Women's Forum: Just completed my first year!

[mizjewels]

The low stress level of this life seems to help me, and a flare spent in the forest in a zero gravity chair napping isn't so bad.


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Thanks for the quick reply ~ it sounds quite heavenly actually! Does the PsA effect your hands too? And if so, do you have any adaptive/assistive devices or even just tips for how you do necessary things like hitching up to get out of dodge if during a flare? Perhaps you haven't had to do that, but with my luck - it'll hit when I have zero water or the pooper is full! Those are the things that really scare me. I can hobble with the walker if needed - but what do you do when you can't even pick up your 8oz water bottle?

 

[Blanch]

Yes, it is in my hands, feet, right hip and back. I sleep with wrist splints on and it really helps.

I have an agreement with my doctor and I return home every three or four months for blood tests and a checkup. I also had a heart attack a few years ago.
In return my doctor keeps me pretty stocked on medications. If I have to move during a flare I take 60mg of prednisone and do an injection of IM toradol. That gets me through the move and I just suffer the consequences the next day.

I am on Orencia so I carry those injections, antibiotics for any exposure to bacterial infections. I have MMJ for pain as well as toradol. I have breathing problems and use a nebulizer - I recently got a 12 volt one that plugs into a cigarette lighter.

I never let myself run low on food or water. It's all about slowing your life down to a speed where all you have to do is take care of yourself and enjoy the time you have.




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[CautionToTheWind]

a flare spent in the forest in a zero gravity chair napping isn't so bad.

forest/gravity chair/napping = MMmmMm  

Have you found any foods/herbs/spices to help inflammation/flares? If you wish to answer that is!

 

[mizjewels]

@Blanch

You are BLESSED to have such a wonderful Dr. Mine is not nearly as nice and accommodating. My rheumy won't give me any pain meds so I have to make do with the MMJ, which helps with mild pain but is worthless in a full blown flare. I really appreciate you sharing that info as it will give me a starting point for discussion. He'll be more than happy to stuff me full of prednisone though....which I loathe...he says it's "the only thing to help the pain." I call BS on that! I'm at the point where the methotrexate, plaquenil, and humira are starting not to cut it so he's beginning to talk of switching biologics. I sure hope I end up with a pill form - these darn shots are so painful!

Thanks so much for taking the time to address my questions, I really appreciate it.

@Caution  When I followed the Paleo diet AutoImmune Protocol - I had no pain/flares.  I bought the book and cookbook from this lady https://www.thepaleomom.com/start-here/the-autoimmune-protocol/
I also had no pain/flares when I followed the Eat To Live program which is vegan: https://www.amazon.com/Eat-Live-Amazing-Nutrient-Rich-Sustained/dp/031612091X

I find it strange that two polar opposites - vegan and paleo - both worked. This leads me to believe it's not really the food that causes the problem - it's the preservatives and other food additives that are to blame.

The problem with both these plans is - they are unsustainable for someone like me. You know how the New Year brings resolutions? They also coincide with tax returns. The tax returns enable the purchases of organic veggies and grass fed this and that...but once the tax return dries up - the food costs are just unmanageable. Plus, you have to shop in larger areas that have health food type stores in order to locate the ingredients needed. So constantly having to go to Sedona for grocery shopping was a budgetary nightmare!

I have read about stuff that is supposed to help like turmeric etc, but my experience has been that they do pretty much zero if you're eating SAD. Hopefully Blanch has better news we can both benefit from.

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[Blanch]

I try to eat a clean diet with single ingredient foods or food cooked from scratch. I avoid all chemicals and preservatives. I am on SSDI and rarely can afford organic. But just single ingredients and nuts and seeds seems to help. The big help is less stress.


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[Gypsy Clipper]

I have two million miles over the road as a semi driver and two years living full-time in my minivan. Trust me ladies there is absolutely nothing out there about this life that will make you regret it. Just listen to your heart and Trust God.

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[badjingle]

Blanch - you're amazing.

 

[michele0203]

Thank you so much Blanch for sharing and being such an encouragement to me!

 

[michele0203]

I have two million miles over the road as a semi driver and two years living full-time in my minivan. Trust me ladies there is absolutely nothing out there about this life that will make you regret it. Just listen to your heart and Trust God.

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This brought tears to my eyes!!!  Thanks for the encouragement!

 

[RollingOm]

Here is my rig. I opted for comfort due to my disability, so I basically have a rolling condo.  When I am sick I have all the creature comforts I could possibly need.

Oh WOW!!!

 

[Cammalu]

Nice rig


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[bigsallysmom]

I think it's a great idea. Being uncomfortable and sick can make a body feel sicker.

 

[RossCoe]

You give me hope that maybe I can car camp at the RTR this year!!

 

[ColdBrook]

I never let myself run low on food or water.  

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I just bought a sampler of dried foods I can safely eat (no preservatives or chemicals added).  I figured if I run out of safe to eat fresh foods and am in a location with little choice of healthy foods, at least I can make myself food easily that won't make me sicker. ( I have multiple food allergies on top of many health issues).  My biggest fear is getting really ill on the road and needing to move locations but not being able to even drive my van to a new location.  
I searched for a long time for a used self-contained mini rv. Ideally I would have liked one about 24ft or shorter, but I just couldn't find one in decent enough shape in my price range.  Finally bought a 4 yr old high top van and am trying to build it out.  I was afraid to have to hook up a trailer and tow it when I am really not doing well.   Thank you for the encouragement, it really means a lot to hear of others with serious health issues that are successfully doing what I want to do .

 

[Lesquire]

Congratulations on completing your first year of living nomadically!   What an inspiration you are!  In a couple of days I will have completed my first month of living on the road and so far I love it.  Thanks for your highlight list.  Figuring out where I want to go is still one of my challenges, so I'm glad to hear from other women where the best times were had.

 

[Snikwahjm]

CB, where did you buy that sampler of dried foods you can safely eat?