Monday, September 15, 2014

Just One Word Can Change Your Life

This post is kind of a combination post of both the ending of Invisible Illness Awareness Week--who's theme this year was Just One--and the beginning of Mitochondrial Disease Awareness Week.

You would think someone with as many chronic illnesses as I have and how long I have been dealing with them for that nothing could phase me anymore medically. I thought I was handling and pretty well adjusted considering the laundry list of illnesses, going to school, and working several jobs at a time (before everything went really downhill at around age 27),

But on December 30th, 2013 my whole life changed with one diagnosis, one lab report handed to me,,one appointment of being told what was possibly to come problems (on top of already intense medical problems), one sentence with the answer I've been looking for. Finally, just one diagnosis that explained why I had so many diagnoses at such a young age. Just one word: Mito.

That is the day I was diagnosed with mitochondrial disease. I found out I have deficiencies in complex I, III, and IV along with a problem where my cells can't convert carbon dioxide to oxygen, and I had red ragged fibers which meant I also had some type of unidentified neuromuscular disease. The thing about mitochondrial disease is--as it's name implies--affects the mitochondria of the cell, and cells are everywhere in your body, and if the cells aren't producing enough energy to operate or are dying than that part of your body will die too. We already knew that my GI system was pretty much completely shut down--as I was on tube feeds already--, I had neurological problems, cardiology problems, sensory issues, etc. After talking to the doctor we knew that it was going to be progressive. and we knew that it is terminal. In the course of one doctor's appointment, one hour, and one explanation I went from walking into the appointment with a not terminal illness and walked out with one. It just takes one thing to change your life. Mitochondrial disease has definitely changed mine.

It's amazing when you have 16 chronic illnesses already, that one could make such a big difference and impact on your life. Mitochondrial disease affects so many people and in so many different ways. Since being diagnosed my respiratory system, muscuoskeletal system, and immune system have become involved and the others that were already involved have progressed more. Mito is a progressive disease for basically everybody, and terminal for almost everybody too. It just depends on how long you stay controlled before you start to pass away. Mito takes the lives of children (more than childhood cancer each year), teens, young adults, and older than young adult adults. Today, one of my friends passed away at the age of 27--stupid mito. Mito also affects so many organ systems and what not you often have too many symptoms to list or even be able to think about. I take so many meds (and so many times a day) I can't even remember them all and have alarms set on my phone. I am pretty much permanently wheelchair bound when I'm out for long periods of time, and I'm tube fed through a tube in my small intestine 24/7. And I have countless specialists, therapists, treatments, infusions, counseling, etc. to be able to deal with all of my issues that mito causes.

I am so, so happy that I FINALLY know what is wrong with me and that I have a diagnosis and a kick butt doctor that is such a good specialist in mito that takes such good care of me. I'm glad we finally know the truth. But sometimes I think this truth just plain sucks. Incurable, progressive, terminal disease. Takes the lives of children and other ages frequently. Has symptoms that impact sufferers on such a high level that they can barely function. A need to take so many medications and supplements just to be semi-functional part of the time. A disease where you join so many support groups and get to know these people intimately and talk to them daily and then mito takes them far too soon, and their earthly journey is over, and your friend is gone. Yeah, sometimes knowing I have mito pisses me off. Because I know what's coming and I know what's been and it's just not fair.

Another thing about mito that you have to get used too (or even really any of the chronic illnesses I have) is that once you are chronically ill, your life doesn't turn out like you planned all. Heck your next 2 hours may not be able to be planned and carried through. When you are a type A personality like me, this is the hardest part of chronic illness. The not being able to follow through with things. The possibility of disappointing people because your illness takes over. You never know if you are going to be able to achieve your dreams, to get that degree you want, or score that dream job if you do get the degree. You don't know if a guy will ever want to date you again because you are in a wheelchair and have a feeding tube now. You don't know what kind of health complications you may have. But you have to remember in the back of your mind, that things always happen for a reason, and they work toward good always. So even if you think that things aren't going the way you planned them, they are probably going the way God sees fit for them to be planned. You just need to sit back, relax, listen to direction, not make as many plans that will penalize you if you do not complete them exactly when they are on your calendar. After you do all that, then you need to thank God for the challenges in your life, because you know that by having constant challenges in your life you will grow into an immensely strong, encouraging, and inspiring person. I promise. That's just how it works. Having a chronic illness of any kind, helps you find your purpose fast, in areas that you never thought your purpose would be in. 

During this week think about some of the stuff I mentioned about mitochondrial disease. Visit the /United Mitochondrial Disease Foundation website or Mito Action's website to learn more about mito as well. There are so many people affected by mito, and it's a nasty disease. Once you know you have it picks you up, turns you upside down, and shakes you all around trying to see if you can handle it. All of us with mito though (and my other chronic and invisible illness friends) are warriors. We fight the battle hard. We do not let the disease win, ever, even if we are losing our earthly battle. We always come up on top. Everyone knows us mito warriors are strong and courageous. But all of us also know it just took one word to change our lives forever. The word mito changed my life forever. I'm trying really, really hard to cope with the negative changes and throw some positive in there and help others with mito know that they can make a difference, they can accomplish their dreams. Yes mito changed my life forever, but that's not necessarily a bad thing. Because the other one word that I rely on the most in my life is hope. And we always win when we have hope!

Sunday, September 14, 2014

2014 Edition of 30 Things About My Invisible Illness You May Not Konw

Every year during Invisible Illness Awareness Week, the 30 things you may not know about my invisible illness meme is posted to have people respond to it. This is the 3rd or 4th year I have participated. It's always interesting to look back at them and compare. So here are my current 30 things you may not know about my invisible illness.

1. The illness(es) I live with is (are) & 2. I was diagnosed with it (them) in the year(s): Mitral Valve Prolapse (from birth), Heart Murmur (from birth), endometriosis (age 16), PCOS (age 16), ulcerative colitis (age 24), celiac disease (age 24), fibromyalgia (age 25), dysuatonomia-pure autonomic failure (1st suspected diagnosis was age 25 of POTS--postural orthostatic tachycardia syndrome and NCS--neurocardiogenic syncope, confirmed diagnosis of PAF came at age 27), ehlers danlos syndrome (age 28), gastroparesis (age 28), feeding dysfunction (age 28), intestinal dismotility (age 28), unspecified neuromuscular disorder (age 28), mitochondrial disease--positive muscle biopsy for complex I, III, and IV deficiencies along with an inability for my cells to turn carbon dioxide into oxygen (age 28), colonic inertia (age 28), and anxiety/sensory issues due to multiple chronic illnesses--especially ones that wreak havoc on the sympathetic and parasympathetic nervous system so it heightens my nervous system and therefore causes me more intense levels of anxiety-- (age 28)
3. But I had symptoms since:Forever, from one disease or another. The more serious ones like dysautonomia and mito, I started noticing mild symptoms at around 16 (well mito earlier than that actually now that we know what it is and I can look back and notice it, but dysautonomia around 16), and started with the more moderate symptoms at the age of 24/25. I have had extreme debilitating symptoms since I was about the age of 27.
4. The biggest adjustment I’ve had to make is:not being able to do things whenever I want to, having to schedule my life for lots of breaks, and realizing that sometimes I may have to cancel my plans at the last minute
5. Most people assume: That I over exaggerate how sick I am because I don't look sick and I do so much, there is no way I could do so much school/advocacy wise plus be as sick as I say I am. No one understands my sense of determination.
6. The hardest part about mornings are:Waking up if I am having a morning where I just can't get up and out of bed. Or getting everything ready to go to school if I do get out of bed. Packing my feeding backpack with my pump and bags, the doses of meds that I will need while I am out, flushing syringes, my school books, laptop, Ipad, pens, chapstick, wallet, etc. stuff for my bookbag. And taking all my meds and getting my dog out and getting me dressed to leave on time. It takes me between 1.5 and 2 hours to get ready every single morning.
7. My favorite medical TV show is: Grey's Anatomy, duh! And House when it's on reruns
8. A gadget I couldn’t live without is:my IPad/Iphone. It's got so many apps to help me out with life, boredom with games, relevant apps for dietetics school, tv apps, school office like apps, email, messenger, and my portal to keeping in touch with all my chronically ill friends.
9. The hardest part about nights are: staying asleep long enough to get my last dose of meds in, or falling asleep and staying asleep if I'm having an insomnia night.
10. Each day I take 26 medications & vitamins. (No comments, please)
11. Regarding alternative treatments I: have tried them all. I loved acupuncture, but she refused to see me after I got my feeding tube, I still do chiropractic and massage therapy, I also do physical therapy. I had tried diet therapy before I was on my tube, but can't do that now.
12. If I had to choose between an invisible illness or visible I would choose: I've kind of got both going on right now since I have a feeding tube and use a wheelchair. The visible part makes parking in the handicap spaces easier, but the invisible illness part is easier to hide if you know someone is judgmental of you. 
13. Regarding working and career: I was a special ed teacher for middle schoolers with autism and I loved it and I miss it. I am in school to become a registered dietitian currently. But I am also on full and permanent disability. With my disabilities I know I will never be able to work full time. But I do want to work part time up to the amount I am allowed to and still keep my disability because I really love dietetics. 
14. People would be surprised to know: that sometimes I really am scared of what my life has in store for me...I'm not always positive all the time.
15. The hardest thing to accept about my new reality has been: the isolation, the temptation of food, and the laying in bed all the time because that is all I feel like doing.
16. Something I never thought I could do with my illness that I did was:go hiking on walking trails with my wheelchair for several miles
17. The commercials about my illness: There really aren't any, except for fibro. And those are lyrica commercials and they make me laugh because lyrica does not make me walk down the beach holding hands with someone all pain just doesn't.
18. Something I really miss doing since I was diagnosed is: running
19. It was really hard to have to give up: eating real food as my primary source of nutrition
20. A new hobby I have taken up since my diagnosis is:blogging and sewing 
21. If I could have one day of feeling normal again I would:go for a run, eat whatever i wanted, go camping, and walk through the mall without the fear of passing out or being in pain
22. My illness has taught me: that there is beauty in the small things in life and we should never take for granted one single day we have here on earth, because we are never guaranteed another one and far too many people lose the battle far too early.
23. Want to know a secret? One thing people say that gets under my skin is: 'Get well soon.' I have chronic illnesses. I may have less symptom free days...but I'm not going to get well...or be healed.
24. But I love it when people: ask me questions about my disease and seem genuinely interested in learning more to understand where I am coming from. 
25. My favorite motto, scripture, quote that gets me through tough times is: "All I need today is a little bit of coffee and a whole lot of Jesus."
26. When someone is diagnosed I’d like to tell them:Don't get discouraged, do research, understand your illness so that you can advocate for yourself, never give up. Also, never spend a day where you do not get out of bed at all because the day you don't get out of bed at all is the day you stay in bed forever. 
27. Something that has surprised me about living with an illness is: how much support, love, encouragement, and inspiration you get from the awesome people you meet in the support groups of those who have the same illnesses as you.
28. The nicest thing someone did for me when I wasn’t feeling well was: went to the store and bought me some ginger ale, then went to my favorite coffee shop and bought my favorite coffee drink and came over to give both to me and told me i could drink the ginger ale after I had my coffee to calm my stomach down from the nausea the coffee would probably cause...and then stayed and chatted for a bit.
29. I’m involved with Invisible Illness Week because: I think it is super important that awareness be put out there about these chronic, invisible, orphan diseases so that more people are aware of them, know how to act when they meet people with them, and are more willing to donate research money to their research funds.
30. The fact that you read this list makes me feel: loved :) <3 font="">

Saturday, September 13, 2014

Advanced Chronic Illness Seminar: Syllabus, Topics, and Terms

Just as a little joke/play on words, I thought I would do an academically themed blog post of everything you have to know and understand if you are diagnosed with one, a couple, or several chronic illnesses since school just started back for me on June 20th!.

 I have made it a full 3.5 weeks of school without being absent, I was tardy once and it severely upset me more than the teacher but it was because the neurological portion of my diseases made it so I could not find my keys and I was late to a hospital orientation. But I've made it to 2.5 whole weeks of school without being absent...did you hear that people? After 331 days of bed rest, I am really doing this. I am throwing my list of 17 chronic, congenital, genetic, debilitating disabilities out the window and I'm turning a new leaf  and going back to school, carefree, and the living is easy and I don't have to worry about being sick anymore...because I'm all better..because I'm back in school.

Wait, what?

Can I really do that?

Can I really just wake up one day and decide that the chronic illness life isn't for me anymore and I want to have a different life, a different story, a different career, a different schedule. Does it work like that?

Last time I checked the definition of CHRONIC ILLNESS...that would be a big HELL NO! The definition of chronic illness itself is an illness or disease lasting 3 months or more, by the US National Center for Health Statistics. Chronic illnesses generally cannot be prevented by vaccines or cured by medication, nor do they just disappear.

So if you want a life parallel to the life of chronic illness you needed to know and work and understand how to make the two lives work TOGETHER. A job that is seemingly impossible most days. Because most days...I can't even make my basic life of wake up, take a shower, get dressed, do something productive, work with my 17 chronic, congenital,
debilitating disabilities, let alone add anything else.

The hardest part about living a "parallel life" in addition to living your chronic illness life, is that if you try to live a parallel life you are going to run into SO many people that just SO do not understand at all. And it's majorly frustrating. This week has been the epitome of that in so many ways. I do not care how educated you are and how much you think you are aware of different cultures and people and minorities and situations. Or if you even hold a degree in a health care profession. That does not mean that you understand what it's like to live and function and achieve when you live a life of chronic illnesses. 

You are not aware that when you are showing up to class that you are showing up, every day, on time, and not complaining with a smile on your face and a good attitude. This is despite the fact that your leg muscles may hurt because of putting pressure on them and standing on them for a long time when you have significant muscle damage. You feel as if you are about to pass out because you aren't getting enough energy intake fast enough through your formula or you are standing up too long so your blood pressure dropped too much. Or it's difficult to lift anything or carry your feeding pump backpack because your back hurts so bad. Or you feel so incredibly exhausted you just feel like there is no way you can get out of bed at all...but you know you have to...because you are only allowed to miss 2 days the whole semester and it's still the firs month. Or the fact that it took you 1.5 hours just to pull and take your meds and pack your feeding backpack and make sure you have everything with you that you could possibly need in case of emergency for the day like towels, extra extensions, meds, alcohol swabs, etc. Or you can't even really see because your blurry vision is kicking in. Or you are so nauseous you can barely think about anything else. Your life is not just waking up, rolling out of bed, putting on some clothes, and showing up to class like so many others. You have to fight just to make it out of the door every morning. And I mean fight hard.

In addition, to those around you in the non-chronic illness world you have to deal with the mental and emotional thoughts that you are going through at the same time. You have to come to terms with yourself of why this is happening to you? How much in your life will change? You feel like no one understands you, like no one could possibly know how difficult it is just to do simple tasks.You probably throw around in your head ideas like you can't handle all this,what happens if your family is all gone--then who will take care of you, about how scared you are, and on and on. For me, usually at least, the emotional side of chronic illness is almost way worse than the physical side.

Now to get on to some of the parts of what are required to actually know how to live and thrive with chronic illness. First, you've got to know what you need to carry with you at all times in case of emergencies and keep supplies in mind that need to be ordered and kept up on for maintenance. For dysautonomia, you've always got to have water, salt, compression stockings, fold up chairs, and those towels that you can soak in water to make them cool in the summer with you so you don't pass out. For Ehlers-Danlos, you've always got to have braces for every part of your body available in case you dislocate something. For celiac, you need to always know where the nearest gluten free snacks are. For ulcerative colitis, you need to know where the closest bathrooms are. For mito, you've gotta have your wheelchair, access to some muscle relaxers, and have stuff in your car to set up for a quick nap. For gastroparesis/tube feeding, you've gotta have your feeding backpack all loaded with formula and water/gatorade, syringes for meds, meds, flushing syringes, towels, extensions, tubie pads, and changes of clothes. You always have to plan ahead for what you might need. And even over plan and have more stuff than you will ever need. But you'll get used to it once you are sick for a while. 

The most important thing about getting a chronic illness diagnosis is that in some ways it's a relief because you are finally finding out what has been debilitating you for so many years and causing you so much grief. But at the same time you realize that the rest of your life is going to be ruled by your illness, or illnesses, and instead of buying cruises and dream houses and having kids and getting married, your life looks completely different. Now, instead, you are buying blood pressure machines, supplements, syringes, gauze, tape, saline, creams to prevent itching and fungal growth, gas to go to and from appointments, more supplements, prescriptions, braces, wheelchair parts, lights for your IV pole, and on and on. 

You will be spending the rest of your life waiting on something. Going somewhere. Trying to figure out the next step. You will go to so many different doctors and therapies and treatments. You will have regular appointments with PCP's (primary care physicians), cardiologists, gastroenterologists, endocrinologists, neurologists, rheumatologists, geneticists and metabolic doctors, orthopedists, electrophysiologists, physical therapists, occupational therapists, speech therapists, chriopractors, massage therapists, accupuncturists.You will learn so much medical terminology and information you could earn a medical degree. I guarantee that you will know more about your medical condition than your doctors will, especially if they are just pretend specialists, or specialists that aren't really all that specialized. You will have every test there ever was known to man and more. You'll get blood drawn all the time, CBC's, CMP's, UA's, pregnancy tests like all the time just because you are of child bearing age but seriously who is sleeping with this mess and how would this mess of a person find the time or energy to sleep with anyone anyway--even if she wasn't infertile already, x-rays of everything multiple times, CT Scans, MRI's, skin biopsies, stomach muscle biopsies, small intestine biopsies, thigh muscle biopsies, organic acid testing, colonoscopies, esophageal studies, swallow studies, stress tests, EKG's, echos, EEG's, sleep studies, and on and on and on. And you will never get all the answers you want. But you will still want to keep trying and waiting. Your schedule will be insane. 

I think the most important thing for those without chronic/invisible illness to realize is that you are lucky, for right now. But you never know when it will be you. It comes without warning and takes over your life and you have no control over it. And you can't give it back. You've just got to learn how to deal with it. I know I've told this story before, but when I was taking adaptive PE in undergrad my professor was describing the difference between those who had disabilities versus people who didn't and the class called them typical or normal people. She said that you can never say someone is typical or normal. You should always describe someone without a disability as temporarily able bodied because you never know when they will be disabled and not normal or typical anymore. Cocky little me, president and captain of everything, straight A's, 3 jobs, running all the time, involved in my church, 21 year old self was saying in my head "nah, that will never be me, I'm way too healthy" and I was on permanent disability 5 years later. Yeah, it totally happened to me. Fast. My whole life was turned upside down and inside out. And I am learning to thrive with it, and use my life now for education, awareness, advocacy, and testimony. But boy was I wrong when I said it couldn't happen to me. It can happen to anyone. At any time. So be on your toes. Enjoy the ride while you can. And treasure every moment you have on this earth as if it is your last. Because it may very well be. We never know what will happen. If chronic illness does happen to you though, learn to be grateful for the little things, get to know some others with chronic illness, I guarantee your life will be better because of it. Those of us with chronic illnesses are pretty kick ass, if I do say so myself! 

I hope you enjoyed your crash course in chronic illness living. I also hope you never have to use it! :)