Blythe Neer

@sustainablespoonie | contributor
Hello! I am a dietetics student heading into my fourth year of college, and I have several health conditions to manage. While they may change certain aspects of my life, they are not my identity. I love cooking, writing, playing piano, photography, and of course, dogs. I hope to use my love of writing and photography to spread awareness that truly living well with chronic illness is not letting it define you.

Gadgets to Make Cooking With Chronic Illness Easier

I’ll be the first to admit it: Cooking with a chronic illness is hard. Add food allergies to the mix, and you’ve got a recipe for disaster. I can’t tell you how many times I have hungry-cried in the kitchen because I just have no energy to make the food my body desperately wants. Thankfully, I have found a few gadgets that save both my spoons and my time in the kitchen. Some of these also help to decrease my pain levels overall, which I consider a huge win. I have personally tested all of these products in my own spoonie kitchen, and I want to share with you my top spoon-saving picks! 1. Pressure Cooker My pressure cooker is my new favorite substitute for the ever-popular slow cooker. Pressure cookers can be used as a slow cooker, but they can also speed up the process, making slow-cooked meals in as little as 15 minutes. I have made soups, stews, meats and even cakes in my trusty pressure cooker. I frequently cook large batches of meals to store in my freezer for the low-energy days on which I can’t cook. It consolidates all of the cooking into one pot, which decreases the amount of cleanup as well. I love being able to cook my entire meal at once by just dumping ingredients in and pushing buttons. My Pick: Instant Pot 2. Food Processor I have a love-hate relationship with my food processor. I don’t like the clean-up, but it does save my hands from chopping things like spices, vegetables and other fresh ingredients. Along with chopping and slicing fresh ingredients, food processors can mix things like cookie dough or bread mix and save your precious spoons for other things. I really like that they come in several different sizes, and a smaller size would be great for folks who struggle with muscle weakness. My Pick: Food Processor 3. Food Dehydrator I just recently purchased a food dehydrator with my wedding money, and it has become one of my favorite tools. With it, I have made my own snacks that are gluten-free and gastroparesis -friendly. Some recipes take a lot of preparation, but a lot of delicious things can be made by simply turning on the machine and adding ingredients. One of my favorite things to make is fruit jerky, and all it takes is a pouch of fruit baby food dried for 24 hours in the dehydrator. I can set it, forget it and have a week’s worth of snacks to have on hand. Dehydrators are also helpful for saving fresh ingredients. Fresh fruits and vegetables that are about to go bad can be salvaged by turning them into chips. This is a huge money-saver for me, since I tend to lose energy for cooking the things I have planned and let my ingredients sit for too long. My Pick: Food Dehydrator 4. Jar Opener Especially with neuropathy and Ehlers-Danlos syndrome (EDS), opening jars can quickly drain my energy; sometimes, I can’t get them open at all. When I don’t have someone around to help me, this can be extremely frustrating. One thing I have found to help is a jar opening tool. These tools provide more leverage and grip on jar lids to make them easier to open. I prefer the manual version so I don’t have to worry about batteries, but I’m sure an electric jar opener would work just as well and maybe save even more spoons! My Picks: Jar Opener, Electric Jar Opener 5. Electric Can Opener Electric can openers might seem “lazy” to some, but for those of us with chronic illnesses, the energy they can save can allow us to cook more or even cook at all. This is one tool I truly can’t live without. Spending an entire day slowly opening a can to avoid pain is absolutely ridiculous, and that’s what I would have to do without one! My electric can opener saves my hands from nerve pain and weakness due to my neuropathy and EDS, which is well worth the cost. My Pick: Electric Can Opener 6. Grabber Tool A grabber tool can help throughout the house, not just in the kitchen. It can be used to pick things up off the floor, reach boxes or spices in the hard-to-reach cabinets, and even shut doors or put items away without exerting much energy. Instead of bending over and causing more dizziness or climbing into the cabinets and wasting spoons, I can just use the grabber to get what I need easily. At first, I found it silly, but after a while, I realized just how much energy I waste by having to reach for things that are just out of reach. My Pick: Reacher Tool 7. Rocking Knife Cutting and slicing things with neuropathy or Ehlers-Danlos syndrome can be extremely taxing and painful. I used to avoid recipes I knew would require dicing just because I didn’t want to be in pain or exhausted. Now, if I just need to cut a few things for a meal, I like to use a rocking knife. Rocking-knives allow me to use both hands while cutting and cut at a different angle, which is easier on my joints. Spreading the work between both hands leaves me with much more energy and much less pain. My Pick: Rocker Knife I know cooking can be stressful and hard, and I hope that by sharing a few things that help me, you can find it a little bit more manageable. Do you use any special tools in the kitchen? A version of this article was previously published on the author’s blog.

5 Tips for People Diagnosed With Celiac Disease

I was the second person in my family to be diagnosed with celiac disease, and I thought I was on top of everything. I figured I knew just how to handle it, and it would be no big deal. I was wrong. I was finally diagnosed after years of “it’s just stress.” I cut out gluten and carried on as usual. Then I got sicker and sicker, then better for a bit, and sicker again. It’s been a roller coaster, but I’ve learned a lot along the way. A lot of mistakes I made could very well have been prevented with a knowledgeable doctor and some outside help. A few days ago I was reminiscing about the things I did when I was first diagnosed, and it made me wish I had a celiac friend to teach me helpful ways to manage chronic illness. I can only hope to be that friend for you, fellow celiac! So to stop my ramble, here are five tips I wish I had heard when I was first diagnosed with celiac disease. 1. Focus on real whole food. Instead of replacing all of your food with gluten-free versions, try to replace your packaged snacks and meals with whole foods. Fruits and vegetables are naturally gluten-free, and they can save your wallet and stomach. An easy meal can be made with a clean source of protein like chicken or fish, cooked veggies and steamed rice. Fruit is an easy snack and it can easily be paired with a gluten-free nut butter to keep you full longer. Gluten free packaged snacks are usually filled with preservatives and other fillers that can easily irritate your gut just as much as gluten! Your mind and body will thank you for the switch. 2. Season foods yourself. Spices and seasoning are an easy place for gluten to hide, so be sure to buy things that are unseasoned. Find fresh herbs or specific gluten-free prepared spices to season foods yourself and eliminate the risk of cross-contamination. This is especially important with frozen vegetables, frozen meals, ready made broth and packaged foods. 3. Learn to read food labels. Food labels are confusing and allergy information can be hard to find. I only trust brands of snacks, baking ingredients and meals that say “gluten-free” on the label. Even with gluten-free labeled food, I check the back of every package for words like “manufactured in a facility with wheat,” or “processed in a facility with gluten containing products.” If anything is listed about cross-contamination, I won’t eat it. Some celiacs find no issue with small amounts of gluten, but I’ve never been that lucky. I also don’t want to further damage my intestines or nerves by consuming gluten, no matter how good or convenient it may be. 4. Don’t give up. It may take a long time being strictly gluten-free before you start seeing results. For some celiacs, myself included, being gluten-free is not enough to manage symptoms. I saw drastic changes immediately by eliminating gluten, but I still had lots of symptoms that didn’t go away completely. I had to experiment with eliminating other gut-irritants from my lifestyle and diet before I found complete relief from some things. 5. Connect with other spoonies. Though not many people talk about it, especially doctors, celiac disease really is a chronic illness. Even with all of the lifestyle changes, we will still experience flares and other autoimmune symptoms and conditions. Many of us have to live with the lasting damages that gluten has caused to our bodies. It is so important to have a support group full of people who understand what you are going through. There are many celiac specific support groups on Facebook, or you could join another spoonie community online. I really hope these tips will help you, encourage you and support you in your newly diagnosed journey. Having celiac disease is no fun, but it is not a death sentence. You will find new foods that you love, and your belly will be forever grateful. You will learn to cook, become a food label expert and make lots of new friends online. You will have ups and downs, but there will be people supporting you through it all. I’m cheering for you, friend!

When My Health Prevents Me From Contributing Financially

I had a busy week, which was full of doctor appointments, planning, and a short trip to the mountains. My sweet roommate helped me roll around a lake in the mountains, and we saw so many pretty sights. I even got to see my first moose! I tried a new treatment recently, and I am starting a new medication for my heart today. Thinking about the potential benefits that the new medication may provide me got me thinking about my goals for the future. One of my top goals is to work again, and I have been questioning why it is so important to me. I’ve always been an over-achiever, and I can’t stand not being productive in some way. Losing the ability to contribute to a household is really frustrating to me, and it saddens me to think about getting married soon and not being able to help out financially. I don’t want to frustrate my future husband or make him feel like he has to do it all himself, and I really don’t want to feel like I have a caretaker. I want it to be a partnership, and I don’t like the idea of not being able to help. I’ve talked with my counselor about it quite a bit since it has been bothering me so much, and she helped me realize something important. Relationships with people are much more important and valuable than financial or physical contribution. If working would take all of my energy and leave none for my friends and family, then it wouldn’t be as helpful as I think. With no energy left for my husband, he’d come home to a jumbled mess of a girl unable to hold a proper conversation about anything. Our weekends would consist of me sleeping and moving from the couch to the bed and back, in order to be rested enough to go back to work on Monday. I would be contributing financially, but there would be no relationship. That would hurt much more than just feeling “lazy.” Staying home instead of working may be hard on my ego, but being able to listen attentively and hold conversations with my husband when he gets off work will mean much more to us than money. We will spend weekends together and make memories other than watching Netflix on the couch, and I might actually feel like a normal wife for a little while. I can cook for us and help keep the house clean for both of us instead of being unable to even wash my own dishes. It stinks that I have to decide between contributing financially and contributing relationally, but because of how much relationships mean to me, I choose the latter. Thankfully, everyone most important to me seems to agree. A lot of us in the chronic illness community are unable to work due to our health, and I know many feel the same way about not being able to contribute. I am still going to feel guilty and embarrassed, but I hope the more I remind myself that I am putting my relationships first, the more confident I will feel in my situation. If you are on the opposite side of this and are the working one of the family, I think it’d be great for you to remember this as well. We may seem smiling and healthy when you come home, but we wouldn’t be that way if we worked normal hours. Staying home instead of working allows us to fully support you the way we should. Thank you so much for reading, and I hope my writing helps you find comfort and peace in your situation. If it does, please feel free to let me know below or on my contact page. I love hearing about your experiences.

5 Non-Glamorous Symptoms of Hypermobile EDS

I have Ehlers-Danlos syndrome (EDS), hypermobility type, and I have noticed it becoming a more popular diagnosis. I believe that it is very under-diagnosed, but I have had several people tell me that since they are flexible that they must have it as well. EDS is most widely known for hypermobility, but a large portion of the population is hypermobile without symptoms, which means they do not have EDS. When I have friends questioning whether they may have EDS or not, I first send them the new diagnostic criteria, which includes many symptoms other than hypermobility. Sometimes EDS may seem glamorous because it is mostly invisible, but many of us experience several non-glamorous symptoms as well. These symptoms are embarrassing and a little bit shameful at times, but it is part of the diagnosis for many of us. Here are five non-glamorous symptoms of EDS, hypermobility type: 1. Incontinence Wetting the bed and leaking during coughs and sneezes is only for people who have had children, right? Wrong. Thankfully, pelvic floor rehabilitation can keep struggles in this area a little more manageable. 2. Hemorrhoids Only older folks get hemorrhoids, right? Wrong. Many EDSers deal with these on a regular basis, and while it is not pretty, it can be improved a bit with lifestyle changes. 3. Night Sweats People only sweat when they are anxious, exercising, or hot, right? Wrong. Many people with EDS have autonomic dysfunction, which can cause sweating to appear at ridiculous times, especially at night. It’s not a small amount of sweat either, and many of us have to get out of bed to change our clothes and sheets. 4. Red or Purple Extremities Feet and hands are the same color as the rest of the body, right? Wrong. Along with the night sweats, autonomic dysfunction caused by EDS makes blood pool in the hands and feet, especially during hot showers or while standing. The extra blood turns the feet, legs, and hands dark red or purple, which isn’t always pretty, and it is painful as well. 5. Bowel Problems Only those with inflammatory conditions have persistent bowel issues, right? Wrong. Many EDS patients struggle with chronic diarrhea, chronic constipation, or a mix of both. It can result in immediately necessary bathroom trips, additional gastrointestinal symptoms, and even fainting. Gorgeous. While these symptoms are not the most fun to talk about, they are an every day reality for those diagnosed with hypermobile Ehlers-Danlos syndrome. Please be kind and considerate to everyone. You never know what they could be struggling with on the inside. Getty Image by a-wrangler

Having a Mental Illness Does Not Invalidate Physical Illness

I recently went to my doctor for increased symptoms of fatigue and pain leading to a major decrease in my activity. During the appointment, I asked some general questions to see if there were more treatments I could try, and I informed my doctor of my recent PTSD diagnosis. As soon as that cat was out of the bag, the tune of the appointment completely changed. Apparently no treatment but antidepressants would help me, and I needed therapy. I have a confirmed diagnosis of hypermobile Ehlers-Danlos syndrome with many comorbidities, and my PTSD diagnosis should not invalidate my symptoms. I am in therapy, and I have been for over a year. However, my EDS symptoms are increasingly worsening. Just because I have a mental illness does not mean that my symptoms are not real. I came asking for help, and instead I got discounted. I am not sure if this is common amongst other chronic illnesses, but I know it is especially prevalent in those with EDS. I have found more and more people with both PTSD and EDS due to the genetic predisposition of our bodies to overreact to stressors. If anything, our EDS sparked our mental illness. The mindset that some doctors have can be dangerous, and I experienced the effects myself. I believed what they said, and I started to ignore all of my body’s signals. I began snowboarding and rock climbing, which was fun at first, and I loved it. The more I went, though, the worse I felt during and afterwards. I began having difficulty driving, walking, participating in school and even standing up without falling. Because I ignored what I felt, I can no longer work many hours or attend school. I am hopeful that I will get back to that point again, but my specialists are not sure how long it will take if it is possible at all. It may take some searching, but I am going to find a new doctor who can look realistically at everything going on and truly listen. I am thankful for my specialists who are willing to help me try new things and suggest treatments. If you are in this same situation, or if you have been brushed aside because you have a mental illness that doesn’t explain your symptoms, please do not lose hope. There are doctors who understand and truly want the best for you. Keep searching until you find a good one, and don’t ever let them go. Listen to your body, and do what you know is best for you. You are allowed to say no to medication, and you are allowed to find someone who will listen.

Service Dogs and Perceptions of People With Disabilities

Last week, I had my first appointment with an occupational therapist. She thinks she will be able to help me build up to returning to work and school, but it will be a very slow process to learn my limits and stay inside them. I will be using a wheelchair almost all the time, and I have been preparing myself for the transition. I am in the process of getting a chair fitted to me, but until then, I have an old Goodwill one that works if I have someone with me to push. My roommate came with me to the appointment, and we decided to stop by our local Scheel’s to look at sandals and swimsuits after. Scheel’s is dog friendly, so we brought my service dog prospect, Quimby, for some training and socialization opportunities. I knew that walking the store would leave me sick the next day, so I used the chair. I had a really great experience, and I didn’t expect it. I’ve used the chair before, but always without my pup. Many people would glance my way and quickly avert their eyes, completely avoid me, profusely apologize for not seeing me, or even speak to me as if I couldn’t understand. It doesn’t upset me, but it also doesn’t feel very good. I don’t like to be seen as an embarrassment or burden to anyone. I know their intentions are not to make me embarrassed, but many really don’t know how to act or approach someone in a wheelchair. I found it strange that with my pup in my lap in a big department store, I was approached easily. I had several lengthy conversations with staff and shoppers, and not one person seemed to think I was anything other than a person with a puppy. No one looked at the chair funny or gave me pitying looks, and everyone was so happy to see me and my pup. I got to explain to several people how owner training a service dog works, and I got to meet many people I never would’ve had the chance to talk to before. After shopping, I had a nice night with a couple of my closest friends, and as we were discussing the trip, we realized my experience could help everyone understand how to talk to people in wheelchairs or people who are disabled in other ways. If treating us like you treat anyone else is too hard or makes you nervous, treat us as you would if we were holding a puppy. We like to talk to people and have conversations just like everyone else. Sometimes when I go to a store, it’s the only time I’ve been out of the house for a few days, and I enjoy the chance to socialize a little bit. I like to answer questions, and I’m pretty open about why I need a service dog, why I use a chair sometimes, or why I need to take breaks. I would much rather someone politely ask me what they are thinking than avert their eyes or give me sad looks. I’d like people to smile at me like I have a cute puppy on my lap and not like I’m a charity case. I would carry a puppy on my lap all the time if I could, but unfortunately, she will grow bigger than lap size eventually. I’m sure others who use a wheelchair have had similar experiences, and I think it’s time things were different for us. I found that using this analogy really helped me explain to everyone how I’d like to be treated, and I think part of the reason we get treated so differently is because we don’t talk about it. I hope this article will help you have a quick and easy way to explain to others how to treat someone in a wheelchair, and if you can relate, I’d love to hear about it.

5 Things I Want You to Know About Ehlers-Danlos Syndrome

I had a counseling appointment this week, and I was able to bring my service dog in training with me for practice. I was having a rough day, so I was extra tired and sore. Whenever I bring her in, the staff wants to see her and pet her, which is great for socialization. However, many are behind tall desks, so I have to lift her up to see them. She is gaining weight quickly, and it is becoming harder and harder to get her up. I love to let everyone shower her with pets and kisses, though, so I push through the pain and fatigue of holding her. My counselor noticed me holding her up and showing her off to everyone and later asked me if I was feeling OK. I explained that it was actually really painful to hold her and that I would feel the consequences later. She said that I was a great faker. It was surprising to hear someone say I was faking being well; I usually get comments about me faking being sick. During my appointment, I realized that if I don’t tell people how I am feeling, they truly won’t know. Instead of offering to help me, they ask me to do more because they can’t tell that I am hurting. So for my friends and family, and anyone else I may come in contact with, here are five things I want you to know about my Ehlers-Danlos syndrome (EDS). 1. You only see me on my good days. On my good days, I am able to leave the house, carry on a decent conversation, and have fun. I look the way I always have, and I act the way I always have. On my bad days, I stay in the house, and sometimes I don’t leave my bed. I spend the day trying to distract myself from the soreness and sleeping the exhaustion away. Just because I have good days and look normal doesn’t mean that the bad days don’t exist. 2. I need help. Many days, I could use help, even with small tasks. I don’t like to ask or accept help because it makes me feel lazy. I won’t let you know if I need anything, so asking me specific questions is best. If you are out shopping for yourself, ask if you can pick something up for me. If you want to see me, offer to come over to my place instead or push me in my chair if you want to go out. 3. If I am suddenly quiet, you didn’t upset me. I’m just tired. Sometimes, my fatigue comes on suddenly, and I don’t notice it building. Once it hits, I slow down. I may forget words, get stuck on certain words, or just stop talking all together. I am not giving you the silent treatment. I am probably just tired, and I should go home, sit down, or lay down depending on the situation. I won’t be offended if you ask me what’s going on. 4. I don’t sit still. I am uncomfortable most of the time, whether it is temperature fluctuations, sounds, lights, fatigue, or pain. I fidget to cope with my heart rate changes, and I move positions frequently to combat the joint pain. I am not trying to annoy you, and I would really like to sit still and relax. 5. I like questions. If you think something I am doing is strange, please ask me about it. If you notice me trailing off into silence in the middle of a sentence, remind me what I was saying and ask me to finish. It means a lot to me to for you to be interested enough to ask me questions. I know that if you have read this far you either understand what I’m going through, have EDS yourself, or are just really curious. Thank you for taking the time to read and understand a little more what my life is like. I truly appreciate you!