Posts Tagged ‘chronic illness’

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.

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

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

Touring Canine Partners for Life

July 1st, 2014 by Carrie, the Just Mildly Medicated gal

My tour of Canine Partners for Life

Canine Partners 4 Life

 

I have been on a wait list for a service dog trained at Canine Partners for Life for over two years. My wait has been longer than the average person as I am looking for a service dog that can both perform basic mobility tasks and also alert to my abnormal blood pressure and heart rate fluctuations. To add to the details in alerting we also need to have a service dog that is a poodle or low to non-shedding poodle mix, one of my children has an allergy to pet dander.

 

While on the wait list fora service dog, I have had the pleasure of making connections with other people who suffer from Dysautonomia that are partnered with service dogs. I’ve also met recipients for a wide range of disabilities that have received a service dog from Canine Partners for Life (CPL). I assumed that would have normalized the idea of a service dog and better prepared me for my visit to CPL. I am pleased to say my visit left me with a wide range of emotions and none of them were in the realm of normal.

 

We have had many family conversations over the last two years about the differences between a service dog and a pet, but even I was a bit excited when entering and seeing several service dogs in various states of relaxation near their partners’ feet. I have to say that CPL was amazing to my family; here we come in with three children under 11, all of us logically knowing what we are seeing but internally wanting coo over the view. They kept things moving, explaining things to the kids as we went, and answered all of our questions.

 

One of the first things we talked about was positioning and pacing, two things I never really considered before my visit. They had me walk with two dogs to see what my natural pace was and if I preferred the service dog side by side or ahead of me. Turns out I am a bit on the slow side, no real surprise there. I did originally say I would prefer side by side until I actually walked; as it turns out a slight lead was much more natural for me.

 

Here I am walking with Bandit

Walking with Bandit       Walking with Bandit

and this guy is Jasper

walking with Jasper

 

After some walking, which wore me out, we went in to watch an hour of Team Training. Team Training is the three-week course you participate in after you are matched and before you become an official team and head home. The CPL staff was kind enough to bring in a pup still in training an allowed to receive lots of loving from my kids while I sat with my practice dog for the morning, Jasper the black lab.

 

It was wonderful to be given a preview of Team Training and hearing how the recipients were faring after the first few days of working with their new service dogs. Some common concerns were bonding and worrying they would miss an alert thinking the dog was looking for attention. Ironically, while I was just on the outside of this circle of new recipients and their service dogs talking about concerns with alerting, Jasper went from relaxing at my feet to full attention and put his head in my lap. I patted him on the head and told him “down”; he did, but was right back up with his head in my lap. I must admit I was thinking, “Jasper, dude, you’re making me look bad.”

 

Jess, one of the trainers, came and told me that they actually knew Jasper had a tendency to alert. Wow, had I just been alerted? I took my cell phone out because I have a heart rate monitor app on it and tried to refocus on Team Training now that Jasper was back to lounging at my feet. Jess was in his sight now and I could tell he was focused on where she was in the room so I really didn’t think he was paying much mind to me.

 

Boy oh boy, was I surprised when Jasper and the top half of all of is black labness was across my lap! I started the hr monitor knowing I’d be higher than normal mostly due to a blanket of lab on me with gorgeous brown eyes making no qualms about looking me right in the eyes. My hr was in the upper 90’s, a common rate for me, so I chalked Jasper’s lap dive as he was clearly trying to make me look bad. Then all of a sudden the numbers started climbing. Within two minutes I was up to 140. I asked Jasper to sit and I reclined my wheelchair back. Mind you, Jasper was still looking straight at me, he nudged his head in my lap and then my 140 heart rate took a bit of a dive back in to the 90’s. At that point Jasper lay back down and I let the tears fall.

 

I realized that up until that moment I hadn’t truly believed my unpredictable heart rate could be alerted to. I had expressed this concern before to the CPL staff, to which they knowingly reassured me that some service dogs can alert to Autonomic instabilities. I even know people with service dogs that alert to these same issues, they have even written guest posts on this blog, but I had never until that moment believed it for me.

 

Jasper isn’t done with training, and sadly, he wouldn’t work for my family because of my sons’ allergies, but I do believe he will make someone a great partner. As for me, my service dog is out there. Maybe he or she is living with a puppy raiser right now, maybe he or she hasn’t even been born yet, but I have a new faith that I will have a partner just for me.

 

Canine Partners for life charges on a sliding scale. The cost for me when I am matched will be $3,000.oo plus the cost of traveling from Missouri to Pennsylvania and staying for three weeks. We are estimating it being around $5,000.00 for the trip in total. We are hopeful to raise at least the cost of the service dog and in the hopes of raising the cost for the trip in whole. We would be thrilled to raise more than my expenses and have a donation to Canine Partners for life.

 

If you would like to donate towards my service dog fund I have set up a You Care account to support my goals. The donation comes to me personally, and I will give updates here on Just Mildly Medicated and share links on the You Care site as we move forward.

 

 

Want to know more about Canine Partners for Life? Clink this link CPL.

Did you know Diane Sawyer arranged for my service dog? Check it out here.