My Autoimmunelife




About me  

Ask me anything

I’m back!

I have no idea how consistent I’ll be, just so you all know, but I am back for the moment at least!

I’m off the haldol (It caused some scary shit that is mostly cleared up now and wasn’t all in the paperwork they give you, I’ll go into more detail when I can get to my journal), and on Abilify.
Not sure it’s doing anything for me yet, what I’m feeling may just be the result of going off the haldol.

Side effects from the abilify have included nausea/vomiting, sleep problems (which are clearing up now) and restlessness.

If it works for my bipolar I can deal with it!

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On the lupus front – not so good. I’ve got to get a rheumatologist again. Nothing new, just lots of pain from the weather, and a need for more aggressive treatment so it doesn’t get worse. In the same boat with fibro.

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Endo – my ovary is waking back up from it’s 2 to 3 month nap due to the haldol (I didn’t ovulate while on it) and is making me hurt pretty badly.

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Grief – here’s the big one. I’ve acheived peace most days. I’m still sad, I still miss her, I always will, but there is a calmness about it all..

Tagged: bipolarbipolar IlupusgriefLilylilypsych medsmedicinemed side effectsmedication side effectsfibrofibromyalgiaendoendometriosisovariesovary

Source: autoimmunelife.wordpress.com

Lupus flares are back again.

With a heavy heart I must say that my flare free period is over with my lupus and fibro. The good news is that I had either 3 or 4 days without it, and I *know* they can happen now, as the last time before this one that I had any truly pain free lupus time was when on steroids and trying to keep from having Lily, it lasted less than a week. The time before that was one day in June 2009. :/

At least I know they can happen without med changes (this time I had no meds added to my cocktail to change the flare!)….

Tagged: lupusflareslupus flares

-pallasathena:

It’s that time again! The holidays are coming up and we’re buying gifts for those we love. Why not get your favorite lupus sufferer/activist a shirt or button (or both!) that will remind them that people love them and are fighting for them and go towards a good cause? 

To celebrate the holidays, whichever ones you choose to celebrate, I’m offering free shipping on all orders between now and Christmas Day! Enter the code “HOLIDAZE” at checkout.

Please bear in mind that all profits go towards LFA and Lupus UK.

Visit the store!

If shirts/buttons aren’t your thing, please consider donating to LFA or Lupus UK anyway!

These shirts and buttons are wonderful! One of these days I’ll have one of the shirts.

Tagged: lupusgive a fuck about lupuschronic illnessawarenessyou can't say fairer than thatchristmas is a time for giving

Source: fuckestuppest

the beasts without teeth who wanna eat me alive...: I might just unfollow you if.... →

atomss:

you make one of those ‘it’s not lupus’ jokes from House. I can’t quite put my finger on why it annoys me / bothers me so much, but I’ll try to explain a little.

first of all, sadly, it often IS lupus. It is present in over 1 out of every 250 women of color, actually. 1.5 million…

I really probably will. That jokes pisses me the frak off!

Tagged: though I do watch Houselupusautoimmune

Duessa: Wheelchair Chronicles #9 →

supermodelrevealed:

The Bathroom.

A reason why many disabled people stay home instead of catching that after work cocktail at the trendy new spot with coworkers.

I had the misfortune recently of dealing with this issue at a popular restaurant in Chicago.

I couldn’t get through the front…

Tagged: MSableismchronic illnessdisabilitydisableddiseasefibrofibromyalgialupuspainsicksleterminal illnesswheelchairscleroderma

Source: supermodelrevealed

andfakethewayiholdyou:

fatchickwearingclothes:

This is my U.V. Monkey (from Thinkgeek), it tells me when I need to go back inside and get away from the burning ball of radiation that’s trying it’s best to kill me.
I like my U.V. Monkey.

Saw this in the lupus tag
I don’t suffer from photosensitivity but something like this could be really useful to a lot of my followers so thought I’d reblog it :)

That would be fantastic, I’m extremely photosensitive!

andfakethewayiholdyou:

fatchickwearingclothes:

This is my U.V. Monkey (from Thinkgeek), it tells me when I need to go back inside and get away from the burning ball of radiation that’s trying it’s best to kill me.

I like my U.V. Monkey.

Saw this in the lupus tag

I don’t suffer from photosensitivity but something like this could be really useful to a lot of my followers so thought I’d reblog it :)

That would be fantastic, I’m extremely photosensitive!

Tagged: U.V. monkeylupusphotosensitiveThinkgeek

Source: creativeconflagration

A Supermodel With Lupus: I am Closed →

supermodelrevealed:

Don’t you dare tell me what you would do if you were in my position…because you’re not.

Fuck your water aerobics class or that vegetarian juice diet that you swear by.

I’m not interested in the medicines you would take, the many miles you would drive to see a ‘special lupus’ doctor to fix you if…

Tagged: slelupuschronic illnesschronic painsickdiseasefuck youspooniedisableddisabilityrant

duessa:

supermodelrevealed:

Venus Williams diagnosed with Sjogrens Syndrome and Kim Kardashian diagnosed with psoriasis.

WHY DOES IT TAKE A CELEBRITY TO GET DIAGNOSED WITH SOMETHING TO BRING NATIONAL ATTENTION TO A DISEASE?

JUST ASKING BRO.

A valid question.

Seriously!

Tagged: slesjogren's syndromearthritisrheumatoid arthritis.lupusdiseasesickhealthdiagnosedchronic illnesschronic paindisableddisabilitywhy?cool story bro

Source: supermodelrevealed

30 things about my invisible illness you may not know.

September 12th-18th is Invisible Illness Week. We all know that awareness is so important, and part of events for that week is the 30 things that affect us living with illness, and perhaps will help to gain a wee bit of understanding. 

    1. The illness I live with is: Endometriosis, fibromyalgia, interstitial cystitis, vulvodynia, vaginismus, lupus (SLE), bipolar disorder

    2. I was diagnosed with it in the year: 2005, 2006, 2007, 2008, 2011.

3. But I had symptoms since: For years… .some my entire life, some just a few years…. most since my teen years at the latest.

4. The biggest adjustment I’ve had to make is: Listening to my body

5. Most people assume: That because I’m so young I can’t be so ill.

6. The hardest part about mornings are: Getting out of bed, whether it’s actually am, or just when I wake up.

7. My favorite medical TV show is: None, I can’t stand them! - The closest I get is Sons of Anarchy, where one of the women is a doctor.

8. A gadget I couldn’t live without is: laptop/pc

9. The hardest part about nights are: When it starts cooling off more my pain goes up.

10. Each day I take a minimum of 8 pills & vitamins….. usually I add at least 4 or 5….. in the form of pain management.

11. Regarding alternative treatments I: Don’t usually take them, but I am willing to consider them and talk to my doctors about them. I do have an alternative treatment I use to help my liver with all the other meds I take.

12. If I had to choose between an invisible illness or visible I would choose: I really don’t have an answer for this. They both come with different challenges. I think I’d stick with what I know.

13. Regarding working and career: I am currently unable to work. I’m trying to get my health back enough to work part time again.

14. People would be surprised to know: How it is so hard some days and so easy on others….

15. The hardest thing to accept about my new reality has been: losing hopes and dreams, and struggling to get them back.

16. Something I never thought I could do with my illness that I did was: have a biological child, and deliver vaginally.

17. The commercials about my illness: are terrible. At least the PSAs about lupus, done by lupus patients are ok.

18. Something I really miss doing since I was diagnosed is: signing

19. It was really hard to have to give up: sign language

20. A new hobby I have taken up since my diagnosis is: crocheting

21. If I could have one day of feeling normal again I would: go to the beach and play in the ocean with my kids.

22. My illness has taught me: that I can and will survive through a lot of difficult times!

23. Want to know a secret? Sex hurts, and I usually pay for it afterwards, but Johnny and I still have a sex life through it all. (This is HUGE when you understand how sex is (or rather ISN’T for most people with chronic illness who I’ve spoken to)

24. But I love it when people: Try to understand and learn about what we are going through. 

25. My favorite motto, scripture, quote that gets me through tough times is: Don’t cry because it’s over. Smile because it happened.” Dr. Seuss

26. When someone is diagnosed I’d like to tell them: Research. Lots of research. Advocate for yourself off that research. If your doctor isn’t treating you how you think they should be, get another opinion (3 years into diagnosed lupus I’m going to be doing this soon, if things don’t change during my next appt, as my lupus has become more active again). Listen to your body.

27. Something that has surprised me about living with an illness is: I’m not really sure…. I guess how much of a difference just having a name for what’s wrong with me changes things.

28. The nicest thing someone did for me when I wasn’t feeling well was: make a meal for me, or clean the bathtub for me so I could take a bath.

29. I’m involved with Invisible Illness Week because: We desperately need awareness and research and understanding!

30. The fact that you read this list makes me feel: so very grateful to you and for you being in my life!


Tagged: 30 thingsfibrofibromyalgialupussleendoendometriosisvulvodyniainterstitial cystitisicbipolarbipolar II

We met a wonderful lady today at the dentist while we were waiting for Johnny’s rx. She wants me to do an interview about lupus on local tv!! We had a wonderful talk about a lot of things, lupus being one of them! We were talking about lupus, and about health issues, and the differences between now and when she was growing up, and her job, and different things. :) We also talked about the kids a little bit. :)

Tagged: lupuslupus awareness