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 free...it 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="">
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 free...it 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="">
We've met in past but never knew each other for me to know you were going through so much, you're a strong courageous woman because you hid extent of how sick you were then well. I don't have to know you to know that after bumping into your blog. This post,, number 23 saddens me when you say you'll never get well. And one statement i read on one saying it was Gods plan because he hasn't healed you. Sickness is not His plan, these diseases belong to Satan, I know you accept Jesus as savior. Please take the limits off God, take the next step and ask for Jesus to baptize you with the fire and fill you with Holy Spirit and declare you Receive his gift of the Holy Spirit to live in you speaking it out. Then tell Satan these diseases dont belong to you, conmand him to take them back in Jesus name and get behind you. Not important that you know me, the Holy Spirit sends you this message, so let me just leave you this link i found in my studies as one i will share because i found posts very clear http://www.therisinglight.com
ReplyDeleteI don't own page but know these miracles happen, once God is taken out of box, limits removed. I've done it, didn't know until feedback that a friend ovarian cyst vanished, another friend had her condition was instantly improved. Was shocked Jesus saw me fit to allow me to be a vessel for the Holy Spirit but very thankful and know He wants me to share the wisdom that if I can do it so can anyone else(john 14:12) . Sending anonymous healing prayers your way in Jesus name. Doctors don't have final say, God does. Instead of blogging i target those i hear are in need, link them to resources that pass my discernment then off to other things and sharing with the next one I am led to. So i share and run, God gets credit for supernatural events coming to you, not me. I won't return looking for reply, i just do this to step on Satan's toes rubbing it in his face he has NO power doing my part to weaken the oppression. (LOVE book titled Power over the enemy), I want nothing in return, another reason I choose anomymous if I dont know you. Good day!