A long over due update

I know I have been pretty quite for the last few months and there is several reasons for that. Between traveling and learning about how my body is changing, I have not been motivated or had the concentration to blog. I do need to let you all know how I have been and I think it is fitting to post today, as it is SMAS awareness day.

This week a year ago, on the 22nd I went into surgery to bypass my superior mesenteric artery and duodenum. I went into the surgery very hopeful that I would be able regain my ability to eat and not throw it bake up. I had been counseled that the recovery would take a lot longer then the 6-8 months the surgeon had said it would, like at least a year, but I thought that I was strong enough that it wouldn't take me that long. Then 10 days later I ended up back in the operating room to fix a late post operative bleed. The more I have reflected on this, I have come to the conclusion that this second surgery set me back more then I ever gave it credit.

Fast forward a year, I still rely on tube feeds to get enough calories and hydration to survive. I have put on about 8 pounds and am stronger then I was. Because of my tube, I deal with chronic abdominal pain and that probably wont go away till the tube is removed. I also deal with quite a bit of fatigue and although there is a lot I can do, if I do too much in a day, I pay for it the next day.

My treatment plan as of right now is to get me to be able to eat and drink enough to not need the tube feeds anymore. To do this I have been seeing a physical therapist who specializes in scar tissue in the abdomen and I also spent a month at my parents house where my dad, who is a chiropractor, worked on breaking up the scar tissue as well. I think that the work that my dad did and continuing the physical therapy here in Ohio, I should be able to regain my ability to eat and eat enough. I may never be able eat like I used to but to be able to survive on my own is my goal and I can deal with the rest.

I hopefully will be updating my blog with some of the activities we did over the past couple of months so you can see more of my cute kid's faces. Thank you all again for your love, support and prayers in my behalf and for my family.

I created this video for SMAS awareness day and as reminder that even though my year was spotted with hospital visits, that's all it was: spotted. The rest of the canvas was covered with a lot of joy and good memories.

2016

2016. In some ways you couldn't get here fast enough but in other 2015 will be a year that I will never ever forget.

2016. There is a lot of hope for you to be an amazing year, between what we have planned and the fact that I'm starting to feel better, you have a really good chance of being fantastic. 

2016. I am excited to experience your ups and your downs.

2016. I here to stay. 2015 tried to get rid of me but it didn't know my strengths.

2016. I know I can get through anything you have to throw at me because I have my husband and my girls by my side. 

2016. I know we have some big things happening this year but you will not break my faith, strengths or spirit. If 2015 couldn't do it you can't either.

2016. You are a new year, I am a new me. 30 hasn't looked better. 

2016. Let's just get along and play nice. It will be better for all involved that we work as a team. 

2016. Here we go!

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.