#lupussupport

[anonymousmama]

Sjogrens and Lupus 

Hello tumbloves. Truth be told I forgot I made this blog long ago. Now here I am back and hoping to find knowledge and maybe some good friends to help me on this journey. Recently after a very serious health crisis that lead to massive cervical spine surgery I found I am positive for Sjogrens Ss-B with SLE (Possibly?)

Sadly I do not have insurance and do not qualify for government health insurance but also can not afford a Rheumatologist. So, I am ignorant and screwed. Yay me! 😐🙄

I have been looking everywhere and I feel like I only keep stumbling on the same websites with the same redundancy. I still walk away with questions such as

How rare is it to have ONLY Sjogrens Ss-B ?

How long after the anti-bodies for SS-B are found does SLE show up?

How fast will all this progress without treatment?

I have known for years that something was wrong. That I wasn’t dealing with every day pain and tiredness. Yet seems like absolutely now one listened or took me serious until it was almost deadly and someone thought to try and figure out how I was in the shape that I am in. Now I am still battling pain, exhaustion, brain fog with what feels like the complete inability to process any incoming Input these days. Itching.. my fingers my wrist the bend of my elbow tops of my feet and so on. I feel frustrated with myself because even now knowing there’s a reason for why I am like this I can’t accept it I still find myself crying because I can’t remember things. Or I don’t have the same energy for my children and grandchildren. I feel lost and like there is no one around to talk with about what this is like or learn from so I might be able to understand where it’s going to lead.

any and all help is needed and wanted. Please follow me if you are living with either of these things or can just be a friend. - Anonymous Mama

[positivelyspoonie]

Hey! I am Ann! I am turning 26 at the end of this month! I have MCTD. More specifically, lupus, fibromyalgia, rheumatoid arthritis, raynauds, migraines, idiopathic thrombocytopenia pupura, adhd, depression and anxiety! I just deleted my old tumblr and made a new one. I wanted to start over. I love to sing and take pictures! I am so for body positivity and I absolutely fell in love with crop tops about 2 years ago and I just can't get enough! Though I would like to lose weight for multiple reasons, I am learning to love myself in this body! 💜🥰💜🥰 Please if you care to, give me a follow.

[qveenjordin]

I’m really just tired of acting like I’m okay.

The truth behind it all is that - no one asks for an illness they can’t control. & no one wants to be a warrior all the time. no one wants the constant “compliment” that you are strong, because you made it through yet ANOTHER trauma. no one wants to be afraid to live because you’re waiting for the next “trial/flare” to happen. No one askes for this.

I’m still processing being near death. Still feeling so alone because regardless of the support and love that I’m getting ( that I appreciate every second of) there are only a few people that can understand what I’m going through. I’m thankful to be alive. But, I’m not ashamed to say I’m angry, exhausted, and sad that this is my life right now.

[learntolive-again]

I miss being able to go out in the sunlight

[petitejoy]

I want to thank you for clicking on this GoFundMe link, my name is Joy, and I'm turning 26 this year. It is important to me that you have an idea of my journey to this point in my life so you can fully understand why I have chosen this path in asking for assistance to make my dream of attending college complete.

I started my 4 year degree in Biochemistry Science at York University (Canada) in 2017.

Before traveling, I had paid for my first year tuition and had my savings in order to pay for life expenses until I found my first job. Things were going as planned until my second year, my mom was struggling with her financial status and my dad could no longer support me due to his health condition. And sometimes, there's a lot of guilt to ask other people back home to help me financially when I know they are also struggling.

I have been working hard since the first day I had arrived to Canada, facing the situation made me in need to find the second job; with the limited hours I'm allowed to work during school as a student, I work almost 80 hours per week in summer or during school breaks, in order to pay off my tuitions.

With limited support I could get, I have been slowly paying back my tuition on time up to last year, when I was diagnosed with Lupus. Having Lupus makes everyday life challenging. When it is active, symptoms like fatigue, pain or depression make daily tasks become difficult, and sometimes impossible. Medication costs was a limiting factor for me to stick with the treatment plans and I caught myself many times skipping doses, delaying the filling of prescription to save the costs or even asking for lower-cost alternatives. Last year, medication costs took up approximately $6000 of my income and as usual, I planned on working more in summer to make up the cost, however due to the ongoing pandemic things didn't go according to plan, I had to go into "survival mode" with cutting off a lot of spending, I have become an emotional and financial burden to people around me.

Despite those hardships that I faced, I have my friend that took me in and sheltered me. I was told to not let my condition define me but rather look for my individual purpose in life seeking out the sense of peace, joy and success.

Going to my last year, the final year of this journey, I have 21 credits left need to be finished made the total of my student loan now is $24,000 CAD. I look at this number and I'm overwhelmed, the tuition fee will be due in October, 2021. I'm humbly knocking on your heart, to ask you help me with my goal. My promise to you is that not only will I work hard to make you proud, but I will continue looking out for others who also need help, like me.

[joegflife]

Where Gluten is Found

Those new to the gluten free lifestyle have many questions regarding what are the natural sources of gluten, what food products contain gluten, breads, pastas, condiments, beverages, etc.

It is a very confusing and frustrating time for them. Sometimes overwhelming.

Here’s some great basic information to help them through those early stages hurdles.

https://www.joeandtheglutenfreelife.com/where-gluten-is-found

[overcomingoverthinking]

Back too it. Infusion pt2 #lupuswarrior

I’m going to be honest. Having an autoimmune disease becomes such a big part of who you are and as much as you want to believe you’re this idea of normal, or healthy, your body will remind you that you’re just not like other people and that’s okay. We all come with different types of obstacles in our lives whether we chose to share them or hide them and this one is mine. But I chose to fight every day no matter how long it takes. I’m just thankful that I still get to live the life I choose to live and I learn how to do that daily. Listen to your body. Take care of yourself. There’s only one YOU.

[illdumbyousome]

🚨FINAL 3 DAY EXTENSION 🚨 [Link in my bio!] We are very close to hitting our shirt goal! 19 more to go! Can you help me make the final push? 💜 Help spread Lupus Awareness by snagging an awesome shirt! 💜 Link: https://bit.ly/2QUQwKK . #lupus #lupuswarrior #lupusawareness #lupusflare #lupussucks #lupusfighter #lupusawarenessmonth #endlupus #lupusfoundationofamerica #autoimmunedisease #invisibleillness #lupussupport #fundraiser #lupusorg #lupuschick #autoimmunestrong https://www.instagram.com/p/COGkfpPnWLR4XzexmKEAwr9k_maSf0D4H-_w-M0/?igshid=1luv0q6i64vrg

[theams1]

Getting social benefits for Lupus:

[authenticallyjames]

For more information on Lupus, visit www.lupus.org and www.worldlupusday.org • #fightlupus #lupuswarrior #makelupusvisible #lupussupport #lupus #chronicillness #lupuswarrior #lupusawareness #autoimmunedisease #chronicpain #invisibleillness #sle #autoimmune #lupusfighter #lupussucks #lupusflare #rheumatoidarthritis #arthritis #lupuslife #lupusawarenessmonth #lupusproblems #butyoudontlooksick #chronicillnesswarrior #health (at Garfield Heights, Ohio) https://www.instagram.com/p/COtHnugrknu/?igshid=a9762d7ldasl

[creativetona]

The start of a treatment plan:

Hi Lupies,

Cheers to a simple, uncomplicated blog to document my days. The days where I’m creative, the days where I’m singing all day long, the days where I just want to release all my creative energy..and the days where my chronic illness just knocks the life out of me. 

I want to document how art brings me to life.

This past month I decided to really get on the ball with my health, I want to do all things I always say I want to do. So I’m putting that little voice that fills me with doubt....in a box and I’m throwing it overboard. I’m done-this is the only body I get. So I want to make it as strong as I could.

When you have a chronic condition like me, at a very young age doctors began to tell me these horrible things that might happen to me as my Lupus would progress & that fear....kept me away from doctors for a while... But I’m about to be 30....

And in a couple of years maybe some babies too.

So I’m at my gynecologist now. Let’s see what this ultra sound says...this is my second appointment at this office. Doctor is bright, insightful & made me feel in good hands. This is just one of the 4 Referrals Ive received so far: 

-obgyn

-rheumatologist

-Orthopedic

-Pain Management Specialist

This is the timeline & how I made my decision to become healthy again.

March: lockdown, start of the pandemic.

Shortly after the announcement of what was happening in the world. I remember I was with my gfs on our last time out drinking. We came back to my apartment & I had a panic attack.

Because it suddenly dawned on me...the world was infected & the one thing we all need right now is strong immune systems...with Lupus that is what our bodies lack.

June: Locked down at home, painting and singing to fight the anxiety. It was as if the world was falling apart but I felt safe in my little home safe bubble. I never left home & my love would come over to bring me food, medicines etc.

Aug: knowing I haven’t had insurance in a while, I had been researching the types of insurances available so I was ready during the November Open Enrollment to make my choice.

November:Signed up, relieved since I received a tax credit qualifying me for an insurance that I wouldn’t normally be able to afford. This was when I began to feel hope. I’d been ignoring this fear of getting sick...not that I was being reckless. I was being careful but the fear of dying a sudden death if I caught COVID sat heavily on my mind. I finally started to feel that pressure gently rise off my shoulders.

December: Insurance Chosen, it becomes active January 1st.

Now between Jan & Mar I began to make appointments & we all know the medical system by now....it sometimes takes weeks to months. They don’t care how serious you are, get in line & don’t die before your appointment. You better have insurance info because they won’t even look at you without them INSURING their payment.

Now fast forward to today, I’ve seen the following doctors.

1. Primary care , 3 times: (Gave me all the referrals & confirmed my lupus was still active)

2.Orthopedic: (for a degenerated L5 disc in my spine & spinal stenosis) this along with my usual Lupus pain, is brutal.

3. Gynocologist: PCOS (Polycystic Ovarian Syndrome) painful af girls. They want to put me on birth control, but I don’t want to treat it with a pill that will treat it but bring me problems getting pregnant in the future, lets see what the options are. I was once on a low estrogen pill, for the least amount of side effects.

4. Rheumatologist: this is the type of doctor that Treats my lupus, this appointment however was the one that didn’t have any openings until the end of March. I’ll see them in about two weeks so they’ll explain to me where I stand in my Lupus diagnosis. Pray Y’all.

If you are like me and are thinking about getting healthy again, and you are overwhelmed. I’m in the same shoes my love. I’ll be sharing the steps I’m taking in the hopes to motivate you. ❤️

We don’t have anything if we don’t have our health.

Oxox,

CreativeCona

[thelupusdiariesofficial]

Benlysta

By Lillian China Smith Tonight is my benlysta night — and I hate it! But it has made me so much better. It took ages to work but it did in time…(a long time). Now it doesn’t make me as ill as it did when I started. Even missing my dose by a few days makes a huge difference. I am feeling grateful— and I’m all smiles for my benlysta at injection time, even though I hate the injection, and how long…

[panickedshrieking]

I wake up and hate my body a lot. I say I hate my skin and bones. I want out of this flesh, I want new organs, I want new joints I don't deserve to be in pain at all times.

I think of myself and my brain and my body separately. Because I don't want this body, I don't want this brain that are destroying themselves in a completely pointless effort to feel whole again.

My body is trying it's best and that's all I can ever ask of it. It's not fair for me to hate it for failing, it's not our fault.

I'm sorry body, I don't hate you, I'm just sad. You don't deserve this shame, you don't deserve this hatred, you've done nothing but try your best and I'm proud of you.

I love you, and I am still learning how to love you with all our faults. I love you and I'm sorry.

[heatherjpp13]

Do I complain? NO! Do I ever tell you when I feel my worse? NO! I love my life & I live it to the best I can. My son is the reason I fight daily. My other prognosis' are just that. So I bleed...& I know because sometimes it won't stop...Anemia...I have COPD & Asthma, I have Kidney issues, yet I push through with my brain having issues from Lupus. I don't give up & I fucking live my life. I try to record daily because it's all I have for Tristan to remember. Life is short...love, live, & enjoy💜💜💜💜💜💜my cousin died from this disease & I miss her every fucking day!!! #lupuswarrior #lupusawareness #loinpainhematuriasyndromeawarenessday #sickpost #lupus #sle #lupusfighter #lupussucks #lupusflare #lupusawarenessmonth #lupuslife #lupusadvocate #lupusstrong #edsawareness #lupusproblems #lupussurvivor #ankylosingspondylitis #lupussupport #chronicillnessmemes #lupuswarriors #knowlupus #rheumatoidarthritis #lupusfoundation #crps #lupusfacts #chronsdisease #lupie #lupusnephritis #gastroparesis #fibrowarrior https://www.instagram.com/p/CfmuoJuFwVR/?igshid=NGJjMDIxMWI=

[qveenjordin]

Lately, things have just been too difficult to carry. I’ve slowly been processing the mistreatment I’ve experienced from the hospitals & I guess I’m just not handling it well. The hospital almost killed me. I am grateful that they didn’t, but I’m traumatized from the experience. All I’ve ever known to do is to keep moving forward and continue to look to the future. Even though things are stable now, there are certain things I can’t look past. I look at my skin everyday and I’m reminded of Lupus. I’m reminded of how quickly things can go downhill. Now, I’m reminded that I don’t matter to the people in the medical field. I was tossed to the side; I was deemed too difficult.

I often place that sentiment upon myself, saying that I’m too difficult to love, to difficult to be close to or to even get to know. How can I expect someone to deal with this when I barely can? To be honest, I’m still very scared. I haven’t moved past it even though that’s all I want to do. I’m tired of talking about it because there is nothing anyone can say that can make me feel better. I don’t ever want to go back into that dark hole again, and I’m fighting to keep myself out of it. It’s just getting a little to difficult for me.

[joegflife]

Testing for Celiac Disease

There are a lot of questions regarding the kinds of testing available to diagnose Celiac Disease, who should be tested, and what are the requirements for each.

Knowing your options for testing is crucial to ensure you receive the most accurate diagnosis, as possible.

Learn the following:

• Who should be tested

• Testing children under 3

• The First Step: tTG-IgA Test

• IgA Endomysial antibody (EMA)

• Total serum IgA

• Deamidated gliadin peptide (DGP IgA and IgG)

• Video capsule endoscopy (VCE)

• Intestinal fatty acid binding protein (I-FABP)

• Radiology

• Genetic Testing

• Who should have Celiac HLA testing?

• How do I get tested?

The information has been provided by the Celiac Disease Foundation.

https://www.joeandtheglutenfreelife.com/testing