Tiffany Martin

I am a wife, mother of 2 , nurse and yoga teacher who led a pretty normal healthy life...I was diagnosed with Lupus 2/7/18. I walked into the emergency room with NO PAST MEDICAL HISTORY and ended up spending 1 week in the hospital, along with a few short procedures, tons of blood-work, and a daily medication regimen. Now prior to this, I didn’t even take Tylenol of Motrin,I was a “fix it yourselfer”, allow your body to heal on its one, etc. Talk about life changing! Throughout the entire process I have been so blessed, I have everything I need to be well and I know not everyone does. I am now on a mission to improve the lives of others battling this potentially devastating disease by raising awareness, funding for research, and support services for people affected by lupus across the globe. Because it is truly manageable with the proper resources. Without them, Lupus is devastating!
Community Voices

Bertotlottis Syndrome- An uncommon cause of back pain

It started over ten years ago when I was pregnant with my second child. I would get shooting pains down my left leg and buttock. Once while at work, I remember my coworkers thought I was going into labor because I was walking towards my patients’ room, and all of a sudden, I got a shooting pain in my left groin and buttocks that literally stopped me in my tracks. I asked my OBGYN about these weird pains, and she said it sounded like sciatica from the extra pressure of the baby, and it would get better after I delivered.

I delivered my son, and the shooting pains did subside, but over the next year and a half, I started noticing lower back pain, a constant dull stiff kind of ache. It didn’t bother me much unless I sat, walked, or stood too long. It was easily relieved by changing my position and taking Tylenol. After a while, I decided I couldn’t keep taking Tylenol for the rest of my life, so I figured I needed to heal my back. I also had diastasis recti from pregnancy and knew that I needed to strengthen my core. The idea was to start an exercise program to strengthen my core, and by strengthening my core, my back wouldn’t have to work so hard, and maybe the pain would go away?

I chose yoga! I was initially focused on core strength, and I began doing planks, arm balances, and all kinds of challenging poses. I ended up injuring my shoulder a few times because I lacked core strength and my alignment was off. I had no business as a self-taught yogi trying to do advanced poses. At this point, I decided to take a more gentle approach and started looking into restorative and therapeutic yoga. I had found my niche! I loved Iyengar yoga because of the focus on alignment and therapeutic approach. Just doing a few poses a day cat/cow, mountain, downward dog, tree, warrior, I started to notice my back pain was better. I no longer had to carry Tylenol everywhere, and I could sit, stand, and walk without pain!.

My back didn’t bother me for years; I think because I did so much yoga. By so much, maybe 10-15 minutes of a couple poses a few times a week. I was also very intentional about my posture during the day. But then things started to get crazy again a few years later. I got diagnosed with lupus and couldn’t do the level of yoga I was doing before. I began to notice standing poses would exhaust me, my knees and hips would hurt, and it seemed almost any pose caused that sciatic and low back pain to exacerbate. Driving also became an issue. My 1 hr commute to work would leave me limping from my car. My hips and low back would get so sore just from driving to work.

Since yoga was causing me issues, I turned to Yoga Nidra, chair yoga, and walking. But with walking, the same thing would happen, after about 10 minutes or so my hips would hurt, especially the right hip and I’d be limping, my knees hurt and felt like they couldn’t support my weight. This was when I got nervous because I thought I developed avascular necrosis. I told my rheumatologist, and she ordered Xrays. My hips looked fine on Xray, but she was concerned about my sacroiliac joint. It showed some irregularities,so she ordered an Xray of the SI joint. This Xray then showed both my SI joints had what looked like inflammatory changes. It also picked up “transitional vertebrae”. She orders an MRI to rule out active inflammation because she was concerned I had ankylosing spondylitis. The MRI was fine… it showed the same damage to my SI joints but no active inflammation. The MRI also confirmed Bertolittis syndrome and picked up Tarlov cysts. I was then referred to a sports medicine MD and physical therapy. This is where I am today, awaiting my appointments while dealing with this mildly annoying low back pain and difficulty walking, sitting, and standing. I thank God the pain isn’t severe and that I don’t have another inflammatory condition.

At the beginning of my back pain journey, I knew something had to be wrong, but I also knew that the options for me would be medicine and/or surgery, and I didn’t want that. I knew yoga would help, and it did. Most of what I’ve read so far about Bertolotti’s syndrome and tarlov systs recommend surgery, and most patients have a lot of pain. This leaves me to wonder if yoga has kept my pain from getting severe? Will I need surgery to get rid of the pain ultimately? Will it get worse if I don’t do surgery? Have I been harming myself with my own self-prescribed exercise regimens? To be continued!

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losing control.

I thought I had it all figured out. I thought I was the one in control of my body, not you! not you at all lupus. I was confident. I was positive & I thought I was content with myself. I thought I accepted you lupus, but it turns out here I am grieving. I am grieving the person I used to be. I don’t even know who I am anymore. I’ve lost my way. I’ve lost my strength and in the end.... you have control over me lupus. you have all the power because here I am unable to budge. My body aches. My head is hurting and I am just in pain. I am losing control....

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Daily lupus life

If I had to sum it up... you never feel “normal” you always feel a bit off, worn down, sick but the show must go on . My baseline is feeling like I have a cold.. just run down, sore achy, when I have a mild flare it feels like having the flu while trying to run a marathon, when I have a severe flare I am hospitalized... not even enough energy to eat , pretty much incapacitated, fighting to keep my vital organs from failing . This is just a very brief overview.... too many symptoms to name and with brain fog I can’t remembwr them anyway 🤦🏽‍♀️

Paige Wyant

12 Small Lifestyle Changes That Can Help People With Lupus

Though everyone with lupus is different, one thing many “lupies” have in common is that they’ve made changes to their lifestyle to help them better manage their condition. Many have found that adopting certain behaviors or practices into their daily routine has helped reduce symptoms or avoid major flare-ups.Lupus is a chronic autoimmune disease that can affect just about any organ or body part. It causes your immune system to mistakenly attack your body’s healthy tissue, leading to inflammation, pain and damage to various parts of your body. According to the Lupus Foundation of America, there are four different types of lupus, each of which has a different cause and symptoms. Some of the most common symptoms include fatigue, joint pain, fever, photosensitivity, skin rashes and headaches.The lifestyle changes people with lupus make vary depending on the type of lupus they have and the unique set of symptoms they experience. Of course, it’s important to talk with your doctor about any changes you want to make to your health (and keep doing any prescribed treatments you’ve already discussed). But it can also be helpful to hear what changes have made life a little bit easier for other people with lupus. That’s why we asked our Mighty community to share a “small,” but significant lifestyle change that helps them manage their symptoms and cope with lupus.Everyone experiences the illness differently and responds in unique ways to treatments and lifestyle changes, but perhaps some of the following ideas can be helpful as you navigate life with lupus. Let us know if you have any additional ideas in the comments below! Here’s what our community shared with us: 1. Getting Enough Rest “ Rest!!!!! I used to run morning to night until lupus took over. I fought it for years but have realized that rest is my best friend.” – Marisa P. “ Resting in my bed all day when I have to. If I’ve overdone it a day or two before (even though I try not to) and my body goes into a flare, I take care of me and just rest.” – Jzanyt D.B. Related: When I Finally Learned to Give My Body the Rest It Needs The Difference Between ‘Rest’ and ‘Bad’ Days for My Chronic Illness 2. Being Open and Honest With Your Family “ Explaining lupus to my kids. My oldest (13) will notice if I’m struggling and actually make eggs for dinner for his siblings, especially if I fall asleep. He refuses to wake me up. Even my 4-year-old will say, ‘no mom. Your lupus is bad today. Your hands hurt. Dad can make my cwocate (chocolate) milk.’ He’s even told his preschool teachers about it. We have always raised them to know we help each other as a family, but they are graciously living it.” – Tracy B.S. Related: The Importance of Being Honest With Your Loved Ones About How You Feel Instead of Saying ‘I’m Fine,’ I’m Trying to Be Honest About How I Feel 3. Taking Care of Your Mental Health “ I rest and while I rest I seek places in my mind where there are memories of better health, happiness and gratitude. I have to be mindful of my mental health.” – Linda A.R. Related: My 8 Mental Health Coping Strategies for Living With Lupus Embracing the Dark Side of Lupus That Hides Behind My Smile 4. Saying ‘No’ “ Learning the word ‘ no.’ I’m a people pleaser and I hate letting people down. But, I learned very fast that ‘Life in the Land of Lupus’ does not accommodate people pleasing if you are in a flare or your body just is done. I’ve learned to politely decline invitations that I know I just will not be able to push my body to attend. I’ve learned to say no to requests of my time that I don’t have the extra ‘spoons’ for. It was a really hard lesson for me, but it’s made a huge difference. Oh, and naps. Lots and lots of naps.” – Amanda C.N. “ Self-care first. I’ve learned to say no to things I would have said yes to and paid dearly for that yes!” – Susan A. Related: The Power of Saying ‘No’ When You’re Chronically Ill Why I Won’t Apologize for Saying ‘No’ Because of My Health 5. Avoiding Stress “ Situations, people, or places that are sources of stress I stay away from. On the other side of that coin is that things that bring me peace and contentment I embrace.” – Gail R. Related: The Secret I Learned to Dealing With the Stress of Chronic Illness 4 Ways I Manage the Emotional Stress That Comes With Chronic Illness 6. Educating Others About Lupus “ Talking about it all the time! Educating those in my everyday life about lupus, if they hear about it enough, they will understand where I’m coming from, and then it takes my guilt of me taking care of me away. They begin to understand my rest days, me leaving events early, why I can’t drink, why I sleep early, all the meds, etc. And it eliminates those from my life who don’t want to understand as well, gets that negativity out of my life.” – Nicole N. Related: Why I’ll Be Unapologetically Vocal About My Life With Lupus Why Lupus Awareness Is Key to a Cure 7. Limiting Time on Social Media “This may sound completely weird but I took myself completely off Facebook and other sources of social media. (Besides [The Mighty] and Pinterest) I was finding it too stressful with unnecessary drama and it was causing way much stress mentally and then draining me physically. My flares of lupus are bad enough without the added stress of the junk I was seeing on social media.” – Anna G. Related: When Chronic Illness Makes It Hurtful to Look at Social Media Why I’m Leaving Social Media as Someone With Chronic Illness 8. Having Groceries Delivered “ I pay a once-a-year membership fee and have my groceries delivered. It preserves the small amount of energy I have and I can expend it in happier, more productive places.” – Awyn F. Related: 6 Ways to Make Food Shopping Easier If You Have a Chronic Illness The 11 Best Subscription Services for People With Chronic Pain 9. Constantly Applying Sunscreen “ Not being able to be in the sun is really difficult, especially as a mother. I also am constantly reapplying and purchasing sunscreen. Since lupies need it even inside (thanks fluorescent lighting), it gets expensive!” – Courtney V.A. “ Sunscreen, sunscreen, sunscreen… even indoors!” – Kelly F. Related: 17 Summer Essentials for People Who Are Sensitive to Light 13 Products People With Lupus Swear By 10. Conserving Your Energy “ Not walking when I don’t have to! Using a wheelchair where available makes me more able to move around for the rest of my day.” – Ashleigh S. Related: 5 Pacing Strategies That Help Me Manage My Chronic Illness 23 Spoonie Hacks That Can Make Life With Chronic Illness Way Easier 11. Staying Out of the Sun “ I stay 100 percent out of the sun, UV clothing and when I want to look like I have a tan I spray tan. UV photosensitive reactions and flares are not worth it.” – Katie L. “ Naps and staying out of the sun and heat.” – Jackie C. Related: 10 Wearable Ways People With Lupus Can Protect Themselves From the Sun How the Sun Affects My Skin Because of Lupus 12. Building a Community Around You “ Building a community comprised of friends, family (if you have family that understands as best as they can that you are ill), and other people with lupus or any other spoonies that you connect with regularly. Connection is so important when you are a spoonie. And not just connecting to cope or deal with chronic illness. Connecting to feel human. To laugh. To cry. To be there for them, too. Someone(s) you can count on always. Someone(s) you can laugh with. Someone(s) who will hang out with you in recliners and watch Netflix. Someone(s) that will listen, or hold your hand while you cry or endure another painful procedure. It takes a village, and not just for spoonies. We all need a village.” – Kristin M.K. Related: What the Newly Empowered Chronic Illness Community Means to Me The Importance of Kindness and Support When You’re Chronically Ill What’s a “small,” but significant lifestyle change that has helped you manage your lupus? Let us know what you would add in the comments below! You don’t have to go through the ups and downs of lupus alone. Connect with others in our community 24/7 to give and receive support, tips, distraction and encouragement.

Community Voices

Lupus fatigue

This morning I woke up 6am felt ok not terribly tired or stiff. I let my dog out, got dressed, made coffee, ate a small snack and had bible study. I did a short meditation after bible study... 5 minutes then felt like I needed another 5. I then felt so exhausted I needed a nap, couldn’t understand why but I just fell asleep. Slept almost 2 hours and still felt wiped out. It’s embarrassing for my kids to see me this way, they probably think I am depressed or lazy. My daughter asked “why are you so tired” and I couldn’t answer her. I am not gonna try to figure out why I feel like this, I am not gonna complain or look for stories to validate how I feel. I am just gonna move along with my day the best I can. I don’t know why this surprises me as every since being diagnosed over a year ago, I’ve needed morning naps 🤷🏽‍♀️

#Lupus #Fatigue

Lupus Has Made My Life Better

After two years of learning to live with my diagnosis, I can finally see that some positive things have happened since I found out I have lupus. When I was first diagnosed, I spent most of my time and energy just learning how to get through each day. Although I didn’t realize it at the time, one by one I was making some important and significant changes that have made my life better. 1. I’ve started saying no. I no longer say yes every time someone asks me to do something. There was a time (my entire life really) when I struggled with saying no to people. If my boss asked me to work overtime, or a friend asked to borrow money, I could never say no. It didn’t matter if I already had plans or was low on funds. It was like saying no was a skill I had just never learned. And honestly, I felt guilty for even wanting to say no. Lupus changed that. I learned pretty quickly that lupus leaves me with an energy deficit early in the day if I don’t pace myself right from the start. Each day begins with a finite amount of energy — an “energy budget.” Learning how to balance my energy budget was a crucial skill and it took me a lot of time and practice to get it right. I can do quite a few things most days, but can seldom do everything I want to do. Some things just have to wait for the next day. If I overdo it today, it may very well take me two or three days to get back to where I started. I’ve found that people don’t really understand — not family, friends or co-workers. I had to realize that if I didn’t start saying no, I was going to burn out quickly. It is my responsibility to look after me. I can only do that if I am able to say no when I need to. 2. I’ve stopped caring what everyone thinks. This was a huge change. I used to worry a lot about what people thought of me. So much of my self-image was dependent on being a hard worker and being reliable. I never wanted anyone to think I was a “slacker.” For my entire career, I could count on one hand the number of times I had taken a sick day. But lupus is such an unpredictable disease: you never know from one day to the next (or even one hour to the next) what it is going to do to you. So I had to let go of my fear of others’ opinions. If I can’t get out of bed one morning because the pain is just too awful, I refuse to spend that entire recovery day worrying people don’t believe or understand. 3. I’m no longer afraid to ride the “big” coasters. I have always been a theme park nerd. But I admit, some of those roller coasters are just plain scary. Every year when we made our way to Orlando to Disney and Universal, I would promise myself “this is the year I am going on the Rip Ride Rockit, or Hulk,” but of course I never did. Somehow, finding out and accepting I have this disease was liberating; being afraid of a roller coaster didn’t seem to make a lot of sense anymore when I compared it to the challenge of living with lupus. So I decided not to let an irrational fear stop me from doing something I had wanted to do for a long time. And yes, it was awesome! 4. I’ve stopped holding grudges. I have learned from dealing with this disease that holding a grudge is just too stressful. And stress is one of the major triggers for lupus. As well as being the right thing to do, letting go of grudges is the healthiest choice I can make for myself. And thanks to the lupus brain fog, I just can’t spare all the energy it takes to remember why I was holding that grudge in the first place. 5. I’ve learned to “chill.” Taking a break is not a weakness. In my pre-lupus days, I would get up before the alarm even went off and go non-stop all day long. It seemed like there were more things that needed to get done than there were hours in the day. I didn’t even take time for lunch breaks at work. Now I’m forced to take breaks just to get through the day. There are even days when I am wrung out by noon, and my 30-minute lunch break turns into a 30-minute nap. Now when I have an energy deficit, I take a break, and I don’t feel quite as guilty about it as I used to. 6. I’ve let go of vanity. Once upon a time I looked so much different than I do now. To be completely honest, there are still days when I avoid mirrors because I just don’t like what I see. The prednisone makes my face puffy (or cushingoid as my doctor calls it), and my cheeks are red from the malar rash. I have put on so much weight from the steroids and cannot seem to get it off. I have bruises everywhere. I’m a visual mess. On the flip side, my quality of life is good. While there are days when I still mourn the loss of how I used to look, I am grateful the medications help with the pain and inflammation of lupus. I cannot imagine where I would be today without them. The people who love me don’t care that my appearance has changed. I am still me — just a bigger, better version of me. 7. I’ve learned to accept help. My husband says I’m stubborn. I call it being independent. Whichever one of us is right, I have learned that at times I do have to accept help, whether I want to or not. And let me just tell you: it is humbling. When I was first diagnosed with lupus, I wasn’t able to walk for more than 100 feet without having to stop and rest. I remember the rheumatologist looking at me in amazement and asking “do you realize your sed rate is 110?” I just knew I hurt. Everywhere. I look back now and realize I could have made things so much easier on myself then just by accepting a little bit of help. But instead, I made it harder because I didn’t know how to let anyone help. My poor husband. I’ve come a lot closer to accepting my diagnosis today, but there are still times when I have to remind myself it is OK to let my husband or children do things I used to do myself. 8. I’ve quit being “the fixer.” Every family has one. As the oldest child, I was the self-appointed fixer of problems. When my siblings needed advice or help, they called. But things changed when I got sick. I lost my focus and no longer had the energy to help like I wanted to. I couldn’t even solve my own problems anymore. So I gave up the role I had created and taken on myself. Turns out, they do just fine without me. Some days I wonder if I was ever quite as helpful as I thought. 9. I’ve started to see the value in frivolity. A massage? Getting my nails done? A spa day? At one time I felt they were a waste of time and money. Oh my, I did not know what I was missing. It turns out the things I used to think were frivolous are some of the most wonderful and relaxing experiences for me now. I don’t know if I ever would have slowed down enough to try them in my old life. The therapeutic value of an hour of relaxation cannot be overstated. It just helps. 10. I’ve stopped saying “Someday I’m gonna…” Like most people, I’ve always put off doing the things I’ve wanted to do until “someday.” For instance, my husband and I have talked for years about becoming snowbirds. We just figured we would do it when we turned 65 and retired. We never spent any real time trying to figure out how to make it happen now, while we are young enough to enjoy it. The reasons why we couldn’t do it now seemed so obvious and insurmountable that we didn’t even seriously try to look for ways to make it happen. When I learned I have lupus and my doctor started talking about things in terms of “number of years,” it felt like my priorities changed right then and there. The things that had seemed so important before just weren’t anymore. All of a sudden, getting out of the cold and snow here in northern Maine for three or four months seemed entirely possible. Why not? If we wait another 10 years, I may not be able to go at all. I am no longer willing to wait. Lupus has taught me to live for today, not for someday. And that is the major bright side of this disease for me.

Community Voices

If you have #Lupus, what’s something you need to hear today?

<p>If you have <a class="tm-topic-link mighty-topic" title="Lupus" href="/topic/lupus/" data-id="5b23ce9700553f33fe996d9b" data-name="Lupus" aria-label="hashtag Lupus">#Lupus</a>, what’s something you need to hear today?</p>
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Community Voices

#Lupus Awareness Month

I stumbled so many times in the past few weeks with the lupus flares that I am still trying to figure out what is happening with my body. Why has it been so tough to get back on my feet? I am working hard and focusing all my attention to overcome this phase. Nevertheless, I am not quite getting where I would like to be.
For a couple of days, I feel strong and then exhausted. It’s a cycle. Pain and stiffness are back, the restless sensation of not finding a good position is all over my body, and I want to fast-forward time. I wish I could use some pixie dust, open a window, and feel painless again.
My path has been bumpy. Scenery and people around me have changed, and I am still trying to climb to the top of the hill, above the clouds to get a better view of life.
Recharging the BatteriesThis week, I started to think of new ideas to raise up my positiveness, bring back my upbeat spirit, and fill my moments with joy, contentment, and hope. While thinking out loud about what cheers me up, I decided to make a feel-good checklist, that I would like to share with you:
1. Be more often in contact with Nature. I try to spend 5-10 minutes doing my yoga stretches and taking long, deep breaths outside. I remind myself of the beauty and grandeur of the Northwest – the lush trees, mountains, and the beautiful sky. I am so small in comparison to all the beauty around me, and being mindful of it, helps me put my challenges in a better perspective.
2. Don’t be self-defeating. A negative thought that keeps coming back, a bad habit of focusing on flaws and gaps, instead of my strengths and blessings. Maybe it’s time to put more fun in my day, including things I like to do more often and rely on things that give pleasure and nurture my soul.
3. Friendships. People are busy, and many times life consumes me to the point that I miss the opportunity of shared moments. This week, I took the extra step to connect with some of my pals here and abroad; to lend an ear, and share a laugh. When I hang out with people I love, and we talk about good memories, share silly jokes and funny stories, a new world opens around me.

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