Archive for the ‘Chronic Illness’ Category

Fitness with a chronic illness

February 19th, 2016 by Carrie, the Just Mildly Medicated gal

Fitness with a chronic illness, I didn’t think that was an option!

I took almost a year off from Just Mildly Medicated. I posted occasionally on the FaceBook page and kept active on Instagram, but not the blog. I’m not sure you missed me, sometimes when someone stops showing up that happens and it’s okay. I am going to be back. There are multiple reasons I am coming back, mostly because I still need to share my journey.

When I left you I had started cardiac rehab. I was a reluctant participant at the beginning and was frustrated when I would really try only to be hailed down by a nurse and told my heart rate was too high and slow down, but I kept showing up. In my last post I said this to you on the concept of exercise making me all better.

“Unfortunately eating mostly whole foods, exercising, and loving the heck out of me, as well as everyone around me, is not going to cure any of my medical issues. I’d be wary of people who claim any differently, and they’re out there. My own cardiologist is convinced cardiac rehab is just going to zap my autonomic system back online. The truth is I am just trying to work WITH my body, and its issues, instead of fighting my body or hating it.”

That is all still holding very true. I am happy to report that I am still working out just about every day. If you have been following on Instagram you’ve seen the time I am putting into this. Here is a before and after. The blue dress photo was from March, pretty much when I disappeared from the blog-o-sphere, the pink top is from a few weeks ago.

March 2015 January 2016

March 2015                       January 2016

No, working out is not going to fix chronic illnesses that are not after effects of poor health choices. Yes, working out can make you stronger and more secure… and I mean literally more structurally sound. I wasn’t doing myself any favors, physically or mentally, by being afraid of moving. Starting was so slow it was nearly embarrassing. Who am I kidding, it was embarrassing, but progress was made.

Is my blood pressure not dropping from Orthostatic Hypotension? Well, yes, but less frequently and the strength I now have in my muscles is very helpful in keeping me up a little longer and getting to the ground slowly. Is my heart rate normal now instead of jumping all around when my I stand up (POTS)?  It can still be unpredictable but the work I have put in has made the overall time for it to return to normal much shorter and overall it happens less often.

Am I saying working out will “fix” you? No, because truth be told it just isn’t. Am I saying working out can help you become physically and mental stronger? YES, yes I am.

I believe this so much that I am currently enrolled at the National Academy of Sports Medicine so that I am able to help others by being a personal trainer. My local gym has shown specific interest in my progress physically and throughout my course. They are excited to potentially have someone on their staff who, quite literally understands, what it is like to balance health and illness.

It isn’t often that I am all positive mushy mushy, but exercise has made a huge positive impact and I just want to pay the fitness forward. If you have been thinking about trying cardiac rehab I urge you to go, it literally changed my life.

Hey, lets connect on Facebook  <~ just click it

and I am active on Instagram <~just click it

Twitter is beyond me so we’ll just skip that one

this Dysautonomia gal is a Work in Progress

April 24th, 2015 by Carrie, the Just Mildly Medicated gal

A work in progress, this Dysautonomia gal is working hard towards the progress.

We’ll call this work in progress Eat, Exercise, Love…

Unfortunately eating mostly whole foods, exercising, and loving the heck out of me as well as everyone around me is not going to cure any of my medical issues. I’d be wary of people who claim any differently, and they’re out there. My own cardiologist is convinced cardiac rehab is just going to zap my autonomic system back online. The truth is I am just trying to work WITH my body, and it’s issues, instead of fighting my body or hating it.

After being diagnosed with Dysautonomia (dysfunction of the autonomic nervous system) which impacted pretty much my entire body I started seeing my body as separate from ME, after all it was the uncooperative enemy that began holding me back from doing what I wanted. How are you supposed to embrace the thing weighing you down? How can you treat your body well when you’re mad at it? I don’t really know how yet as we are just starting to get on a good foot in this relationship but I am hoping for positive things.

So the goals:

behappy

EAT

Eat mostly whole foods and avoid processed foods with too many chemicals to name, chill on the snacking, and keep track of what is going in my body. I have been surprised and how much and how quickly my diet changed when I was holding myself accountable for what I was eating. Working within restrictions of a Gastroparesis friendly diet and coming a bit closer to hitting those nutritional needs and losing the empty high calorie junk has eased some nausea, helped with a few pounds, and I will admit to having a bit more energy.

(Gastroparesis is a partial paralysis of the stomach which causes poor digestion, malnutrition, nausea, and vomiting. I’ll also add that I am NOT in a “flare” meaning I am not at a point where those symptoms are acute. When they are acute it will greatly impact what I am able to eat and how much.)

EXERCISE

If you’ve been around you’ll know I am in cardiac rehab, and I love it. Yes, I am there because a cardiologist thinks with some conditioning my autonomic nervous system will just decide to function normally. I do believe you can do many things to strengthen your body to help alleviate symptoms but unless you have dysautonomia truly due to deconditiong this theory makes little sense.  Luckily I have other doctors who understand the condition better but I also decided when else could I work out in a controlled environment with nursing staff right there to monitor me… my insurance covers it so I see it as amazing personal trainer time.

As I am exercising more and gaining strength and confidence in my body I am willing to try more. I am doing things like walking on completely flat surfaces for about 10 minutes at a time, that was something that 2 months ago I didn’t trust my body to do. I had passed out too many times from my autonomic system causing my heart rate to sky-rocket and my blood pressure to plummet to trust my body at all. Those abnormal responses are still happening I am just doing better at listening to my body and either going slower, waiting it out, or giving my body the break it needs… but then I am trying again.

I even did a yoga session today! Something I have said for years that I can’t do because of the postural changes. As I am getting stronger I am finding I can do it, it’s just at my pace and not someone else’s. My pace is slow, much slower than I would like, but it is time to accept I am not racing anyone, this is about me.

LOVE

As my body responds to my new ever challenging demands I am finding a better relationship. I can’t say I see my body and ME as a united front yet. We are learning to trust each other, a little dance of give and take. When I ask something new of my body, like yoga today, and it tries I am proud. When my body starts to get dizzy and over worked, like yoga today, I am trying to give it respect instead of frustration and anger. Total work in progress. 

As these changes are happening in me I am also thinking about the love outside of me. I have such an amazing supportive partner who has been a patient caregiver even when at times I know it had to be scary and frustrating. My kids more often than not chose encouragement over frustration at my limitations. For all of my crazy doctor patient dysfunction I do have a team of doctors who understand my condition and are willing to really take the time to be sure I am at the best I can be. My nurses, oh how I love the nurses involved in my care. My friends, both from way back to new ones, I am amazed at the understanding and compassion that comes from them. I am not usually an overly mushy person but I need to be sure these people really know what that means to me.

everyday

 

Are you a work in progress? What are you working on?

Did you miss about my starting Cardiac Rehab? <~ click it

 

Cardiac Rehab and Dysautonomia

April 10th, 2015 by Carrie, the Just Mildly Medicated gal

Cardiac Rehab and Dysautonomia

Exercising with Dysautonomia can be tricky. Dysautonomia literally means dysfunctional autonomic nervous system. Your autonomic system is responsible for everything your body is busy doing that you don’t have to give any thought to. You can thank your autonomic system for handling things such as digestion, temperature regulation, heart rate, and blood pressure. When your autonomic system decides to slack off, or be flat out non-compliant, exercise can be difficult.

In just standing, let alone exercise, you’re body is working overtime to try and keep your blood pressure, heart rate, and oxygen levels appropriate. When your body is flat out non-compliant you struggle with an abnormal cardiovascular response to just about everything.  This puts you in a category of people who are both considered orthostatic and exercise intolerant as well as in need of an exercise program. You know, because life isn’t hard enough.

Most specialists that work with Dysautonomia patients advise a recumbent exercise plan along with medication, hydration, and salt loading to help combat the roller coaster of symptoms. I personally feel the most balanced in my treatment plan when I am following all of the mentioned aspects, but can admit hopping on and off the exercise bandwagon and due to my inconsistency I wasn’t seeing much in the way of results.

During a recent visit with a cardiologist I was told I needed to safely up my game. I’ve used a recumbent bike at home and during good months could average anywhere from 20 to 60 minutes 3 to 5 days a week. Truth was it just wasn’t consistent, let alone that the resistance wasn’t high enough for a challenge and my body was used to that particular exercise. When the cardiologist said she thought cardiac rehab would be a good fit for me I jumped at it.

Cardiac rehab for the Dysautonomia patient is a safe way to start or enhance a work out plan safely while having your oxygen level, heart rate, and blood pressure monitored by nurses. You’ll also have access to recumbent equipment not found at most gym facilities. The truth is you may complete the entire program and have little to no improvement in your cardiovascular response to exercise but that doesn’t mean it isn’t helping.

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recumbent steppers and recumbent elipticals

 

Moderate intensity exercise for at least 30 minutes 5 days a week is recommend for the majority of people, including those with a chronic illness. A regular exercise program helps as a preventative measure for many health issues, improves mental health, and promotes a positive self esteem. If your cardiologist agrees that cardiac rehab is a good idea for you and your insurance approves your plan you’ll be ready to get started.

My Cardiac Rehab Suggestions:

The nurse will share the doctors approved plan, if you have concerns about this plan in any way speak up. It is not recommended for most Dysautonomia patients to exercise upright. Other than a walking test done to have a strip from the ECG of my heart rate and rhythm that was under 5 minutes I have not done anything upright in the first month that I have participated in cardiac rehab. If you are guided to warm up at a treadmill please tell them you have orthostatic issues, you’ll be shown several recumbent options.

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Have your music ready. Most people enjoy working out more if they have music they like. I use an app on my iPhone called Pandora and set of ear buds. They will usually have a few TVs and headphones available that you can borrow there as well.

You’ll have a goal, mine was 30 minutes of moderate cardio. If you’re not done don’t be done. This is a unique opportunity to be monitored during different types of exercise. There will usually be everything from weight machines, balance balls, and free weights, tell the nurse you’d like to be shown how to use them properly and also ask them to let you know how your body responds. I have found that I love working out with weights, be willing to try something new. Now that I am told when my heart rate is too high I and can lower the weights and add extra reps to get the same benefit in a way that works better for me.

Don’t be discouraged if you don’t meet your given goal, have to take the rest of the day off from doing much else, or it’s just harder than you had hoped. You aren’t in competition with anyone except yourself. The goal should be to become a stronger and healthier you. This happens in small ways that add up over time.

abs

Know how many sessions you have and plan accordingly. The idea is to create a new normal, something to continue after cardiac rehab. I had 36 sessions and decided to go 2 times a week and have developed alternate workout plans to do at home so that I am working out 5 to 6 days a week.

Don’t go on a diet, but do consider changes you can make to your diet. The idea is for this work to pay off and the last thing you want to do is come home from working hard and sabotage all that effort.

this is my new baby  bicep muscle

this is my new baby
bicep muscle

Want to follow more of my exercise efforts?

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Scrambled Egg Muffins – A Gastroparesis Friendly Food!

February 20th, 2015 by Carrie, the Just Mildly Medicated gal

Scrambled Eggs Muffins (Yeah for easy Gastroparesis friendly foods!)

I am not reinventing the wheel here, this recipe has been done many times over, Martha Stewart even had it on her show a million years ago. It is however new at the Just Mildly Medicated house and I wanted to share it.

Many people with autonomic issues deal with Gastroparesis, Gastroparesis is a motility disorder where part of your stomach in paralyzed making it harder to digest food properly. Three of the six of us in my crew deal with Gastroparesis and one of them also has Celiac Disease. Needless to say finding easy meals that are also easy to tolerate is always a plus.

Eggs can be a go to food for those with Gastroparesis, but I am no super mom and am not making scrambled eggs for breakfast everyday. So when I saw the idea of making them in a muffin tin, giving us multiple servings to last a few days while only having to make them once, I was excited.

I grabbed the closest kids and said “Let’s try something” and they are willing to do anything in the kitchen (as long as it doesn’t involve any actual cleaning).

This is crazy easy!

Preheat oven to 400 degrees and spray a baking sheet with nonstick cooking spray

Eggs (we used a dozen)

milk (we used skim and I just eye ball it like I would for scrambled eggs)

cheese, ham, red pepper, literally anything you’d like to add!!

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I had cheese and ham on hand so that what we went with.

crack them eggs and add some milk, I put the mixers to work…

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Then I put some in each muffin tin and allowed the kids to add the extras

We did a row of cheese, a row of ham, and a row of ham and cheese ;)

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Then put them in the oven for about 12 to 15 minutes.

You can eat them right away or put them in a zip lock bag and then each morning I wrap them in a paper towel and pop them in the microwave (mine takes about 45 seconds).

Lesson learned… label this zip lock with what type of egg muffin is inside hahaha

These two kiddos are on their second scrambled egg muffin which means SUCCESS!

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I’m baaack

January 28th, 2015 by Carrie, the Just Mildly Medicated gal

So there was this one mildly medicated chick that used to have a blog about life with Dysautonomia…

and then she disappeared from the blogosphere…

I have been flattered and surprised by the number of people who have come out of the wood work that messaged and emailed me asking what the heck was going on, where did the Just Mildly Medicated girl go?

where are you

 

I forgot that others were sharing in my health journey… (wow, that sounds corny)

I second guessed my value; I wondered if I really had anything else worthwhile to write about?

I doubted you were even still out there…

I questioned if I had any business writing at all.

 

Now don’t get worried, I wasn’t rocking in a corner crying. I was just distracted and discouraged from writing in every way, shape, and form. I am happy to say I am back in the swing of things and have some things to share. I have found some gastroparesis friendly foods that I want to pass on in the hopes they work for others as well, I did get a new diagnosis that I’ll be writing about, and I also am starting a new therapy/rehab that I hope will improve my quality of life.

I do have things to share and I am back to sharing.

Love,

The Just Mildly Medicated gal

150x186 jmm gal

 

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I am over on Instagram here 

I forgot my meds…

September 24th, 2014 by Carrie, the Just Mildly Medicated gal

I forgot my meds, a lot of days in a row… okay, a lot of weeks in a row…

I think most people on a long term prescription routine fall off the wagon, be it a Just Mildly Medicated gal juggling many prescriptions or someone who has one steady nagging medication to take daily forevermore.  This is about the summer when I was a Medical Radical and Pharmaceutical Nonconformist, okay so really it was more that I was just a pissy slacker.

radical

Many people make this choice; they get tired of paying for the medications, taking the medications, feeling the side effects of the medications, and not so much the original alleviation the medication was supposed to provide. They decide it isn’t working for them and discuss it with their doctor or decide to consult Google on if it is a medication that can just be stopped. (Come on, we’ve all consulted Google)

That is not this story…

To tell the story we must go back, way back… okay, it wasn’t that far back. Just take my word that I am super organized and took my meds exactly as I was supposed to, I handled my IV therapy like a pro and was hooked up (or flushed my port) at the same every day. I was also following a gastroparesis friendly diet (which I loathed), salt loading, and drinking plenty of fluids. I still didn’t feel “well” and I was a bit bitter about that, I mean who wouldn’t be?

When I spent a week at Mayo in Rochester, MN I was off meds and IV fluids for the duration. (I did stay on a few that the doctors at Mayo thought would not be good to just stop, but they were few). I actually didn’t feel all that much different. I kept waiting to come crashing down, but I felt my normal episodes and tested just about the same as before I started taking all of my medications.

It was talked about again that because of the gastroparesis (partial paralysis of the stomach linked with autonomic dysfunction) some of my meds may not be absorbing properly and I may not be receiving the benefit of them. My immediate thought was, “Then why in the hell am I taking them?!”

I tuned out on the last five minutes of the Mayo Clinic doctor speaking to me as Phil Collins came to me and sang I Don’t Care Anymore, and when Phil Collins comes to sing to you, well, you listen.

Phil also came to me and sang Sussudeo at the Cardiologist once… he and I have a connection… but I digress.

I wouldn’t say I was in a depression over the topic of being Just Mildly Medicated but apparently a seed of doubt and stubborn rebellion was planted. I think of it as a period of time that I tried to give my illness the middle finger as a treatment plan to see how that worked out.

When I came home I continuously “forgot” certain meds and became very lackadaisy with my IV treatments (lackadaisy means lazy and uncaring for any non-southern folk).  A routine that I once took very serious shifted and became a series of forgetting and not being very concerned about it. It wasn’t until months ater that a real decline in my health was undeniable.

My flares were lasting longer and happening more frequently, I still didn’t attribute it to the fact I hadn’t been taking half of the medications I was supposed to. I honestly didn’t even consider it. I can’t believe that it didn’t put a spark under me to get focused on my treatment plan, but I really didn’t admit to myself how off track I was.

It wasn’t until an episode that caught the attention of both my nurse and my husband.  In two separate conversations my husband pointed out that I’ve not been doing well and something needed to be done about it. My nurse knew my blood pressure readings had been odd and my weight changing. They both could track it to the last month and a half. That would be a month after my new routine of forgetting my meds.

I had to acknowledge to them, and myself, that I hadn’t been taking my medications as prescribed and I hadn’t stayed on top of my IV therapy; that this decline was likely of my own doing. Not a conscious choice to abandon my plan, just a gradual shift off the beaten treatment path.

meds

Dysautonomia is a chronic and progressive illness. This means it is forever and is likely to become worse over time. When taking all of my meds and IV therapy options as prescribed I still have episodes and I don’t feel “well”. However my treatment plan is important. It is designed to give me the most personal freedom over my illness that currently is offered.

I am back on track now and hope to be feeling an improvement very soon.

Love,

The reformed Medical Radical and Pharmaceutical Nonconformist Just Mildly Medicated gal <3

Keep Calm and Take your Meds

 

Want to check out when I took a tour of Canine Partners for Life for the service dog I am on a wait list for?

How about when Phil was buzzing Sussudio in my ear?

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

Red Band Society (IMO)

September 18th, 2014 by Carrie, the Just Mildly Medicated gal

The Red Band Society is a new show that premiered September 17th on Fox about a group of teenagers who are currently in a pediatric ward of a hospital. There seems to be a heavy emphasis on them “living” there when in fact the entire first season covers a 3 week period.

The show has mixed reviews at best and I can see why.  The pilots focus seemed to be on the preexisting relationships as well as the ones newly forming. The medical issues seemed very secondary, bordering a sympathy pull at best. They portray varying ages and conditions, which is a plus. Though one of the kids is prepping for surgery the others are in various stages of hanging out.

There are some things that I had a hard time getting over. Things like if the kids were well enough to be roaming the hospital, taking off in a doctors car, and having a party, all in the same afternoon I can’t help but feel the reality is they would be out-patient. On the flip side it was one day and on any given day yes, they could all be there.

I’ve been admitted for 2 weeks and never interacted with another patient other than surface smiles and light conversation if we were in the same area getting ready for a similar test.

Honestly when I’ve been admitted, often after passing out like our lovely snarky cheerleader (whom I do actually love) I haven’t been much able to get up from the bed let alone make friends. They slap a yellow Fall Risk bracelet on me, start an IV and monitors and I have to call the nurse every time I need to go to the bathroom.

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My feelings are incredibly mixed. Do I think they are scratching the surface of what patients actually go through? Not yet, not even close, I am not even sure if that is the intention. I do feel like they are showing that kids suffering with illness have the same everyday teen issues like crushes, kisses, friendships, and family drama; in that sense it does help normalize the reality that with illness still comes life.

They do nail the point that hospitals do become normal for kids with medical issues and those kids can have fun there. My son isn’t admitted long term but his gastroparesis is being monitored weekly with a full day of tests once a week. We check in Friday morning at 9 and go home after 5, that is our current norm. There is down time between tests and he plays.

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These were all taken the same day but only the fun picture seems to be what the show is interested in at this point.

Now here is where I change my mind.

It’s a show, it isn’t a documentary on life in a pediatric ward.

Maybe they will show more of a day in the life of each of the kids to include more of their life with a medical issue,  maybe it will stay teen drama with dark medical stuff in the back ground of awesomely decorated rooms (I mean seriously, the rooms are a bit too awesome). I am going to watch the first season to see.

Did you watch? Are you going to keep watching?

Red Band Society on Fox

 

 

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

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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

Poop? Well I never!

August 28th, 2014 by Carrie, the Just Mildly Medicated gal

I always said I’d never write a post about poop. I have read a lot of bloggers that have, but no way not me…

Poop you say?

Well yesterday changed my mind.

Many people with chronic illnesses suffer from constipation. Things like chronic dehydration and frequent pain medication can be contributors. There are illnesses that play a part in constipation, gastroparesis is a partial paralysis of the stomach so things don’t quite get a move on the way that they should.

Now I know many people are on the other side of the poop pendulum but this is my story and we will get to all that moves quickly later… bear with me… oh, the poop puns!

In this story you have to understand that we’re talking about constipation in a way that when my nurse comes and asks me weekly when the last time I went poop was I give her vague answers because I honestly have no idea when the last time was. She now knows this about me and laughs when I say, “Oh, I’m sure it was about 3 days ago.”

So imagine my surprise when I had a strange sensation in my stomach that I did not recognize at first, then I paused and said out-loud, because I was home alone and apparently talk to myself…

southern b

Then my entire abdominal area cramped in a way that made me sorry for all the times I mocked the show ‘Pregnant and Didn’t Know It’ as I was sure I could be about to give birth to something, something evil for sure. Then my entire lower gastrointestinal system said,

“You know how you are not supposed to eat all the stuff you’ve been eating lately because you have gastroparesis…  

Here is your pay back lady!”

My lower gastrointestinal system sounds like a old school TV wrestling announcer too, in case you reading it and need to place the voice. So there I was home alone and crying in the bathroom, in the clutches of an evil wrestling announcer who was causing me so much pain. My insides quivered, contracted, and made noises that made me afraid of my own body.

I was promising all kinds of things, “I’ll stay on broth for two days, no solid food, I swear.” My promises were for nothing. My old school TV wrestling announcer gastrointestinal system was set to punish me for my crimes. I even swore I’d go to church, I figured I would need to anyway to book an exorcism.

Thirty minutes, several empty promises, some sweat and tears, about three pounds, and an additional few minutes of resting on the cold bathroom floor and I was able to leave the room of death and made it to the couch and all I could say was

the vapors