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Here Goes Nothing! (September 19th Reveal)

Well, today is September 19th and you know what that means! Today is the day you all get to hear about the idea I have had rattling around in my brain.

There is this group on Facebook that I belong to called Teal Mail For IC which allows you to add your address to a master list and others can send you cards, letters, and sometimes even gifts. It has been a huge blessing for me as I have been dealing with some tough stuff.

I have gone back and forth for the last two weeks debating if this was worth it, if it would help anyone, if I could get enough people interested, yada yada yada. I have decided there is nothing I would like more than to have even just a few of you amazing people as snail mail pals and maybe, slowly, this idea will blossom and spread and help others along the way.

Let me be clear about something, you do not have to have a Chronic Illness to join this awesomeness. All you have to have is a willingness to share even the smallest part of you to lift someone else up.

I have also created a Facebook Group for easier access to addresses as well as more privacy. You can see the group HERE

I will soon be starting a master list of addresses (You can keep your private for only me as an admin or you can post it in the group to allow others to send you inspiration as well as me!)

Below is one of the cards that encouraged me to do this, even knowing very little about how to run a group. It’s the littlest things that can go such a very long way in making someone’s day and I hope I have made yours a little better, either with my blog or just being a friend.

You. Matter. Reach out, you never know who’s lives will be touched by you and your kindness <3

 

Inspiration

I occasionally like to do 30 day blog challenges so feel free to send one if you like! This is from a few months ago but I felt like I really needed to share this. Mandy, we love you!

Blog Challenge: Day 13: Someone Who Fascinates You And Why

I always found it a little strange when someone says “This person just fascinates me!” Okay, maybe I still do. But then again I never really had anyone I admired or wanted to learn more about until a few years ago.

Most of you have heard my story but for those who haven’t, here is the condensed version. I am a 22 year old blogger who suffers with Interstitial Cystitis, Endometriosis, Pelvic Floor Dysfunction, Anxiety and Depression since 2012, shortly after becoming a newlywed. My husband and I spent months going to doctors, having so many tests, blood drawn (Yes, I still shriek like a little girl every time!) Physical Therapy, counseling, piles and piles of medications; some of which interacted badly with each other and ended up giving me seizures. It made me feel like I was an alien, something the  doctors needed to study and find out the most information they can.

Then we started trying to get on Disability. We got it pretty fast compared to some of my other “Spoonie” friends; some of who had to wait years or are still waiting for a response!

When I first got my diagnosis, I was beyond relieved. It wasn’t all in my head after all! But after the initial happiness at finally knowing what was wrong with me went away, I emotionally crashed-hard. I had very little support from friends and family. Then one day I decided I need to deal with this, I couldn’t keep going on the way I was. Depressed. Anxious. Scared. I had horrible hygiene for a while (Gross, I know!) and I was still sleeping all the time.

While I was searching for a support group in my area I came across a group on Facebook called Cure Us From IC And More. The group was started by an amazing woman named Mandy Southerland. She suffers from Fibromyalgia, Osteoarthritis, Insomnia, Migraines, Neuro Cardiogenic Syncope, Restless Leg Syndrome, IBS, Anxiety, Depression, Scoliosis, Bursitis, Tinnitus, Colitis, and Tachycardia.

Some people I’m sure will ask why she fascinates me. Well it’s simple. She has suffered from all those conditions, spent years going to doctors getting test after test, medication after medication and when she finally got her diagnosis, she didn’t let it break her down. She is the strongest woman I have ever met.

She created a support group to help others around her deal with their frustrations and limitations that come with chronic illness. She also has started doing YouTube videos about her illness, questions people ask her, and her ‘normal’ day with chronic pain. You can check out her videos here. She was also mentioned in the newspaper for starting the support group on Facebook!

She does  so much for those of us who are struggling while waiting for the test results and even for those who have been sick for years! She knows just what to say and how to say it. I asked her to tell us about one of the ways she keeps the group fun while still being supportive. “I do the different themes each day to keep it interesting in the group. Each day as you have noticed has a different theme, like Medical Monday for example… I try to find something to post that fits along the lines of our IC needs. If I can’t then that’s where the “And More” comes in with in the groups title. We have multiple illnesses so I search for one that I know the group will greatly appreciate, and post it. We all learn so much, not only from my post, but from each other that day as well in the comments bellow from our experiences that pertain to the post.”

She is the strongest person I have ever met in my life. I am so glad I got the chance to get to know her.

How many of you belong to support groups either in your town or on Facebook? I started my own support group for “Spoonies” on Facebook called One Spoon At A Time because there are no support groups in my town and I would really like to help others like Mandy helped me. She has gotten so many of us so much farther forward than we even thought was possible. Thank you, Mandy. We love you!

Reach out, you never know whose lives will be touched by you. You are not alone. You can do this. I believe in you.

9-11

I feel really silly admitting this but as much as I wanted to do a post for today, the words would just not come out right for some reason. There were no words to describe all I wanted to say. So, instead, I decided to just make a short playlist of the songs I have listened to on repeat all day long <3

The Start of my journey to becoming a Naturopath

IMG_3516            Hi fellow Spoonies! I am a new contributor to the Spoonie Sanctuary and I wanted to introduce myself.  I’m Elizabeth and this is just a bit of my story. I am so excited to contribute to this blog and to get to know all of you. Please feel free to email, call, text or Direct Message me with questions or if I can help in any way. I will be posting over the next few weeks introductory post, so that y’all can get to know me and what I’m about.

Sometimes I feel like I’ve been sick since I was born. As a child it felt like I caught everything that came along and back in the mid 60’s and 70’s Western medicine’s answer to every runny nose was a shot of penicillin and steroids, which cause a whole new set of problems. I’ve always thought the reason I was so sick all the time was I really didn’t get what I needed prenatally and I started out behind the curve, not having a healthy immune system to start out. My mother says she didn’t know she was pregnant until I was born, surprise it’s a girl!!! (The Twisted Road, My Journey to find the truth) Having had three children of my own I really don’t see how anyone can not know they are pregnant, I knew from conception with all three of mine. I learned at a very early age to listen to my body and I just feel if something is different. I guess for some women, and based on the circumstances of my conception, maybe you might not admit what was going on with you, but I’ve never been in that situation so, I really can’t understand it.

Continue reading “The Start of my journey to becoming a Naturopath”

Enough

I was watching One Tree Hill awhile back for the 7th time and this quote just hit home with me. I know it sounds silly, but this is what I hope to accomplish one day with my writing. I know that I need a lot more practice and sometimes my stuff is not the greatest, but I wanted to say thanks to all of you who have encouraged me to keep going when all I wanted to do was give up writing and forget my dream of one day helping someone with my writing, either published or just sharing something I wrote with someone in need.

“I wanna help someone. I wanna reach to that girl or that boy who wakes up one day and feels like it’s not worth it any more. It’s like… I don’t need to be famous, and I don’t need all the money in the world. It’s not about that. It’s about that girl who’s having a horrible day, and she hears your song, and for five minutes there’s hope, ya know? It’s like for five minutes the world’s not such a scary place for her anymore. You ask what’s going to be enough? That would be enough. That would be more than enough.”

23 Spoonie Hacks That Can Make Life With Chronic Illness Way Easier

What spoonie “hacks” make your life easier? Share in the comments below.

Written by: Erin Migdol

If you’re a spoonie it means you have a chronic illness that probably limits the amount of energy you have each day. You might not be able to do everything you want without crashing later, so saving energy (“spoons”) wherever you can becomes crucial.

Since every spoonie has his or her own tricks and strategies to conserving energy, we asked our Mighty community to share their best “hacks” that help make their lives easier. From getting through a busy work day to saving spoons while showering, this is what real people with chronic illnesses do to manage exhaustion.

Here’s what the community told us:

1. “Shower chairs are an incredible invention. Use them!”

2. “I plan the next day every night before I go to bed with a notebook… what to wear, what to take for lunch, what kind of schedule I have for work, pack any essential items I may need, and etc. It makes the mornings so much easier to have a plan because if I am stressed or anxious it all just gets worse, and if I don’t have a plan and my mind gets all fuzzy then I am just a frantic, confused mess.”

3. “Have stools in the kitchen. Sitting and cooking or washing up is so much easier!”

4. “My slow cooker! I have a family of four to feed so almost every day I slow cook! I put it on in the morning when I still have a few spoons because by 5 p.m. I’m all out of spoons. I also like to precut and have organized foods in the fridge for my boys — that way if I’m not feeling well after I pick them up from school they have food they can just grab.”

5. “If I have four things to do in a day, I only do two, maybe three — that way I feel in control when I stop, rather than letting the pain and/or exhaustion dictate when I stop and make me frustrated.”

6. “I also have baskets under the coffee table with extra meds and things to keep me busy like knitting and coloring when I am stuck on the couch all day. Don’t worry, no kids around to get into the med basket. They’re fabric, nice-looking baskets, too, so people often don’t notice what’s in them. I also do the same for my meds in my closet. A nice pretty basket organized by specific meds so my husband can just grab the whole thing for me instead of rifling around looking for something.”

7. “I order from Amazon on a program called Subscribe and Save. The same time each month I get an automatic shipment of things I buy regularly, like dog food, vitamins, personal care items. This saves me time and money. Leaving the house is always a pain day for me so these shipments keep me from having to go out. It really is very helpful to me.”

8. “The CareZone app has spots to write your symptoms, a medication scanner so you can have all of them in your phone and a calendar to track appointments and it even sends reminders. There’s also an option to get your prescriptions delivered to your door which is nice, but [I] have never tried.”

9. “I suffer from short-term memory problems, or brain fog. When I think of something for later, I often record a video of myself explaining my thoughts. That way, I can reference it later when I struggle to think, ‘What was I supposed to remember?’”

10. “Lots of batch cooking. I spend a day or two whipping up things that are healthy and go in the freezer. Then I can take out something and have multiple meal options with minimal fuss and energy.”

11. “When you tell people you don’t have energy to tackle all your chores at once, they often tell you to break it down by room. Tackle the bathroom one day, the kitchen the next, etc. Well, sometimes I don’t even have energy for that much work. So I break it down by task and order of importance, and then I tackle those one step at a time. If I can only clean the toilets one day and have to put off the other, non-pressing chores, so be it. I’ve come to peace with the fact that my dwelling is never going to be spotless, and that’s perfectly understandable.”

12. “Phone and tablet cases that hold them up without you physically holding them are great. We all know the priorities of still needing to use technology even at our worst.”

13. “I have wellness Wednesday. I take that one day of the week to shut down and rest. I will juice, yoga (if I feel like it), detox bath, and for dinner, I eat super clean. I just allow myself the whole day off. I also use Amazon Prime as much as possible and Kroger ClickList for my grocery shopping. It has been a lifesaver.”

14. “My hack is ‘No.’ I had to learn it for myself, for others, for everything. No, you don’t have to shower today. And it’s OK. No, I can’t cook for ____ work function. No, I can’t direct traffic at school. No. And no with no excuses. ‘I’d like to but no, I can’t. I’m not sure how my body will handle that so I’m going to have to decline.’”

15. “I can’t sit on park benches or stand for long periods of time. So, I keep a camping chair in my car — that way I can take my kids to the park or pool.”

16. “I put together an ER pack for when it’s time to go with all the essentials.”

17. “Fancy leggings and tunic tops I can wear at work and feel comfortable.”

18. “Give yourself the same love and compassion you would give someone you love or even your childhood self dealing with this.”

19. “Something I’ve been doing lately is rolling around on my office chair. When I’m too sick to stand I can vacuum, clean, change room or do many things in my makeshift wheelchair.”1

20. “Become very deliberate about grocery shopping, meal planning, and cooking/food prep… When I shop, I meal-plan three to four meals during a shopping trip, then I write a rough schedule for meals for the week so I can have things pulled out of the freezer if need be, and I don’t have to think too hard/process things when I’m not feeling well.”

21. “Have Poptarts and Gatorade by the bed for those days your body can’t fathom getting up.”

22. “If you suffer from sensory overloads (autism, fibromyalgia, etc.) or chronic migraines/headaches, wear sunglasses inside so you don’t have to be in a pitch black room. (Though, if it’s not enough and need to be in a pitch black room, do so and ignore this advice).”

23. “Asking for help. Sometimes its so hard to do, but my friends and family have been amazing to me. I have been carried, pushed around in my wheelchair, helped to eat, drink, change my clothes, wash my hair. They have even helped me care for my children. My support network is my everything.”

From The Bottom Of My Heart

I started this blog because I know what it feels like to wonder if there is actually something wrong with you or if it’s all in your head like everyone says it is all because you look fine on the outside.

The days, weeks, months and sometimes years waiting for the test results and when you finally have a name for what is wrong with you, it feels great, but at the same time it can really be an emotional time. It’s not in your head, you finally have a diagnosis. But after the diagnosis comes all the changes that the illnesses bring when they come into your life.

I also know what it’s like to have little to no support from family and friends because you were fine one day, and not fine the next.

I am 23 and I have been diagnosed with Interstitial Cystitis, Endometriosis, Pelvic Floor Dysfunction, Anxiety and Depression.

Four years ago I got married to my wonderful husband, About four months later, my health took a turn for the worst and then came all the doctors, the tests, the scans, the medications, the surgeries, and losing everyone I cared about because they don’t see how I was fine and then suddenly I was far from fine.

My illnesses are called “Invisible Illnesses” because only on the inside you can see how much of a mess I am with all the scar tissue, the scars, the organs sticking together and swelling when I push myself too hard.

I have met some of the best people in support groups. Reach out, you never know whose lives will be touched by you.

I also started blogging about four years ago as a way to deal with my illnesses and all the trials that go with it.

If you ever need to talk, about anything on your mind, you can contact me at any of my Social Media Sites or email me at thespooniesanctuary@gmail.com

Note To Self:

Really having a hard time letting things go. Every time I finally feel like I’m passed yet another bump in the road dealing with my illness, problems with my friends and family, something that should seem like not a big deal in all the things I’ve had to deal with, I feel emotionally right back where I started.

But with the help of an amazing friend of mine, its a little easier to slowly open up and let things go.

She’s a “Spoonie” too and deals with illnesses just like me. The Spoonie community has been such an amazing blessing to me. So many strong, nice and helpful people who, to some extent, understand and try to help each other anyway they can.

I know life sucks some days, some days worse than others, but reach out, I promise there will always be someone there reaching back.

Writing

Despite all the problems lately, I want you all to know that I will always keep writing. Writing has saved me, literally and figuratively. I may not always keep to a writing schedule, even though I would love too. But I will never stop writing. Being a part of Chronic Illness Bloggers and other sites like The Mighty and IC-TODAY have helped make my writing better and surprisingly my writing has also helped others who need it. I probably wouldn’t know if they didn’t reach out and tell me, but it has only made me want to write more.

I have expanded my Social Media profiles and honestly, I probably have wayyyy too many, but I love what I do and want to share it with as many people as possible, if for no other reason than to let others they are not alone, that there is someone who understands the complicated world of Chronic Illness.

You can view all of Social profiles HERE, as well as my brand new Facebook Profile specifically for this Spoonie Sanctuary Blog. Feel free to send me a friend request and say hi, I would love to hear from you!

I do my best to keep all of my pages and Social Media Sites updated and if there is a problem with the site, a page, or you just have something you want to tell me about anything on your mind, you can reach me on any of my social profiles as well as on my Submit Your Thoughts page.

I just want to thank you for following The Spoonie Sanctuary and for giving me your honest thoughts and feelings on all that I have shared so far. If you ever need someone to talk to, or just want to submit a blog post that you would like me to share or have a topic you would like to have me write about, please don’t hesitate to let me know, please!!

Have an amazing day and know that you are amazing. Don’t ever let anyone tell you otherwise. You. Matter. Always.

Eclipse

While my hometown (Idaho Falls) is getting ready for the Eclipse and all the danger everyone is predicting, I am just hoping to make it through the next few weeks and hope my symptoms lessen and leave me less exhausted.

There have been a lot of emotional moments for me lately that seem to just come out of nowhere but with the loving support of my Husband and his great family, it makes it a little less hard to deal with.

I know its early but Wherever you are for the Eclipse, please have fun and be careful! I’m hoping everyone has a amazing weekend and I will be back to posting on Monday. I am taking the weekend to catch up on some much needed rest!

 

Changes

Now accepting Friend Requests!

I have been asked over and over if I would ever get a Facebook profile for my blog and I finally did! Now you can reach me even easier and I am always willing to help! Click the link above or see my new Facebook Profile Page HERE

For those who do not know where they can reach me, here is a list of my Social Media Sites and I regularly update if anything changes!

***I thought when I made it easier for everyone to contact me by giving out my cell # I thought it was self explanatory but for those who didn’t know or just didn’t care, ALL CALLS OR TEXTS THAT ARE INAPPROPRIATE WILL BE BANNED, NO QUESTIONS ASKED!!! PLEASE BE RESPECTFUL AND UNDERSTAND THAT I AM A NORMAL HUMAN BEING AND I HAVE FEELINGS TOO****

 

No One

No one really talks about what happens if you’re sick and you don’t get better; but you don’t die either. You get to live in the margins because it’s either/or. You’re either getting sick or you’re getting better. There’s no in between in our culture or Society. No room for the Chronically Ill.

-Spoonie Sanctuary

Requests?

I’ve been struggling the past few days trying to not let my thoughts run away with me and a very good friend of mine suggested I leave a post open for suggestions or allow others to share a story, so here’s your chance!

Post/comment/send in a story, a song, a video, just something that is important to you! I will post it all!

Re-post Request

I have been thinking about something for a while and decided to see what others had to say. If you could say something to the Undiagnosed Warriors of Chronic Illness, what would you say?

My advice for those of us who are undiagnosed and struggling is don’t worry. Even if it doesn’t seem like it, it will get better. I know this is scary and it seems like your life is over since you got sick, but you will get through this. I promise you. You will be fine. It may take a while to feel emotionally okay again, but it will happen. You are not alone. You can always talk to me if you need someone to talk to. You can find my contact information on my page HERE and you can contact me as well on any of my Social Media Sites

So after posting about my question, I received these answers from some great friends of mine who also suffer with chronic pain and other illnesses.

Carol: This will be difficult but you are stronger than you ever imagined

Barbara :One thing that really helps me is my church family. I also go to a weekly Bible study. Meeting my friends weekly for Bible study is really a stress reducer and mood booster

Jessica: Don’t stop seeking answers. Keep pushing until you find the dr determined to help you.

Cat: My advice to anyone who is struggling to get treatment and help for undiagnosed chronic illness is to be your own advocate or have a close family member or friend to advocate with you. Be prepared when go to your appointments, take a list of all symptoms and how long you’ve had them; take a list of all current medications; have a list of questions that want to discuss at the appointment (I always forget something if I don’t). And don’t forget to write down what information the doctor is giving you, usually it is quite a bit, and it’s hard to remember all of what is said. The next thing I would tell them is to never be afraid to seek advice from other doctors. If you don’t feel you are being heard or not feeling comfortable and have a good rapport with the doctor, try another one. YOU are the one who knows your body and how it is feeling–never let anyone tell you otherwise. When I first got Dx’ed with IC, I was told by multiple doctors that “you don’t get kidney pain with IC.” It took me about 2 years to find a Urologist who would listen to me and treat me, I get Botox injections in my bladder about every 6 months and when it is wearing off, the kidney pain comes back. Talk to someone about what you are going through, you are never alone, find a support group, someone at church, family member or friend who you can let all your feelings out to without having to censor yourself. Express your concerns, worries, and your pain. Having a strong connection with someone you can talk to is such a sense of relief. Be gentle with yourself as you are going through the process. Don’t be hard on yourself if you are not able to do things you may have in the past–taking care of yourself is your priority. If you want to sit down and cry, do it. If you get angry, feel the anger. Just remember you can not stay in these places, you need to continue the fight to get answers.

What would you say to the undiagnosed chronic illness warriors? Let me know in the comments below and have a wonderful pain-free night!!

Liberty Lixir 1,000mg CBD Tincture Review!

I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

Hey everyone I am very excited that today I will be reviewing the Liberty Lixir 1000mg CBD Tincture from Liberty Lotion which is put under the tongue and absorbed to help with anxiety, sleep, pain, and helps relaxation as well. If someone asked me to sum up this article in just a few simple words, they would be “Amazing” and “It’s a keeper!”

I have severe anxiety some days and there are very few things that help when I have a panic attack but thanks to the CBD I am reviewing, my anxiety is finally manageable, which, before now, was rarely managed.

This amazing Tincture is what is called an Isolate which means that the CBD has no THC in it and has gone through thorough testing to remove any non CBD from the mixture.

When I first got the package, I was really impressed with the packaging of the CBD Tincture and the information pamphlets that came along with the bottle, which has a nice dripper in the bottle to make it easier to insert under the tongue. The bottle recommends 9 or so drops as a starting point and I think the dose and how often you take it depend on many factors like pain levels, the type of pain, and where the pain is located.

This is my second type of CBD that I have tried although I have tried different brands more than twice. The first time I bought some, I spent days researching it and decided that the best choice would be the additive that you put in your vape juice but that didn’t work at all.

When I got an email that was asking us to review the CBD, I was skeptical because of the many brands and mixtures of CBD I have tried that have not worked or was not long lasting but I am so glad I decided to try Liberty Lixir CBD Tincture!

I suffer from Interstitial Cystitis, Endometriosis, Pelvic Floor Dysfunction, Anxiety and Depression and after only about an hour after taking Liberty Lixir CBD Tincture my pain was finally down to a manageable level and stayed there for about 5 hours which gave me time to spend with my husband by the river, something we rarely do because of my pain levels.

This is a total no brainer for me and I will definitely be ordering more! I am really grateful for the chance to review Liberty Lixir CBD Tincture as it helped my pain as well as anxiety! I wasn’t anxious anymore and was able to relax and not have the almost unbearable stabbing pain that has become a constant bully in my life with Chronic Pain.

Thanks to Liberty Lotion, I am now finally able to manage my pain and of course I had to share with my friends and family all about the CBD and everyone cannot wait for their orders to show up!

If you have any questions about Liberty Lixir’s CBD Tinctures or their other products, you can see the FAQs as well as more information about the company that has helped so many of us!

My Hobby And My Unusual Limitations

Most of you probably don’t know this about me but recently I have started teaching myself ASL (American Sign Language) as a hobby as well as a way to push myself to work harder at it. 

On my left hand, my ring and pinkie finger tendons were severed from an accident when I was 8 so they are not in line with my other fingers and using those fingers for anything is a lot harder. (See the long scar on my left hand?) I had to give up piano when I was younger because I could not life those fingers off the keyboard to play. 

I have always loved ASL and when I was in third grade I had a helper in school who also was fluent in ASL. It was so beautiful the way he could speak with his hands as well as his voice. I always wanted to learn ASL but when I had my accident, I thought that I would never be able too, so I gave up.

I am now 23 years old and determined to at least learn what I can despite my limitations and struggles. 

The Technical College in my town has now become a community college which means they now offer ASL beginners classes all year round. 

I am waiting to hear back on the exact qualifications and things I need to do to enroll, but I am so glad that I am pushing myself beyond my limits and believing in myself again.

Sometimes

I am not sure if it’s just me or everyone with Chronic Illness who feels like this but lately it seems like the more strides towards acceptance of my life as it is now, there seems to always be someone right next to me who doesn’t hesitate to try and ruin the strides I have taken. 

It’s like if I accept my illness and how my life is then I won’t be who I was before. But that’s the thing most people don’t get. As much as I loved who I was before all of this, I feel more like myself now than I did before I got sick. 

I feel more confident. I no longer try and be whoever everyone thinks I should be. I am proud of who I am and that’s never come easy to be, being happy being who I am. 

I guess I just wish everyone would be happy that I am stronger and more confident and not try and ruin the strides I make every day.