I know Hair loss is a characteristic of Lupus BUT I truly do not know how I have hair on my head! The clumps are getting worse and my bald spot is back.
I am in search for new remedies, any suggestions? What do you guys do?
Maybe bald is the way to go!
Sincerely,
Undefeated me!
Me: “I am Exhausted”
Them: “Get some sleep. Rest. Oh just take a nap.”
If it were only that simple. There is tired and then there is the exhaustion that many of us with a Chronic Illness feel. It is the nausea inducing, body shaking, fever generating, limb weakness type of exhaustion. For me, my exhaustion can sometimes include breathing difficulties and neurological side effects such as dropping things, tripping (body imbalance), and fogginess. It is a concept that is difficult to grasp if one has not experienced it.
Sometimes resting or sleeping do infact help but more often than not it only places a bandaid on the situation. It is like plugging in your cellphone that is at 2% for 10 minutes to get just enough of a charge to make a call. You rest/sleep for 8 hours… and sometimes you have just enough energy to do just one activity. You save up all of your energy for one thing. We are not talking about saving up your energy for one big trip to Disney, no. I am talking about you sleep 8 hours to do something like clean the bathrooms or cook dinner. This is of course if you can get to sleep, as many of us are experiencing side effects from medications or in such pain we can not get comfortable.
I wish I was joking. I wish that everything I was saying was a harsh dramatized dream, but it is not.The last time I was experiencing this level of exhaustion I was being newly diagnosed. I have to admit that I have been very lucky over the years as I have been able to kind of gage when I was exerting myself and I would plan appropriately. I worked full-time, went to school full-time, and maintained some level of friendships. Now that I think about it, I am not sure how I did it… but I did. Now a days I can’t seem to make it until 3pm without needing to nap for just a moment. When I was working in an office, many of times I would take my lunch break and nap in my car.
I have been looking up some different shakes and teas to help with my symptoms. Think I will make one in the morning and see if it helps even a little. I’ll share the process! Stay strong my fellow spoonies. I am with you… Have a good night!
XOXO,
Exhausted Me.
There is Asthma and then there is:
Defined:
A rare form of ASTHMA affecting mainly females and featuring sudden, very severe, often life-threatening attacks. Those affected have a mild degree of immune deficiency, with poorly-controlled asthma in spite of substantial doses of inhaled steroids and wide diurnal swings in their peak flow meter readings. The term is also applied to people whose asthma is normally well controlled but who, nevertheless, suffer occasional sudden severe attacks. Brittle Asthma. (n.d.) Collins Dictionary of Medicine. (2004, 2005). Retrieved June 13 2016 from http://medical-dictionary.thefreedictionary.com/brittle+asthma
There is nothing more we take for granted than breathing. Hell even I take it for granted, that is until I can’t. Let me paint you a picture, a very real picture. It often starts with coughing or some form of chest tightness. Unfortunately, it never stays that simple for long. Within minutes the chest tightness goes from 0-100. It was a normal Thursday, you know get up, get ready, get little man ready, rush out the door, get little man to day care… But this Thursday was different. 4:28am brought with it a dream that I was drowning, shortly after that I was up gasping for air and attached to my home nebulizer. Crazy how the body works.
It never ceases to amaze me the strength within. Instead of going to work I found myself in the parking lot of the ER. I thought it would be an easy visit and for all outsiders it was. Simply because I refused to be admitted, yes you have to stick up for what you want or need. Unfortunately, I have not bounced back as quickly as I had hoped. Four day’s later and I am still struggling. Something as simple as putting my clothes on has me breathing like a 90 year old chain smoker. Getting in my car this morning had me sitting and utilizing my rescue inhaler. There is nothing like feeling like you are breathing through a straw. Ever try it?
Some day’s… Day’s like the last four have me mad… Mad at my body, mad about these diseases that take over. No matter how hard I fight, try being healthy, eating healthy, taking vitamins, attending my appointments, sometimes I feel like I lose anyway. Something as simple as not keeping up with my little guy shatters a piece of me. I will never stop fighting, but damn it if I don’t come close some day’s to just saying FUCK IT! I can’t tell you how many day’s I come so very close to staying in bed. 🙂 Some how I crawl out and push forward, but it’s a close call.
Keep fighting my friends… Keep getting out of bed… I am there with you!
XOXO,
Undefeated Diva.
To those of you awake in the hours that know my deepest secrets… This ones for you!
Hope you smiled a little.
May you all find sleep tonight!
Xoxo,
Me
by Sarah Stothers, RN, BS, Lupus Foundation of America Health Educator
Recently, there’s been growing concern over generic drug price increases in the news and on social media. We at the Lupus Foundation of America have felt and been enveloped in this wave of concern. Our organization has been tracking the cost and availability of hydroxychloroquine (Plaquenil®) since June 2014. Initially, there were widespread reports of shortages and difficulty accessing the drug, but now the primary issue is the spike in price.
The Lupus Foundation of America is aware that many of our constituents are unable to afford the high cost of the generic form of the drug, hydroxychloroquine. We are concerned that constituents may stop taking the drug or ration the drug without their doctor’s knowledge. This is can be very dangerous.
It is extremely important that lupus patients take hydroxychloroquine (Plaquenil®) as prescribed. Medication adherence prevents disease flares and other complications.
“Hydroxychloroquine is the mainstay of lupus therapy,” according to Michelle Petri, MD, MPH. “It prevents half of lupus flares, reduces renal and CNS lupus, reduces blood clots in half, reduces future seizures, diabetes and LDL cholesterol, and improves survival. I call it ‘lupus health insurance.’”
Currently, there is one brand name drug manufacturer producing Plaquenil® and four generic drug manufacturers that are producing hydroxychloroquine. All four generic drug manufacturers are no longer reporting a shortage and are meeting demand. However, we have had several reports from people who are unable to pay the high cost of the drug. As a result, some individuals are no longer taking it or rationing their medication. We urge all people with lupus to speak with their physician if they are having difficulty accessing the drug.
Here are some actions people with lupus can take to obtain the drug at a more affordable price:
The Lupus Foundation of America is sharing this information because we want to ensure that our constituents can access and afford the medications that they need. We are in the process of contacting the generic manufacturers that produce hydroxychloroquine to better understand why there was a shortage and now a significant price increase. Our Advocacy and Government Relations department is pursuing several avenues to address the problem.
We believe it is important for us to represent the lupus community and ensure that everyone understands why the prices of their drugs have increased so dramatically. If you have questions or need any information, please contact our health educators through this form, or by calling 1-800-558-0121
Link for story: https://m.ufhealth.org/news/2015/university-florida-researchers-say-lupus-treatment-shows-early-promise
University of Florida researchers say lupus treatment shows early promisePublished: Feb 11, 2015By: Doug Bennett
A new treatment that may reverse the effects of the most common type of lupus has shown promising results after undergoing early testing by a team of researchers at University of Florida Health.
The findings of a two-year study that used human cells and mouse models were published Feb. 11 in the journal Science Translational Medicine. The new treatment for systemic lupus erythematosus involves regulating metabolism in cells that affect how lupus develops in the body. It has yet to undergo clinical trial in humans.
Lupus is an immune system disorder that prevents the body from distinguishing between harmful germs and healthy tissue. In lupus patients, proteins known as antibodies that are supposed to ward off viruses and bacteria instead attack healthy tissue. This causes inflammation and can lead to irreversible scarring, blood clots and kidney, lung and cardiovascular problems.
Just as diet has a major effect on overall health, nutrients affect immune activity at the cellular level. Now, UF Health researchers may have found a way to rein in lupus by changing the way cells in the immune system use energy.
A key finding of the study involved the researchers characterizing the way specialized white blood cells known as CD4 T-cells use nutrients. In lupus, these cells used mostly glucose, a type of simple sugar, for energy metabolism. This seems to be critical in causing inflammation in the immune system and the tissue destruction that result from the disease. When the researchers blocked glucose metabolism by using the common type 2 diabetes drug metformin and a glucose inhibitor, the CD4 T-cells returned to normal activity and the symptoms of lupus were reversed.
The studies involved a number of mouse models of the disease and the key experimental findings were also observed in human CD4 T-cells from lupus patients.
The research team initially got the idea of using a two-pronged attack on lupus after seeing a similar approach succeed in cancer research, said Laurence Morel, Ph.D, director of experimental pathology and a professor of pathology, immunology and laboratory medicine in the UF College of Medicine.
“If it works to limit metabolism of cancer cells, it should work to limit metabolism in T-cells,” Morel said.
The treatment combination is especially effective in reversing lupus symptoms, the study found. It works by simultaneously preventing a T-cell from using glucose while also slowing the cell’s own metabolism, Morel said.
“If the T-cell is normal, the disease gets better,” she said.
Lupus affects more than 5 million people worldwide, and more than 16,000 new cases are diagnosed in the United States each year, according to the Lupus Foundation of America.
Lupus has no cure, and the Lupus Foundation says some scientists believe the disease arises from a combination of genetics, hormones and environmental factors.
Doctors around the world sometimes have to search for the right combination of medications to control lupus. The U.S. Food and Drug Administration has a short list of medicines, including steroids, aspirin and anti-malarial drugs, which can help control lupus symptoms.
The approach found by Morel and the other researchers goes beyond just controlling symptoms. Lupus-afflicted mice that were treated continuously for one to three months closely resembled those that did not have the disease, Morel said. The drug metformin’s effectiveness in restoring normal function in T-cells when studied in the laboratory also bodes well for its potential future application for treating patients with lupus. “That suggests we can also use metabolic inhibitors to treat patients,” Morel said. “It’s the first time that it has been shown that you can have an effect on lupus symptoms and manifestation by normalizing cellular metabolism.”
The study is also significant for its breakthrough in “drug repurposing,” Morel said. Using an existing diabetes medication like metformin to treat lupus is relatively cost-effective and the drug is already known to be safe for humans. New treatments that use an existing medication can also go to clinical trials more quickly because there are fewer FDA regulatory hurdles.
Next, Morel said, researchers will continue their efforts in two directions. One involves screening additional inhibitors targeting other metabolic pathways as well as studying patients who have been treated with metabolic inhibitors. The other involves searching for a deeper understanding of the molecular pathways that make metformin work.
Among the other UF researchers who worked on the project are Eric S. Sobel, M.D., Ph.D, an associate professor of rheumatology and clinical immunology; Byron P. Croker, M.D., Ph.D, a professor of renal and surgical pathology and UF’s primary renal pathologist; and Todd Brusko, Ph.D., an assistant professor in the UF Diabetes Institute from the department of pathology, immunology and laboratory medicine.
Their research was funded by grants from the National Institutes of Health and the Alliance for Lupus Research.
About the Author
Doug Bennett’s picture
Doug Bennett
Science Writer, Editor
Doug Bennett joined the UF Health staff in January 2015 as a science writer and editor. His topic areas include anatomy; biochemistry and molecular biology; molecular genetics and microbiology; pathology,…Read More
To all of my beautiful readers/ blog family!!!
To many, many more years of health, love, and light!
Xoxo,
Undefeated Diva
Never bend your head. Always hold it high. Look the world straight in the eye.
It is not always easy to hold your head up in the middle of a storm For many reasons it’s easier to look down. The only reason I look down is because it is the path of least resistance. When you are in the center of a storm, the last thing you want to do is answer questions. To answer questions or cater to anyone else’s emotions, do they not see you are in need of your own TLC? So to me it has always been easier to keep trucking. Often times people take not holding one’s head up as a sign of an insecurity. I often wonder if these people ever stop to think, maybe we just don’t want to talk to you it has nothing to do with insecurities. I quite frankly am very secure in who I am. Keeping my head low has nothing to do with who I am or how I feel about myself.
SO, on with today’s lesson. I spoke to someone I haven’t seen since I was around 7 years old. He was a good friend of the family and he told me today that whatever I do to keep my head up. You would think I had never hear this before, for heaven sakes I give this advice all of the time. Today, it was a little different. Today it hit me differently. I was hearing this message from someone I had not seen in over 20 years but someone that I considered family regardless of the distance. He told me ” Life is going to throw you things and with each passing decade it will throw you more difficulties, but it is up to you to hold your head up through the storm”. It may not sound as profound as it was but it was one of those moments where I took stock of everything around me for fear of forgetting that moment. Maybe it was profound because it was advice not given to me by just anyone. Maybe it was profound because it wasn’t someone just shooting from the hip and giving me advice that didn’t know me from a hole in the wall. Either way it was profound.
In that moment I took stock. I realized I have been in serious self preservation mode for nearly 6 months and probably longer. My current woes are no more serious or important than the next person. Self preservation is not bad, but when you allow self preservation to be all you live well that is no longer healthy. So today I looked up for the first time. I realized I was not looking people in the eye’s any more, today I did. I realized that although I am in the middle of what is one of the toughest years of my life, that I need to look up and hold my head high. Realistically, how else would I see the beauty ahead?
Everyone remember:
Happiness can be found, even in the darkest of times, if only one remembers to turn on the light!
Albus Dumbledore
XOXO
Undefeated Diva
Sometimes it’s the journey that teaches you a lot about your destination.
I have searched for the eject button on the recent path of my journey, to no avail. In the years since my diagnosis I have done what I always do, plow through, head held high, never looking back. As of late that methodology has not been as comforting. Life’s lemons are still sitting on my porch waiting to be made into it’s potent beverage. I have stared at them not quite understanding what to do with them, as my normal kick ass, straight forward approach has had me coming up drained and in the same place. Stagnant and drained are pretty substantial words to describe my current state of being. I have pondered and scoured for an answer to the “why” and it wasn’t until several days ago that I found the answer.
Let me be clear, my friendship with my chronic illnesses is nothing new. We are several years in and I thought that I had gotten a nice hold on them. What I wasn’t ready to admit to myself or the world around me was that, I no longer knew who I saw in the mirror. She looked familiar, she sounded familiar, but all in all not the same person. Really, it should have come as no surprise to me but it surly was. As I was in my beautiful world of deep cleaning and ridiculously loud music this week, the answer to the why was so very clear.
I no longer knew myself.
For someone that knew who she was and where she was going in life at a ridiculously young age this was a catastrophic blow. It all made sense though. The feeling of being lost and alone even when I was surrounded by the people that loved me most. The feeling of unease and uncertainty when I had the best support system someone could ask for. It all made perfect sense. When all you know is this semblance of a person that handles life with a vigorous fire that can never be snuffed, then you find yourself confused and depleted from life’s lemonade, you can’t help but feel shaken down. Right now, in my life I am getting a shake down. One day I woke up and I was in another body that had unimaginable pains, unclear thoughts from what could only be described as a foggy state, and a back bone that no longer stood straight. Who was this person? How did this happen?
Getting diagnosed wasn’t the hard part, reacquainting myself… well, with myself has been the most excruciating experience. Trying to do this while living life on life’s terms, well now your asking for too much. Having to work, be a wife, a daughter, and fuck it a productive member of society… All the while trying to understand what happened to you… Now that’s a damn epic mission. Nevertheless, I realized it and all of the missing pieces came together. I hadn’t realized that it was going to be a grieving process or even a process period. The vibrant woman was now a slower moving version of who she used to be. A more jaded and fatigued version of who she used to be. The woman that looks back at me in the mirror is tired, depleted, and honestly a little angry… Not the old me that was the fire spitting free spirit with endless energy. Can I place all of the blame on chronic illnesses? Well sure I can but that’s not who I am. I take responsibility for my actions and my part in the situation. I could have done more about my illnesses. I could have done some more soul searching. In the end, I won’t look back at what I could have done, to me thats a waste of perfectly good brain cells that I should preserve for days that the brain fog sets in.
So where do I go from here I asked myself. Well to the beach of course! So I find myself at the beach, searching for answers to questions I thought I already had the answers to. I am searching for answers and way to steer this new way of life for me. To figure out how to still be that firecracker powerhouse that is determined to teach the world all the while possessing a body that does not match the soul.
What I have come to realize in all of this is, this is normal guys. I am no different than anyone going through any struggle. It is real, it is normal, and it is going to be O.K. Now I just need to find sticky notes to help with the brain fog and some great heels!
Until Next Time.
XOXO,
Undefeated Diva!
A healthy outside starts from the inside.
To say I have never felt so welcomed in someones home, would be an understatement. After several Facebook conversations with Robin, the matriarch of Miss Lotties Farm the time had come to meet her. The excitement was beyond words.
Let me start at the beginning. Hey, I live with Lupus just in case none of you knew! The pain that has accompanied my Lupus has been astronomical as of late. My amazing father (President, Technical Edge Electric) so happened to be doing some work at Miss Lotties Farm, when a conversation was had concerning what the farm represented and his beautiful daughter. (Hell Yes… That’s me 🙂 )
After doing what of course was a phenomenal job by my father, he “harassed” me to come by and drop something off. When he arrived he handed me an insulated bag and instructions. He proceeded to explain the day’s happenings and how Miss Lotties Farm came to be and why what looked like a suspicious substance was now sitting on my counter. He explained that the suspicious substance were in fact leaves in the package, called Anamu (what a relief I was not going to be a suspect in any crime 🙂 )He went on to tell me about what Robin told him and how she wanted to be sure I researched all of the plants that Miss Lotties Farm has, prior to making any teas from the leaves. This woman obviously did not know I had a 10 degree PhD from Google University!!!
It took several day’s to finally sit and research and actually make the tea. After day 1 of drinking the tea, I was pissed at myself that I did not make the tea sooner! Although it did not fully expel my pain, it allowed for several hours of uninterrupted sleep. About a week or so after their initial meeting Robin did the one best customer service move, she reached out to both of us personally to see how things were going. After finding her email and speaking to her for several days, we set up a face to face meet and greet. There was no way I would keep this information to myself if it actually worked but I had to be sure that I went to the farm personally and legitimized the process before sharing it with all of you!
*See peeps, I have your back. Always know I will never put something out there that I have not tried personally.*
So back to the top. Myself and a friend drove the 45 minutes or so from my home to Miss Lotties Farm. The farm itself sits on the land just behind their home, which is actually their back yard but it’s to big to constitute as a “back yard” more like a back half of a football field. Before even getting out of the car completely, I already felt welcomed. We were greeted by Robin and Ron standing at their door, and ushering us in to their beautiful home. We quickly sat on their couches and without hesitation Robin says, “I do not know much about Lupus, what is Lupus?”. I respected that she did not attempt to hide behind some Web MD facts, or some hear say. She gave me the opportunity to do what many don’t, explain that it’s not a one size fits all disease!
After a nice conversation, we were ushered outside to what was the most beautiful sight. Rows and rows of healing possibilities just outside the confines of their porch. Now, Miss Lotties Farm carries three types of trees, Anamu, Moringa, and SourSop. Both Robin and Ron walked with us and discussed the inner workings of the farm and how it came to be. We were shown to the edge of the farm and were explained the plants, the way they run the farm, and the inner functionalities of each plant they have. Not once did Robin or Ron pretend they knew everything there is to know about healing alternatives, but for just starting the farm 14 months ago they were well versed in positivity and finding natural ways to heal the ailments. They both shared several amazing stories about how the plants helped people and you know what made me smile most? The fact that telling the stories brought such amazing smiles to both of their faces. Listening to both of them and visiting the farm cemented what I already knew. It cemented that these guys were not doing this for the money or notoriety, they were in the business of helping people and they took immense pride in this.
As the visit was coming to an end, I was almost saddened that I had to leave. I felt as though I had made friends for life. I left with a bag of each plant leaves and promised them I would return soon. On my way hope I went over the day’s events and smiled at the endless possibilities. I looked down at my packages and swore to my body I would do whatever it took to heal it.
Many of you out there know that sleep deprivation is one of the top complaints from someone with a Chronic Illness. I have made tea from Soursop leaves and have to say… I have slept every night I have had the tea, and I mean slept! For someone who was so very skeptical, I am a believer! Although, I still approach every situation with a skeptical eye because remember “If I can’t trust my body, how am I supposed to trust anything else?” Christina Gorgon.
I hope if any of you get anything from this, it’s to do some research on some natural alternatives. If you decide to order from Miss Lotties Farm, know that I have personally gone there and what you will get from them is nothing short of stellar!
Heres to kicking Lupus or your chronic illnesses ass!
XOXO,
Undefeated Diva!
Some Information:
Electrical Company Mentioned:
Technical Edge Electric:
http://technicaledgeinc.com/about-technical-edge-inc-electrical-contractors/
A small snippet of how Miss Lotties Farm came to be:
“January 2013 our 8 year old great niece Lottie had some health issues, so her mother put her on herbal supplements. Although they were purchased from a supplier’s website outside the United States, she made some improvements. Our family had some concerns regarding the quality of the herbs, such as how and where they were being grown and processed. ”
For the rest of the story, please visit:
Miss Lotties Website:
http://www.misslottiesfarm.com
You can also get up to date information at:
Miss Lotties Facebook:
https://www.facebook.com/pages/Miss-Lotties-Farm/1441952372724251
Below I have included a small bio for two of the three plants at Miss Lotties Farm:
Anamu:
| ANAMU | ||
| HERBAL PROPERTIES AND ACTIONS | ||
| Main Actions | Other Actions | Standard Dosage |
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Whole herb |
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Infusion: 1/4 to 1/2 cup 2-3 |
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times daily |
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Capsules: 1-3 g daily |
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SourSop:
Family: Annonaceae
Genus: Annona
Species: muricata
Synonyms: Annona macrocarpa, A. bonplandiana, A. cearensis, Guanabanus muricatus
Common names: Graviola, soursop, Brazilian paw paw, guanábana, guanábano, guanavana, guanaba, corossol épineux, huanaba, toge-banreisi, durian benggala, nangka blanda, cachiman épineux
Part Used: Leaves, fruit, seeds, bark, roots
From The Healing Power of Rainforest Herbs:
| GRAVIOLA | ||
| HERBAL PROPERTIES AND ACTIONS | ||
| Main Actions | Other Actions | Standard Dosage |
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Leaves |
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Infusion: 1 cup 3 times daily |
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Tincture: 2-4 ml 3 times daily |
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Capsules: 2 g 3 times daily |
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UNDEFEATED DIVA 