• Anyone that has a chronic illness has a wall that is always closer than they would like it to be. #chronicillness

    What Does Your Wall Look Like?

    What is a wall? It is that ugly thing at the end of your energy. You do not have to have a chronic illness to have one because no one has endless amounts of energy. Sometimes getting ready for the day (showering, brushing hair and teeth, getting dressed, etc.) slams me right into it.  Then there are days that I actually have enough energy left to get out of the house. And yes, some days I wake up and I am mere inches from that wall. So, what is the difference between my wall and yours? Location! You probably don’t even notice yours on most days because it sits so…

  • So, what exactly am I apologizing for? It’s not like I can help it. #guilt #chronicillness #migraine #mentalhealth

    Why I Apologize

    One of the first things I say after a Hemiplegic Migraine episode and I am actually able to put words together is “I’m Sorry”. And now that I have learned to sign, “I’m Sorry”, I say it before I even get my voice back. Why do I feel like I need to apologize? It’s not like I can help it. I am doing everything I can to get better management of my migraines. I apologize because there is nothing else to do and I apologize because my life feels like it is spinning out of control. The need to apologize may be because I had to cancel plans or I had…

  • The Trigger That Can’t Be Avoided

    I changed my diet to avoid the nitrates, MSG, CHOCOLATE and certain cheese that are triggers for my Hemiplegic Migraine. You know, those things that can keep me in the dark cave for the rest of the day. I have tried to learn new ways to handle stress and I have given myself permission to take naps and rest when needed. Of course, I take my medications just like I am supposed to and I follow my Doctors instructions to the best of my ability. I do absolutely everything I can to avoid the things that make life harder. There is just one trigger that I have not figured out…

  • How Chronic Illness Ruins Plans & Friendships - #schedule #chronicillness #chronicmigraine #plans #cancel #friendship

    One Day I Won’t Cancel

    Your friends invite you for dinner and game night…you are so excited about it. You plan you day around it. You make sure to save your energy, so this time you won’t have to cancel like many times before. It is going to feel so good to get out of the house. It is going to feel amazing to be a part of something. But then it all gets ripped away. It all starts by that bright light in your vision that leads to all the things that stop you in your tracks. Go to an event? That is silly because you can barely undress and get back into your…

  • Mask, chronic illness, migraine,Hemiplegic Migraine

    Taking Off the Mask

    I, like most people with a chronic illness, am really good at hiding how I feel. I wear a mask, a facade. If you ask me how I am doing, I will probably say okay or fine. I want desperately to be normal…to have normal days with normal ups and downs. The mask is there just so I can “feel” like everyone else. I don’t want to be the Debbie Downer that is always talking about her illness. You see, I used to be independent and loved to try new things. If I wanted to go somewhere, I went even if it meant going by myself. I sang in my…

  • The Emergency Room Migraine Stigma - #migraine #chronicmigraine #health #healthcare #stigma

    I Am Not a Drug Seeker

    Do you want to know what it is like to be treated like a drug seeker? Go to the ER and tell them you have a migraine. Often times you are talked down too, disrespected, made to feel like you are a bother to everyone around you. They often give you strong narcotics in an IV and send you on your way because they think they have given you what you want. But those narcotics give you re-bound headaches so you are caught in a vicious cycle. The type Of Migraine that I have is rare. Approximately 20,000 in the US have this type of Migraine. What I have is…

  • Hard week, sick, migraine, medication

    Hard Week and Frustration

    Honestly, this has been a hard week. I had a reaction to one of my medications. It just so happens to be the one that keeps the fluid pressure from building up around my brain. My right eye was swollen, my kidneys were not functioning well and I had absolutely no appetite at all! So My Doctor had me go off the medication immediately instead of his normal taper off schedule. Let me just tell you that as the week has progressed it has just been bad. Vision issues, inability to talk. Paralysis (all part of the aura) has been horrendous! The headaches that have followed have not really been eased…

  • What my life was before chronic illness took over. - #chronicillness #migraine #chronicmigraine #hemiplegicmigraine #thefrozenmind

    What Life Used to Be

    In order to explain what has been taken from me, I must explain what my life used to be. At one time I had a sarcastic wit and loved to make people laugh. I sang on the praise team at church and was heavily involved in the women’s ministry. With 2 grown kids, 2 grown step kids and 6 step grandchildren. I could always be found at a sport event depending on the season…baseball, football, tball, softball…you name it. I also loved to cook…and did a lot of cooking! Before I got sick, I also owned my own virtual assistant business and I had 7 clients that I managed websites…

  • Step, journey, migraine

    The First Step

    As I begin the journey of posting about my life with a chronic illness…more specifically Hemiplegic Migraine…I decided that before I can explain how it effects me and my life that I need to explain what it is. I must take the first step. WebMD’s definition is as close to perfect as I can find. “Hemiplegic migraine is a rare and serious type of migraine headache. Many of its symptoms mimic those common to stroke; for example, muscle weakness can be so extreme that it causes a temporary paralysis on one side of your body, which doctors call hemiplegia.” What does that mean? What does it REALLY mean? It means…