Posts Tagged ‘invisible illness week’

Life with Pandysautonomia

September 22nd, 2014 by Carrie, the Just Mildly Medicated gal

As a blogger it only makes sense that I am also a blog reader. Occasionally I find a blogger that makes me sit and read while mumbling, “Seriously, she nailed it, that is exactly how I feel!” Well that is exactly how I feel about Rach from The Chronic-Ills of Rach. Take a second to read Rach’s 30 Things About My Illness and then head over to her blog and check her out!

 

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Pandysautonomia

2. I was diagnosed with it in the year: 2012

3. But I had symptoms since: I was a teenager

4. The biggest adjustment I’ve had to make is: to the difference between what I hoped my life would be like and what is actually is like.  I let go of a little bit more every day.  That is hard.

5. Most people assume: that someone will just fix me

6. The hardest part about mornings are: juggling the meds/food/fluids so I can get vertical.  If I get it wrong I will pay for it all day.

7. My favorite medical TV show is: hmmm.  One Born Every Minute!

8. A gadget I couldn’t live without is: My seat/cane

9. The hardest part about nights are: managing my bladder

10. Each day I take 27 pills & vitamins. (No comments, please)

11. Regarding alternative treatments I: have tried almost everything, but the only one that stood up was osteopathy

12. If I had to choose between an invisible illness or visible I would choose: visible.

13. Regarding working and career:  I miss it.

14. People would be surprised to know: that I actually have really high standards. If they judged me based on how things are they would think I am a lazy housekeeper, unambitious and probably a bit mental.

15. The hardest thing to accept about my new reality has been: falling short of my own standards every day.

16. Something I never thought I could do with my illness that I did was: stood up to doctors and ask for what I need.

17. The commercials about my illness: ?

18. Something I really miss doing since I was diagnosed is: being physical

19. It was really hard to have to give up: my dreams for our family, the plans we had as a couple.

20. A new hobby I have taken up since my diagnosis is: writing

21. If I could have one day of feeling normal again I would: dance

22. My illness has taught me: to be a patient patient, but only to a point!

23. Want to know a secret? One thing people say that gets under my skin is: how are you?

24. But I love it when people: really want to know.

25. My favorite motto, scripture, quote that gets me through tough times is: slowly slowly catchee monkey

26. When someone is diagnosed I’d like to tell them: to get as informed as they can, join a support group, distract.

27. Something that has surprised me about living with an illness is: how many other people are, too.

28. The nicest thing someone did for me when I wasn’t feeling well was: listen.

29. I’m involved with Invisible Illness Week because:  I believe when people know how many people suffer there will be more kindness.

30. The fact that you read this list makes me feel: like I am not just a statistic.

 

Rach

A peek into life with Chiari Malformation

September 11th, 2014 by Carrie, the Just Mildly Medicated gal

Last summer I went to a very fun Blog conference called Blog U, while there I met Christi from Ditching the Masks. When we met we did a typical “spoonie” thing. She came up to me and said “Hey you’re Carrie, the Just Mildly Medicated girl right? I’m Christi and I have Chiari.” Then we hugged and made lots of sarcastic remarks and drank wine coolers at an 80’s retro prom… you know, typical stuff.

When Invisible Illness Week came up I knew I wanted to see if Christi would give us a peek into 30 things about her life with Chaiari, whoohoo she said yes.

 

30 Things About My Invisible Illness You May Not Know

chiari_malformation_awareness_5_posters-r9b0370e4775d4f34b17ea138a906e3fe_wad_8byvr_512

1. The illness I live with is: Chiari Malformation

2. I was diagnosed with it in the year: April 2011

3. But I had symptoms since: Jr High years

4. The biggest adjustment I’ve had to make is: Realizing that committing to something could mean I let someone down, and not follow through. It’s not how I roll.

5. Most people assume: I am fine. I look like everyone else. No one can see my “big brain” that herniates into my brain stem. No one can see the compression of nerves that changes with pressure fronts each day.

6. The hardest part about mornings are: Just climbing out of bed. Insomnia is a constant. Pain levels refuse to allow me a consistent night sleep and pain centers around the base of my neck, the area I am laying on while sleeping.

7. My favorite medical TV show is: HOUSE and Bones

8. A gadget I couldn’t live without is: My iPad (I can still write or connect with the world from a horizontal position and that aint easy!)

9. The hardest part about nights are: …that they are endless. I used to love night time, because I loved the quietness and to just curl up and sleep. Now I love the quiet, but they never end and I wake more tired and unrefreshed than I came to bed.

10. Each day I take 9 pills & vitamins.

11. Regarding alternative treatments I: I do stretches to try to help, use a heating pad or ice packs, and have a large hand geld massage head that my husband uses on my back and neck to unbind the knots. It will ease the pain in a way that no drugs ever could.

12. If I had to choose between an invisible illness or visible I would choose: A choice here is really hard. I am not one to complain. I really don’t want people to look at me and see my illness. I don’t want to be defined by it. I want people to just see me and that’s it. There are times when I am really struggling and can’t keep commitments and have to constantly re-explain what I live with and why I can’t… and it is then I wish people could just see my “big Chiari brain” and be done with it. So I guess for the most part I’d keep it the way it is.

13. Regarding working and career: I recently had to turn down a job that was written to my strengths. I couldn’t take it because I knew how undependable I was and I cared too much about the non-profit company to say yes to the job. It broke my heart. So for now I freelance from home and do what I can to help out in ways here and there.

14. People would be surprised to know: I currently can not drive more than 15 to 20 minutes in a stretch. I can not hold concentration longer than that for driving. If I do, I may “wake up” on the other side of the road or worse. I sometimes even have to take a nap before driving myself back home from where I have been. I will crawl into the back of my van if this happens and nap for 20 minutes to an hour and then be on my way.

15. The hardest thing to accept about my new reality has been: Disappointing my family. I missed Easter Sunday one year, for instance, because I was in bed with a full on debilitating migraine. I couldn’t lift my head from the pillow. The kids were old enough to understand, and Dad got them all to Church ok with out me, but I laid and cried to miss my favorite Sunday of the year. I have missed out on tons over the years, and it has broken my heart over and over. The strength and independence I see in my kids makes me proud, what saddens me is when I hear them say, “It’s okay mom, we’re used to it.” I never get used to it. Ever. But it honestly has made them into strong kids who don’t cling, but are prepared to stand up and tackle life, without hanging behind mom’s apron strings.

16. Something I never thought I could do with my illness that I did was: Get back on stage! I have nearly zero short term memory, and I am very unreliable. But small roles, committing lines to long term memory with crazy memory tricks and a understanding director has allowed me to get my stage legs back and feel alive again. I had been off a real stage for 15 years. I’ve never been so happy as when I got my theater life back.

17. The commercials about my illness: In the layman’s terms, my brain does not fit into my skull properly. There isn’t enough room. It’s not that I am smarter than most people and have this massive brain – but rather that my skull is a bit too small and so the result is my brain tissue herniates into the brain stem, creating pressure on my nerves. THAT creates amazing physical “stuff” (to be real super technical) and it’s not always fun. I lovingly refer to this as “squished brain syndrome” even though there is no one else out there calling it that. This “stuff,” for me, ranges from debilitating migraines that lay me flat out, unable to get out of bed, pain that radiates from the base of the neck down my spine (think of a stiff neck in the morning and this is what it feels like up and down my back and neck), daily headaches, nausea, balance issues, concentration problems, driving problems (sometimes not able to drive at all) irritability, mood swings, knots up and down the neck, pain and tingling in the shoulders, arms and weakness in the arms and hands, little short term memory, and vision problems. There is a constant pain in my neck and back, and pressure fronts that move through with weather systems change that pain daily. Some days it can take my breath away. Other days, it’s almost like nothing is wrong with me . The inconsistency is really irritating. There is no “cure” – the only thing that can be done is to do surgery where a piece of the skull is removed at the base of the skull to give the brain more room to relax and not be constrained. This is not an easy fix and can be filled with complications and obstacles, as well as not work at all and cause more issues than you began with. I have not personally chose to do the surgery as the odds of it helping me have not outweighed the risk.

18. Something I really miss doing since I was diagnosed is: Riding on the back of my husband’s motorcycle. I loved doing that with him. I can’t take wearing the helmet and the wind buffering and whipping my head and neck around. It’s just too painful.

19. It was really hard to have to give up: My independence. I have had to ask for more rides than any other time in my life, and that includes when I was a teen and car-less. Asking for help is hard for me. Asking for a ride seems to be one step further and harder yet. I really have to swallow my pride on that one. All my really good friends now simply offer, “Hey, let me pick you up on my way.” I am beyond blessed by that.

20. A new hobby I have taken up since my diagnosis is: chalk painting little pieces of furniture and wooden organizational pieces. I feels so “Pinteresty!”

21. If I could have one day of feeling normal again I would: Go on a roller coaster! I can never do that – as it throws my brain around and makes the condition worse not just by far, but includes instantaneous migraines that take my walking and vision away.

22. My illness has taught me: To simply be appreciative for every single day. So often they are half okay and half challenging. I really appreciate the heck out of all days because I know it won’t take much and I will have a fully down day. I feel I need to really use every single day I have that is fabulous to it’s fullest! I don’t want to waste even a single minute of it!

23. Want to know a secret? One thing people say that gets under my skin is: “Well it must be nice not having to work.” I would give anything to hold a “real job” – so our family could make it. Instead I feel like the reason we don’t. (And why I am constantly trying to find new ways to come up with another few cents I can earn to make sure we do.)

24. But I love it when people: say “You’d never know you had anything wrong with you, there is always a smile on your face.”

25. My favorite motto, scripture, quote that gets me through tough times is: I can do all things through Christ, who strengthens me. Philippians 4:13

26. When someone is diagnosed I’d like to tell them: Not to be afraid… it’s not a death sentence, it’s just not curable. It takes time to learn to live with it well, but it really is something you can learn to handle and often no one has any clue theres a thing wrong with you, and really, that’s a very good thing.

27. Something that has surprised me about living with an illness is: I’m still just me. I’m NOT my illness, even though it fills so many of my days. I am still just the same me I always was and I refuse to let that part of me fade away into the background of it all.

28. The nicest thing someone did for me when I wasn’t feeling well was: It was something really simple, but huge for my heart. One day I was at my lowest emotionally, as I was a couple weeks into a really bad spell. My best friend did not even try to come in and visit, but knocked on the door, handed me my favorite Vanilla Chai Latte from our local coffee house, hugged me, and left me to enjoy. My heart was full and I enjoyed sipping that chai for a long while with a good book.

29. I’m involved with Invisible Illness Week because: I think it’s important to help people be aware. It’s often easy to make assumptions and not know a whole story. I now personally always give the benefit of the doubt to everyone. You never know what some one is living with that you know nothing about.

30. The fact that you read this list makes me feel: Honored. If you made it through all 30 of these it means you care enough to know what it’s like to be in someone’s shoes who has a life no one sees. What you see is what they choose you to see. Know that usually we put on a brave mask and wear it proudly. We want you to know and think of us as the people we are – not the illness that we deal with daily. Know that if we choose to share that journey with you, it is a very private and personal one, and we are assuming you will respect it and us as we deal with it. I hope you understand just a bit more than you did before. Thank you so much for reading! Keepin it real and continuing to “ditch those masks, Christi Campbell ~Dont forget to visit me over at the blogs: Ditching the Masks and  Moms Ft.Wayne, will settle for chocolate

“It is never to late to be what you might have been.” George Eliot

chairi supporting-the-fighters

Katya on Life with P.O.T.S and R.I.S

September 8th, 2014 by Carrie, the Just Mildly Medicated gal

I am always surprised by the connections that I have made through my chronic illness. Katya is one of those connections. I am happy that Katya was willing to share some of her life with *P.O.T.S as many who suffer with the condition are teenage girls. Katya is a 16 year old who has been living life with *dysautonomia for over a year now and I am glad she chose to share some of her story with us during Invisible Illness Awareness Week.

Katya

30 Things About My Invisible Illness You May Not Know

 1. The illness I live with is:

Postural Orthostatic Tachycardia Syndrome, or POTS.  I also have RIS, Radiologically Isolated Syndrome.

2. I was diagnosed with it in the year:

I was diagnosed with POTS at Mayo Hospital in Rochester, MN in the Summer of 2013.  I was diagnosed with Radiologically Isolated Syndrome in January of this year.

3. But I had symptoms since:

Before I was diagnosed with POTS, I had been having symptoms for at least a year.

4. The biggest adjustment I’ve had to make is:

I had to stop going to school last year because between doctors’ visits and medicine adjustment it became too difficult

5. Most people assume:

I choose to be antisocial when in reality I can’t go out or have people over because I’m feeling ill or am so fatigued I can hardly stand up.

6. The hardest part about mornings are:

Waking up to realize that another day of fatigue and debilitation await me when I step out of bed.

7. My favorite medical TV show is:

House M.D.  No doubt about it.  House all the way!

8. A gadget I couldn’t live without is:

My computer.  My darling little computer has helped me distract myself from the grieving of having a chronic illness.  Between Netflix and Amazon Instant Video I twisted the definition of “being social”.  From Downton Abbey to Real Housewives of Orange County, I created my own world when I couldn’t be part of the real one.

9. The hardest part about nights are:

When I lay my head down and begin to think about how I could have pushed harder or what the day could have been like if I wasn’t ill.

10. Each day I take __ pills & vitamins. (No comments, please)

11. Regarding alternative treatments I:

I haven’t tried any alternative treatments.

12. If I had to choose between an invisible illness or visible I would choose:

This is a very tough and emotional question.  At the moment, I choose invisible because I am able to choose who gets to know about my illness and what I am going through.  Invisible illness also limits the amount of pity I would receive from strangers.

13. Regarding working and career:

I’m only 16 and I made most of my spending money through babysitting.  After a couple cases of being on the edge of fainting while trying to watch the children I had to give that up.  I loved the children I use to babysit and no longer get to see them like I use too.

14. People would be surprised to know:

Before I got ill I would run 6 to 10 miles every single day after school.  Running was my passion and my outlet.  I have had trouble finding something to replace it.  I doubt anything ever will.

15. The hardest thing to accept about my new reality has been:

That there is nothing I can do to fix it.  This makes me feel out of control.  It is hard to come to terms with the fact that no matter what you do you can’t change the way you feel.

16. Something I never thought I could do with my illness that I did was:

Go to Disney world with my family.  My dad pushed me in the wheelchair the entire time.  We also got bumped up to the front of the line of every rollercoaster.

17. The commercials about my illness: none

18. Something I really miss doing since I was diagnosed is:

The simple things.  Taking a hot shower (I have heat intolerance).  Going to the grocery store with my mom.  Driving.  Leisurely strolls.  Going to school.

19. It was really hard to have to give up:

The visions and plans I had for my life.

20. A new hobby I have taken up since my diagnosis is:

Collecting sock monkeys.  I take at least one of them on my medical adventures and take a picture of them and put it on facebook to tell my story from time to time.

21. If I could have one day of feeling normal again I would:

Run until I dropped.  I would go to watch my little brother play in his basketball/soccer games (I have missed so many of these).  I would jump up and down and scream and yell without fear of collapsing onto the floor.  I would go shopping with my mom.

22. My illness has taught me:

My illness has shown me how freaking naïve I was before getting ill.  I had no idea what chronically ill even meant.  I could not have even fathomed the pain and suffering that a chronically ill person and their family experience.  I am so blessed and so privileged to be able to relate with such warriors and heroes that are those who battle everyday with chronical illness.

23. Want to know a secret? One thing people say that gets under my skin is:

“I looked online and read that POTS can be cured by exercising.  Have you tried that?”  My response:  “Oh really, well I looked online and saw a picture of you captioned: Dumba**!”

24. But I love it when people:

Say things like, “I don’t know how you do it.”  or “How are you still going?”  It makes me feel like they’re acknowledging that this is a real, physical illness.

25. My favorite motto, scripture, quote that gets me through tough times is:

2 Corinthians 12:9

‘But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.’

There is nothing better than to hear that your pain is not in vain.

26. When someone is diagnosed I’d like to tell them:

Don’t avoid talking about your illness or brush it off as though it isn’t there.  Attempt to accept your illness.  It is never fully possible to completely accept your illness, it just isn’t.  But the more and more you work at it the happier you will be.  Do not let your illness consume you but remember and realize that your illness is a part of you forever.  Don’t fight this fact.

27. Something that has surprised me about living with an illness is:

The majority of people who are also ill or going through difficult situations.  I had no idea of the gigantic amounts of information and nitty gritty gossip I could receive by simply opening up to people about my illness and hurts.  As I began to do this people started to tell me all about their current and past troubles.  Opening up to people and listening to them while they open up to you makes for a much stronger and deeper relationship.

28. The nicest thing someone did for me when I wasn’t feeling well was:

My mother fills my water bottle, makes me food, and massages my feet.  My mom does this on a daily basis.  I still don’t know how she does it.  Many people have brought me flowers, food, and gifts but there is no one who has comforted me and held my hand like my mother.  She is a blessing.

29. I’m involved with Invisible Illness Week because:

I have an invisible illness and Carrie from Just Mildly Medicated asked if I would do a guest post.  I am so honored to be part of this week because it is easy to get cooped up with my illness and forget the many other people dealing with their own.

30. The fact that you read this list makes me feel:

This gives me hope because if you care enough to read this then maybe others will and this will help spread awareness of POTS and Dysautonomia.

fight pots

 

Big thanks to Katya for stopping by during Invisible Illness Week!To learn more about Invisible Illness Week click the link ;)

*Dysautonomia- umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System.

*P.O.T.S – a subset of orthostatic intolerance that is associated with the presence of excessive tachycardia on standing.

An illness by any other name…

September 13th, 2013 by Carrie, the Just Mildly Medicated gal

During Invisible Illness Awareness Week many people bring awareness by filling out the “30 Things about Me and My Illness” questionnaire. For me that was the beginning of my being open about my life with Pure Autonomic Failure, also called Bradbury-Eggleston syndrome, which falls under the umbrella of Dysautonomia and causes an imbalance in each of the bodies involuntary functions.

In the questionnaire people are asked to answer and elaborate on if given a choice would they choose a visible medical issue or an invisible illness. The answers vary from person to person and often times when revisited our answers change. People frustrated with explaining ever changing issues with an invisible illness may think they’d trade for something visible; something clear and inarguable. Others, like me a year ago, were content with invisible feeling a sense of control over inviting people in to know the struggle or not.

This year I found myself on a slightly different version of this question…

If the choice was mine would I chose a different, yet just as debilitating, illness?

For example Pure Autonomic Failure has 2 other ‘sister illnesses’ that are sometimes categorized as Primary Autonomic Failure. The other two medical conditions are Multiple System Atrophy (Shy Drager Syndrome) and Parkinson Disease. Back to the days of my Sesame Street viewing; one of these things is not like the other. One is a household name; the other two are fairly unknown even in the medical community.

Would I trade my illness for one that was equally debilitating but a household name? YES

Please keep in mind I am not comparing the illness per say, more the social awareness of a name.

An illness by any other name…

Michael J Fox has brought Parkinson’s research to a whole new level and is about to bring it into your living room with his new show starting this month. Many people thought Dr. Gregory House did Lupus a disservice by always saying that the diagnosis was in fact never Lupus. What we have to agree on is House made sure everyone knew the word Lupus. Now I am not saying I need a celebrity spokesperson or a TV shows catch phrase, but it sure does help with bringing awareness.

Just like the original question posed in “30 Things about Me and my Illness” my answer may change next year, or even tomorrow.

What about you, would you trade your illness for one people have a basic understanding of or maybe you have a more publicly known illness that you’d trade for something that hasn’t been in the media giving people the assumption they know about it?

30 Things about Me and Dysautonomia 2012

 

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30 Things about me and dysautonomia

October 2nd, 2012 by Carrie, the Just Mildly Medicated gal

Invisible Illness Questionnaire

1.The illness I live with is:
Dysautonomia (dysfunctional autonomic nervous system)  Dysautonomia is different for different people, for me I suffer with Chronic Fatigue, frequent Premature Ventricular Complex, GERD, Long QT syndrome, Inappropriate Sinus Tachycardia and Bradycardia, non-sustained Ventricular Tachycardia and Orthostatic Intolerance. Dysautonomia is considered both a chronic and progressive invisible illness, which means it’s with me for good and can become more impairing. It took a long road to get pointed in the right direction. I owe a lot to The Center for Autonomic Disorders

2. I was diagnosed with it in the year:
2011

3. But I had symptoms since:
2005

4. The biggest adjustment I have had to make is:
I have had times where I’ve been much worse this last year and I have to plan my day down to the details. One of my main conditions is Orthostatic Intolerance, I am basically not that tolerant to being upright so if I overdo things, my heart goes berserk or I have convulsions. I have to rest before and after everything. On a doctor visit day I can’t also go to the grocery store or I will for sure have some type of episode.
Using a cane has also been a huge adjustment; if I have to do something that requires a lot of walking and or standing I am much better off using a cane even though I am not 100% comfortable with it yet.

5. Most people assume:
I would guess that most people know how much I love exercising so they would never think I have a chronic debilitating illness. I am very limited to what I can do, I use a recumbent bike while hooked up to a heart monitor and have started Pilates with an amazing instructor who is also a nurse. I cannot stand up for long without passing out or having severe tachycardia so these are working for me.
In general people assume if you look healthy you are. For people who know I’ve been going through something I would say they assume I have a heart condition when it is actually that my autonomic nervous system is not functioning properly.
Another big assumption is that it must not be too bad because I went to the mall or worked out etc… I have good days, great days even, great weeks at that. Then I am in rough shape for a while. I don’t know ahead of time how it’s going to be or how long it will last but I assure you I do everything I can when I am good.

6. The hardest part about mornings:
The worst is having to start the first wave of medications on an empty stomach (barfaroo) and the kids wanting breakfast right away while I am still light headed and nauseated from meds. It is also very aggravating on Sunday morning when I set up my meds for the week, it takes forever and if I have a convulsions… well it’s a lot like a jigsaw puzzle I didn’t sign up to do.

I took this to show a friend how organized I am

then I did a jigsaw puzzle, or as she called it I had medicinal confetti

7. My favorite medical TV show is:
I used to love House, not a huge medical TV kind of person

8. A gadget I couldn’t live without is:
My IPhone would be my gadget, I am thankful to be chronically ill in a time when I can still have communication and entertainment even when I am stuck at home.
(Yeah Facebook and Words with Friends what would I do without those links to the world??!!)

9. The hardest part about nights:
Waking up with tachycardia or trying to fall asleep with Bradycardia, both are scary feelings.

10. Each day I take:
13 prescription medications (some are the same RX multiple times) and 2 over the counter meds. So that is 105 pills to potentially spill, yes I am still stuck on that. That was a crappy day.

11. Regarding alternative treatments:
I salt load but will need salt tablets soon (barf), I have to try and drink about 80oz of water a day, I have some compression wear for my arms and legs and when other friends with dysautonomia find something that works I give my doc a call. Exercise is so important; I now try to clock some exercise time in even on the bad days.

12. If I had to choose between an invisible illness or visible I would choose:
Invisible, the downfall is definitely harder to diagnose because for a long time doctors thought I was fine because I wasn’t symptomatic at the moment my vitals were taken. As it progressed it became painfully obvious to my doctors. The benefit was I still had time to deal with the diagnosis with my family and decide if and who I wanted to share the information with.

13. Regarding working and career:
I am a stay at home mom and have been since 2003, I volunteer a little less each year and that makes me sad. I loved being in the class room. I always planned on going back to work, I have to say it is harder to imagine what I will do and how I will go about it but I also cannot imagine limiting myself.

14. People would be surprised to know:
One of the big motivators to come all the way out of the ‘invisible closet’ is because I am on the wait list for a cardiac service dog!!!
I think people also would be surprised to know 2 of my 4 kids also have an invisible illness. Oh and my family drove 14 hours for me to go to the Center for Autonomic Disorders… who goes 14 hours to a doctor?

15. The hardest thing to accept about my new reality has been:
I have had a hard time slowing down. My personality and chronic illness don’t go well together. In my head I want to organize, workout hard, volunteer, do projects go to the park and have lunch with friends. Making the choice of what the priority is for that day, and really not even one on some days, can get me down.

16. Something I never thought I could do with my illness that I did was:
I clocked in 116 miles on my recumbent stationary bike for Invisible Illness Week last month!

17. The commercials about my illness:
I have a whole documentary http://youtu.be/8UPMYNkm6Bc  CHANGES: Living with Postural Orthostatic Tachycardia Syndrome. POTS is just one of many was Dysautonomia can surface.

18. Something I really miss doing since I was diagnosed is:
I still miss exercising the way I want to instead of the way my body will tolerate; I miss just walking the dog without wondering if I am risking an episode of non-sustained V Tach. Also going out certain places without fear; like to a concert (which I am planning to do soon) is scary. What if I pass out, what if I have a tachycardia episode it is a lot of worry.

19. It was really hard to have to give up:
Being able to ‘do it all’ in a day. I remember getting the kids ready for school, getting dressed, volunteering, working out, hitting the store making meals and hanging out with friends. It’s a slower pace now and never enough time or energy to do everything I want. I also can’t drive for 6 months after losing consciousness, that’s a LOOOONNNGGG 6 months!

20. A new hobby I have taken up since my diagnosis is:
I wouldn’t say I took them up because of my illness but I try and write as often as I can and I read read read! I love keeping track of my books at Goodreads.com and discussing books with friends.

21. If I could have one day of feeling normal again I would:
Take the little kids to the park and play hard in the morning, have lunch and go shopping with Sierra all afternoon then meet up with my husband and friends for dinner, drinks and dancing!! (I really hope to have a good enough day for all of this soon)

Outside the Doctor’s Office

22. My illness has taught me:
If you feel something is not right with your body and you do not feel you are being heard or given medical information and support that fits how you feel keep looking. Don’t settle. I have also learned no matter how real your illness, no matter how obvious your symptoms someone, and maybe someone you love, will doubt you are really ill.

23. It bothers me when people say:
It bothers me when people ask questions from a place of doubt instead of curiosity.  ‘You can’t be that sick, you exercise so much’ or ‘you were fine last year (last month, last week)’or if I am having a bad day or week saying it’s because ‘You worked out or went shopping etc.. and should have rested when you had a good day.’ For some people I can never win.

24. But I love it when people:
I love it when people ask questions from a place of concern for me or curiosity about Dysautonomia. I also love getting calls, texts and playing Words with Friends, it cheers me up, makes me feel social. (Big props to my WWF peeps) I love a call for coffee or lunch, I love getting out of the house and if I can I will!

25. My favorite motto, scripture, quote that gets me through tough times is:
I did as much research as I could and I took ownership of this illness, because if you don’t take care of your body, where are you going to live?
Karen Duffy

26. When someone is diagnosed I’d like to tell them:
You will find a new normal

27. Something that has surprised me about living with an illness is:
That I am beginning to find a new normal.

28. The nicest thing someone did for me when I wasn’t feeling well was:
I am blessed to have a few.

My best friend having a natural balance to not treat me any differently but cut me some slack.

An old friend taking some time to catch up and be able to be concerned but still make a joke or two that lightened the weight of it all a little.

My husband explaining to me what Dr. Thompson told us; that my fatigue is not the same as when a healthy person is tired and that my body has a need to rest. Then he did the dishes…again

29. I’m involved with Invisible Illness Week because:
Dealing with this alone, for me, is not the option I thought it might have been in the beginning. I want people to know what is happening to me, why I might have to cancel plans and why I have so many limitations. I also want to let people know that Dysautonomia is very real and not many doctors are aware of what it is, or how to treat it. Awareness is crucial.

30. The fact that you are reading this list makes me feel
Validated and supported, really I couldn’t ask for more.