CHD Warrior Stories: Taking Submission

I am now accepting submissions for Congenital Heart Defect Warrior stories. These can be about children or adults, about people that are living or in memory of those we have lost. 

February is CHD Awareness month, so I’ll spend the month sharing my son’s CHD story and inviting others to charge theirs. I will post all submissions I receive, but I may make minor edits for grammar/spelling/language. 

Please include up to 3 pictures of the CHD Warrior and the Warrior’s family.

I would love to hear all of the amazing stories of strong, resilient people that go through so much, but bring such joy to our lives.

Please send an email to eandowriter@gmail.com with your submission. Stories will be posted in the order they are received.

Thank You!

~E&O

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Back to Work

I’m sorry it has been so long since I have posted on here. As I mentioned before, I have started working full time in addition to my three graduate level courses, so I’m very beat nearly every day. I have a couple of updates for today.

I saw a geneticist not long ago and learned even more updated information about EDS, and it really opened my eyes to how little EDS is actually what causes the most pain and problems. Much of the issues I have, like Sjogren’s, sleep apnea, herniated discs, psoriasis, terribly dry, itchy skin, hypertension and more are actually from pre-dispositions in genetics. Interestingly, none of these things are genetic, but they do tend to run in families, and having close family members with them tends to increase the risk of getting them. In our family, that risk increases ten-fold apparently. All of these conditions can be significant issues on their own. All of them can be attributed from my father and most of my sisters and I suffer from many or all of them. With autoimmune disorders, you may not get the same disorder as the family member, but you are more likely to get some autoimmune disorder if a family member has one. Sjogren’s and Psoriasis are autoimmune, and my father has Psoriasis and rheumatoid arthritis and I got Sjogren’s and another sister has rheumatoid arthritis. My father also has sleep apnea, heart disease, herniated discs and other issues. Another of my sisters has herniated discs as well, and most have some sleep problems. It’s funny to me that we have this rare genetic disorder, but it seems to be quite mild compared to the multitude of other issues we have.

With at least one exception.

My sister “J” seems to have the most problematic EDS symptoms of all of us. She gets recurring spinal fluid leaks and more pain and fatigue than any of us. She often must use a wheelchair/electric chair, and is at times bed-bound. With four boys 11 and under, this can be very difficult. It makes it hard for her to do basic things for herself and her family. Her husband is a firefighter and so can’t always be there to help. To get the leaks fixed, she has to go across country to a specialist in Los Angeles. There she can have several tests done and then surgery to close the leak. It is very expensive and even just getting there is very hard for them. They’ve made it work a few times now with help from donations and family. She is so strong, like most with chronic illnesses.

In other news, work is exhausting and I am barely keeping it together. It is so conflicting for me because I LOVE to be working, especially in a job like I am in now, where I am constantly learning so much about my field of interest. This job is just a ‘temp’ job but it has valuable things to teach me. There has been talk of a permanent position, but I feel like I’m being tossed around, unsure of where I’m going or if I will be dropped. It gets a little irritating not to know whether I will have a job in a month or not. However, at the same time I am so tired every day that I know it would probably be better for me physically to stop working again until I finish my graduate degree. The problem is that I love to work, and I really need the experience, because I have very little in my field, and jobs that my degree qualifies me for, also require several years of experience. So I am trying to figure out a middle ground.

Well, thanks for returning and catching up with me, please comment and visit my sister’s page if you can, even if just to say good luck or something.

Love all,

E&O

 

Dream Hard

One of the most important thing to me is to be able to dream. Some of my most memorable recurring dreams involves flying. Flying in a dream is the most freeing, amazing feeling. There have been some especially difficult days that have left me wishing for my flying dream before bed. I close my eyes and imagine myself standing on a cliff with the wind blowing, keeping me standing, leaning slightly forward. As I am standing there, I let my body relax and imagine being in the sky, able to go anywhere. And then I jump.

The exhilarating freedom is beyond compare.

When I wake up, I keep my eyes closed, willing myself to go back to the skies.

But in life, we need to be allowed to dream. Not just in sleep. I dream about making a difference in the world, about making a good, comfortable, happy life. I am working toward it. Each day, I try to stay on this path of trying to better myself. It is the reason I have been in school, well, forever. Every time I could stop, I don’t want to. I really hope that after I get my graduate degree, I can feel done with school.

Part of the reason it has taken so long to finish school, is the fact that I changed my dreams several times. Dreams don’t have to stay the same. But I think if you want to change them, you have to REALLY be sure that you want to change. I am one of those people that can generally do well at a lot of things, and I am very interested in learning about lots of different things. It is really hard to find something you are passionate about when you have interest in everything. I have found that in my life there has always been one thing I kept going back to: language, writing, reading, words. With my medical concerns, I have had to make some changes in my life. While I am not pursuing teaching anymore, I have found something that I haven’t lost interest. I look forward to learning. I want to read my textbooks, to research about it. I know I have found my place. I never would have found it, if I didn’t allow myself to dream, to dream HARD.

Additional note: I never would have been able to dream hard without others in my life respecting my dreams, and helping me find my way. Thank you.

Illness Army: Diagnosis of a Chronic Illness

This post was featured in the Illness Army Series by Cass at Indisposed and Undiagnosed. Please view her blog for some great posts from many suffering from chronic illnesses.

 

Diagnosis of a chronic illness.

At first, there is some relief. You think, finally I know what is going on. My questions are finally answered and someone actually listened. Now I can move on.

But sooner or later, depending on the person, realities of what the diagnosis means sinks in. For some, a little at a time, for others all at once. Sometimes triggered by events, sometimes by people, sometimes out of nowhere at all. Things will forever be different.

These times can be extremely distressing, exhausting, terrifying, depressing. But, the important thing to remember is you can still be happy. You can still do things, they may just be different things, or the same things but in different ways. With the right support, anything is possible.

Here is a list of 10 things you can probably still do:

  1. You can tell people you love them. You don’t have to be able to do everything for them. You don’t have to be the one to cook or to clean or to fix things around the house. You may not be able to show them love in ways that you used to. But, you can find new ways to show them. And even in the hardest of times, you can always just tell them that you love them.
  2. You can smile encouragingly at others that may be going through a hard time as well. If you see someone getting out of their vehicle, parked in the handicap spot, you can smile at them. Even if they don’t look sick, you know they could be going through so many things, and with all of the other rude people in the world, you can be the one to brighten their day.
  3. You can accept help and support. Others want to be helpful. You may not be the type of person to ask for help easily, but sometimes all people want to do is be able to be there for you, to be able to help in any way possible. Give them that chance every now and then. It will help both of you.
  4. You can follow doctors’ orders. This is a hard one sometimes, but it can make a big difference in your everyday health, pain levels and attitude to do the things the doctors suggest, whether that includes just taking your medications on time, doing exercises, eating healthy, keeping a positive attitude, or just making all appointments.
  5. You can kiss your family. Love them. Kiss them. Hug them. All the time. Don’t hesitate to give them love.
  6. You can laugh. Laughing can be healing. It can improve everyone’s attitudes. It can change your whole day for the better. Laugh whenever you can.
  7. You can live. You can live your life. If something is keeping you from doing something you want to do, find another way to do it. If walking through the store is too much, don’t be afraid to use the motorized carts. If you want to take your kids to the amusement park, plan ahead and do it. You may have to rent a wheelchair or cart, or bring a walker or cane, or take tons of breaks and drink tons of water, but you can do it if you really want to.
  8. You can help others. Even something small, like a dollar in the donation can at the store, or something big like heading a fundraising campaign all make a difference. Sometimes the simplest things can be a great help to someone else. Try doing something once a day that is purely to help someone else. Helping others brings joy.
  9. You can dream. Dreaming gives us a chance to live a different life. You can fly, swim, jump, walk, run, or do anything you want in a dream. You don’t have to wait until you are sleeping. You can close your eyes and just imagine it. See it happening.
  10. You can be happy. Sometimes people think that because you are smiling, that means you aren’t really hurting or sick. They just don’t understand chronic pain. I don’t think anyone could truly understand chronic pain without having it. A life of chronic pain means that our pain tolerance is pretty high, and that sometimes we can still walk and laugh and smile, even though we are actually dealing with some significant pain. We have to. You can live happily if you want to. You can smile and laugh and do what you want. Don’t let the actions and comments of others dictate how you live your life.

Diagnosis of chronic illness is hard. It is hard for the one diagnosed, for the family, and for the doctor. As long as everyone is understanding and supportive, everyone can still live a happy, loving life. You can do things. They may be different things now, but you can do them.

Freezer Meals Failures and Tips

12190767_817942626374_656855467_o111A couple months ago I decided to attempt freezer meal cooking to help me out on days that my energy is low and pain is high. See the post here. Since then I have done another freezer meal day and I have learned several things in the process.

  1. The ziploc bags nearly always leaked either while starting to freeze or defrosting in my fridge. I got name brand bags and even double bagged them the second time around. It helped but didn’t solve the problem completely. In the future, I plan to buy extra large stack-able storage containers for my freezer. I have found that the locking lids work best because the top can’t come loose when getting cold like cheaper snap on ones. Something like this. Above are my double-bagged dinners. The majority of them didn’t leak, but some still did. Never through the top, it was always the bottom corner or side-seams that tore.
  2. Certain meals are actually easier and taste better in the oven, even though they are marked for the slow cooker. I found that certain meals, like ones for seasoned meat, like my favorite Lemon Pepper Chicken, putting them in the oven makes for juicier chicken. It was just as easy for me to stick them on a backing sheet and put them in the oven, than dumping them in the slow cooker. When you are home and can stick them in about an hour or so before dinner time (or you forget to stick them in the slow cooker in time, which was my case, the oven is a very good option, and I think it tastes better. My slow cooker chicken seems always dry. (Maybe you all have some tips you can put in the comments to remedy this).
  3. Slow cookers really do cook at different times. I overcooked most of mine the first time. When the recipe says 6-8 hours, check at 4. I found that mine was overcooked every time even at the earliest time given on the recipe. Experiment with your recipes and determine the best length of time for that specific meal. WRITE IT DOWN. I have the meal lists on my computer and edit the labels with time changes.
  4. Before shopping, make sure your shopping list is thorough and check ALL of your supplies. This may seem obvious, but as a person that has trouble remembering details, I found that I tend to miss things if I don’t triple check. My second freezer meal attempt sent me to the store 4 times in one day. yep. never again. For a couple things, I thought I had enough in my pantry but ran out. For others, I missed them on the grocery list. For some, my list didn’t say how much I needed, and I ended up not getting enough. Be thorough. If one recipe calls for 2 14oz cans of tomato sauce and another calls for 1 28 oz, and another yet for 3 14oz, keep track of how they will be separated when making the meals. You may want to get bulk to save money, but in some cases, you may want to have a couple separate if you can’t make them all at the same time.
  5. Don’t forget side dishes and extras. Write on your list how many side dishes, what types, and even plan ahead what they will be if you like. Don’t forget things like parmasan cheese for an italian meal or bbq sauce if your family wants it for dipping. And don’t forget essentials that we sometimes don’t put on our lists because we get them every time anyway. Make sure you buy enough if you will need them for the recipes too.
  6. Have the recipes, ingredients and labeled bags ready before you plan to do the assembling. Don’t wait until the time you set aside to assemble, because labeling takes time away from assembly. Last time I didn’t finish in one day because I had to spend time labeling. I didn’t end up making those meals at all because of pain.12185612_817942636354_524890089_o I didn’t even bother to put away any of the ingredients after shopping. I did the shopping the day before assembling and I left everything out.12193931_817942646334_1159626150_o.jpg
  7. If you are hurting, take breaks. Don’t completely over-do it just because you really want to get it done in one day. Sometimes that is impossible. You may want to do less meals in one sitting next time. I did 27-28 both times, and it was really too many for me. I ended up on the couch for days after.
  8. Find shortcuts that you are comfortable with. I don’t buy fresh garlic. I buy a jar of minced garlic. It isn’t worth it to me to buy fresh. If you can get certain things already chopped, you may spend more, but will save a lot of time and wrist/hand pain. Get a food processor or a chopper if you can. Though I got a hand-chopper and it was virtually useless, so it may require a bit of an investment for a really good one. I hear this one is great and it is on my wishlist.
  9. After trying a new meal, write down any changes you want to make, and if you don’t like it remove it from your list entirely. My conditions give me some terrible brain fog, and often I can’t remember if I liked something by the name of it. After I try a new meal I have to immediately write on my list any changes I want to make or delete it. It helped especially in improving cooking time and removing certain ingredients I didn’t like.
  10. You don’t have to eat them every single day. When you make a meal plan, leave a couple days a week empty. Use those days to catch up on any leftovers (especially with the soups, as they tend to have a lot of servings) or go out to eat. Move the empty days around based on how you feel that day. If you are feeling good, you may one to use the empty day to cook something special, or use the empty day for leftovers if you aren’t feeling well and didn’t have a meal defrosted. Don’t feel like you have to eat one every day.
  11. While ebooks are great for recipes, they aren’t necessary. There are free freezer meal recipes everywhere. Check pinterest and even google. You can find hundreds of good freezer meal recipes without paying a cent. Most of mine are from New Leaf Wellness because even though I don’t like every single recipe, I do love most of them and her instructions and shopping lists are wonderful.

I hope these are somewhat helpful. I’m at a standstill with meals right now because of some medical issues, which I’ll explain a little more next time. Have a good day! Feel free to leave comments!

Ignorance is the Disability: A video by Caylee Shea –The Pain is Real.

This woman is chronically ill, like me. This video reveals some of the awful things that people say or do to people that are ill, especially when they are very young or not visibly sick. The judgements we go through every day, the reminders that we aren’t ‘normal’ for our age; that we can’t do what everyone else can; that we are broken; they eat away at the courage and strength we do have. Don’t forget that everyone is going through something. It may be obvious, or it may be a deep dark secret, invisible to others. We must treat others with respect and dignity, and think about how you would feel if you were in that situation.

I have several chronic illnesses, and like her, they have intensified in the last year or so.  Unlike hers, mine was not due to the Gardisil vaccine, but that doesn’t make it any more or less important or severe. We can’t compare our pain with others, because pain is relative to the person’s own experiences. We can only try to help when we can, and find comfort knowing that others can understand our worries.

I will share with you my struggles, with my illnesses, with my family, with my goals. Thank you for reading. I will see you soon.

E&O