may sound pretty boring but sounded great to me. Unfortunately, something I never planned for invaded my long weekend and I ended up dealing with yet again another nasty headache. Things are a lot better today, but I still have a manageable headache and will do the best I can to finish those two posts that I had started. I swear there is never any planning or expecting a terrible headache, but it is something I should never dismiss because they happen.
I might be a little behind because of my horrible and evil headache/migraine, but I do want to share a great quote to help motivate us all at the beginning of this short week. I do hope you will find meaning within this quote and it will motivate you to keep pushing forward no matter what happens. Life is difficult and living with an incurable chronic illness does not help, but we are all powerful and can handle just about anything. I do look forward to reading your thoughts on this quote.
I do not want to make any promises that I might not be able to keep, but I do want to finish a few posts I have started. One of these will not be pushed until Wednesday because it is all about what the date means to me. I hope the rest of your day goes well and you stay safe! Please never forget that I am always sending y’all LOTS of love, comfort, support, and many positive vibes!
Since Friday afternoon I have been battling with a nasty headache, which I think was more an evil migraine. It started when I was still working and I had to force myself through the last part of the day, which even though I work at home was difficult to make it until 5:00. I know some would say the migraine and pain came from stress, but I actually disagree with this. Yes, I did get a little worked up about a loan I was working because I was a little confused about what I had to do next, but I did get everything figured out and was fine.
I have been working with my new company for three weeks and I still love my job. During the initial few weeks after training, we are all supposed to work on the loans that are assigned to us, and then the team lead would review our work before we could proceed with changing the status to “complete”. Well on Friday while I was dealing with the start of my nasty migraine, my team lead told me I did not need to have my work reviewed anymore and could proceed on my own. I am not sure why I was so shocked by this because I do understand the work, but to be told this during the end of my third week was a good feeling and made me feel confident. This is the same team lead that told me during my second week on the job I was going to be his “rock star”, so I guess I have a lot to live up to!
When I did finally make it through my horrible painful day on Friday, I laid down with an ice pack on my head around 11:00 PM and did not really get up until late Saturday. Not only am I dealing with a migraine from hell, but my entire body aches. I do not know where this is all coming from. It has been incredibly hot in the south, but I do not leave my house so I don’t know why the heat would be causing me so many issues.
As I am trying to write this I can feel the pain starting back up again, not that it actually stopped it just eased up some. Dealing with pain is not easy and can cause some stress. Trying to understand why the pain has to be this severe is something that can’t be understood. Normally, I can deal with pain, but I am not able to deal with head pain.
Headaches/migraines will have me in the bed with an ice pack and nothing helps. It has been a frustrating weekend that is almost over. I can only hope the headache/migraine will leave me alone as the week starts. I promise I have done everything I know to get rid of the pain, but at this point, nothing is working. I am staying hydrated and even trying to eat.
Do y’all ever get massive migraines or pain in general? How do y’all deal with this? I would like to believe I am a strong person, but I am losing that strength dealing with all this pain. Any advice y’all may have would be greatly appreciated.
Thank y’all for visiting my site today. I do hope your weekend has been lovely, you have been able to enjoy it, and you have stayed safe. Please know that even though I am struggling with pain issues right now, I am always sending y’all LOTS of love, comfort, support, and many positive vibes!
June is National Migraine and Headache Awareness Month. For June, the goal is to raise awareness, further educate those unaware about migraines and headaches, and show support to those that deal with these issues. Due to the vast about of information and to try to maintain length, there will be other posts with even more information about migraines and headaches.
Migraines are the third most common disease globally estimating 14.77% of the world’s population suffers from migraines. Approximately 38 million United States citizens deal with this pain. Of the American’s that battle with migraines, about 85% are women. The vast majority of migraine sufferers experience an episode once or twice a month, more than 4 million others endures chronic daily migraines. It is an exceedingly debilitating condition causing not just a simple headache but can come along with nausea, vomiting, visual disturbances, utmost sensitivity to sound and, light and tingling or numbness in the face. Nearly 25% of migraine attacks may include an aura, which is a visual disturbance that lasts less than an hour.
Unfortunately, children can be affected by migraines. Of the children that experience migraines they typically have their first episode before age 12. Even though at younger ages boys suffer more from migraines than girls, once in the adolescent year’s girls end up dealing with migraines more than boys of the same age.
Migraines are a crucial public health concern, but they continue to be misunderstood, under-diagnosed, and under-treated. More than half of migraine suffers are never diagnosed properly. Many that suffer do not pursue medical attention for their pain because like individuals battling other chronic illnesses, there are extremely high costs for medical services, minuscule support, and restricted access to proper quality of care.
While we are in National Migraine and Headache Awareness Month it is important to recognize the International Classification of Headache Disorders, published by the International Headache Society, which used to classify more than 150 types of primary and secondary disorders.
I will begin with primary headache disorders which are divided into four groups:
1. Migraines- I briefly touched on this at the beginning of this post, but allow me to give a slightly deeper description. A migraine headache is distinguished by throbbing and pulsating pain caused by an activation of nerve fibers residing within the walls of the brain blood vessels that travel within the meninges. Just to quickly explain, meninges are the three membranes lining the skull and vertebral canal and encloses the brain and spinal cord.
Migraine headaches are repetitive episodes of throbbing pain ranging from moderate to severe in intensity. These typically affect one side of the head at a time. If an episode goes untreated it can potentially last anywhere from 4-72 hours.
Various factors can trigger the migraine cycle to begin and could differ from person to person, but may include sudden weather or environment changes, too much or not enough sleep, strong fragrances, emotion, stress, overexerting yourself, loud noises, motion sickness, low blood sugar, skipping meals, tobacco, depression, anxiety, head trauma, hangover, certain medications, hormonal changes, and bright or flashing lights. The cause in 50% of migraine sufferers were foods and ingredients. A few examples of the foods and ingredients that can trigger a migraine are aspartame, caffeine, or withdrawal from caffeine, alcohol, chocolate, aged cheeses, monosodium glutamate, numerous fruits and nuts, fermented or pickled goods, yeast, and cured or processed meats.
The four phases of a migraine, which all can be apparent during an episode, are:
1. Premonitory symptoms occurring up to 24 hours before developing a migraine. These symptoms can include food cravings, incomprehensible changes in moods, unmanageable yawning, fluid retention, and escalated urination.
2. Auras occur in some people causing them to immediately before and during the migraine see flashing or bright lights. Other people may experience muscle weakness or a feeling of being touched or grabbed.
3. Headaches can start and gradually build in severity, ultimately becoming a migraine. However, it is possible to suffer a migraine without a headache.
4. Postdrome can occur after a migraine, which is when someone feels exhausted or confused. This phase can potentially last up to 24 hours before the individual feels healthy again.
Besides the two main types of migraines, I will provide details on; there are eight others forms people may experience. I will share only the names of the additional types in this post but will do another post with the details in the next few days. The eight other types of migraines include Abdominal migraine, Basilar-type migraine, Hemiplegic migraine, menstrual-related migraine, Migraine without headache, Ophthalmologic migraine, Retinal migraine, and Status Migrainosus migraine. The following are the details regarding the two main migraine types.
1. Migraine with aura, also known as a classic migraine. Symptoms can show about 10-60 minutes before the headache begins and last no more than an hour. The symptoms may include visual disturbances, difficulty speaking, numbness, or muscle weakness on one side of the body, a sensation of tingling in the bands or face, nausea, loss of appetite, heightened sensitivity to light, sound, and smell.
2. Migraine without aura also knows as a common migraine. The symptoms with this type include headache pain that happens without warning and typically felt on one side of the head, nausea, confusion, fatigue, blurred vision, altered moods, and an intense sensitivity to light, sound, or noise.
The most common type of headache is a tension headache, which was previously known as a muscle-contraction headache. This type of headache suggests the role of stress and mental or emotional pain triggers pain and contracting muscles in the neck, face, scalp, and jaw, missed meals, depression, anxiety, not enough sleep, or sleep apnea.
The pain that accompanies tension headache can range anywhere from mild to moderate and anything in between. Typically this feels like constant pressure is being forced onto the front of the face or to the head or neck. It can also feel like something is being tightened around the head and is felt on both sides of the head. Those that suffer from tension headaches may become very sensitive to light and sound, but do not go through the pre-headache aura that comes along with migraines. Tension headaches will begin to fade once the period of stress or other related causes ends.
Tension headache tends to begin during adolescence and reach the utmost activity in the 30’s. These headaches do affect women somewhat more than men.
Tension headache has two different forms:
1.Episodic tension headaches happen between 10 and 15 days each month and can last anywhere between 30 minutes to several days. Even though the pain is not disabling, the intensity of pain tends to increase with the regularity of the episodes.
2.Chronic tension headaches often happens more than 15 days monthly over 3 months. The pain involved with this form of headache is consistent over days or even months, it is felt on both sides of the head and can become extreme and disabling.
Both depression and anxiety can be the source of tension headaches. These can occur in the early morning or evenings when conflicts at home or work are expected. The various other causes include posture that strains the head or neck muscles, degenerative arthritis in the neck, and temporomandibular joint dysfunction.
Cluster headaches are the most extreme form of primary headaches. This form of headache involves unforeseen, exceedingly painful headaches occurring in clusters. They typically occur at the same time of day and night for several weeks at a time. Cluster headaches affect one side of the head, frequently behind or around one eye, and may lead up to migraine-like aura and nausea. The pain involved peaks 5-10 minutes following the onset and persists at the same intensity up to 3 hours. Some will endure restlessness and agitation, changes in heart rate and blood pressure, and increased sensitivity to light, sound, or smell.
Cluster headaches can start at any age but typically begin between 20 and 50 years old. This form of headache commonly affects that smoke more than those that do not smoke and is seen more frequently in men than women. Cluster headache episodes do not last as long as migraines. Ordinarily, people will have 1-3 cluster headaches a day, with 2 cluster periods yearly, possibly separated by months free from any symptoms. Cluster periods are commonly inaccurately thought to be allergies because they do occur seasonally, normally in the spring or fall. It has been suggested that inconsistencies in the body’s sleep-wake cycle could be a cause of cluster headaches.
Thank you for visiting my site today. I am sorry this post was so incredibly long, but there is a lot of important information that needs to be shared. In my next few posts I will explain the miscellaneous primary headache forms, secondary headache disorders, treatments and diagnostics. I do hope the information in this post was helpful and offered some sort of comfort. Personally, I deal with migraines and tension headaches far too much and understand many others do as well. I want to encourage your comments because I know they will be amazing and even help others, including myself! Please never forget that I am always sending y’all LOTS of love, comfort, and many positive vibes!
I have lived with Multiple Sclerosis for almost 20 VERY long years. During this time I have experienced pain, numbness, dizziness, vision problems, the infamous MS hug, and so much more. The only thing that can really get me down and unable to do anything is the headaches or migraines whatever they may be.
Yesterday all I wanted to do was write, but I wasn’t able to due to a nasty and quite evil migraine. While we are going through this awful pandemic of the coronavirus, I have been told by two great women, my mother and mother- in-law, I should stay in the house because of my weak immune system. While I do understand that grocery stores and other places that have a lot of people aren’t a good idea for me, I hate knowing I can’t do anything. I guess it would be much easier if I was making this decision and it not be forced on me. Even the morons in the government are saying people with underlying issues should not go into public places. It is all I can do to not disobey the government idiots, but my health is more important than my distaste of them.
Thankfully, today my headache/migraine is much better and I am able to write again. I plan to write and read as much as I can while my headache/migraine is at bay. I only hope it stays this way because it is the only thing I can do that I enjoy.
I do want to share a little information about migraines with y’all. All the information I am providing is the information the Migraine Foundation had discovered.
Migraines are the 3rd most prevalent illness worldwide
1 in 4 households have someone with migraines
Migraine sufferers are 18% women, 6% men, and 10% children
Migraines are most common between the ages of 18 and 44
90% of migraine suffers have a family history
Migraines are more than just a bad headache and suffer from more symptoms including
Typically a severe throbbing recurring pain, usually on one side of the head, about 1/3 of attacks will be on both sides of the head
Attacks often have one or more of the following disabling symptoms: visual disturbances, nausea, vomiting, dizziness, extreme sensitivity to sound, light, touch, and smell, and tingling or numbness in facial extremities
About 25% of migraine sufferers also have a visual disturbance called an aura,
which usually lasts less than an hour
15-20% of attacks have other neurological symptoms before the actual head pain starts
Attacks usually last between 4 and 72 hours
Most people don’t understand how serious and incapacitating a migraine can be
6th most disabling illness worldwide
Every 10 seconds, someone in the United States goes to the emergency room with complaints of head pain, and approximately 1.2 million visits are for acute migraine attacks
Most sufferers experiences attacks one for twice monthly, more than 4 million people have chronic daily migraines, with at least 15 migraines a day each month
More than 90% of sufferers are unable to function during their migraines
Migraine is a chronic disease that significantly diminishes a person’s quality of life
More than 4 million adults experience chronic daily migraine
Medication overuse is the most common reason why episodic migraine turns chronic
Depression, anxiety, and sleep disturbances are common for migraines sufferers
Over 20% of chronic migraine sufferers are disabled
I do hope this information was helpful for you, but I also hope non of you ever have to experiences this miserable pain. This probably won’t sound great, but if I had a choice between the pain I was in yesterday and death, I think death would have won. Like I already said, I can deal with pain and keep going in life, but headaches/migraines will keep me in bed with an ice pack that melts too soon, unable to eat, and an irritability that makes me just as evil as the pain.
Thank you for visiting my site today. I appreciate you taking the time to read and will look forward to your comment. Please never forget that I am always sending y’all LOTS of love , comfort, and many positive vibes!
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.
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.
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 headaches/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 horrible 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!
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!
Happy Friday y’all! I hope your week has been fantastic and with it finally being the end of the week, you are feeling the best you possibly can. Words cannot even begin to describe how glad I am to have a three day weekend because it is needed for SO many reasons. I think I have already made it perfectly clear how I feel about my manager, which is not all that great, but I am learning how to deal with him in healthier ways. I am pleasant when I first arrive at work and then only deal with him when it is absolutely necessary. Most things I can actually handle on my own and in a way that makes our residents and prospects feel understood and respected.
When things become unbelievably frustrating, I try my best to laugh it off and talk about happier topics. Sometimes changing the subject will distract people on bad situations. I think having the ability to add optimism to a negative situation will only increase morale and lessen the negative emotions. The residents at the community I work at respect me and know that if they call, email or come into the office, I will take as much time as required to help resolve their troubles.
I have already told y’all that I am THRILLED to have a three-day weekend, but there are still many negative feelings I have bottled up over the past week that I need to let go of. Today is the perfect day for not only myself, but for all of us to start letting go of negative feelings. I honestly believe that holding onto those pessimistic and defeatist thoughts will only hold us back from living that happy life we deserve. The quote I am sharing with y’all today is to help you let go of anything negative you might be feeling and I think it speaks volumes!
I want to thank you for stopping by my site today and to let you know that I always appreciate your continued and valuable communications. Whether it is on the quotes I share three times a week or something else I write about because I believe your thoughts add so much additional meaning!
I hope you have an excellent day and your weekend is filled with whatever brings you the most joy because you deserve it. Do you have any plans or are you just going to be spontaneous? I think part of my much needed long weekend will be enjoying not being awoken with an evil alarm clock and other things that I want to do. Please know that I will always be sending y’all LOTS of love , comfort, and many positive vibes!
Good 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 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!
I 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:
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.
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.
Abdominal Pain: This is something else that is very common with Gluten Intolerance. 83% of individuals living with this intolerance experience abdominal pain.
Headaches: About 10-12% of the Western population experiences migraines. People with Gluten Intolerance are prone to migraines.
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 fatigue 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
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!
Depression: Depression is not as common and only affects 6% of those living with 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.
Unexplained Weight Loss
Iron-Deficiency Anemia: This causes symptoms such as low blood volume, fatigue, shortness of breath, dizziness, headaches, pale skin and weakness.
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.
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.
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.
Leg or Arm Numbness: Neuropathy symptoms involving numbness and tingling in the arms and legs.
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, constant 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!
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!
I 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 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 time, 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 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 with 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 searching 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 comments! 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!
Good 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!