SDragonfly | The Mighty

Misunderstood

Part 2 of 4 se I still smile and care about others and would rather talk about God’s goodness does not mean I am not struggling almost constantly. And in your own way, so are you! We all are. But often, I am received with disbelief or people not caring enough to grasp the truth of what I am saying beneath a healthy looking exterior. Then people get disappointed and surprised when I disappear to heaI. I have three functional hours a day (to my dismay and the constant effort to get more) and I can appear very vibrant in those three functional hours especially if I have time to rest and prepare. Meanwhile nobody notices that they never see me two days in a row. I’ve been in awful pain and suffering since I was 27 years old not to mention the orthopedic issues I was born with and MANY older people where I live now Skoff at any of my issues and say they were born of the generation that worked through it, not recognizing how insanely hard I have worked through it. It is insensitive as they laugh and say “Welcome to my world” or “Wait until you’re MY age! You have it easy” etc not even taking a second to realize how much I have endured since my 20s.

Yes, it’s sad I have to prove myself or else the false assumptions run rampant…but here is the TRUTH. I worked 83 hours a week straight from age 27 & ill (with port in heart, iv lines, treatments) to age 42. Suffering, asking God for daily miracles. I have been and am a WARRIOR every day. I stay positive and grateful and people mistake that for an easy life. How ignorant. I’ve also had to spend so much of my earnings since youth on non-covered treatments for Lyme that kept me functional including Hyperbaric (split cost with my parents

), Ozone and UV irradiation, cocktail infusions, and herbs and medications that make you sicker before experiencing any relief. You can look up the Herxheimer Reaction. From some people’s comments here, I am perceived as having it easy, having free time or that I must have a rich uncle. That is farthest from the truth and breaks my heart. I know there is kindness & compassion from some very special people here and from people whose faces show it too. However, the little snide comments I constantly hear are full of false assumptions and hurtful remarks. I give everyone the benefit of the doubt and the only assumptions I make is that everyone has been through hurt, #Trauma , pain, and realize I know nothing about someone’s life unless they share it with me.

My life before moving to a mostly retired community as a “youngster”. I have one of the strongest work ethics one could have, evidenced by my achievements and success. All through college I worked & saved while many played. I left my beloved Auburn University when tuition changed to smartly take advantage of my full ride scholarship to the University of Florida; was accepted into 4 (FOUR) Veterinary Colleges-attended UF; Wrote & published peer reviewed professional papers in graduate school presented in TX, Ireland & FL; Produced 4th grade science curriculum used in 4 states; Applied for and Received highly competitive grants & assistantships; worked on a joint grant project with NASA; Paid my way; Worked my way; Earned my way…; Conducted research in Costa Rica on Sustainable Energy and reaching the poorest of the poor through technologies and intentional agricultural extension; Taught courses with University of Florida professors taking county commissioners all throughout the state of Florida down to Costa Rica for a multicultural immersion experience and training; Paid off any vet school debt (I attended the first year and excelled but had to get bilateral knee surgery as my knees failed me from my congenital disorder I was born with and had to have six total surgeries and a medical deferment from which I did not return, physically impossible to safely practice Equine medicine) within 2 yrs of graduating; Taught as a University of Florida Extension Faculty member (after earning my Master’s in Agricultural Extension with a Concentration in Tropical Conservation and Development; pioneering this new educational tract for students behind me with a huge thesis). While working as the UF Extension Agent in Natural resources, Small farms and Livestock management, I became extremely ill w Lyme. It was my first position out of graduate school and in Duval Co, FL., now known to be a hotspot for ticks transmitting Neurologic #LymeDisease . But the illness went undiagnosed despite emergency room visits, desperation for health, and the disease going deeper into my tissues, especially my brain. For 4 years after that all I could do was WORK, suffer, crash, go to 30 doctors trying to figure out why my body systems were turning on me, still earning Ro

1 person is talking about this

Emily Williams @the_mindful_migraineur

contributor

Everything You Need to Know About the Botox Letdown

If you are new to Botox, as I was this past year, I learned a few things about the medication I thought would be helpful to share with my fellow chronic community. Either it works great for you or it doesn’t! (Common theme amongst migraine treatments.) It’s expensive and insurance will fight you to not cover it! The Botox injections themselves are a little painful, but the migraine I get afterwards is the worst. For some individuals, such as myself, Botox begins to stop working around week nine. Insurance will not cover you for your next treatment till week 12, so for three weeks you are in migraine hell. If the medication works for you (yeah!), over time it should help you more as it builds up in your body. The letdown weeks are horrid — I had no idea this was going to happen. For three straight weeks I was in an awful migraine attack cycle that could not be broken. But my doctor and I may have found a solution for that. I’ll keep you posted! The elusive “Botox letdown”— is not something that was covered or discussed with me prior to beginning the treatment. If you are new, or are considering this as a treatment option, I would encourage you to discuss this with your doctor! Our insurance in Oregon had refused to cover Botox as a viable option for migraine treatment! But when we moved to North Carolina, I discovered that it was covered by our insurance company (with strings attached of course). My new doctor believed I would be an excellent candidate for it, so after months of paperwork and bickering with insurance I was on my way to trying out a new tool. My Experience My first round went awful; I was in such a bad state from the unknown spinal leak that nothing you threw at my body at that point was going to help it until the leak was fixed. The second round went OK. It seemed to help some but took forever to kick in. I was basically on week nine before I began seeing any noticeable differences in attacks. Plus, I had just been discharged from the inpatient program, so my body was in a whirlwind of WTH shock — needing time to heal. When I went to get my third round, insurance all of a sudden denied me. A four-month battle of obtaining approval ensued. At this point, I was considering driving to Canada or Mexico for the drug. I was feeling desperate — which is a terrible feeling when in intense pain. I t. was. bad! But I had this tug at my heart that told me to keep trying. So I pushed forward. Finally, insurance approved me for my third round, but at this point it was as if I had come back to square one. It had been over six months since my last treatment. My neck and shoulder muscles were like concrete… tight, achy and painful. But feeling as if I should give this a few more tries, I had my fourth treatment in the summer of 2019. It seemed to help. It did take a few weeks, but I began noticing attacks were shorter and less intense — a win in my book! Progress! As time crept closer to my October treatment, I began to notice that my neck and shoulders at about week eight to nine started having “novocaine-like thaw out feeling.” Attacks started becoming more frequent, and by the time I got to week 12 for my fifth round of Botox my body as in full attack mode — and had been that way for several weeks. After a chat with my doctor we decided to add in a nerve block at week eight to nine to see if that would help extend the effectiveness of Botox. Because it’s clear it’s working, just need it closer together than 12 weeks — but guess what insurance is won’t cover it ( shocking)! I will go for my sixth round of Botox on this January (nothing like meeting your deductible right at the beginning of the new year!). I’ve put together a list of the top five symptoms I’ve noticed when the Botox began. My hope and prayer is that this next round with the added nerve blocks at week nine will give me the coverage I need to get me to a place of better management. I recognize everyone’s situations are different, but felt that a list of symptoms could be helpful for someone like me who is a bit of a newbie to Botox! Five ways I’ve noticed the “Botox letdown”: 1). My temples become sensitive to touch ( ouch)… especially during an attack. Using my amethyst roller helps, as does ice packs! 2). The “thawing out” feeling in the occipital ridge area at the base of skull, over several weeks. If you have ever had dental work and had Novocain it feels similar to this, but much slower and more gradual. 3). When having an attack, they are increasingly worse in intensity and duration — Yeah!? 4). Auras and hemiplegic attacks increase. During the first several weeks after Botox, all of my auras seem to disappear. But as we creep closer to the 12-week mark and time for the next round of treatment, I find I have visual auras, tingling head and hemiplegic attacks (which are terrifying). 5). Overall more tightness and aching in my neck and shoulders (my problem areas). This is where my tools of the acupressure mat, foam roller and epsom salt baths can be extremely helpful. All in all, I would encourage others with chronic migraine to at least give Botox a try. Yes there are a lot of negatives, but there are also so many positives. During the weeks when the Botox is working, I have less frequent and less intense attacks, am able to be a more present mom to my toddler and feel more like a human than any other medication or treatment I’ve tried. So I will endure the insurance battles and painful three-week letdown period if it means that I can feel more like myself for a nine consecutive weeks. Living with chronic migraine is tough, so we have to take the wins when we can — and I consider Botox a win for me. Follow this journey on The Mindful Migraineur

Save