autoimmune

#Fibromyalgia #autoimmune # lupus

Last night I had a 2nd serious heart attack since the one in 2000. I’ve been having slight afib flutters periodically for weeks but my limited time with my GP last week was taken up completely with a much more urgent issue, and my cardiologist app’t is only weeks away. WHOMP! 🧨⚡️Outta nowhere!!
I’m going thru these deep crying times, because I know I have to find a good home for my beloved 1 yr old cat right away. And I JUST told my children I was diagnosed with cancer last week! One conversation was especially difficult, although I’ve talked with them about my failing health and plans for my death. I know now, it can be seriously closer than I thought, and I know it is coming. Tomorrow certainly is never promised. I have a lot of cleaning to do. I’m posting this while resting. Will wait till after Easter to talk again with my kiddos and grands, God willing. “Be still and know that I AM God.” 🙌
Well I’m here until I’m not and Surfing Life with The Lord is One AMAZING RIDE! Trust in Him with All your Heart , Live Confidently, Love 💕 Yourself as He loved you before He gave you birth, then love One Another all day, everyday and pass it on. Pray non-stop by offering your life as homage to the glorious person He made you to leave your “Specialness”-imprint in this Life, as no one else BUT you ever can! Surround yourself with Peace and an abundance of Joy, & give that healing hope all away often. Be the Blessing you want to receive to those who least deserve it. With thanksgiving and praise to God, Our Father, in the Holy Name of Jesus Christ, His Son and Lord, thru the infinite power of His Holy Spirit, Amen. This one was really rough. Till whenever, blessings.
Thanx for listening. ♥️

Sacredsavage @ iameveryoneeverywhere

As a Reiki Master practitioner and a student of yoga for 25 years, I have personally benefited from complementary modalities over the years -- long before my Sjogren's diagnosis (a serious, complex systemic autoimmune disease).

Before I launch into how I have personally experienced positive benefits from complementary therapies, remember that you have full autonomy over your body. What works for me may not appeal to you, and/or work for your body's specific needs and your symptoms.

Listen and pay attention to the signs and messages your body sends you. Do not push your body to the point of extreme pain, or allow any practitioner to tell you what you should do with your body. You know your body the best!

As a Sjogren's patient, I deal with a myriad of complex systemic issues and also have severe spinal stenosis so I deal with physical limitations. In the past, I hiked long distances but I can still enjoy outdoor walks in nature albeit my walking mileage is reduced. I am also a former dance fitness instructor so dancing and movement have always brought me great joy in my life.

While I also take prescription medication for Sjogren's and see multiple Western healthcare specialists, I also listen to what my body needs outside the parameters of Western-based medicine. I see a Traditional Chinese Medicine acupuncturist and I have found pain relief and ease of my symptoms through regular acupuncture sessions.

If acupuncture sounds too invasive or you dislike the thought of needles (although acupuncture needles are small and painless), there are other modalities such as gentle massage, Reiki (which can either be done hands-on or hands off), Bowen therapy, craniosacral therapy, EFT/tapping, myofascial release, aromatherapy, sound healing, and yoga nidra.

Reiki is a non-invasive healing modality. Studies show that reiki can help reduce stress and anxiety, and ease pain and help relieve symptoms related to chronic illness. Like acupuncture and massage, it is recommended to have Reiki sessions done on a regular basis.

While I personally tout the benefits of yin yoga to stretch my connective tissue and lubricate joints, I understand that yoga is not an option for some patients based on their limited mobility.

While other yoga styles focus on the muscles (Yan style of practice), yin yoga is a passive practice that holds yoga poses/stretches between 3 to 5 minutes. Chair yoga is another option if you are unable to sit or lie down on the floor.

Last year I added qigong to my daily self-care routine. Qigong is a gentle movement practice rooted in Traditional Chinese Medicine. It coordinates breathwork and meditation as you move through a series of slow-paced body postures and flowing movements. Qigong is very relaxing and as someone who deals with bouts of anxiety, it helps ground me and release tension and stress.

If interested in exploring alternative therapy modalities, along with Western medical care, I encourage you to be curious and ask yourself what sounds or feels good to your body.

Discuss with your doctors before starting a new movement practice such as yoga or quigong. Vet practitioners and research them online. Make sure they are certified and licensed practitioners. Read their client testimonials and reviews. Ideally, they should have experience working with clients who have a chronic illness.

There is no "one-size-fits-all" when it comes to exploring non-Western complementary therapies. If one doesn't work out for you, try out a different modality or practitioners. Look into community-based acupuncture centers which usually offer lower rates or research your insurance plan to find out if acupuncture is covered (some plans sometimes cover massage therapy).

Self-care is not selfish and dealing with a chronic illness can drain us not only physically but emotionally and mentally. I have personally benefited from looking outside Western medicine to help ease my physical pain and bring me comfort and peace throughout my chronic illness journey. I encourage you to find what works for you and remember you are not alone in your journey.

#sjogrens #autoimmune #Reiki #Acupuncture #massagetherapy #traditionalchinesemedicine

I’m sick. Again. Face redness, swollen glands under my jaw, mouth sores, pain, fatigue, brain fog, mood swings, headaches, loss of appetite, sleepless but so tired - sick. I see the rheumatologist in two days, but I have little hope of getting any more answers. It’s exhausting to be sick all the time. Although, I prefer the predictability of past times of consistent illness to the unpredictability of the flares I experience now. I need answers so that we can start treating the illness instead of just the symptoms. I’m so ready for true physical rest.
#Undiagnosed #autoimmune #Lupus ? #sjogrens ?

Hi, my name is Talbertn85. I'm here because

#MightyTogether #RheumatoidArthritis #Migraine #autoimmune diseasesurvivor #addisons #Lems

I have a friend who was diagnosed today with Behçet’s disease. It’s rare overall but is rarer here in Canada. After doing some brief online research, this looks like it’s going to be really rough for her (she’s currently admitted in a hospital out of town for testing better than she could receive here). I personally have ME/CFS and POTS, so I know the generic how to help somebody with chronic illness tips, but wondering if anybody here has Behcets or knows somebody with Behcets and can give me some advice on how to support her? Thanks in advance :)
#BehcetsDisease #autoimmune
#chronicallychillteens

Hi everyone. Thanks so much for joining. We are growing pretty quick! I am seeing a lot of people posting about having multiple conditions. I’m also reading some folks are just recently diagnosed and looking for tips for themselves or a loved one. I thought it might be interesting to follow up on the earlier question of “what caused your autoimmune condition” to explore what we think or understand about how/why our second, third+ conditions came to be.

For me, I only had one disease for 15 years (#AplasticAnemia that morphed into #PNH , which is a pretty normal disease progression). With treatment, I was able to live a pretty normal life - so much so that I was able to join a rowing club, which was a sport I had loved when younger. It was a great community organization located in a low-income area and they made it affordable for anyone who wanted to row. I had a lot of friends there and it was a big part of my life.

Over a couple years I got stronger and was able to join a boat with the stronger guys on the team and we became competitive. It was amazing to be able to be a part of that 4-person boat and we started preparing for a race. Then two things happened that I wish I had been more careful about - because I pushed myself too hard and I think that caused my second #autoimmune condition.

The two things were that the boat had a pull to one side, and then one of the other guys got switched out with a rower who had less experience. It was a “sweep” boat which means each of us only had one oar - 2 of us rowing on one side and the other two pulling on the other side of the boat. The way it worked out, the newer/weaker rower was paired up with me. The two other guys were super strong, over 200lbs each and super strong - and then on the other side was me with my autoimmune #Anemia , trying to pull harder to support the newer guy, so the boat would stay straight. What’s more, the boat’s rudder problem meant it was pulling to our side already, and we had to make up for that as well.

This played out in a few practices where the boat would be turning and my teammates would be yelling for us to pull harder to keep it straight. It was really intense work. After, I remember saying kind of quietly, this is a little too much for me. I wanted them to hear me and suggest switching seats to balance things out. What I look back and wish I had done differently was to really speak up for myself and say, Hey I need to switch seats, I can’t make up for this imbalance. I wish I’d listened to my body and accepted my limits. But I didn’t want to stick out or bother anyone, so I kept trying to make it work. I think this was my mistake.

Eventually it was race day and my boat was scheduled for not one but two 1,000-meter sprints. At the end of the second one, pulling as hard as I could, I felt like my lungs got all gravelly and sharp, like I’d breathed in a ton of smoke or singed my lungs somehow. Over the following year, I developed a strange cluster of symptoms that an allergist/immunologist eventually concluded was probably #MastCellActivationDisorder or Syndrome (#MCAS /#MCAD ), a dysregulation of the cells that store leukotrines, cytokines, histamine & more—things that help us fight off allergens and invaders and rally the rest of the immune response. It turns out that river I rowed on in that low-income community has one of the highest concentrations of pollen and smog, and was also a decommissioned superfund site. All toxins that I was sucking into my body super deep as I rowed and breathed as hard as my lungs could work.

To this day, I’m super sensitive and knocked out by any amount of pollen in the air and wear a mask outside most the time, even while taking my doctor’s recommendation of 4x the RDA of Zyrtec, plus an antihistamine that’s not even approved in the US, plus a nightly asthma maintenance QVAR puffer. My mast cells got way overstimulated or something during rowing that year, maybe that specific second race, and now they are trigger-happy to spill their immune response contents into my bloodstream, causing me to go short of breath, flush & itch everywhere, and cause my bowels to vacate at the slightest provocation.

I’m a bit of a storyteller and I know this is long, but I think it’s important to remember that with systems as sensitive as ours with autoimmunity, even isolated instances of intense stress or overdoing it can push us over the threshold of what our bodies can manage, and sometimes lead to lasting/lifelong effects like additional autoimmune responses.

So for those of us who are new as well as those of us who have been living with #autoimmunity for years, the advice to “take care of ourselves” is super important and something a lot of us may need to learn how to do. I never learned how to identify or respect my limits growing up, in fact I was kind of required to constantly live beyond my limits. I think that led me to chronically push myself harder than was healthy and now I have a few autoimmune diseases to show for it now. We can’t always control or prevent stress that comes our way, but I think we can avoid piling it on with some of our decisions.

So I am working on and hope you all can give yourselves permission to say no, not feel guilty for resting & recuperating, speak up when things are too much, and learn to love the experience of our bodies just as they are.

Love you all. If you have stories to share, I would love to hear them,

Hi, my name is WonderWoman_1973. I'm here because I want to be able to not only share my own experiences with others, but also learn about others' experiences by asking lots of questions and comparing experiences to learn more! Support from a community of people who have things in common with one's self can be one of the greatest "physicians."

#multi-organ transplant (5)
#pulmonary Embolism
#Hypothyroidism (under active Thyroid)
#Antiphospholipid Syndrome
#autoimmune thrombosis
#breast cancer survivor
#lymphoma survivor#multi