Muscle Memory

Three weeks ago, I was walking down one of the sky walks at the Cleveland Clinic, with a friend who was so kind to go with me. I had just finished one appointment and I was headed to the next. We weren't in too much of a hurry as I had time between the appointments. This particular Sky-walks felt like it was half a mile long. As we were walking, I could feel the presence of someone coming up quickly behind me. Soon after my friend made a comment about the speed at which we were walking. I realized I had sped up to keep the person behind me from passing me. Call me competitive but it reminded me of the feeling that had been fine tuned during my many years of competitive running, so I naturally sped up. 

I have reflected on that experience many times over the last few weeks and I have been constantly reminded of how amazing the body is. I haven't been able to be competitive for well over a year and haven't been a competitive runner since 2008. The thing that amazes me is that the skill of spacial awareness is still very much there and my body, instinctively, did what it had been trained to do. I know that if I were to pick up a basketball today, I would be able to dribble a ball, and I would be able to shoot it (although it would be ugly). The thousands of hours I put in years ago still have left their impression on my muscles. Muscle memory is an amazing thing but it can also be frustrating. 

This was taken back in 2006

The frustrating part can come when your muscles have learned something that isn't good. I have heard from some smokers that have quite that it isn't just the nicotine that they miss but also the motion of smoking. Their arm is so used to bringing a cigarette to their lips that it miss the motion and the fingers miss, the cigarette that they used to hold. For me, it is my abdomen muscles and stomach that have acquired a poor muscle memory; Vomiting. 

While I was at the Cleveland Clinic, I had a montomitry test done that looks at the motility function of the esophagus. They put this awful sensor up your nose and down into your stomach and It measures the pressure of the esophagus. After the standard test was done, they had me eat some food to see what my esophagus would do while eating and while vomiting. I was extremely nervous for this test to be done because I was afraid that I wouldn't throw up and the test would be a bust. We'll I didn't have that problem and I ended up trowing up the Cheerios that I had brought with me. Once I started throwing up. They monitored me for about 20 more minuets to see what would happen when I would sit up, and lay down on my back and side. After the test was done they removed the tube and told me that Dr. Gabbard would review the results the next day. 

Normal peristaltic wave

Rumination event

When I received his phone call, he informed me that he thinks I have something called Rumination Syndrome, which is the involuntary force of the abdomen muscles upon the stomach that induces vomiting. In essence the muscles of my stomach have learned, due to the vomiting from the SMA syndrome, that is what they are supposed to do. 

At first I struggled with this diagnosis. I felt like this was something I should have been able to control and if I could have controlled it, then I wouldn't have had to put my family through so much. I felt guilty. I have had to work through that feeling and understand that this condition is INVOLUNTARY. It is not something I chose, I didn't choose to have SMA syndrome, I didn't choose to begin throwing up over 2 years ago, and I didn't choose for my muscles to imprint with the memory of vomiting. This is something that happened over time. Just like my muscles didn't learn how to shoot a basketball over night, it all takes time and it will take time for my stomach/muscles, to unlearn how to vomit. 

I met with a Dr. today who is going to be connecting me with the support that I will need, to help me retrain my muscles and hopefully get back to being healthy again. She wants me to do a form of Biofeedback, which I have determined it is going to be like Physical/mental therapy for my diaphragm and stomach. It should be fun right? It was very nice to hear hope in this doctors voice verses the hopelessness that has been effervescent lately. She explained to me that there isn't a lot of research that has been done on this syndrome and that it is more common in children and adolescents then adults and so although some of my symptoms don't fit the "Standard" rumination, they very well could be related to it. She is very hopeful that I will be able to regain the ability to eat and get this vomiting thing under control. She did warn me though that it will take some time but her goal is to get me off of the feeding tube and as she walked out of the door she said "and I would be more then happy to take it out right here in my office!" 

On a side note, to my friends who are familiar with animal, yes this is a syndrome named after ruminant animals, like cows and any animal that chews it's cud, but no I don't have more then one stomach and I would like to identify more with a giraffe. ;)

Thank you all for your love and support through this journey. I am praying that this is the answers to all the prayers that have been said on my behalf and am feeling hopeful for the future and to being able to regain my health once more! 

Missing

Yesterday I was walking down the stares and a thought popped into my head about my grandparents. Next month my Grandma will have been gone from this earth for a year and we just passed my Grandpa being gone for 2 years. An overwhelming feeling came over me and brought tears to my eyes. I cried little when my grandpa passed away but I didn't cry much at all when my Grandma passed. I think with her passing, at the time, it was more of a relief that she went the way she did verses the long drawn out death that her cancer would have offered her. 

67 years ago today, (10/17/1948), my grandparents were married and the creation of their family began and generations have been affected by their choice. And today, I miss them. I miss their smiles, their warm hugs, there long drawn out stories, my grandpa yelling "WANDA!" at my grandma to get her attention, and then my grandma telling him she couldn't understand him because he talked like he had a mouth full of mush. I miss their home in Salem and the childhood summers spent lazing about their house, using scooters around the block and climbing the trees in their front yard. I miss all the family gatherings we would have at their house, filling the house with laughter, kids running around, the wonderful smell of baked goodness oozing from the kitchen. 

It was a simpler time. It wasn't always happy but it was good. The foundation of many of my fondest memories were built around the life my grandparents had created. I love them dearly and today I miss them and I also miss what was. 

I always thought that grief was a process with an end date and should be accomplished with in a certain time period. I also thought that once you processed your grief that was it, you were done. No longer would the pains of sadness or longing for their company be there. You just move on. I have learned that this thought process is not only wrong but in a way harmful. Everyone deals with loss and grief in their own way and time and although there are healthy ways to deal with grief, it will look different for everyone. 

Media today, I feel, has depicted the "normal" grieving process for society. You look at most movies and if someone hasn't started dating again by a year after their spouse has passes away, they are constantly encouraged/badgered to "move on" and get over their loss. I think the stories/movies fail to show the raw human emotion that may be to tender to move on from. Maybe that person lost the one person who completed them so fully that they couldn't imagine being with someone else. Maybe that person will get remarried but years down the road. There are even certain circumstances were maybe that spouse had a long drawn out death which allowed their mate to grieve while their partner was still living, allowing them to emotionally move on quicker then most would anticipate. 

I have learned that grief is so personal and as unique as the person who is grieving. So although it surprised me yesterday to be overcome with feelings of sadness over the loss of my Grandparents, I am ok with it. I'm writing about it instead of pushing those feeling back into the box they came from. It is ok for these feelings to occasionally surface. For me it helps me stay close to my ancestors and helps me honor their lives. Because they lived, I live now.

 

 

Love you two!

What the numbers don't say

I find myself in a very unique situation at this point in my life. I am actively trying to gain weight. Before getting sick, I was never really one to worry about my weight much. If I felt a little heavy, I would cut back the sweets, exercise a little more and a little bit of weight would come off. But, for the most part, I was blessed with a metabolism and lifestyle that allowed me to stay at a healthy weight. I was healthy, happy and my weight wasn't really an issue. Sure, at times, I wish my weight would have been distributed to different areas of my body (like most women), but that was not in my control. No matter what, I just wasn't going have a Beyoncé booty and I learned to be okay with no booty…it still got me where I needed to go. 

Two years ago, this perception started to change as weight became a very big issue for me (see SMAS or this post). At the time, we just hit our 8 year anniversary and in that time, we had never owned a scale. I finally broke down and bought one but not for the purpose of losing weight but to make sure I didn't lose too much. Fast forward two years and hardly a day goes by where I don't weigh myself. My weight is a big indicator as to what is going on with my body. If I lose to very much quickly, usually it means I'm dehydrated or I'm not getting enough calories and my tube feeds need to be adjusted. Many times after leaving the hospital, I would weigh more due to all the IV fluids they would pump into my body. So, I have to find that balance to make sure my body is getting what it needs. 

I have hesitated to share this as it is the lowest my weight has gone, but I'm not ashamed, it is part of my journey.

One thing that I have learned over the years is that no matter what size you are, there is always going to be body shaming, especially for women. We live in a culture that is obsessed with how we look and unfortunately we never meet up to the expectations that are put on us. We will always be too short, too tall, too thick, too thin, too heavy, too skinny, too tan, too pale, too whatever…the list can go on and on. There is always going to be someone or something out there that says we are not good enough. 

I have been fairly lucky to not have too many people comment about my size. Growing up, I used to get teased all the time for being too skinny and then I would see those same kids turn around and tease another kid for being too fat. I have come across a few individuals in the past two years that have had to endure public shaming due to thinness of their bodies. Shame for something they couldn't control and was caused by an illness and not by choice. On the flip side, I know many who are shamed on a daily basis by media, doctors, friends and family for being overweight. Body shaming goes both ways. 

As I have pondered this issue over the past year or so, I have come to the realization that weight is just a number. It is a number that shows up on a scale that people measure their self-worth and value through. If the number is too high, their value is lowered. If the number is too low, again their value is lowered. Unfortunately, society doesn't see the number on the scale for what it really is. It is just a number. It holds no meaning as to the worth of an individual. 

We as humans are obsessed with numbers and what they can "tell" us. For example, if someone is overweight, studies have shown that they are at a greater risk of developing serious health conditions. What the numbers and the studies don't show is the real person behind the numbers. They don't show individual struggles that are attached to that number on the scale. It doesn't show the person who has been caring for their mother who has been battling cancer and they have been so busy caring for her that they have had to eat out more. It doesn't show the girl who tries to eat healthy but just can't seem to lose the weight, she would like to exercise but her anxiety about her weight keeps her from going to the gym. It doesn't show the person who longs to be able to eat just a simple sandwich without being riddled with pain and nausea afterwards, who would give anything to be able to eat like everyone else. The numbers don't show what makes an individual. 

I sometimes wish that the bathroom scale could simply say healthy or unhealthy. I do realize that to do so would require a lot of different numerical factors, but in a perfect world, we wouldn't need scales at all. In this world, I think people need to focus less on the number that the scale says and focus more on how their bodies make them feel…healthy or unhealthy. This thought really came to me as I lied down on an x-ray table having a test done and the x-ray tech, after feeling for where my hip bones were, exclaimed how skinny I was and she wasn't used to working on such a thin person. I told her that I actually wished I weighed more than I do. She gave me a disgusted look and told me that most people would be happy to be as skinny as me. I told her that it would be one thing if I was healthy at this weight, but I'm not and that's why I'm lying on this table. Her expression changed and simply said, good point. 

Ultimately, weight is just a number. If a person feels healthy and happy at 300 lbs., who are we to judge that person’s worth according to their weight. Who knows? That person could be in the best shape of their life and their weight is not a hindrance to their quality of life.  If a person is healthy at 110 lbs., it's not our place to put stereotypes and say they are anorexic. They may eat 3000 calories a day but still not be able to put on a single pound due to a high metabolism. If they are healthy, that is what matters. If a person is unhealthy, they should by all means do what they can to get to a place that is healthy for them, however that may look.

Don't get me wrong, I understand the importance of numbers, numbers have saved my life, but numbers don't define me. Just like my illness doesn't define me, my weight doesn't define me. I am more than my body. I am an individual. There is no one else out there like me and I am learning that is a good thing. It is through our differences that the world thrives. So, let us be a little kinder to those around us and to ourselves. Let numbers shape us and help us grow but not define who we are as individuals, because as individuals, we are unquantifiable. 

Sisters

It has been really fun to watch my girls grow and start to see them play together. This week they have really started playing and interacting. The funnest thing to watch is them playing "hide and seek". It really just consists of Maia running around a corner and Kassia following her. Maia turns around and they both giggle and Kassia runs away. 

There was a moment this week that I will never forget. I was resting on the couch and the Maia and Kassia were playing with some toys. I realized that it quiet but there was soft chatter coming from Maia. They sat there on the floor for about 30 minutes, just playing together. It was magical. I look forward to more of these moments. 

As for me, I feel like I'm at a bit of a stand still. I thought I was starting to improve and then I caught a nasty cold/flu bug. Hopefully I can kick this soon so I can get back to feeling better! All in all though I can't complain to much I have two beautiful girls, who keep me motivated each day, and life is good. 

Pete you dirty line

Last week I noticed that the arm that had my pick in it was a little bit swollen around the line. I had my home health nurse look at it and she decided to have an ultrasound ordered to rule out blood clots. I didn't think much of it. Monday the ultra sound tech came and completed the the Doppler of my arm, armpit and chest. It was pretty cool to see all the veins on the ultra sound and I have to say it was weird having it done in my the comfort of my own home. I could get used to having tests done at home. As the tech was leaving she said that they would have the results in about 24 hours. I didn't think much of it. Most of the time these tests come back normal. 

I didn't hear back from them the next day so I didn't think much of it. My last PICC line had been in my arm for 7 months and I remember that my arm was pretty sore for the first couple of weeks. I figured my arm was just irritated with the line and it would probably go down in a week or so. By Wednesday I noticed that the line was starting to bleed under the PICC line dressing. That night I received a call from the nurse telling me that I had Phlebitis of the superficial vein in my arm. She said that meant that my vein was swollen and that I shouldn't use the PICC line anymore.

On Thursday I saw my primary care physician, he came in talking about me having a blood clot. I was kind of thrown off with him saying that and I told him the nurse had just said that it was swelling. Well anyway he ordered for a blood culture to be drawn and then for the PICC line to be removed. I agreed that was probably the best solution because I didn't really like the other options. I had found out from my tube feed supply company that I could get I could get not just the feed bag but I could get it with a flush bag also. While in the hospital they would use the two bags and that's how they would run the flushes. I thought you had to have a special pump to use these bags but I learned this week that wasn't the case. I really wish I would have known that I earlier because if I would have had the two bag unit earlier, I wouldn't have needed the IV's to stay hydrated. 

Anyway, I think we now have a good system figured out to help keep me hydrated and because of that I don't need the PICC line any more and now that it is gone, I hope I can start feeling better. I'm really glad that it was pulled because there was quite the growth growing on my PICC line. When my nurse pulled out the line we noticed that there was what looked like tissue wrapped around about 2 inches of the line. I didn't get a picture of it before my nurse pulled it off the line but she said that she hadn't ever seen anything like it before. In reference my last line, when it was pulled, the nurse said at that it looked like a brand new picc line because it was so clean. So to have this much growth on my PICC line this time after only two and a half weeks of having it, showed it did need to be pulled. 

I'm sorry to say that Picc-o-line Pete is now gone but I wont lie it is nice to be down one medical accessory. It sure makes taking showers easier and I won't have worry about Kassia playing with it or trying to pull it anymore. It is one step in the right direction. :) 

This what the Picc line looked like after it was removed. My nurse pulled the tissue off of it but when it came out that middle piece was wrapped around the line. A little scary that was on it but I'm blessed it stayed on the line didn't break off.  

Tired and humbled but good.

It is has been just over a week since I was discharged from the hospital. You could say a lot has happened or you could say a little has happened and both would probably be correct in their own rights. No matter what is going on in me sphere, the world keeps moving forward and time keeps going. I try to not focus on the "little" because my expectations never match up to reality and what is dreamed as ok/normal. I have been extremely humbled this last week and I have had to be ok with where I am. 

To explain, I am tired. A different tired that I haven't experienced in my life. When going through a hard time, I tend to compare what I'm dealing with now, with things that I have experienced in the past. I think about the day after the USAA National championship track meet when I was a freshman. For two days I had pushed my body to it's physical limits. I had participated in 15 events and had success in many of them and it was worth all the effort I put into it. I also could barely walk for two days after. My legs and body were sore and my strength was like jello and they had nothing more to give but the fantastic thing about my body at that time, is it got better. From that experience my body got stronger. 

Fast forward almost 10 years, and here I sit on the couch writing a blog about my life. Today we went out to the Upper Arlington Art Festival and we were there for probably 45 minuets. It was really nice to get out and Maia had a great time but I was spent. It was really hot and we only parked about 5 minuets away but I was too tired to make it back to the car. It is hard for me to admit that but it is what it is and Luckily Sean was able to go get the car to pick Kassia and I up. Once we got home Sean put the girls down for their naps and I crashed on the couch. I reflect on that experience when I was completely physically exhausted from exercising, there was still a core of energy that I could feel would return. Today, I reached for that core and it feels muddled. Usually a couple days of good rest and I'm back at it. This time is different. Even though I have received the more nutrition in the last weeks, then I have in a long time, I am more tired then I was before I had my J tube placed. 

I have to remind myself on days like this, that this too shall pass. I have been humbled. I know it will take time for my body to regain it's strength and being tired is just a part of that healing process. I am humbled because I know this just a short time in my life. There are many many people in this world that struggle with illnesses and limitations that don't have the hope of recovery. In a couple of years, I will hopefully be looking back at this time as my rock bottom, but that rock as being something that I a grow and learn from. As long as I have my J tube running properly, I should never have to feel the dark depths of starvation ever again. 

I am humbled by the outpouring of love that has been shown to me. To many people to name have reached out to me and shared their love with me and my family. I am humbled by the peace I have felt through this experience. I am humbled by all the prayers that have been said and the fasts that have been completed for me. I know that I am very blessed. I can't deny that. 

How this last complication with the bowel obstruction resolved, is a prime example of a direct blessing in my life. I didn't share this earlier but I feel like I should. Once I was admitted to the hospital, I asked Sean and my Dad to give me a blessing. I don't remember what was said but I remember feeling peace and knowing that things would be alright. Having my dad there was a huge because he was able use some of his chiropractic knowledge and tools to work on the area of my abdomen where we thought the blockage might be. Because of the blessing, and a combination of what my dad did and the medical interventions, I was able to avoid surgery and recover from the obstruction. I am still dealing with the after effects of the obstruction but I am so grateful that I'm not dealing with recovery of another surgery.

Throughout my life I have had the privilege to know many who struggle with health, financial, and mental well being problems. One girl inparticular, has stuck out to me while I have been dealing with this health debacle. When we lived in Wymount I had the opportunity to give quite a bit of service to a young couple who were expecting their first child. (I may have a few of these details off) but while in her second trimester, she suffered something close to a stroke but it was a bleed on her brain stem. She ended up having surgery during her pregnancy and it saved her life and her sons but she was left with many neurological problems. 

Her life changed drastically from that time on. After fighting for a long time to keep her husband in school and trying to live life as normally as possible, they chose to move. As a relief society we came in and help this sister move. I was so humbled to be there packing things that I know I would never want other people packing for me, for this young woman. It may have been killing her inside but she took it very gracefully. While I was helping her pack I came across pictures of what I can only assume where her senior pictures. She was so beautiful in the couple pictures that I saw. Her smile was so stunning and I remember thinking, "Oh how much her, the girl in the pictures, life has changed and the dreams that will never be completed. I feel so sorry for her." 

I have learned how naive that thought was. This woman has been a great example to me as she has journeyed over the last few years and one thing I have learned is that it is ok to refocus your dreams. There are times that no matter how hard we try or how much we plan, there are some dreams that we just don't reach. I remember in High School being so obsessed with the Olympics. I was determined that I was going to be an Olympian. Well I came to realize in college that no matter how hard I worked my body wasn't capable of being an Olympic high jumper. I had to learned what goals were possible for my body and be happy with trying to push to reach those goals. I have learned great happiness can be found through refocusing life's expectations, but that happiness doesn't usually come till the pain of the loss of a dream has subsided. 

There are so many people out there who have struggles that are so much greater than mine. I am so humbled to have experienced/ be experiencing a small portion what many struggle with. I recognize that my trial is real and it is hard for me but there is so much that I am still capable of so much. My prognosis is unknown but I know that there are areas of my life that will return to more of a normal appearance. 

I am reminded even though I'm tired, I can get up off the couch to feed my child. I can't run right now but I should be able to in the future. I may never be able to eat a full meal again but I can cook for others to enjoy. One of the things in my life, that most don't even take a second thought about, will be different for a long time. The way I eat will be different and that is ok. I just have to find my groove.

I don't know what the future holds but I know that right now there is a lot that is good. 

Here is some of the good that has happened this last week: 

I was releaced from the hospital and had a great couple of days to visit with my mother before she returned to Oregon. (I'll post a couple pictures once I get on my computer).

On Saturday we watched BYU play and win against Nebraska! 

On Saturday morning Maia and Kassia were really cute together:  

Sisterly love! Oh and Maia's favorite color on Saturday was blue so everything had to be blue. 

We teach them young here who to cheer for! 

I absolutely love when Kassia gently touches her Daddy's face (usually it is soft right before she starts trying to pull his hairs), but the love is there. 

Here are some pictures from our outing to the Upper Arlington Art Festival:

 Maia giving a hug to Sparky the fire dog and getting to sit in a fire truck.

They had a lot of really neat things for kids to do and this is just one of the activities that Maia got to participate in.   

We head into a new week with a new routien, but we will face this life together as a family and it will be good.