Body Image...A Few Words

Over the past few months I have noticed that a couple of my favorite bloggers have written about their body image in relation to weight gain/loss. On so many levels I can relate to their struggle with this love /hate relationship with weight as most women in America can. The hardest part is deciding to be healthy (have a healthy BMI) or being accepted by societies standards. This seems like an obvious choice, but it is? Not. Even. Close.

Prior to having my g-tube placed I was commented on all the time about how lucky I was to be thin. Many oggled over my ability to wear a size zero at the age of 25. Yet, at that time I still felt as thought I could slim up a bit, exercise to flatten my stomach a bit more, etc. Fast forward to nearly 5 years of having a g-tube and at a healthy BMI of 21-22, I look back at photos of myself and am dismayed that anyone including myself thought I looked healthy. My hip bones, shoulder bones, elbows, knees all protruded and you could easily count my ribs. Healthy? Nope. It took a huge dive in my health, like emergency intervention, to get me to agree to the g-tube.

Let me be very clear. There are just as many health issues that stem from starvation, malnutrition and being grossly underweight as there is with being overweight or obese.

I am now a size 4-6 and fluctuate between 124-128lbs. I am still in the process of accepting my new body. I have days that I feel fat. I have days that I feel perfect. I have days that I don't even think about it. The best thing I have done to help my perception of my body image is to exercise regularly. I feel happier about the weight gain. I understand on a different level that my body needs fuel and a healthy percentage of fat to muscle ratio to function the way God intended.

When I am at a healthy weight I have more energy which means I can engage in my own life more. I have longer lapses between IV's and hospitalizations. My lung function has increased and become more stable. I can run more than a mile because my body has the physical means to do so because of the proper nutrition. ALL is good!!

I do know one thing, I never want to go back to being a size zero. I never want to go back to feeling absolutely exhausted all the time. I never want to feel as though my body is largely depleted of everything.

Such a tricky topic. Finding the happy spot for each of us entails a different journey for each. For me, finding and focusing on things that bring me joy and are healthy have helped tremendously. Wanting to be active in my life as a new bride was a large piece for me. Then, I added running and started to experience all the ways running has helped me transform my perception about my body. Then, over time all the wonderful health benefits I started to reap; better lung function and better diabetes control to name a few.

I am now in a happy place. There are times when the jeans fit a bit snug and there are times when the jeans are a bit looser, for me this is normal as my body is not one size day after day. Just like the seasons change so does my body. I have found a happy place with this and am willing to work with it. I am sure as I age, I will come to forks in the road that force me through the process of reaccepting my bodies lot in life. I hope that I can do so with grace and dignity and shear appreciation for all the incredible changes my body has sustained over the years and still functions.

I hope we all can someday find our own happy place. Our own form of acceptance. We are all beautifully made and made for a purpose much more important than what the scale or society tells us.

~Doodlin'

It's All About the Routine

My struggle with CFRD (Cystic Fibrosis Related Diabetes) is no secret to those who know me and read this blog. I struggle with diabetes more than I do with my CF. There are few factors that aid in the struggle. I wasn't diagnosed with CFRD until I was 13 or so, whereas I haven't known life without CF. Another aspect that makes diabetes a struggle is that it requires multiple injections a day and numerous finger pokes whereas their is no poking on a daily bases to treat my CF.

I humbly admit that I was far from the model diabetes patient. For many years I did the bare minimum and tried to forget about it. Something changed about 9 years ago, I started to care. I started to see the importance of getting this aspect of my care under control. I began with baby steps so that I didn't overwhelm myself and throwing in the towel. I started to by committing to checking my glucose levels 3 times a day. As this became a routine occurrence each day I added something else. I kept building on this model and I started to see and feel results.

I am a learn the hard way kinda gal. I have to feel the impact before action is taken. It simply isn't enough to hear the statistics or even have the unpleasant symptoms described to me. I have to be affected to change course.

Fast forward to present day me. For the most part I have this diabetes thing under control. I have fit it into my life and it feels rather natural. I have a routine. Routine keeps me healthy. Routine keeps me on track. Because of routine I have learned what bumps me off course and what it takes to get back on course.

Of course, I could do even better. Which I continue to evaluate and make changes as I can handle them.  I have learned a lot from having diabetes. I have learned that diabetes truly requires one to be on top of their care for the immediate present while many of the treatments for CF are to help prevent damage in the future. Meaning, if my blood sugar drops too low I immediately feel the symptoms or worse will need to be rushed to the emergency room, but with CF if I skip a treatment there are no immediate symptoms.

This is why for me having a routine is essential. My routine helps me always know what's going on with my diabetes while being proactive with my CF. My hope is that I can keep my body in as good as healthy at this very moment as well as in the future so that I can be present in life with my family and friends.

A motivating saying I have posted to read every day is ....."Doing all my meds is NOT submission to my CF but rather FREEDOM from it." This is easily transferrable for any illness we struggle with. A routine allows this statement to be true.

Do you thrive in a routine?

~Doodlin'

The Crepe Conundrum

The other night B got home before I did and I had asked him to start "thinking" about what he wanted for dinner. I usually try to meal plan the week before for the upcoming week so that it eliminates the stress of creating dinner each night. Truth be known I don't mind cooking or the clean up thereafter but I really hate trying to "think" of something or creating a meal out of what is in our cupboards. Come on, I know I am not alone in this?!

When I arrived home B had began making "breakfast" for dinner. One of my favorites. We usually do pancakes or waffles with bacon or sausage. But, yesterday he enter a new realm, a realm inwhich I am terrified. Crepes. He had read the instructions on the side of the pancake batter about making crepes. I have never made crepes and its one of those recipes that terrifies me. Crepes just seem so delicate and danty. But there he was just whipping them up like he'd done it his whole life. They were delicious!!

People tell me all the time how brave and stronge they think I am. I assure you that where I am strong and brave I have equal areas of weakness.Your areas of strength might be were I am weakest. Like B, he did not fear the batter and saw that crepe-making was just as easy as pancake-making. I did not see it that way. I was afraid of the crepes. Yes, this is over simplified but is it?

I started thinking about what other things I was afraid of that I really shouldn't be? What wonderful things am I holding myself back from that could easily be hurdled and give great joy?

Still not confident in crepe-making but thankful God gave me B so I could enjoy them at home.

~Doodlin'

Our Anniversary Week: Few Words Lots of Photos!

We are back from 9 days of glorious togetherness. After nearly 5 months of only having one day a week together we capitalized on the fact that our anniversary fell on Labor Day this year. B was able to take 4-days off from work, plus Labor Day, plus the weekend pre and post Labor Day!! We planned a great adventure, something I have never done, yet B grew up doing; backpacking.

We hiked with packs (backpacks load with the necessities of life for a few days) to 3 gorgeous lakes near Sisters, Oregon. 

Me with a 30lb pack on my back; after crossing a creek!!

B, with the heaviest load!

The first day was beautiful. Not too hot or too cold which made hiking relatively easy. Or easier than I had anticipated it being. I just love how every year we have celebrated our anniversary in different ways which has allowed us to see each other in different situations, under different circumstances thus lending to a deeper understanding of each other. B is a natural leader when outdoors and I am a happy follower, the dogs however don't know which direction suits them.

The first day we hiked fairly early in the morning so that we could set up camp and have time to relax before evening set in. 

#1 rule for survival is make camp and get a fire started. My leader taught me this.

After setting up camp, we took advantage of the amazing views. It was so great to not have our cell. phones, laptops, or even a radio. We simply sat on the banks and listened to the sounds of nature. I know this sounds hooky but its really calming and aided to a detox of life's frustrations.

I mean look at this view-

We set up camp just across the lake amongst the patch of trees.

Night fall sets in much earlier it seems out in the wild, probably because there are not lights to ward it off. So, I took to the tent to get cozy and do my nebulizer treatments. Yep, CF care doesn't stop even in the wild thanks to my portable battery operated compressor. I forwent the feeding tube feedings because I only do it 3-4 times a week and used the days camping as my off days. It should be noted that while in the tent I had ridiculously crazy hair due the static.

The first night was cold. We even each had a dog in the sleeping bag with us and we all were still chilly. Probably the location and altitude we were at.

#2 rule for survival is that snuggling close is essential for warmth. My leader taught me that.

Needless to say, we all were thrilled for the morning sunshine!

After letting the sun warm our bones, we packed up camp and headed to the second lake. For which we completely forgot to take pictures of. But I can assure you it was just as beautiful but also the smallest in the chain of three. The second lake was not far from the first so we hung out for a bit and continued on the third and final lake.

Once we got to the final lake we set up camp once again, gathered wood for the evening fire. The fire was the only way we ate. We shopped at  TJ's for dried foods that could easy be rehydrated with boiling water. It worked out great because dehydrated food is light when carrying everything in one's pack. We had oatmeal each morning, with hot tea. Had some indian fare with naan for dinner one night, mac n cheese another and of course hot coco. These types of foods were tasty yet easy to prepare with some hot water. We also had things like energy bars, crackers, etc. We used a water pump (very light weight) to get our drinking water from the lake. That water is naturally so refreshing, I actually am missing it. 

This entire experience was refreshing for my soul. The quietness, the calmness, the majesty of it all was surreal. I think most who have chronic illnesses and rely heavily on modern conveniences like electricity or running water to maintain health are afraid to do such things. I was. What if I got sick out in the middle of no where. What if, what if. I prepared as best as possible, had just visited with my doctors and took the leap. I am so glad I did. I actually wish the battery life in the portable compressor lasted longer so we could have spend some more time out there. I packed insulin and the neb treatments, they were kept cold by having them in tupper ware containers and placed in the lake (weighted down so they didn't float away). Then while hiking filling a water bottle with the cold lake water to keep the temperature down. In the end, it worked out wonderfully and I can't wait to explore more of our beautiful state this way. 

We were to the far left of the Three Sisters at the bottom of the far left ridge that has just a dusting of snow!

Happy 6th year to us. Each year presents new challenges and new accomplishments; both collectively and individually. I am so glad God placed us together to enjoy this journey with. B, you make me a better person, you gently push me to reach new heights, you allow me room to grow and I look forward to many more years with you. Together we can do anything, this I am sure of!

After backpacking we drove into Bend to shower at Gregor's (my bestie). Visited with her a bit and then headed to spend a day with my Nana. Such a great week. Oh, yes B wore the same cloths for 3 days, the only downside of the whole week :-)

~Doodlin'

CF Clinic Update

Last Tuesday was CF Clinic day for me. The verdict was both favorable and unfavorable.

However, before I go into all the details I just want to publicly announce (again!) how amazing my care team is. I could not be in such great health without them. They are some of my biggest supporters and they always tell me the truth; good, bad or indifferent. They have helped me navigate my insurance company when I was single, fabulous and broke. They have gently guided me thru some of the hardest years yet in my life. They have been a source of support for B, to help him understand the complexities of this disease and to offer words of wisdom when he most needed them. The folks who will take their places upon their retirement will have some very large shoes to fill. Just saying!

The unfavorable:

Let's just get it over with it. I have lost weight. Even with the dang feeding tube. Enough weight to raise a few eyebrows. I hate scales. I hate how so many live their lives as slaves to the number and how so many wrap their self-worth up in what the meter reads, so we don't have one in our home. Until Saturday. Ugh! However, I knew I had dropped a pound or two just by the way my clothing was fitting lately but not nearly 10 lbs. That is a lot for me. The worst part is putting those pounds back on is an upward hill to climb. Yes, I love food. But I hate doing anything that feels like a job and consuming 3500 calories daily becomes a job or worse a chore. 3500 a day will only help me maintain, therefore, I need to find ways to throw in a few more calories to recooperate the lost weight. I suppose I could simply just do the feeding tube more frequently or all day for that matter, but the goal is either use it only to supplement what I eat or to allow myself enough time to "bulk up" thru the feedings and be able to sustain a healthy weight by eating alone and remove the g-tube, or toobie (a cute little wee-one used this nickname). Well, I don't think either of those options will be occurring anytime soon. Instead, I will be adding more supplements to my real food and increasing the calorie intake (nearly 2000 calories from 1500) per feeding tube cycle. This also means adjustments to my insulin and digestive enzymes because of the increase. Fun, fun!!

The favorable:

PFT's were again astoundingly awesome. Awesome for me that is. FEV1 was 79 (normal: 80-120). There are other numbers that are looked at but I'll save you some time  and give the synopsis; my lungs are doing well. They are actually improving, at least from what the numbers tell us. After the Pulmonologist gave me my print out of my results I had a few folks come in and ask me what my "secret" was and my only explanation is the running and being complaint with treatments. Running requires usage of the lungs and therefore they are worked really hard while running. I have the Vest to help on the days I don't run but I am telling you its the running. I can feel the difference. I move more mucus during and after running then by doing the Vest. The Vest moves some mucus, but those pesky plugs way down in the lung come up more frequently with running. This gives me the ability to take deeper and deeper breaths and the medication from the nebulizer treatments can then get deeper and deeper to help prevent damage and maybe even allow a small window for healing and/or rebuilding of healthy tissue. I don't know but I know running is working. It took nearly a year of running to see any difference in my PFT's. So, CFer's don't give up, it takes some time.

I'll leave you with a video of the actual PFT session that I scored my 79 on.

~Doodlin'

My Suffering Has a Name: PTSD

At the CFRI Conference the schedule was packed with lecture sessions and networking. So, much so that you really had to picked which lectures interested you most and attend only those. There was no way to attend them all. There were two lectures that I felt very passionate about hearing; 1)PTSD and 2)Women with CF are Having Babies.

The one of most value to me after participating in the lecture was this idea that PTSD existed in parents with individuals suffering from chronic illnesses like CF. But more than that how I related to every. single. symptom. of PTSD. Heather Walter PhD, Director of Graduate Studies at The School of Communication, The University of Akron in Akron, Ohio who has a daughter with CF had read an article, Invisible Patient: Post Traumatic Stress Disorder in Parents of Individual with Cystic Fibrosis. (I encourage you to read the full article for further clarification.)

As she made her way thru the article she was astounded by how the article validated all the feelings she had since her daughter's diagnoses. The article focused really on the parents of those with CF and how the parents are often experiencing symptoms of PTSD such as re-experiencing, avoidance and arousal.

As I sat on the edge of my seat listening to her explain what each symptom was I was nearly moved to tears. She explained re-experiencing to include intrusive recollections and psychological distress. Avoidance includes selecting to make conscious or unconscious choices to avoid information or not to do some things. It also includes emotional numbness. Arousal includes hyper-vigilance, anxiety, irritability, anger, guilt, self destructive behavior and insomnia.

Wow.

I have been as honest on this blog about my journey with depression, loss, anger, self destructive behavior and even attempting to commit suicide as I could possibly bare to be. This is so real. The pain is so deep.

For so long I have struggled with a deep depression. Often times I was able to control it, to get a grip and function normally but my goodness there have been days, weeks and out-right long periods of time that I felt so alone. So misunderstood. Unheard. Many just say "pull up your boot straps girl its never going to change" or just diagnose it as depression, which part of it is. However, depression is not all of it. Anti-depressants doesn't help all of it. Because CF at this point is not going away.

As I continue this life with CF I am re-experiencing often times multiple times a year psychological distress. The things or events that have been traumatic I get to relive over and over. I have and do avoid information and/or things that I need to do in order to simply stay alive. My anxiety at times is beyond rational, I have issues with anger and have taken anger management classes to help control it and of course the self destructive behavior in arousal. I am beyond overwhelmed.

After Mrs. Walter ended her lecture I hurried up to exit the conference room in hopes to catch up with her as I wanted to talk to her more about PTSD, but from the patients perspective. You know us CFer's who are in the thick of this mud. She was awesome and we both agreed that there needs to be more conversations about this, more open dialogue for both parents and patients in the early years. So, that the medical teams can be informed that this is a real issue for some. So, that those who recognize these symptoms in themselves may be helped by simple self care; like rest, exercise, friends, family and avoiding destructive behaviors. The fact of the matter is that many think of PTSD in relation to post war trauma or rape victims, but it is present as a response to many other life events. PTSD can be just an episode or brought on by a new event that triggers them such as having a PICC line placed or a hospitalization.

Later on as the conference began to come to an end a woman pulled me aside. Asked me if I felt comfortable talking about my journey with depression. I was so glad she reached out. She is a mother of a child with CF who like me has struggled in this area greatly. After the conversation, a few tears from us both and a promise to stay in touch it left my mind whirling. In fact, I have been consumed by the fact that if the two of us (this women's child and I) have struggled so much I am willing to bet there are others out there. Who are at their wits end or nearly there.

Depression and PTSD are linked and often go hand-in-hand. I have been pouring over every piece of information about both depression and PTSD I can find. While I feel like I am currently in a good place with minor episodes of depression from time to time, I can't begin to explain how alone I felt during my teenage and early twenties, when I believe I suffered the most. I don't want anyone else to be alone. I want them to know that they can come out happy, fulfilled and loved.

I am determined now more than ever to be a voice. I don't know where this path will lead me but I do know that this fight should not be done alone in silence where the darkness can creep in. The suicide rate in young adults is high enough and I am thankful I didn't become apart of those numbers. We as a CF/Chronic Illness community need to be diligent in diagnosing this and finding ways to help treat it because it is a life-long battle.

This conversation is simply beginning.

~Doodlin'

CFRI Conference

Two weekends ago I had the greatest privilege of attending the 25th Annual CFRI Conference in San Francisco, California. I went as a representative of my CF care centers Patient and Family Advisory Committee.

This years conference was titled; 'Facing CF Together with Confidence: Connecting Families, Care Teams and Scientists.' The conference is such a valuable opportunity for which I am beyond grateful to have had. It brings people together to share the latest information about CF treatment, research and services. Speakers come from across the country and from Canada to update us on clinical developments, ongoing research, and new directions for CF care.

I have to admit I was a bit terrified to attend. I was unsure how I might react to information that was less than favorable. That I would be an emotional wreak, unable to put an intelligent sentence together and thus unapproachable. But I surprised myself. I held it together, well, most of the time. I spoke with people from all different walks of life, each connected to CF in a different way. Some were parents striving to understand how best to help their child. Some were CF patients who were attending for multiple reasons; networking, getting the last information and simply to connect with those battling this disease along side them. Some were researchers, scientists and physicians all trying to find a why to help us, to give us a better chance at survival, to help cure this devastating disease.

I traveled alone this year and was hesitant to begin the first conversation upon arrival. I didn't want to offend anyone, I didn't want to be intrusive and mostly didn't want to seem over zealous or needy. There were many booths from many different companies who service CF care. I began by going to each booth, learning about their products and getting tons of awesome free stuff.

I attended the orientation meeting and met some friends, in fact, from orientation we went out to "network" at which point I meet more folks. The relationships formed almost instantly. There is an unspoken understanding. No need to example anything. Support in the form I have never known. Ever. I get weepy just writing that.

Probably the most amazing part for me is that I was one of the youngest CF'ers in attendance. Many are in their 40's, 50's and late 60's. I have heard of these people, these mythical beings who are some how living into old age, but never have I had the pleasure of laying eyes on them. Probably one of the most inspiring moments in my life. Seeing these people who are my grandmothers age living and thriving with CF. LIVING and THRIVING. This changes the game for me. Seeing with my very eyes that this could be me. ME. OLD. GRAY HAIR.  Now, I am sure that as your reading this your thinking; yes, Kari, that could be you, why would you think anything else? Because I have meet more people who have died than I have who are reaching 40+ years. Because this disease is still consuming young people at unacceptable rates. Because the medical community and research community are working day and night to slow the progression and find a cure. So, for me to witness this. To meet them. To speak with them is beyond motivational. It is beyond hope.

I am thrilled to be part of this community. I hate the suffering CF imposes but the people who are facing this battle with me are truly remarkable.

I attended a few sessions that different speakers were touching on and two have changed my life. No two ways about that; changed it forever. I am still wrapping my head and heart around the information and will share when I can put the thoughts into a comprehendible post.

~Doodlin'