Wednesday, July 30, 2014

Why Didn't I Think of That? Oh Wait, I Did!

This will not be one of my inspirational, make the world a better place one word at a time, for all those with chronic illnesses. It's going to be more of a venting type of blog.

I'm in 30 different chronic illness support groups for all my different chronic illnesses. I also have my Facebook page (also named very similarly as this blog, Healing Hopefully: Megan's Chronic Illness Journey, about my personal journey. I also have people in my life that I have face to face relationships with (or did until I moved away from them but we still stay in regular contact with each other, so they are very up to date on what is going on in my life). These people could be anywhere from friends, to ex-employers, to church members, to professors, to preceptors, to doctors, and on and on and on. I know a lot of my chronic illness warrior friends from the multiple support groups I am in, staying caught up as best I can while being extremely sick myself this summer and having to work on my thesis this summer as well. Basically, all I'm doing this summer is working on my thesis, sleeping, and going to appointments.

The overarching theme and pet peeve of people in every single support group that I am in for every single health condition I have no matter how long they've been on their chronic illness journey, or if they are brand new to the chronic illness world...The number one thing that is our biggest pet peeve is getting unsolicited advice from friends, family members, random people walking down the street, other doctors with different specialties that don't know about the other diseases you have and all the ins and outs of that particular disease, teachers, colleagues, and even other people with the same chronic illness that you have. This is also can apply to all you non-chronic illness people out there too. Perhaps for their parenting skills, or what job they should accept, or what decision they make for their family or their job or their education. About their spiritual and social groups. (However, this blog will obviously be leaning more close to the chronic illness end of the spectrum, since that is what this blog is about). Everyone get's unconsolidated advice, and everyone hates it!

Unsolicited advice is horrible and just makes people so incredibly upset because we should all be allowed to make our own decisions, especially if we are adults, maybe kids at certain ages too depending on the gravity of the choice they would be making. And so many times the unsolicited advice offered is by someone that has no idea about what they are offering their advice to you about. For example, someone who doesn't have children offering parenting advice to a mom. Or someone who doesn't have any sort of chronic illness, or at least doesn't have the one that is causing you issues right now and offers advice to make you feel better. It just doesn't work that way. Why would you offer advice to someone if you don't even have any experience with the issue at hand yourself. This is a little bit different if the question being asked could pertain to your career or degree and you may not have had personal experience with it, but you are educated about the subject. For example, I can offer multiple choices for what I would do for my feeding tube based on my personal and professional experience, but the people reading it should definitely take it to their medical teams, because I am not the health professional for any one in the groups.

This brings me to my next point. Advice can be welcome and appreciated when it is asked for. I will only comment advice on posts that specifically ask for advice. My number one pet peeve is when I post a statement on my status on Facebook or my Healing Hopefully page and I start getting advice and more advice and still more advice. I never asked for advice. I posted a statement, with a period at the end, not a question mark. There are times when I do ask for advice, But if I'm not asking for advice, please let me just vent through my status and take care of myself in the way that I know is correct for me to help me get out of whatever slump I'm in. This especially has happened to me the most with people that have the same chronic illnesses as me. They tell me well we do this, and have you tried that, and on and on. I remind people that I have top notch doctors taking care of me, we have protocols in place, and I'm a highly intelligent person so I don't necessarily need to change things right now. Which basically means, leave me the heck alone people...unless their is a question mark.

While we are on the subject of doctors taking care of our cases and protocols and making sure that we are being provided with the best possible care, that is the truth. It's not up to you, Suzie, Adam, Jane, or whoever else is on God's green earth that gets to decide how to "fix me". You don't have the right to give me advice on my condition or to tell me of some home remedy that you read about in some random magazine in the checkout line at Kroger that swears this home remedy will cure you of all ailments in the universe. You should not be able to suggest to me what new and different medicine that I should take because it works so well for you, it's just gotta work for me or to tell me to change my dosages of my meds because they work better at a higher or smaller amount. You have absolutely no right whatsoever to discuss my medical bills, that should be NO ONE'S business but mine! And my number one pet peeve, you should not tell me how to alter my diet to make me all better now. First of all, I'm on tube feeding, not much you can change about that. Second, I'm in school to be a dietitian, I'm pretty sure I know how to eat healthy, even better than your comment to me.It is so incredibly painful mentally and physically having to deal with these issues all the time: switching meds, switching diets, trying home remedies, fighting with insurance companies to get bills covered. It's a daily battle. Plus, if there were a home remedy that took away all the symptoms of everyone's chronic illness issues, don't ya think the whole chronic illness community would have jumped on that band wagon long, long ago. Do you really think we want to be laying around all day, unable to do things for ourselves. We want to be better. If there was a cure, we would have found it by now, because we have researched over and over and over again and tried everything with no luck. 

I hate it when people can't even spell the diseases you have, or text you to see how you spell that one thing that you have with the bendy joints, etc. And then you get emails or messages with all these articles that talk about how to manage your EDS and things like that. Or people think that you are letting your life waste away while you lay in bed all the time and if you just get up and exercise some or move around you will get better and be cured, or if you lose a couple extra pounds. Maybe you shouldn't be on so many medications, I bet the medications are just causing you to have more side effects and making you think you have more diseases than you actually have. Maybe if you changed your diet, did physical therapy, acupuncture, massage, and take some combination of herbs and supplements and do all this every single day or you won't get better. Doctor's think patients using Google is dangerous, I think patients friends using Google is even more dangerous. They find all this information and opinions about something they aren't even educated on and haven't even spoken to a doctor about. When, really, I've got everything under control. I know what I'm doing over here. 

In my opinion, living with a chronic illness and the lifestyle it brings with it, is the worst part. Our country is so judgmental of anything that is different from the way we are "supposed to be living", different from having your dream job, and a husband (or a wife), with a house on a cul-de-sac with 2 stories, 2-3 kids, a couple of dogs and cats for pets and no worries in the world besides buying school supplies...not scheduling 6 doctors appointments a week and things like that.

No one can accept that those of us who have chronic illnesses, would really rather have the above mentioned character traits instead of living the life of a chronically ill people. Please don't offer your opinion on my lifestyle situation and how I have to make ends meet, when you have no idea how debilitated I actually am. We may "get" to lay in bed all day, but when you're over a year in it gets kind of majorly suckish, I mean even after 2 months I was going batty, we may not have to do certain things because of our disability like vacuuming or cooking, etc., but the disability is worse, trust me. Often we can never get anywhere outside of our appointments and obligations and then it's immediately back to bed. Also, a lot of people think that is unfair because we get "paid" to do no work at all if we are on disability. But most of us would rather be back at work, working full time, fulfilling the purpose of our lives. Plus, I don't know if you've ever had or seen a disability check, but there ain't no living on it. That's why I can't move out of mom's house. It would be impossible. I would almost kill to be able to go back to work again. Tomorrow. If I could. Long, long hours. Having the time of my life. Making a difference in the world. And making a decent wage. 

So if after reading all this you still want to pass judgement on people with chronic illnesses and think they are over exaggerating and attention seeking and not really as sick as they say they are and want to give them unsolicited advice, boy have I got a solution for you.

If after 24 hours of feeling exactly how I feel every day, being hooked up to a feeding tube, having a port accessed, all my symptoms going on in you for the entire 24 hours you still have an opinion that you want to tell me of how to live MY life with MY chronic illnesses then you're not so bright. Because I bet during those 24 hours you will do what we do our whole lives which is look for information all over the place about how to make our suffering just a little bit better. 

And when you start looking for information to make you feel better during the 24 hours, you will realize there is no cure or treatment or home remedy or complementary alternative medicine type that will make it all go away. 

And then you will realize why we get so mad when we get offered unsolicited advice on our conditions that we know more about than most of our doctors even do. If there is any smidgen of information out there that claims that this treatment may have provided some sort of relief somewhere down the line, we've tried it, and we've tried it again. We have thought of every possible solution on the face of the planet. So when you offer us advice...odds are we've tried it and thrown it out the window hard and fast, or tried it and are currently using it. So anything you can through our way has already been experimented with, and I already thought about it. 

So if there is a period after my ranting on Facebook or twitter or whatever, do not give me advice, I did not ask for it. If there is a question mark, respond with your own risk. :) 

Tuesday, July 22, 2014

I am Beautifully Broken

I'm sure if you are a woman/girl, and have a Facebook account, you have seen one of the things going around that are like chain posts, but ask you to add something to do for them, share your addition, and publish your response with the original post, and tag a certain number of people (by name) to do it next.

The chain post I am thinking about right now is this one:
"I was nominated again for the beautiful woman challenge by ____________. Here are 5 more pictures that I feel beautiful in for different reasons! If I tag you, please find 5 pictures that you feel beautiful in, share them if you would like and tag 5 of your friends to do likewise."
I got nominated to participate in this chain  by several people...and I just kept skipping it over.Why you ask?

I know I can be beautiful. I know that I am fearfully, and wonderfully made...and your works are wonderful. I know that you knit me together in my mother's womb. (Psalm 139:13-14) I know that I have held on tight to these 2 verses throughout the past 12 years of chronic, often unidentified, rare, incurable, possibly terminal diseases. Logically, I know this...and if I am fearfully and wonderfully made by God, then of course I am beautiful because God doesn't make anyone ugly, in his eyes.

So then I thought did like any Facebook obsessed, want to be compliant, and on the "in crowd" of Facebook; I dug through all my pictures past and present and completed the assignment of finding 5 pictures that I thought made me "beautiful". So here is what I came up with for my "beautiful pictures":

Those pictures are of me with my newly done hair and highlights with my perfectly colored face and eyes against them, sitting on a pier in the Bahamas, standing with a paper flower I found on the ground right after undergraduate graduation in front of the science building, my jumping for joy at the beach in Charleston, and me all dressed up for family pictures. 


While looking at these pictures I realized they are not me. These are beautiful pictures, but they are not who I am anymore. What I am is a 28 year old, female, with 12 chronic illnesses (2 of which have the potential to be fatal), fighting for my life every day, fighting for stamina every day, fighting to graduate with my Masters of Dietetics degree soon. I am simply a fighter. Everything I do, I do because I know God has plans for me, even if I have no idea what they are because God has not hit me over the head with a 2x4 yet to fill me in. Those pictures may be beautiful pictures of a girl I once knew, but they aren't beautiful pictures of me anymore. So I was at a loss...

Especially because, if you follow me you know, if you don't follow me you will know now. I have had like the worst summer (or time period ever while being chronically ill). I have been incredibly nauseous even with taking the max doses of all 4 of my nausea meds, my pain has increased, my sleep is messed up, I am having dislocations and subluxations one right after the other multiple times a day and especially at night. Every time I stand up for longer than a minute or two I get shaky, nauseated, start sweating all over, and shaking and usually have to lay down on the bathroom floor because it's cool. I haven't been getting all my feeds in because they are making me sick. I've been having increasing vision problems and have gone completely blind multiple times and at least once a day from 45 minutes-2 hours (and Friday it was 9 hours) everything is so blurry I can't read what's on my phone or computer, and can make out the pics on the TV but if they have subtitles I can't read them, and having double vision while out driving and really, really bad photosensitivity. I have also gone from extremely constipated and needing multiple prescription laxatives to being way the opposite of constipated and going to the bathroom 10+ times a day, and sometimes even having accidents because I can't make it to the bathroom in time. My tube keeps popping open and leaking bile and acid all over me and my bed and my clothes. Within the past 3 weeks, the longest my sheets have not needed to be changed from an accident (tube or bathroom) is less than 72 hours. I feel like all I'm doing is washing sheets to put them on the bed, to wash them again the next day. My muscle weakness has gotten so bad it is unreal and I'm using my wheelchair a whole lot more right now. And my lungs have decided to start crapping out and causing me breathing issues and possible sleep issues. I have literally felt like I was going to die multiple times these past few weeks, and have no idea how to shake it, and it just appears to be getting worse, not better.

So, long story short, I feel anything other than beautiful right now.I feel so far from beautiful. I honestly have spent the past 3 weeks thinking I could never feel beautiful again. EVER. I can't even have nice things because they all get ruined by accidents or tube mishaps. I am feeling extremely frustrated that I am doing (and my doctors are doing everything)  that can be done and I am just getting worse and worse. Not better at all. I've got 11 large scars from surgeries. I have a port in my chest that kind of sticks out somewhat and you can definitely touch it even if you can't see it. And I've got a foot long tube sticking out of my abdomen permanently, that is also primarily 24 hours a day, 7 days a week (minus showers, or quick pauses for something else) attached to a set of bags and a pump that provide me with all my nutrition and fluids for the day into my jejunum.And I frequently have to wear multiple braces to keep my joints stable, and have to use my wheelchair a lot too. And if I am going to be standing up for any period of time, I have to wear compression stockings, to help the blood flow go back up towards my heart and brain instead of settling in my feet (at least I bought pretty colors!! :) ) None of this makes me feel beautiful. In fact, for the past 3 weeks. I have felt ugly, worthless, and a burden on society. No matter how much in the past I've been able to say "God formed me in His image", "I am fearfully, and wonderfully made", and all the 'cliche' verses of God formed you to be perfect and just like his most beautiful and perfect child, I could not go there in my head for the past 3 weeks. I just could not accept that God's perfect will was for me to live like this. Which if you normally read my blog, you know that is totally opposite of how I normally live. I look at being sick as my mission. To bring awareness to others, and to support people with the same diagnoses get through this and realize they are still beautiful, no matter what the disease takes from them. I thought of God as using me as His personal messenger, but somehow for the past 3 weeks the signals were getting crossed. I needed to get closer to Him...and I needed to get closer to Him fast. 

I've needed a lesson from myself the past couple of weeks...but it doesn't exactly work that way. God knew it was going to take a mountain to get me out of this funk...and I can't really give myself lessons if my head isn't on my own shoulders right God had to draw me closer to Him, so I could go back to drawing others close to Him through the dark times, and painful times, and lonely times, and scary times. So since I couldn't teach myself my own lesson God used this instead...

This song kept coming on the radio. And it sounded relatively new. I really liked the background music (that's what this ex music geek always notices first). I really liked the rhythms and the melodies. It was a solid song. It seemed like every time when I got in my car that song would play, no matter what time of the day it was, or if I went someplace like 5 times that day, it would always play.. So I started learning the words. And man, if that song was not God sending me a message, putting it right in front of my face, then laying it in my lap for me to look it and then flew into my heart. The song is by Ellie Holcomb and it is called "The Broken Beautiful". Here are some of the lyrics. 

"I'm better off when I begin to remember
How You have met me in my deepest pain
So give me glimpses now of how You have covered
All of my heart ache, oh with all Your grace
Remind me now that You can make a way 
That Your love will never change,
that there's healing in your name
That You can take broken things,
and make them beautiful
You took my shame
And You walked out of the grave
So Your love can take broken things
and make them beautiful 
You say that You'll turn my weeping into dancing
Remove my sadness; cover me with joy
You say your scars are the evidence of healing
That You can make the broken beautiful"
When I finally heard the words, like really *heard* the words, I was reminded *again* that God can do anything with anybody. He formed us perfectly, He knew how we would be for the rest of our lives. He didn't promise us a perfect life. But he promised He would take our broken lives and make them beautiful.

Did you get that...he takes our brokenness and makes us beautiful. He makes us beautifully broken. And it is no mistake. He chose us to be beautifully broken. He chose us to be on this path. Those of us with chronic illnesses. Being beautifully broken is one of the hardest character traits to have, but I also think that it's one of the most rewarding and most important character traits too. Because if we are not beautifully broken. If no one is ever broken. How can we ever know suffering? How can we no turmoil? We will not be able to understand what Jesus gave up and sacrificed for us. If you are one of those chosen ones to be beautifully broken, you should trust that God knows what He is doing and He is using you to teach others lessons about life.

So once I finally realized what my true beauty was. What it really looked like for me, a 28 year old, female, with 12 chronic illnesses (2 of which may be terminal), to be beautiful. It is so much more beautiful than the pictures I showed above, in my opinion, because they show the real beauty of me. The beautifully broken side of me. Do you agree:

There are pictures of me wearing braces on the entire right side of my body, the 4" scar on my left thigh from my muscle biopsy, the feeding tube and 5 scars on my stomach from my tube placement, stomach and small intestine biopsies, and endometriosis ablations, and ovarian cyst removal surgeries, me getting my infusion that I get every week at the infusion center, me trying out my new (it was the first day I got it) wheelchair in the kitchen, my scar for my port on my right upper chest, me with my formula and Gatorade bags which is the food and hydration I get on a daily basis, a selfie of me with my new "mito: what the cell" t-shirt on a day where I looked particularly good, and a quote that reminds you that every scar shows some battle that you have survived. Which is very, very helpful advice, because then we can look at our scars as a positive thing, rather than something ugly. 

Although the pictures above are not "glamour shots" by any stretch of the imagination. They are beautiful pictures of me. They are beautiful pictures of who I really am. These are the pictures of me, being beautifully broken, and showing that I am gonna fight back, and overcome whatever situation comes my way. God is using my circumstances to help others. He has this all planned out. I don't feel better physically, but I sure do feel better knowing that I am beautifully broken by God, for God, to do good work for His kingdom. I just have to keep reminding myself I am not broken. I am not trash. I am not worthless. I am beautifully broken by God. And am loving serving him through my beautifully broken journey, as long as it takes, even if I do have some hiccups along the way, we are all allowed to have hiccups every so often, right? Of course we are. 

For today, I'm going to forget about the broken part, and just focus on the beautiful, because you have to admit, I look like I have it all together in this picture. You would never guess how sick I was in this picture. You would not know by looking at it that I was up from 8:30-11:30 nauseous and dizzy, had a 4 hour infusion that I was also nauseous through, had a conference call with a UMDF (united mitochondrial disease foundation) staff person about the walk I'm on the sponsorship committee for because I have mito, or spent all night fighting sleep while my best friend was over here because I really wanted to hang out but could barely stay awake because I had over-exerted myself. And now that it's past my bedtime I can't go back to sleep. Nope that's not what this picture looks like at all. Not like someone who's broken at all. Just someone who is beautiful. 

But we all know that being beautifully broken is something that we should not be ashamed of, but embrace. 

Sunday, July 13, 2014

Being Sick, Well

If you have been reading anything about me or my condition in any form or fashion for the next 3 or 4 weeks, you will know that this chronically ill gal, has been very ill, even more ill than my normal chronic illness ill feelings. 

I have been almost passing out, profusely sweating, and tremoring every time I stand up even if it's just like for 30 seconds or more. I've been having worsening vision issues to the point where it is very scary to drive long distances and on main roads because I don't trust myself. My vision is super blurry and I can't read anything up close and far away is getting worse.  This is majorly concerning since I start back to school next month, and that's a lot of reading involved. And I've been having weird GI issues. For the past, 8 months I've had to use lots of laxatives to make me go to the bathroom...and now it seems like I don't have to do anything and it happens many, many times a day. And I can't control it. And it happens NOW, not in 3 minutes it takes to get to the bathroom. NOW. I basically can't go outside at all because it's too hot and that just makes my symptoms magnify so much more and I get even more miserable. I'm still trying to get to most appointments. But I am even canceling many appointments because I just don't feel well enough to get out of bed and drive across town. I am just plain and simple sick.

In addition to just being plain sick. I am still trying to maintain my friendships (on Facebook and in person) but it is super hard because I am so exhausted. And I am doing the data collection for my thesis. And that just takes up all my energy right there and it makes me insanely  exhausted on top of everything else. I have *never* felt this sick before as I have felt the past 3 or 4 weeks. But yet, people are still telling me I'm an "inspiration" and how awesome I am at "being sick" and how I am so good at "managing everything"...and I generally laugh at them as I am reading other people's posts in groups and crying in the background because I'm identifying with every post of hurt and shame while I'm getting PM's of how inspirational and strong I am. Don't get me wrong. I like the fact that you think I'm inspirational, and strong, and manage things well, and am good at being sick. But I'm not. Really. I've just come across several coping mechanisms that I use as my mantra, as my rules, my guidelines really...of how to be sick, well. I'm going to share them with you now too, so hopefully you can learn to "be sick, well" as well. So in no particular order here we go.

1) Have an attitude for successful coping. This does not mean you have to have a positive attitude while you have pain or are exhausted. But there are certain attitudes that those who cope with chronic illnesses would do well to maintain at all times, such as: live for today, one day at a time, not in the past or the future, treat problems as challenges to overcome, accepts you illness and reject "why me" questioning,  

2) Daily Living Tips: Be organized and set realistic goals and prioritize activities so you can cope well daily. Decide what is most important and what can slide. Live your life as fully as possible. Seek help from others when you feel you can't cope, allow flexibility and extra time in your plans, take tasks that require concentration more slowly, get medicines and routines organized and written down, get your most difficult tasks down at the time of day you feel best, realize you may have different abilities one day than you did another day. Learn to listen to your body. Stop and rest as soon as you begin to feel tired and don't do too much just because you start to feel better. 

3) Relationships: For successful relationships during chronic illnesses you need to ask for what you need and be specific. You may feel like a burden on others, but if friends and family offer to give you a break and take some of the pressure off of you in some way, take them up on it. Gen help from all possible resources, educate your friends and family about your illness(es), and try to enjoy being around other people as often as possible. 

4) Develop positive self- talk that can help you overcome your negative thoughts. Some of these self-talk phrases to keep your attitude positive are: don't blame anyone for your illness, judge success as taking care of yourself well, enjoy small pleasures when you see them, know that you are not defined by your illness (or by what you can or cannot do), remember that your value and worth have not declined because of your illness.

5) Understand your chronic illness- make sure that you are well versed on your condition. All the causes, symptoms, wonky things it does to your body, treatments, all the things like that. The problem with having these chronic, invisible, rare illnesses is that the doctors aren't as well versed in them so we have to be on top of the research ourselves so that we can keep the doctors on track and make sure they are helping us and giving us the right treatments. And just so we are aware of what might be going on in our bodies so we don't freak out when it starts happening because we are aware of what could happen. Make sure you have ALL the information about your chronic illnesses so you can be educated about what is to be expected.

6) Consult with a doctor after identifying your main symptoms that are unusual. If there is something going on that is out of your typical chronic illness symptom feelings, make sure you contact your doctor. You could be what I call "real person sick" with a virus or other type of infection. It's so hard to tell when you are chronically ill if you are sick or if it's just your illness because you are so used to having so many symptoms all at the same time. Make your doctor a partner in your care, but you should be the main voice and determining factor, you're in your body and know how to feel, not them.

7) Manage your team of service providers: You need to be your own best advocate and make sure that all your doctors are on the same page with each other.These days your lucky if your specialists even send a report back to your Primary Care Physician (PCP). They definitely don't send reports back to your other 5-10 specialists. So there is no way for everyone to be on the same page, unless you make sure you take good notes or record the appointments so that you can tell your other specialists what the previous specialist said so they can be on the same page. You need to coordinate your care yourself since the specialists don't know how to do it for you.

8) Use complementary alternative therapies, that's what they are there for. Don't just use medications and hope all your symptoms will go  away because we all know meds don't work 100%, even if they do take the edge off somewhat. Consider using, in addition to pharmaceutical prescription, massage, pool therapy, physiotherapy, intravenous therapy, counseling, following good nutrition habits, and following your spiritual path to get healing feelings from your spiritual path as well.

9) Create an oasis in your home: Make sure these areas in your home are made safe: floors, walls, windows, furniture, closets, the bed, bed linens, pillows, laundry methods, personal habits, filtration system, ventilation system, general maintenance. For me, when I found out I would be moving to the back half of the house which is a rather large space and basically like a little apartment, I spent a lot of money, time, and energy making my room a very relaxing, soothing place to be because I knew I would be spending so much time in bed. I am so happy in my room, and my friends that come over always comment about how relaxing my room is too.

10) Make sure your whole family is involved and knows what is going on, what the names of your diseases are, what the possible symptoms are, a basic overview of what meds you're on (or at least how to find a list) in case you are unconscious or something and have to go in the ambulance. Things to watch for, etc. Things you may need to watch for and things you might need to be aware of for things I (or you) may not be able to do anymore.

12) Make a healthy investment in your self (stop smoking, drinking, start exercising more, etc). Those who made healthy investments in themselves statistically had better symptom control of their chronic illness than ones who didn't. Plus, if you make a healthy investment in yourself, you aren't only possibly improving your symptoms for your chronic illness but you are also making some other aspect of your life improved as well. :)

13) Manage your medications. Remembering to take one pill a day is tough; managing 10 or more is daunting. Knowing about the drugs you take — why you take them, how best to take them, and what problems to watch out for — is as important as learning about your condition. Merely reading a book about prescription drugs sometimes prompts more worries than it allays. Talking with your doctor, nurse, or a pharmacist can put drug information into perspective. I have such a routine down with my meds know that I don't even have to think about which syringes I need, which bottles need to fill which kind of syringe to what line, and all that. They are always in the same order. I barely have to look to pull up my meds now. Neither of the 5 times a day I take them.

14) Reach out. Doctors, nurses, and other health care professionals aren’t always the best reservoir for information about what it’s like to recover from open-heart surgery or live with heart failure. To get the real scoop, look for a support group in your area and talk with people who have been through what you are facing. The support groups I'm in on Facebook, and the relationships I've developed with some of the people in them are some of the best friendships and relationships I have developed on my chronic illness journey. There is just something so special about someone being able to say, "what, me too!" when dealing with such crazy circumstances. 

15) Plan for end-of-life decisions. If the diagnosis of a chronic condition, or life with one, has you thinking about death, channel those thoughts to the kind of care you want at the end of your life. Spelling out whether you want the most aggressive care until the very end, or whether you’d prefer hospice care and a do-not-resuscitate order, can save you and your loved ones a lot of confusion and anguish later on.

16) Recognize your limits--When living with any kind of chronic condition, it's important to recognize your limits. It can be tempting to push yourself too hard, especially in a society that praises those who push past the outer limits of endurance, but doing so usually results in more pain, fatigue, and limitation down the road. **This is one of the things that I struggle with, by far, the most. I have had so few 'good' days lately that when i have one, I do everything in one day and it results in the next 2 days. Learn to conserve your energy and recognize your limits, so that you are able to enjoy the tasks you are able to do.

17) Learn your body--Every chronic illness patient is different, and what works for one might not work for another. Keep track of activities that lead to increased pain or fatigue, as well as activities that help rejuvenate and relax you. Identify any triggers — such as food, environment, or poor sleeping habits — that cause your symptoms to worsen, and try to avoid them. Learning which things help or hurt you, personally, can help lead to more effective management of your chronic condition — and a happier, more fulfilling life.

18) Remember that even insensitive comments come from a place of love--When you're living with an invisible illness, it’s hard not to feel bombarded by ignorant and insensitive comments. “But you don’t look sick,” people will often say. Some may try to convince you that it's “all in your head” or that you’re just not “trying hard enough." Frequently, friends and family may load you with vitamins, supplements, and other “miracle cures," or encourage you to push yourself harder and forget your pain or fatigue. It's important to remember that, even the most insensitive-sounding comments are coming from a place of love and caring. Usually, it's difficult for friends and family members to understand just what goes on in the life of a chronically ill person, and they're trying to reach out and show their love in the best way they can. When you find yourself on the receiving end of an ignorant or insensitive comment from someone you love, try to accept it in the spirit it was intended, then move on. Remember that only you can know what is best for your lifestyle, and only you can understand your own limitations. Be honest with those around you

19) Frustration with living with a chronic illness--It can be frustrating when others don't understand what you're going through. When you have an invisible illness, often that's the case. Because others don't see the time and effort that goes into accomplishing even the smallest of tasks, they may focus on the fact that you look normal.While it can be tempting to always put on your best face when around others, it's important to be honest about what you’re experiencing. In a gentle and loving way, try to help those around you understand what you’re facing. If appropriate, explain how pain or fatigue makes your daily life difficult, or describe how everyday tasks such as household chores can become too much for you to handle. Invite friends and family to ask questions in order to better understand your condition. It’s OK to have conflicting feelings When you struggle with chronic illness, sometimes, it can feel like you're at war with yourself. Like everyone, you want to look good and seem “normal.” At the same time, it's frustrating when others don’t understand your limitations. You may feel caught between the need to “prove” to others that you’re really sick, and the desire to present your best self to the world. It's OK to feel conflicted. Navigating life with an invisible illness is tricky, and the desire to look normal along with the desire for your illness to be taken seriously are natural. Be gentle with yourself, and don’t forget to have a little extra compassion for yourself and those around you. 

20) Live your life fully, regardless--Although living with an invisible illness or disability poses many unique challenges, it's still possible to have a wonderful and rewarding life, in spite of pain and fatigue. Always remember to honor your limits, learn what works for you, and be patient with yourself and others.As difficult as it may be, an invisible illness doesn't have to stop you from living a life filled with happiness and satisfaction. Let go of expectations, Find supportive friends, search for the joy in the blessings, use your talents and skills for things you care about, encourage someone else.

21) Take care of yourself first.-- Because we're brought up to bear the children who will start out life completely dependent on us, this is especially hard for women. I’ve learned that if I want a balanced, productive life, I need to offer care, compassion and respect to myself first. This is what allows me to care for others.

22)Never, never, never give up--Getting a diagnosis for a poorly understood chronic illness can take years. Many patients give up and settle for a life of bitterness or magical thinking about miracle cures. Disability and medical insurers play on the sick by denying legitimate claims, in the hopes that weary patients will give up their appeals. My experience has been that a determination to access comprehensive and compassionate care, and to receive the benefits to which I am entitled are causes worth fighting for.

23) Be honest about how you're feeling--People can’t read my mind. Just because they don’t understand doesn't mean they don’t care. I find that if I'm honest and straightforward about my condition and my limitations, without whining or complaining, people are generally very willing to be patient and accommodating toward me.

24) Enroll in the School of Whatever Works--In managing my health needs, I've utilized and benefited from drug therapies, surgery, dietary changes, physical therapy and exercise coaching, acupuncture, massage therapy, herbal supplements, homeopathy, enforced daily rest and more. As soon as I think I have it all figured out, my symptoms change and I have to enroll all over again in the School of Whatever Works.

25)Make friends with fatigue.--I rest in bed for several hours every day. This proactive habit prevents the complete collapse that comes from wearing myself out. Instead of fighting the fatigue, I’ve learned to embrace and cherish my rest period, including that little snack and drink I loved in kindergarten.

26) Live as a child--Kids tell the truth, ask for help when they need it, freely give and receive hugs, laugh easily, fall asleep when they’re tired and cry when it hurts. I try to follow their excellent example.

27) Step out of the box--To live fully, I occasionally need to push the limits and step out of my little sick box. Whether it is through travel, volunteering, or learning something brand new, stepping out helps me feel more fully alive and learn new things about myself.

28) Search for silver linings--I believe all of life’s experiences contain value, even the ones that seem bad. Being sick has taught me to be a more kind and sympathetic person, to set reasonable boundaries, to release negative people from my life and to appreciate the beauty in the present moment. These are not small rewards for searching for those silver linings.

29) Find a way to share your gifts--I’ve come to believe that the reason we're here on Earth is to discover, develop and give our gifts. Illness did not exempt me from that purpose and obligation. I could no longer give the gifts I had been trained to give, but I could, and did, learn some new ones.

30)Be still.--I am still for a time each day because I must be. I've grown to love the quiet and peace that abides in the stillness. Learning to be still has improved my health, enriched my intellect and opened a spiritual center that used to be swamped by the noise of living. 

So, anyway, these are just my 30 tips on how to be sick, well. Meaning 30 ways to cope with being sick with a chronic or terminal or whatever type of illness and still feel good about yourself. These tips will help you life a more fulfilling life, even though you are sick. And will help you maybe come up with some of your own tips for being sick, well (being good at being sick). Anybody else got some other ideas. Sometimes we just have to hold on for dear life and  wait for things to change by waiting for the way the wind blows to change. Sometimes we have to rely on others more than others. But we always need to know how to be sick, well. Because being sick, badly...just really isn't any fun, now is it? 

Friday, July 4, 2014

A Dependents Thoughts on Independence Day

Independence Day is the day in America where we celebrate the 'birth of our country'. Where we celebrate our rights as Americans to have life, liberty, and the pursuit of happiness. The day where everyone gets on the bandwagon on Facebook and thanks God and the troops for protecting our freedoms and rights that we gain from living in this great country. Freedoms and rights that are really only afforded to Americans. There are patriotic songs sung, and fireworks going off everywhere (for the week before and after) both making it impossible for me to sleep and for my dog to not have panic attacks every day.

So we are all on the same page here, let me tell you what the Merriam-Webster definition of 'Independence' is "free from outside control, not depending on another's authority, and not depending on another for livelihood  or subsistence." Besides the political debate I could get in about the first portion of the definition (because I think the government is both controlling us and making us use their authority a lot more now), I also realize that I don't really fit into the last part of the definition either. I definitely am dependent on my mother for livelihood and subsistence. With the amount of bills I have coming in and the amount I'm spending on meds and driving to my docs 2 hours each way away and things like that I definitely do not have enough to live on substantially if I were to have to pay rent and utilities.

So realizing I don't really fit the 'independent' category. I looked up the definition to 'dependence'. That definition is being "contingent on or determined by, or requiring someone or something for financial, emotional, or other support." Now this definition definitely fits me in numerous ways. So I'm going to go over how I'm dependent on certain things and at the end how all that effects me.

First of all, moving back home to live with my mom at the age of 26 when I swore up and down I would never leave NC and definitely wouldn't leave NC to move to IN. But I have to live with my mom because the doctors won't let me live alone. I was passing out too often, falling down because of muscle weakness, being hospitalized repeatedly, not able to keep up with my meds at some point. So I had to adjust to this very real and extreme life change for me, very fast. If you remember back from my first blogs, you will see I was in the hospital for 13 days and when I was finally released I was told I couldn't live alone anymore. I didn't have a job anymore because I had just quit (which we are pretty sure is why I got so sick because of the stress), so I couldn't pay my bills anyway. But we threw away, sold, or gave away almost everything in my apartment. I moved an entire 850 sq. ft apartment in a minivan and my Honda so we could drive back to IN. That's all that I could bring because there was no more room and we didn't know how to hall it all. That was a very humbling, and Job like experience. I had to learn that stuff is just stuff and it can be replaced, but I can't be.

I have had to fight extremely hard to work towards my degree completion of Master's in Dietetics which I decided to do basically for fun when I got to IN because I was bored. But it's been a great experience. Minus the fact that the professors don't follow my accommodations all the time. I have definitely physically fought through thick and thin to complete this degree, and I *WILL* finish it this May, no matter what. I'm also working on my thesis which has been fun, but overwhelming for sure. So I'm having to learn pacing techniques, especially since I'm going back to campus based classes in August (as opposed to online). I have tried my hardest, but you can definitely tell that I'm dependent in these situations and not independent. I have friends that take notes for me and a digital recorder that record lectures for me in case I'm foggy and don't hear everything in class. But I won't give up!!

I also have become dependent on health care aids to make my life a lot easier. Specifically, I have a shower chair because I can't take a shower standing up or I will pass out. I also have grab bars all over my bathroom that help me get up and around in my bathroom. I also have a feeding tube now. A jejunostomy tube (J tube for short) because my stomach only has 13% nerve functioning yet so I'm not supposed to eat very much, only like once or twice a week because it takes a LONG time for the food to get to my small intestine and a LONG time to get it from my small intestine to my colon then out. I'm on my feeding tube 24/7, it's like we are best friends. (haha, joke). I also have a port in my chest because I get so many infusions and lah work done and my veins are just completely shot. I also have braces for just about every joint you can think of because all my joints dislocate or subluxate frequently. And I have a cane that I use for mostly in the house, and a manual custom built wheelchair that I use for when I'm out in public. I'm dependent on all of these devices/equipment/tools to help me stay as functional as possible, for as long as possible. They just kind of delay the inevitable. But I'm definitely dependent on them. I don't know what I would do without my feeding tube or my wheelchair. 

I'm also extremely dependent on my mom because she takes care of me when I get super sick and drives me to my far away appointments if I feel I can't drive that day. Several of my friends are awesome too and let me depend on them for emotional comfort, decreasing my social isolation, letting me tell them my gross war stories, 'walking' with me sometimes (I use my wheelchair, my friend walks), and many more people I'm sure I am dependent on. For me, admitting that I depend on others is a major breakthrough because I have always been an extreme Type A personality and athlete, so I'm used to being able to go above and beyond and pushing myself to the max. I never accepted any criticism or complements very well and would get embarrassed and just run away. Now, if someone complements me or gives me a good review on Facebook, I read it and let it soak in and embrace that I helped someone be a better cook, even if it was 1 person out of 300 surveys. I enjoy being complimented now because I'm still chipping away at it, but as my mito progresses day by day, it's going to get harder and harder to keep up. I appreciate the words of encouragement and praise. It's lovely. But, because of my Type A personality and hard head I still don't enjoy having people "care for me", I like people that try to help but don't fall all over me and circle over top of me making sure I am doing the right thing. If I have to be dependent on some people (which I know I have to at this point), I would like the co-dependent relationship. As in the other person in our dependent relationship acts like this and follows my wishes. I know how to take care of myself, I just need help and support sometimes. And I would really prefer that my relationship with my mother (my caretaker) involved her giving me a bath, etc. That's fine for some people, but I'm not there yet. But I can save myself...even though I can save myself. 

The hardest part for me is the fact that I feel like I'm supposed to be in the prime of my life. All my other friends that are my age are getting married, buying houses, finding dream jobs, having kids. And I'm not really going to ever get the chance to do any of these things. Realistically. I am dependent on far to many things. Where I live right now, how I got here, what degree I'm doing, what thesis I'm writing (and who stays in and drops out), mobility aids, feeding tubes, and other health care adaptive equipment, my mother having to take care of me. I didn't even touch on the meds that I am dependent on, or the Physical Therapy, or chiropractic adjustments, or massages, acupuncture. etc. I've always previously been a free spirited, crazy outgoing personality type and this disease that zaps all your energy has completely made me an almost completely different person. 

So, anyway, on this Independence Day, I've discovered that even if you are dependent on so many things, I am still that free spirited, crazy (not as outgoing) personality type. And also definitely still a Type A personality as well. And even though I must depend on so many variables at all times, that doesn't mean that part of the Independence Day truths cannot be implemented. Because I am definitely in the land of the free and home of the brave. And it's that freedom that often gets me through such bad days sometimes. I just go and sit out there and get close to nature and think and it calms me down. And even though I'm not feeling very independent right now, no one can take away my sense of freedom and bravery which are the main fundamentals this country was founded on. 

So despite all my struggles and all my dependencies and no matter how bad it stinks, this dependent will continue to love Independence Day. Because it gives you something that no friend can do for you by holding your hand or sitting next to you in the hospital. It reminds me that we fought for our rights and I always love to add a little freedom and bravery to my character traits. And Independence Day can provide both of those for me. :)

Tuesday, July 1, 2014

Turning Your Disabilities Into Abilities

I have several new readers, so I thought I would revisit the topic of how I feel about having so many chronic illnesses, and I've had a particularly rough couple of weeks, so I think I need to be reminded of my mission for myself as well.

I've always looked at my having so many chronic illnesses as a blessing, a gift from God, a way to give me experiences so that I could help other people with chronic illnesses stay positive and uplifted so that they could get through their times of turmoil, suffering, and uncertainty. Back in November of 2011 (which was only about 3 months into this journey at such a severe level), I wrote this in my blog:
"I am so blessed that He chose to make my life fall apart. I am so blessed that He chose me to be sick and He chose me to lose my job. Because I was complacent in my faith, I didn't know it, but I was way complacent in my faith, and now I'm not. Because now I see Him in everything...even the small things. Now I am blessed, my life is a mess, but I am blessed and I am more beautiful because of it."
Some people think I'm crazy and out of my mind when I talk about my crazy life of chronic illness as being a gift from God. But to me it makes perfect sense.  The Bible tells us that no matter what we are doing, we should do it as if we are working for God and not for man. And what I happen to be doing right now, is being sick. So I'm using my work of being sick, and working with it with a full heart, because I'm working for God. I'm helping to fulfill his commandments of me. 

We are commanded to use our gifts, in the best way we can, and to help people while using them.  So I've sort of seen it as my mission to take my passion of teaching, life long learning, empathy, medical knowledge, and compassion to help others with chronic illnesses understand their illnesses and be able to better cope with their illnesses as well. This is a way where I can use gifts God has given to me, to help others in similar situations cope well and it also benefits me too, because I feel like I'm helping to some extent and I also develop friendships with these people and gaining life long friends. So the relationships are mutually beneficial. 

You don't have to be the world's largest authority on how to deal with chronic illness. Or how to counsel people out of depression. Or how to tell people to live every day like it's your last, because it might be. In order to help people and inspire people with chronic illnesses to live their best chronic illness life well, is to live your chronic illness life well to let others know that you can get through it. It may suck right now (and coincidentally I've been having a horribly symptomatic 3 weeks and I have to keep verbally repeating to my self 'you can get through this, you make it your goal to inspire others, you are not listening to your own advice to everyone else') but you will survive and you will adapt and it will get better. I promise. You can learn how to use your disabilities to help others with their disabilities from your experiences. That empowers you, and makes you feel that your suffering isn't for nothing, and actually has some type of purpose. It's almost like God is using your suffering and bad experiences to do amazing things for other people. 

We also have to remember that God doesn't make ineffective/useless people. He makes everyone with a purpose. He makes everyone with a plan. He makes everyone beautiful in His sight. He makes everyone perfect for Him and that means that you should think that you were made perfectly too. No matter how sick you are or despite what you can't do. No matter how broken you are. No matter how much suffering you've gone through. God made you perfect. You need to never forget that. He made you for a purpose. You need to look past your disability and find out what abilities you have within your disabilities to help others along the way get through some of the same struggles you've already conquered. You are beautiful and perfect to Him! 

There is nothing that says that we have to do the best all the time either. Even if we are seen as the ones that are always seen as the one offering support all the time. We are allowed to feel completely defeated and broken down. Dealing with chronic illnesses is debilitating to everyone at least once in a while. It's a lot to deal with and process. And sometimes we need to admit that we are defeated, we are broken, and that sometimes we tried our best for the day and even though it's not all we wanted to do, it's all that we could do, and that was just enough, and it's ok to get just enough done. We shouldn't have to explain ourselves. 

We have to keep believing that the Lord will heal us one day. Even if that day is after we have left this world. Healing will happen one day. And that is the only way I can personally deal with my chronic illnesses, is to know that my God will heal me one day. And it will be a beautiful healing and everything will be perfect, pain free, no more tears. There will be no more suffering when I'm healed. And I truly believe that. And I try to tell others with disabilities the same thing. 

But the most important piece to turning your disabilities into abilities is to always have a hopeful attitude. Always look on the bright side. See the grass as greener. The glass as half full. Make sure positivity is prevailing in your life. Because if you are going to turn your disabilities into abilities you need to believe with your whole heart that you have something to offer. You have some kind of wisdom or ability or piece of advice that will help others with disabilities improve their quality of life. And the more and more positive that we are, we know that the whole point of having a chronic illness is knowing that we are just supposed to hold on and fight for your life. Because how I mostly turn my disabilities into abilities, is not just by helping people find solutions to their problems or offering nutritional or tube feeding advice. No, I turn disabilities into abilities by always, always knowing that the whole point of life is to know that we are aiming for a chance that maybe we'll find better days. And hanging onto that hope, with all that imperative to the cause of turning disabilities into abilities because you can't have abilities if you don't have good days. 

But I truly believe I was given all these crazy medical conditions, and the passions for healthcare, teaching, advocating, and "fixing" things because God wants to use me for a purpose. He knows that I will fight for the rights of others. He knows I will advocate for the least of these. He knows that I will set things straight. He knows I will educate others. He knows that no matter what hardship or disability He gives to me, I will turn in around and make it an ability. Because I am too positive. And I do not let these diseases win against me. I am stronger than some stupid diseases tryting to kill me. I am an overcomer. I have so many new abilities from being disabled it's not even funny...which is why I am so fond of the phrase 'differently abled'. But for right now, I'm just using my talents and abilities to the best of my abilities and will continue to do so, until there is no fight left.