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11/27/2020

A Chronic Illness Christmas List

Something that can be tough is buying for someone with a chronic illness. Of course some people are wonderful gift givers, but others need or like a little more direction. I've always been a little disappointed with the usual lists I see circulating on the web so I thought creating my own list of favorites might be helpful for anyone who'd like to get something special for their loved one or friend with a chronic illness. 




1. A plant - I heard it actually helps someone if they have to keep something else alive. I agree, plus aloe vera is awesome for healing and surgery scars (paid link). 


2. Comfy & Soft Clothes - A typical item in these lists are usually pajamas. Although a good gift, other comfortable pieces that don't look like you slept in them or can dress up can take this idea a little farther. Sweatshirts and jackets are also sought after for someone with chronic illness because we can have issues with temperature control.  I mentioned Zyia in my last post with pieces I was gifted or you can click here to shop around yourself.


3. A Journal - You never go wrong with a journal. They can document, decorate, make into a smashbook, write thoughts, prayers, or if they need to keep track of pain and symptoms. Extra points if you add some special EDS pens like this (paid links).


4. Color Street Nails - I've always dreaded panting my nails because with my faulty proprioception, I don't always have the best accuracy and mix that with clumsiness, it doesn't make the best combo for applying regular nail polish. I just heard about Color Street recently and ended up deciding to try. They now have a customer for life. My favorite thing is to mix and match and even do patterns without having to actually draw on myself :) 


5. A Popsocket - When these first came out, I thought they were pointless and just another thing for us to feel obligated to buy. I was very wrong, it's more like a need now for my hands and fingers. I got this one for an easy conversation starter to share awareness (paid link).


6. Pony-O - Another item I saw for awhile, but thought it was gimmicky or too good to be true. It actually does help prevent headaches for me and I so wish I had these when I did gymnastics and track to keep my hair in place (it was such a huge pet peeve). They have a ton of colors to match your hair or to go with something more bright, or even a 🦓 print too. We got the girls pink ones for Christmas.


7. Grabber Reaching Tool - If someone is recovering from surgery, this is a must-have! My aunt got the tool for me when I got back from Germany and it's been a lifesaver (plus the girls love it and have not stopped playing with it).


8. An Illustration - Very trendy at the moment and I'm so excited how digital illustrations are cleverly being used to represent and show a glimpse into the life of rare disease and spoonies. All you need is a photograph to send them and this artist can draw you an illustration of your friend or loved one or even both of you together. Giving them this type of gift will definitely show how strong they are and help give some encouragement or confidence to keep going.


9. A Fun Cane - This one is on my list - it's a color changing cane! The company has a ton of options from bubbles, to lights, but the idea of being able to switch out colors is awesome. Another option is my first cane I ever purchased that can break down and fit into your purse or bag so it's more discreet if you don't need one all the time (paid link).


10. Ornaments - So many options! You can do one like above if someone finally got a diagnosis, or there's some others I'm also eyeing that have anatomy of different organs (I SO want the kidney one). My friend has done it again with her Spoonie Sister Shop!


11. Specifically Designed Makeup - This founder/make up artist created something I think there was a huge need for. The mascara, eyeliner, and 3-in-1 brow product are made for unsteady hands or someone who has issues with grip like 🙋‍♀️ I made sure to not reccomend anything I haven't tried and actually use so please know I approve of, which I have to be even more careful what I use because of my sensitive skin and reactions.


12. Something Cozy - Definitely not unique, but always a hit - a blanket (there's even a Hanukka one), pillow, socks, or slippers a chronic illnesser will always enjoy and appreciate being given as a gift.


13. Awareness Gear or Shirts - I've shared previously some of the best places to find them such as the SMASRAS non-profit, but a hospital bag or pill pouch are also a couple ideas you can switch it up with. Hospital trips and taking meds/supps are part of our life so why not get them something cute to cheer them up. You can also show your family member or friend that you care to know what they are suffering with 🖤


14. YuYu Hot Water Bottle - My go-to while traveling and I love that I can tie it if I need to do things around the house while getting a little relief at the same time. They have so many beautiful fabrics or prints to choose from so you can even get a couple to alternate. 



*Things to stay away from*

-Scented gifts like candles or perfume (may have reactions or get migraines if they have MCAS).

-Food, candy, or beverages with gluten, dairy, or caffeine (you never know if someone has intolerances or allergies so always safe to ask first).

-A yoga book or piece of fitness equipment (unless they are a yogi or fitness buff and you know they'd enjoy). Don't offer something in hopes it'll "cure" their lifelong chronic illness. Something to help give relief is always welcome though like Epsom salt or TENS unit.




Any items you think should be included? What's been the best or worst gift you've received?

 


11/25/2020

Thankful & Grateful 🍂

Last year at Thanksgiving I couldn't physically eat more than 2 small bites or drink more than a sip. We were even surprised I could make it to my sister's house to celebrate the holiday (I know it definitely was from finally having pain medicine), but it was still mostly spent on the couch.


I am five months post surgery and I think it'll be more like a year before I feel recovered from surgery and will have energy again, but tomorrow I will be able to eat as much as I want and won't have to be sitting the whole day. Although the coronavirus has impacted what our Turkey Day looks like this year, we are still feeling thankful and grateful for all our blessings and all of you. 


Here are a few crafts we are doing with our girls:






Happy Thanksgiving!



11/06/2020

Chronic Illness Style: Comfort


As someone with chronic illness, wearing comfortable clothes has always been a priority, even how they feel on my skin can be a factor. With my vascular compressions I couldn't have anything that was too tight on my abdomen or pelvis. When I got back from Germany my sister was excited to tell me about some clothes she had tried that were super cute, but super comfy. When she came to visit the first time once I was home she ended up bringing some that I could try on to see what I thought. I ended up loving a few pieces, which she gifted me with while I recovered from surgery. 


These are all the pieces she gave me. Names & sizes below. Black & turquoise shorts are ones I already had in my closet that aren't Zyia brand, but matched the tank perfectly.

5’5 150
Bomber shorts M
Havana Tank M
Bengal tank S
Grid bra M
Unwind joggers S
Nimbus tank M


I decided to throw a Zyia party to win some rewards for Christmas gifts and possibly a few I've had my eye on, but also loved the idea sharing with my family and friends a brand I've grown to love. Options to order start on Monday and will be the rest of the week. What I enjoy that my sister does is share ideas how to wear pieces (my style always has to be multifunctional where I can dress a piece different ways) or some of the parent kid matching outfits they have.


If you'd like to browse my party: 


My sister's page if you'd like to follow or even throw your own party: 


Have you tried Zyia? Do you have any favorite pieces? Are there other brands that are your go-to for comfort or seem to be made for chronic illness wear? Please share below in the comments 👇



11/05/2020

Support Groups

When I first joined the Facebook Support Groups, I didn't know what to expect. I had no idea they would help navigate my health more than any medical practitioner to finally figure out what was causing my debilitating pain and get surgery. I also didn't realize that I'd meet forever friends without leaving my house or have to see them in person. 

 

Of course there's always a positive and negative to everything. For me personally it was beneficial when asking a question for direction and feedback about doctors and next steps when I wouldn't know where to turn. I would also be blown away how my experience would become valuable to others and they would soon reach out to me so I could give back. I think you do just have to realize that some people become very passionate about one certain surgery or a certain doctor not understanding everyone doesn't always have the same options, finances, or location. 


I also think a problem is that a lot of doctors don't understand that us patients can be interested in actual research journals/studies and not just "googling" to scare ourselves with worst case scenario. It's been incredibly rewarding to find doctors who see the value and actually are impressed by the knowledge we have about our condition, body, and treatment options and get to have very interesting conversations that might benefit their other patients. The goal of the support groups is to give hope and to spread awareness so everyone can get an early diagnosis and have the same access to treatment. 

 

 MALS-

SMAS -

NCS-

MTS-

PCS- 

 TOS-

 Multiple Vascular Compressions-

EDS-

Texas EDS -

Endometriosis-

Mother with EDS or Chronic Illness-

 EDS Related Conditions-

POTS-

MCAS-

PICC Line-

 

Are there any that you've been in that you would love to share because they've helped you? You have to keep in mind before these groups so many had to navigate their health in the dark, but they didn't want others to suffer so they created them 💜 If you haven't thanked an administrator of the group or someone you know who advocates for awareness, please do. They don't hear it enough and sacrifice time and energy that I don't think many realize. If you also find a good doctor who listens and encourages you to share your knowledge, make sure to thank them as well.



11/03/2020

Life Lessons from My Mom that have Helped with Chronic Illness

I didn't finish this post in time on my mom's birthday, but as I've learned from Lesson #2 below, it's ok ☺ The night after we left celebrating Memaw's birthday I was looking through old blog posts. I stumbled on this post where I said "I love you mom and I can't wait to celebrate with you when we finally get those answers we've longed for, for so many years." I honestly feel like we've been celebrating the past 4 months, grateful every day, and will continue because that's what you've taught me.


This past year there were a lot of times I felt like a failure as a mother, but Memaw would come to the rescue and do things with the girls that she'd do with me and my sister that I cherished so I didn't feel like they were missing out. I'm fortunate that she taught me so many things growing up that would benefit me with my chronic illness.


1) Work ethic - even during surgery recovery I was going to make myself get up and walk because I work hard and it pays off.


2) Sometimes you just have to let things go. I know there were many times I had expectations and unforeseen circumstances happened, but I've been able to cope because she taught me that early on.

 

3) There's always a reason. That's why determination is so important.


4) Never stop learning - if it's new research on EDS or something I learned from a sermon at church. You can always learn something new.


5) Health matters and being proactive matters - there are things we can do to better ourselves and improve our health and we should continuously stay up to date with them.


6) Everything in moderation - sometimes you just need to celebrate with something special for a holiday or a mood booster.


7) Always be kind. Enough said.


8) Focus on what really matters. What's the big picture? In the big scheme of things, is this really a big deal?


9) Even the smallest things (like a Dr Pepper & Hershey Bar) can be a party or special event and end up turning into a tradition.


10) I'm proud of you - she always told us and it inspired me to always want to do more things to make her proud.


11) Visualize - she used to teach me and tell me to do this in my swimming and I think it's the biggest lesson because I've learned how to turn everything into something positive, even the most difficult hardships.


12) Belt it out in the car - this is just good for your soul (crying allowed too).


13) Nature is most healing and animals most giving. Nothing like being outdoors or at the ranch and taking care of your horse, or planting something that can feed your cows.


14) Dancing can make your heart sing, but even better is watching your own child dance. I'll never forget the words she wrote in a note with flowers after a performance. I think the same thing every time I watch my daughters dance.


15) A smile can make a difference. As I've said before it's been my biggest testimony to smile even while suffering.


Happy 65th Birthday Mom, I love you. Thank you ❤