Guest Post: 10 Tips to Life with Lupus
Positively Rachel
by positivelyrachel
2y ago
Lupus is a condition that causes your body’s and your immune system to fight against you 24/7. It can affect almost every part of your body including the heart, skin, kidneys, lungs, joints, blood cells, and even the brain. It is a chronic condition, it won’t go away, so once you’re diagnosed with Lupus, you have to learn to live your best life with it. The effects of lupus vary from person to person, sometimes being completely debilitating, sometimes just coming in waves, sometimes being minimally “visible.” All you can do is manage symptoms and make necessary changes to your lifestyle and st ..read more
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In my many, many years as a chronic illness patien...
Positively Rachel
by positivelyrachel
3y ago
In my many, many years as a chronic illness patient I’ve met countless new people from all walks of life, in all professions, coming from all backgrounds with every different set of beliefs, morals, priorities. I’ve been let down more than I care to think back on, I’ve been inspired by those who have stepped up, the strangers who have put themselves out there, who have put their energy and time and resources into me and my projects and my health – you truly never know who will step up in your time of need. Throughout my time in the medical system I’ve met every kind of doctor and seen every le ..read more
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Spoonie Survival Guide: Happy Holidays!
Positively Rachel
by positivelyrachel
3y ago
Happy Holidays!  If you’re anything like me, it doesn’t feel quite as festive as it normally would at this time in December – there’s just not as much of that fabulous, positive, contagious Christmas cheer! Most of us are still looking to avoid contagion, and while we might think it makes shopping more difficult, I’m here to let you know otherwise.  —-———————— I’ve been working on a “holiday survival list” for chronic illness patients, and while I do have tips, I don’t think we need the list to understand some of what we can do to make the holidays as successful and as beautiful and ..read more
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Into the COVID Holidays We Go
Positively Rachel
by positivelyrachel
3y ago
For as long as I can remember my mom, my aunt, my grandma and I have gone to craft shows together during November and December and done a huge amount of Christmas shopping. I love this tradition because of the time spent with my mom and the other women of the family but also because we support so many small business owners, we find fantastic, handmade gifts that our loved ones won’t be expecting and we support individuals who put such time and creativity and passion into every piece they are selling.  We’ve entered what is obviously going to be a very unique, unprecedented holiday season ..read more
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Chronic Fatigue Battles Adrenaline
Positively Rachel
by positivelyrachel
3y ago
So I am gonna go out on a limb here – I feel like it is probably safe to say that we have all heard or said the phrase, “I’m too tired to sleep,” right? If you have not heard it or you don’t know what the heck it means, just keep reading and I think you’ll understand by the end of my post! If you don’t, feel free to ask One of the worst, but most commonly understood struggles that comes with Chronic Fatigue Syndrome and Dysautonomia/POTS is when you wake up from a “solid” nights sleep and you still feel exhausted. You have a full day ahead of you with no energy? I mean, does anyone else feel ..read more
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Pig With a Purpose: The True Value of Pocket Change
Positively Rachel
by positivelyrachel
3y ago
One of my favorite and earliest childhood memories is how my dad would come home from work every day and empty his pocket change into this big, clear jar on his dresser. Slowly, that jar would fill up &  and when it started to get near empty-ing time (hardly ever did we wait till it was actually FULL), my sisters and I would add in any change from our (sad) little piggy banks and the fun began!  For awhile we put the coins into wrappers, we learned to sort them, count them, and break them up into equal piles once they were sorted by coin type, it was a fun learning task, a fun t ..read more
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Shop Away, Newbie Tubie Style
Positively Rachel
by positivelyrachel
3y ago
ETSY: https://www.etsy.com/people/rsb4fc/favorites/newbie-tubies-wish-list?page=3 AMAZON:   MAIN LIST: https://www.amazon.com/hz/wishlist/ls/1J7LHVRD4V3A6?ref_=wl_share BUDDIES NEEDED: Purchase A Buddy to sponsor a button buddy! Add a note so we know who it is from and we will send you photos when we create the Button Buddy and send it out!  https://www.amazon.com/hz/wishlist/ls/W9IXBH9TFV4A?ref_=wl_share Sponsor a Book! https://www.amazon.com/hz/wishlist/ls/A2HGIE93P9BL?ref_=wl_share PAY PAL: positivelyrachel101@gmail.com // VENMO positivelyrachel/positivelyrachel101@gmail.com ..read more
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Button Buddies
Positively Rachel
by positivelyrachel
4y ago
When I got my first feeding tube (oh so long ago), my mom made me a “button buddy” by hand and to this day, that koala, Kevin, goes with me on every long trip to the specialists, every hospital admission, and is always arms reach away when I’m not in my “safe space” or when I’m struggling to feel strong and positive about my situation. For me, my buddy represents the love and support I recieve from my mom and the rest of my family as well as the strength and perserverence I have had since getting my first tube, my first diagnosis even. Kevin has two tubes and a central line now, and he’s been ..read more
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A Day in the Life of a Migraineur
Positively Rachel
by positivelyrachel
4y ago
A guest post by John Martinez with Axon Optics… A day in the life of a migraineur is not a normal day. It’s like a day of playing dodgeball, but if you get hit, you have to call out of work and live with head-splitting pain. Migraine triggers can appear at any time, and the migraine can rear its ugly head on a moment’s notice.  Living with migraines can sometimes feel like going on vacation, without any of the relaxation of going on a vacation. You need to check the weather, make sure you’ve packed everything you need, and always have a backup plan in case things go south.  If you have a frien ..read more
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Strength for All; A NTCP Shirt Fundraiser
Positively Rachel
by positivelyrachel
4y ago
In October of 2017 I had my GJtube surgically changed into two separate tubes – a jtube and a gtube – after months of tube trouble due to my severe dysmotility throughout my GI tract. This surgery was insanely painful due to complications brought on due to my EDS, so my recovery was long painful, and during that time I relied on my parents for EVERYTHING. I couldn’t sit up in bed on my own, couldn’t walk, shower, brush my hair, or seemingly do anything else because all of these movements require abdominal contractions/tension and every time that happened I was in excruciating pain. It was duri ..read more
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