SDragonfly

@steffanydragon
We often feel completely isolated from people suffering from the same illness or challenges, especially when we choose not to make it our identity. Then, it may become hard to find the support when we need it. The Mighty helps me feel sane in a world where my illness causes me to experience physical and emotional struggles that most cannot relate to, nor do they care to try. For years I have related to the same feelings poured out in the articles that I have struggled with. It truly helps. I also achieve awareness and even more empathy for others. The result of my lifestyle from physical challenges has the same result as a bipolar lifestyle, being debilitated and playing catch up constantly. Thank you!
Community Voices

Misunderstood

Part 1 of 4 MISUNDERSTOOD

Most people don’t understand how often I go under with my #ChronicIllness , how I pay dearly for any days I’m active, that I only have 3 functional hours a DAY without debilitation creeping in & how frequently I can do nothing but rest and recover. That leaves this driven woman so frustrated and with mountains of life and responsibilities to catch up on for days after. If I don’t have another flare then I am blessed enough to get back to any other income generating or giving activities. And then I’m not necessarily ready for the aftermath on my body of doing so. I often push through, but in order to not go insane from pain and debilitation it is in my best interest finally in my life NOT to.

All I’ve done is push and try and comments I receive here about being young and lucky (I am 44)…or people thinking I’m lazy or anti-social… or haven’t tried hard enough to get well… or that I can’t keep my promises… because they don’t realize how sick I am is literally heartbreaking. Yes, I have done about every holistic remedy over the past 18 years, continue to be on powerful herbs, detox constantly and work with an excellent specialist in Orlando, FL every 3 months to fight for my health. I have worked extremely hard and #LymeDisease has stolen so much from me ie. any possibility of having a successful #Relationships and starting a family. Then, I learned you can transmit #LymeDisease through the placenta so there went that! I’m finally in a place where I can have quality of life and literally living is worth it. I have SACRIFICED to get here!! My horses have been saving my life daily over the past couple of years because I have to get out, use my muscles, and take care of them every day. I know my heart is weak so trudging uphill here with the wheelbarrow might just be saving my life even if it sounds like I can’t breath (I often have severe air hunger). People are so blind to the fact that my doctors and I ARE doing so much right or I would be SO MUCH worse. I can have moments and half days without suffering which I never had before. People always tell me they either know someone who had Lyme but are better so I must be missing the magic cure, or that the person they know has it really severe, not like “my mild case.” It’s ridiculous. My life is constantly busy doing on the days I can, catching up, or resting to heal to catch up again. I hardly have any free time or feel well enough to socialize. That should not receive criticism. I am not a burden on anyone and don’t need pity or help. JUST understanding and being seen for who I am would be appreciated.

#LymeDisease undiagnosed for four years set into effect a cascade of powerful physiological changes that can never be undone that ruined my adrenal glands (this is a huge deal), left me with zero energy, hormones that I have been trying to replace, left my body unable to process environmental stressors, mold or tolerate heat, left me almost allergic to the sun, makes my Epstein bar which is mono viruses ???? constantly reactived even though I have to take antivirals daily, the list goes on and on. #LymeDisease starts up #PostconcussionSyndrome in me very often which has the effect of a #TraumaticBrainInjury . People keep looking at me judgingly and ask why I cannot get well. Having #LymeDisease and treating it right away is nothing like Chronic Lyme, it being left in your body undiagnosed for four years to cause destruction. It does irreparable, irreversible damage to your other body systems. SO many precious fellow warriors are in my shoes with this lifelong disease and a google search on the internet will reveal the horror of it. I struggle to take about 20 medications a day, get concoctions down and try to do oxygen ozone treatments in my house just to stay functional. Trust me, this is not what I want to do with my time, energy and brainpower, or finances! Yet, people still judge me every rare occasion I get out, look at me and ask me things like, “what are you doing with your self these days?” or “we thought you were better.” Or “We never see you.” As if I have a choice and am laying around with free time.

My words falling on deaf ears and being so misunderstood is cruel. I am completely honest and transparent, telling people that I am chronically ill. The entire reason I had to leave my family and friends and move out here is because I lost the ability to work and the Florida environment was keeping me completely debilitated and in bed. Yet they constantly do not hear it. Just becau

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Community Voices

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

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Community Voices

Misunderstood

Part 3 of 4 okie of the Year in my first Veterinary Distribution position and went on to be a top performer either first or second in the nation every year for 9 years. Finally, an infectious disease physician in Tampa diagnosed me with #LymeDisease and #Babesiosis in 2009. We got to treating as aggressively as possible WHILE I kept working, never imagining I would not get rid of it. I had no safety net, no husband, no opportunity to stop working to treat and not lose everything. I maxed out any contributions to my 401K and saved and saved, put money into retirement knowing Chronic (not regular Lyme) is progressive. Busting my tail with God’s help and blessing through constant pain and sickness, determined not to lose my livelihood, my independence, my future to the disease all the while infusing with antibiotics, having to go to Germany 2 weeks in a hostile, because 15 years ago treating #LymeDisease was illegal, (Lyme treatments were in their infancy in this country) and in the middle of #Stuttering , falling into things, seeing floaters, God gave me the faith to purchase my home, my sanctuary, smartly during the recession, while at a sales meeting in California. All the while I had to pretend I was OK, enduring burning and stabbing in my head that started in 2005, among so many other neurologic issues.

Having held somewhat of a high profile position because of my dedication and constant activity in the Veterinary Industry, all my body craves and does best with is quiet, peace, no stimulation, and isolation when I need to recover. If I didn’t live through my intense headaches, pains in eyes, face, gums among other symptoms, I wouldn’t live at all but pushing through them every day leaves me exhausted and needing recovery time.

Finally medical leave after medical leave I voluntarily left my company because I decided my faithful (& BEST) customers deserved a healthy person whose body didn’t keep sending them out of the field on medical leaves. Shockingly, I got denied my disability insurance. After being called a liar by the insurance company and that my Germany treatments where I was ACUTELY ill were falsely described as a vacation, I had to hire a lawyer to win disability for the year. I have files and files of proof and medical records from my serious medical conditions, but add the term #LymeDisease , and it is met with scrutiny because the differentiation between #LymeDisease and Chronic #LymeDisease is not recognized by enough of the world yet. I have dealt with a mountain of #neglect by the medical community and injustice by insurance companies. And all the while having to hide my illness. I would collapse in my car, throw up, be unable to walk out of the blue, stutter, and feel shocks of pain in my head, arm cramps, soreness in ribcage, all while speaking with veterinarians or doing presentations. I had to have surgeries to repair tendons and severely injured my back, neck and knees when I would flare and still do. This started in my TWENTIES, not as I aged. It’s not the same. My heart BREAKS for children afflicted with this nightmare. Against the doctors’ advice and reality, I went back to work and worked four more years in equine health, and equine nutrition. The topmost specialist in Washington DC, Dr. Jemsek, found me to be one of his worst patients and during treatments there I actually had my fourth and final interview for the Equine Nutrition position in the hotel before one of my clinical visits and told my doctor that God wouldn’t bring me this far just to see me fail. My ridiculous optimism served me well until it didn’t. It took me YEARS and YEARS to change my expectations due to the inability to get relief despite all the determination, faith, belief, effort, and WANTING so badly to feel anything resembling “healthy.” I am so glad I did go back to work even though it was not sustainable because I found my true talent, and gift in an area I could use all my veterinary and medical knowledge in as well…Equine Nutrition. During a business lunch with co-workers one day, I told them I push on and make the most of every day because of the hope that I could have a good day. They couldn’t conceive of 90% of days living in a torture chamber. It was so beyond their reality, they thought maybe I was kidding and laughed because I never complained. I don’t blame them. Every time I got established and my executive team and employers told me they didn’t care if I only worked two days a week through my illness, what I produced was great and they would keep me hired, the compan

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