Aplastic Anemia

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What are we celebrating?! (MARCH)

national developmental disabilities month
Women’s history
National MS Education and Awareness Month
March 1-31: Alport Awareness Month March 1-31: Brain Injury Awareness Month
March 1-31: Brain Tumor Awareness Month (UK only)
March 1-31: Deep-Vein Thrombosis Awareness Month
March 1-31: Malignant Hyperthermia Awareness Month
March 1-31: Multiple Sclerosis Awareness Month
March 1-31: Myeloma Action Month
March 1-31: National Bleeding Disorders Awareness Month
March 1-31: National Cheerleading Safety Month
March 1-31: National Colorectal Cancers Awareness Month
March 1-31: National Endometriosis Awareness Month
March 1-31: National Kidney Month
March 1-31: National Nutrition Month
March 1-31: Problem Gambling Awareness Month
March 1-31: Save Your Vision Month
March 1-31: Trisomy Awareness Month
March 1-31: Workplace Eye Wellness Month
March 1-6: National Aplastic Anemia & MDS Awareness Week
March 2: World Teen Mental Wellness Day
March 3: World Birth Defects Day
March 3: World Hearing Day
March 4: HPV Awareness Day
March 4: World Obesity Day
March 5: Dissociative Identity Disorder Awareness Day
March 7: National Hospitalist Day
March 10: National Women and Girls HIV/AIDS Awareness Day
March 10-16: Patient Safety Awareness Week
March 10-16: Pulmonary Rehabilitation Week
March 10-16: Sleep Awareness Week
March 11-17: Brain Awareness Week
March 14: World Kidney Day
March 15: World Sleep Day
March 17-23: National Poison Prevention Week
March 18-24: National Drug and Alcohol Facts Week
March 20: National Native American HIV/AIDS Awareness Day
March 20: World Oral Health Day
March 21: World Down Syndrome Day
March 24: World Tuberculosis Day
March 26: Epilepsy Awareness – Purple Day
March 26: American Diabetes Alert Day
March 30: National Doctors’ Day
March 30: World Bipolar Day
March 17: Saint Patrick’s Day
March: autoimmune diseases awareness month

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Can overdoing it lead to 2nd & 3rd autoimmune conditions?

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,

(edited)
22 reactions 5 comments
Post

What caused your autoimmune disease?

Hi all, I’m curious to know what you’ve been told or what you suspect as being the cause of why you became autoimmune in the first place.

When I first got Aplastic Anemia in fall of 2001, I visited the leading expert in the disease at the National Institutes of Health. He told me that usually with AA and other autoimmune diseases, if they look at a patient’s history 3-6 months before diagnosis, there was some virus or infection that our body’s immune system had a particularly hard time fighting off.

This totally matched my experience of the prior winter when I had my annual outbreak of HSV sores in my throat, which I got a few years before. The sores made it painful to swallow, drink or eat. Years past this happened during a school break so I had a month+ to rest and recover. But in 2001 I had left school & was working to support myself, without sick leave, trying to make rent for the first time in a miserable NYC winter. Each day I had to decide whether to go to work to earn money or stay home and heal but get further behind on rent. It was incredibly stressful and as a result, the virus went on and on for almost 2 months before they finally gave me acyclovir, which I wish they’d offered me earlier on.

The NIH doctor’s theory was that when the body tries but can’t seem to kick a virus/infection after a long time, eventually it will ramp up into kind of a hyperdrive, like a last-ditch effort where it goes on a rampage but in the process gets less discriminate about what it is attacking. It ends up attacking some of our own healthy/normal tissue, and in the process gets confused and learns to identify that healthy tissue long-term as a foreign invader. This sets us up for the lifelong self-attack called autoimmunity.

I don’t think we can know for sure what caused the onset of our autoimmune conditions, but for me this experience & doctor’s explanation make a lot of sense to me. It all started with that long virus I couldn’t beat during that miserable and stressful first NYC winter on my own.

Do any of you have similar memories or stories?

41 reactions 17 comments
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Youtubers with chronicillnesses and disabilities

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Not All Disability is Visible

♥️🧡💛💚💙💜
Warning Long Message. Please take time to read. Thank you
I wish more people understood...
What she has is not a cold or the flu. She will never get better. A nap won't help. She is not lazy but she is tired to the point of a lethargic state. She's on meds to try to make it easier to thrive and merely survive. Many people say that she's faking it or that she just needs to push through it. Well sometimes she can push through the pain and live her life, but there are days where she can't walk without having to hold on to something. Her joints hurt. Her body hurts. Her mood varies, and she is sad a lot. She tries to control her mood swings and intermittent bouts of depression. She takes her meds daily, and more vitamins than you could fathom, to help keep her up but most days nothing works.

She has an autoimmune disease.🦄

I'm watching those of you who will take the time to read this all the way to the end.

🌺To see who reads and who shares without reading please, in honor of someone who is fighting MS, Chronic Lyme Disease, Dermatomyositis, Lupus, Graves Disease, Scleroderma, Ulcerative Colitis, Fibromyalgia, Sjogren's syndrome, Crohn's, Sarcoidosis, Osteoarthritis, Rheumatoid Arthritis, Celiac, Hashimotos Thyroiditis, PBC, CIDP, Aplastic Anemia, Psoriasis, Psoriatic Arthritis, Takayasu's Arthritis or any other autoimmune disease...🌺

Copy and paste this to your wall, do not share.

Write "Done" in the comments after you have done so.

Do this as a sign of your love and support for everyone you know fighting this battle.
Many of my friends and family are struggling with autoimmune disorders!!! 🌈

#NotAllDisabilityIsVisible
#WeAreAllFightingABattleYouCantSee
#Bekind

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Caring for coworker with #AplasticAnemia #RareDisease #Cancer Help!

Hi
One of my dear coworkers, and amazing person, just found out that her cancer is back. I want to show her that I’m here to listen and support her, but I have really bad social phobia and also lost my dad to cancer, so I’m afraid to offer something I can’t stick too (because of my own issues). So I wonder if folks who have lived with , aplastic anemia, or other rare diseases have suggestions of what you found helpful, touching, meaningful.

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Oh, really? You don’t look sick

This is the first time I’m hearing people say just how I’m also feeling. Aplastic Anemia/PNH is not an illness that shows on my face, so when the other hockey moms want me to drive the kids to practice as a single mom more than they drive as married moms, it’s hard to be understood. The fatigue at times would scare me when I drove the crew in the evening. As a single mom of three 28,20,20 yrs old, I’m not sure how I did it all but I did.
Faith , love for my kids and hope . Not all at the same time but always a little of at least one of these feelings got me through each day. I did not think I would live to see my children grow but here I am, 20 years later. Now what ? Lol that’s the question. This is a whole new ballgame and not sure how to find my place in this new chapter yet.
#RareAndMighty

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I feel like this daily... #AutoimmuneDiseases

Read this.

Warning Long Message. Please take time to read. Thank you
I wish more people understood...
What she has is not a cold or the flu. She will never get better. A nap won't help. She is not lazy but she is tired to the point of a lethargic state. She's on meds to try to make it easier to thrive and merely survive. Many people say that she's faking it or that she just needs to push through it. Well sometimes she can push through the pain and live her life, but there are days where she can't walk without having to hold on to something. Her joints hurt. Her body hurts. Her mood varies, and she is sad a lot. She tries to control her mood swings and intermittent bouts of depression. She takes her meds daily, and more vitamins than you could fathom, to help keep her up but most days nothing works.
She has an autoimmune disease.
I'm watching those of you who will take the time to read this all the way to the end.
To see who reads and who shares without reading please, in honor of someone who is fighting MS, Chronic Lyme Disease, Dermatomyositis, Lupus, Graves Disease, Scleroderma, Ulcerative Colitis, Fibromyalgia, Sjogren's syndrome, Crohn's, Sarcoidosis, Osteoarthritis, Rheumatoid Arthritis, Celiac, Hashimotos Thyroiditis, PBC, CIDP, Aplastic Anemia, Psoriasis, Psoriatic Arthritis, Takayasu's Arthritis or any other autoimmune disease...
Copy and paste this to your wall, do not share.
Write "Done" in the comments after you have done so.
Do this as a sign of your love and support for everyone you know fighting this battle.
Many of my friends and family are struggling with autoimmune disorders!!! ❤

1 comment