Disability Pride

Over the past couple years I have thought about posting many times but was never in the right mindset or motivated when the thought came. I realized that as much as this is to share my journey it is also for me to record life and express myself. I am coming to understand that I have to want to write for me more than anything and am trying not to feel pressure to say something important but to just share life, no matter how inconsequential it feels. I am also realizing that sometimes it is difficult emotionally to share what has/is happening and I need to make sure that I prioritize my health (mental and physical) above all else. With that said, I fully intend to go back and share everything that has happened in the last couple crazy years but it may take a little while for me to feel ready.

I recently learned that July is disability pride month. While there is also a disability awareness month (as well as months to raise awareness about many specific conditions/diseases), this is a time to embrace our disabilities and share who with are with our conditions, not in spite of them. The reason July is the month of celebration is because on July 26, 1990 the Americans with Disabilities Act (ADA) was passed ensuring rights for those of us that live with disabilities. Having learned this I have been thinking a lot about what it means to be proud of myself and the way my disability shapes me, as well as to accept and love the life that I lead as a disabled woman.

It has taken me a long time to accept that I am a disabled woman (and I still sometimes struggle to admit this). When I first started showing symptoms my biggest priority was to figure out what was causing them, solve the problem and get back to ‘normal’ life. Admitting that I am disabled means in large part accepting that this is who I am and this is the life I lead. It also means learning to love and celebrate the things that I do and the person I am, living this life that is so completely different from anything I ever envisioned or hoped my life would be.

I still have many days (or weeks or months) where all I want is to go back to the person I used to be, before I was sick. However, I am learning more and more to see the positives in the person that being sick has made me and the way that I have grown since this journey began. This doesn’t mean that I love being sick or am fighting any less to gain more independence and stability, but, it does mean that I am coming to appreciate the strength and depth that I have gained as a result.

In honor of disabilty pride month I would like to take a moment to really love the disabled person I am and communicate what being proud of this means for me. I do want to say before I dive in that not every disabled person has the same journey and that my experience and feelings in no way reflect disabled people as a whole. Each disabled person has their individual opinions and views on what disability pride looks like. This is mine.

Before becoming disabled I was an educated, somewhat naive, young adult who had somewhat positive views about the world as a whole and was convinced that I was going to do big things that would change the world in big ways. I had my whole life planned out and there was nothing that was going to stand in my way or alter my plan. I thought I knew exactly who I was meant to be and who I was. For the beginning of this crazy health journey (which was several years) I felt like I was falling behind on my plan and was becoming more and more distressed that my life had been derailed and was going to be harder and harder to get back on track to the way that it was ‘supposed’ to be. I was constantly approaching things from the perspective of how quickly I could get back to the ‘normal’ that I expected my life to be.

As the years progressed and my health continued to decline I became despondent that my life was slipping through my fingers and that I had completely failed. Every decision I made and ever challenge that was thrown my way just emphasized how far I was getting from the ‘right path’ that I was supposed to be on. If I am completely honest I still go through periods of time (sometimes frequently) that I feel so discouraged and feel like a complete failure. I felt like the situation I was in was in some way a reflection of the person I was or was tied to how motivated or hard working I was. There was (and sometimes still is) nothing that could convince me that my health was not my ‘fault’ and that it had nothing to do with my character or actions. I have even gone through periods where I felt like I wasn’t doing the sick girl thing right either. As if there was a right way to handle my disorders and that I was somehow failing at that too.

As my health deteriorated to the point that I was facing death I couldn’t get past the thought that I had failed at life and that I was a pointless waste. I was convinced that I had achieved nothing meaningful and that made me completely worthless as a human being. Even when things started to (very slowly and very minimally) improve I was convinced that it didn’t matter as I had missed my window to ‘make’ my life matter and that there was nothing I could do to matter. I watched my peer group lead their lives and just knew that they were better than me because of the things that were happening in their lives. I even watched other disabled people and felt like I was not as ‘good’ at being disabled as they were. I often felt incredibley alone, as if there was no one who could possibly understand how much of a failure I was. Every development with my health pushed me further into the despair that I would never amount to anything. *I want to note that the people closest to me never made me feel less than in any way and often went out of the their way to let me know how special and valuable I was. They constantly tried to make me see that I wansn’t a failure or a useless waste of life. Unfortunately, often these assurances did nothing to improve my outlook or change the way I felt (which is no reflection on the people around me).

I got so low that I didn’t even want to engage with the measures that were improving my life and didn’t care if I was miserable. It felt like everything I tried or did was pointless because nothing could change the long term outcome and nothing could give me back the life that I had lost. As more time passed it became more and more clear the gap between what my life looked like and the lives of those I had once been close to was rapidly expanding. I watched as those that were younger experienced and ‘surpassed’ the things that were supposed to have happened in my life. I frequently felt like I was not even worth talking to or being around anymore as everyone else had great lives without me and that I had nothing to contribute in any way. Everything about me felt like another reason why I was not valuable and was a burden on the world around me.

If I am being completely transparent I still struggle with thoughts of being worthless and a burden. I frequently fall into the trap of comparisson, both to the people around me and to the life that I thought I was supposed to lead. Even the triumphs sometimes feel like stupid things to celebrate and I feel like a fool for getting excited about the small things in life and the ‘minor’ things I accomplish. I often find it challenging to remember that my journey may not be like other people’s but it is not less than and that the things I accomplish are no less valuable because they are different than the accomplishments of others. It is hard work to remember to see my worth in things other than the physical contributions I have not made and to find value simply in the person that I am.

As I have spent more time in the past couple weeks really thinking on what it means to be proud of my disabled self I have come to a few conclusions. Deep down I truly love the person that I am today, not in spite of the disabilities that I live with but WITH and because of them. I am learning to accept the ‘broken’ parts of me as things that make me who I am and things that without I would be a completely different human. I am also working to love the things that help me live life and function to the best of my ability as well as embracing the difficult things that have shaped my story.

Here are some of those things.(in no particular order)

  • First, (and this is a difficult one for me recently) I am proud of my scars. This includes the ones from my numerous injuries as well as the ones from my many procedures and surgeries. At times I feel self conscious about the scars on my face from falls, the scars on my abdomen from feeding tubes and surgeries, and the scars on my chest from my central lines. I am learning to see my scars as reminders of my strength and of the times that I have overcome. I am also learning to appreciate the surgical ones as marks of the times when science helped save and better my life. I am trying to be proud to show what makes me me through the physical scars that I carry and to love the marks that show the journey I am on.
  • Second, I am proud to show the medical equipment that helps me function and is a piece of me. I am proud of my central line and the way that it helps me get the fluids that I need to be able to live the life that I lead. I am proud of my wheelchair because it allows me to engage in the world in ways I may not otherwise be able to. I am incredibly proud of Apollo, my service dog, and the work that he is doing to help me being a more independent individual. I am learning to not be ashamed of the noise that my pumps make and the added challenge that requiring medical equipment carries (especially when travelling).
  • Third, I am learning to be proud of the things I accomplish. The physical activity I work hard to achieve. The way I engage with the world and work to support those around me. The animals I have shared life with and worked to impact through my actions. The contributions I make in the lives of my family and friends just through being there as I am.
  • Finally, I am proud to share my life. I am proud to be a friend and support for those around me. Having POTS (and gastroparesis, autonomic neuropathy, migraines, etc.) is a huge part of who I am. It has showed me how much strength and resilience I have. It has taught me to appreciate life in a different way. It has showed me who my true friends and support system are, those who really stick around when things are tough. It teaches me every day the things that truly matter and is constantly helping me see what truly makes me happy and fufilled in life. There are times (often) when I wish I wasn’t disabled and that I could go through life without these burdens. However, I am learning to see these things not as burdens at all but as pieces of me that make me who I am and are shaping the person I am becoming!

To wrap things up, while I may struggle with accepting who I am and may struggle to see the value I have with my disability, in the end I am working hard to say … I am PROUD to be a disabled woman!!

I’m Back!

First off I want to apologize for my six month hiatus. As I am sure many of you can relate to COVID has transformed my day to day life and I felt like there was never much going on and never much to share. I often intended to get on and share what little was going on in my life but my good intentions never turned into much action. I also want to be honest and say that my depression has not been great recently and has put me in a funk of not doing much with my time each day.

I have been attempting to ride the recumbent bike daily to get some good exercise and to help with my POTS. The protocol is to start with 3 min/day for one week and then increase by one minute each week. I have made it up to 24 minutes and with a few exceptions am going strong. It does feel good to accomplish this task each day, however minor it may be. I have also been spending a lot of time reading and watching TV/Movies in bed. I have read dozens of books in the last six months and watched many movies and TV shows. I have enjoyed many of them. I have recenently discovered my love of audiobooks and have been enjoying the ability to play a game on my phone or color while I listen to a book. For the most part this is the entirety of how I spend my time.

Apollo and I have been working on a bit of training at home and he is learning some exciting new things. We were just beginning to work on being in public when the pandemic started and until recently (after myself and my family being vaccinated) I have not felt comfortable having him out in public and carrying germs home with him. He recently learned to retrieve or ‘bring’ my phone to me when I ask for it. I attached a paracord keychain to my phone and he uses the keychain to pick up the phone and carry it to where I am. It has on several occasions allowed me to call for help when I was stuck in an uncomfortable position after passing out. He gets so excited when he can be helpful and it brings me a lot of peace of mind to know that he is there. We are as strongly bonded as ever and I cannot imagine my life without him.

Isis is enjoying being retired and spends most of her time asleep on the deck in the sun or on the couch. She enjoys eating more than ever and would eat all day if we let her. She has recently lost a bit of weight, which the vet says is normal at her age, but you wouldn’t know it by looking at her. She has her moments of energy where she runs and plays with Apollo and Willow but they don’t last very long. In February she turned 10 and I am so grateful for every day that I get to continue having her in my life. I hope that we have many years left together.

Mom and Dad are back at work with a modified schedule and it has been weird not having them working from home. They are both stressed trying to keep up with the ever changing rules and safety protocols but are loving having some more face to face contact with their students again. It is definitely an experience that none of them (my parents or their students) will ever forget. I never thought I would get used to them being home all the time but to be honest I do miss the social interaction during the day. At the same time it is nice to have time to myself to be able to do things for myself.

My sisters have sure been busy. Haley is off hiking the PCT currently and recently hit the 500 mile mark. I am amazed by her strength and perseverance as she triumphs on this extraordinary hike. Claire is working at the orthopedic clinic and is busy starting to plan her wedding. It is an exciting time for her and for us sisters as her bridesmaids. Faith recently graduated from George Fox with a bachelor in Social Work and is considering her next steps. I can’t wait to see the ways that she changes the world.

I have been incredibly grateful for the few of my friends that have been super present in my life over the past few months and have been there to support me and allowed me to help support them. Shout out to Jenessa for communicating nearly every day about the most mundane things and for getting together virtually once a week to watch netflix and talk into the late hours of the night. I don’t know what I would do without you!! Thanks also to Holly who is always there to listen and support me or even just send me cute pictures when I am having a rough time. Your family means so much to me. Also, thanks to Katy for being there to text whenever I need her and for welcoming Apollo and I for playdates and social time with her and Lexi. Thanks also to Adrian who sends me possum pictures and goats in the mail. You always know how to make me smile.

Some crazy health stuff has been going on in the past couple months and weeks but I feel like that is a story in itself that I will update on shortly.

Hopefully, this will be the beginning of me posting more consistently and keeping you more up to date on what life looks like for me right now. When things get challenging or boring I tend to shrink back into my shell and it is a learning experience to reach out and share. I think it is a good thing and will continue trying to do this thing called blogging.

Thanks for reading! It’s good to be back!

Also, Happy Eliza Doolittle Day!

Gastrectomy Anniversary

I want to start by apologizing for the almost nine month period with no posts. As I am sure everyone knows COVID has made life different and crazy. Due to all the changes at home and in life in general I got out of the habit of posting. I had intentions several times but it just never happened. I felt like today was a good day to get back on as today is the One Year anniversary of the day that my stomach was removed!! I do want to acknowledge that a lot of life has happened in the last several months and I intend to go back and update everyone on what has gone on. For today however, I am going to focus on the way my life has changed over the last year due to my surgery. Some of this information will be a recap of what I have already shared but I figure I should cover all the bases.

As I shared, the first few months after surgery were a bit rough. I have very little memory of my time in the hospital post surgery but am told that this is partially due to the fact that I was in pain and was kept on meds to keep me comfortable. In the first few months post surgery I was on a liquid only diet. This in itself was not a huge struggle as I had very little appetite anyway. I then advanced to a soft food diet. This was a bit more challenging as it was hard to get enough nutrition and I was still requiring tube feeds which continued to be painful.

Over the next several months as I was cleared to eat a more normal diet I started to notice how much things had changed. Before surgery I was in pain and nauseous all the time, and things always got worse when I ate. Post surgery I had pain associated with my feeding tube but was not experiencing the level of abdominal pain that I had been experiencing before. I continued to have some nausea after I ate but wasn’t nearly as nauseated as I had been before. As time went on I learned my limits in how much food I could eat at one time (which is not much) and as I began to eat smaller portions my nausea got evern better.

A few months in to the year with no stomach my feeding tube started causing more problems and I was able to use it less and less. I had contant tube pain which increased whenever feeds were running. After a series of unfortunate tube issues (it being pulled out, replaced, falling, out and replaced again) my doctors decided that I was capable of getting enough nutrition without it (as I was also on TPN) and it was causing more problems than it was solving. At that point I was told that it was okay to have my tube removed. The day my tube was removed the pain in my abdomen went away almost completely. I hadn’t really realized up to that point how much of my pain had really been removed when my stomach was taken out. Over the next couple weeks as my tube tract healed the pain only got better.

After my tube removal I remained on TPN with the hope that we would slowly wean off and eventually get me to a place where I could get all my nutrition by mouth. I was still having some symptoms and challenges with eating but it was assumed that everything would continue to improve as time went on.

Over the next several months I would start to decrease my TPN from 100% nutrition to 75% nutrition, although I still was using it everyday. My symptoms with eating continued to get worse. After eating certain meals I would experience dizziness, lightheadedness, nausea, hot flashes, pain, and a general feeling of being unwell. This would come on within 15-30 minutes after eating and would sometimes last for a few hours. My GI was concerned that it was a POTS flare but my POTS doctor was confident that it had nothing to do with my POTS.

My POTS doctor brought up dumping syndrome and over the next several weeks I started researching and reading everything I could find. After realizing that my symptoms matched exactly I reached out to my GI with more specific questions. He agreed that my symptoms all fit and I was officially diagnosed with dumping syndrome. Different sources have different opinions about what dietary changes need to be made with this diagnosis and I was feeling overwhelmed about where to start. This is when I reached out to a dietician.

My dietician explained to me that dumping syndrome happens after surgeries which alter the stomach in any major way. By altering the stomach food moves directly into the small intestine without being first broken down. The small intestine rapidly absorbs sugars from food that have not had the chance to be properly processed and causes a sudden increase in blood sugar. What follows soon after is a drop in blood sugar which is what was causing all the symptoms I was experiencing after eating. She told me that the only way to prevent these spikes and drops was to eliminate added sugar from my diet.

This was a overwhelming change to make. She made it clear that natural sugars were okay as they are processed and absorbed by the small intestine differently. At first I was so frustrated. I had undergone this major operation and months of difficult recovery only to be back to having to be on a restrictive diet again. It was devastating and I began to question whether having a gastrectomy had been the right decision to make. Then, with the help of my mother, I began to dive in to this new diet and learn the things that were safe to eat.

Living in America means that there is sugar in almost everything. Even in the foods where you think there would be no need to add sugar. One of the ones that shocked me most was bread. Whole wheat bread has ADDED SUGAR. Why?! While this seems completely unnecessary it is unfortunately true. I began reading the nutrition labels on everything and saw added sugar everywhere. Going to health food stores and local grocers we were able to find breads, crackers, and other food that did not have any added sugar in them. We found pasta and pasta sauce (which was not easy). We found that eating whole foods and little processed food was going to be the best way to go.

Over the course of this whole journey I have been seeing a counselor to help me work through the medical trials and all the emotions that go along with them. She is a wonderful person and has helped me in so many ways. When she heard that I was unable to have added sugars she went and put together a gift bag with sugar-free sweets and natural sugar alternatives to use in baking and as an alternative to sugar or honey. With her help I realized that this diet was not as awful as I thought it was going to be.

Eating out is a bit of a struggle now as added sugar hides in a lot of places. Not all restaraunts has extensive nutrition information that allows me to know where there may be sugar hiding. There have been a few times where I have eaten something and quickly realized that there was sugar hiding in there somewhere.

Along with comepletely eliminating added sugar from my diet, I needed to be more intentional about eating five to six small meals a day in order to get an adequate amount of nutrition. This has meant finding protein bars with no added sugar and learning how to eat less at meal times but more times throughout the day. The other major learning curve is that with dumping syndrome I am not supposed to have solids and liquids within a half an hour of each other in order to give my small intestines more time to absorb nutrients from my food without the liquids rushing it through. This has in some ways been the most challenging adjustment but with time has become more normal.

With the help of all these changes my life has drastically changed. I was no longer having pain and nausea and all the other symptoms that came with eating. Without my feeding tube my abdomen felt normal. I was still dependent on TPN but had weaned down to only needing it a few days a week. The dietary changes had been a struggle but I was learning to manage and learning to get enough nutrition throughout the day (with the help of the vitamins I will be on for the rest of my life). My TPN was down to two days a week and we were looking to get me off it completely. Things were looking up for the first time in a long time.

And then, two weeks ago things started to fall apart. I have started having severe abdominal pain when I eat and am throwing up again. This is not the symptoms I was having when eating sugar and is not a pain that I have experienced before. I had an appointment with my GI and he said there is a number of things it could be, including scar tissue causing problems, a twist in my intestines, or even an ulcer. I am trying some different medications and have changed the doses of some of the meds that I am already on. I have an ultrasound later this week to check for problems. As a result of this problem I have been struggling to maintain my nutrition and have been losing weight at a somewhat alrming rate. This means that all attempts to get me off TPN have been put on hold and pending my test results we may even need to increase it again. In the end this could just be a fluke thing that will go away on its own. After all the progress this has been discouraging.

The past two weeks have been hard and have made me question if my gastrectomy was the best path. Recently a close friend reminded me that even with all the hurdles, overall, the last year has seen a dramatic increase in my quality of life. I still have POTS and get two liters of fluid everyday to help keep down the number of times I pass out. I may have had to make changes to my diet but for the most part I can eat almost anything that I want, and a lot more than I could with gastroparesis. While the last few weeks have been hard, the months before that have been so much better.

In the end, I am glad that I had my gastrectomy. It has been a long, and at times difficult, road but in the end things have improved so much. Regardless of what this pain is it will eventually be fixed and go away and I will go back to an almost pain free life. There is still hope and a plan that I will eventually wean off my TPN and I know that someday it will happen. I still have trying days when nothing seems to be working right and I feel like everything is falling apart, but, this is part of being chronically ill. I have some amazing people in my life who constanly remind me how much better things are from a year ago and how much hope there is for the future. If I had to do it over again I would make the same choice. My first year with no stomach has been difficult, but hopefully each year to come will get better and better.

Home Sweet Home

I will just pick up where I left off. The abdominal CT came back clear of infection around my J-tube. This meant that my feeding tube can stay in place and can still be used. Then started the waiting to see if the infection would begin to clear over the remainder of the weekend.

Saturday, March 14th, dad brought pie shakes to celebrate PI day. I couldn’t tolerate more than a few drinks of mine but it was fun to continue our PI day tradition, even in the hospital. We played games and hung out until late when mom and dad went home.

Sunday, March 15th is when things started to get crazy. Dad came in the morning as he usually does and brought me coffee. A family friend came soon after and brought a fun new game, Disney Pictopia. We all played for a while until dad had to leave to go to my Nana’s. Mom arrived shortly after and we continued to play games. I had an amazing nurse that was super fun. Him and dad hit it off right away as they have a lot in common. He would come hang out in my room when he had some time and share some crazy stories.

In the afternoon, mom got a text from my sister with a screenshot saying that, as of Monday morning, Salem Health would not be allowing any visitors because of Covid-19. We called my nurse in to see if we could get more specifics on what this would look like and he had no idea. Of course they posted it on the website before even informing the nurses and doctors! While he went to clarify and get more information mom and I continued to play games and hang out. He soon came back saying that not only was this in fact true but that they had just updated it to effective immediately. He said mom had a little while to finish our game and gather her stuff but then she had to leave. Nurses were supposed to check all their rooms and call security on anyone other than the patient that remained in the room.

Now, I am an adult and am capable of spending time by myself in the hospital. It is nice to have people to pass the time with but not crucial. I was incredibley lucky that my mom had already brought me a bag of stuff from home. I had my laptop, kindle, chargers, toothbrush, clean things to change into, and hygiene items to clean up with each day. I will be honest though, that I got quite emotional when mom had to leave. It is harder to be alone knowing that there is someone that wants to be with you and is being told that they are not allowed in.

Sunday evening and night passed without any more drama or much sleep. I firmly believe that a hospital is the hardest place to get good sleep. There are people checking on you, taking vitals, drawing blood, and other patients making noise ALL NIGHT LONG.

Monday morning came and the hospitalist came by to see me. She said that while my feeding tube looked clear, in the CT there appeared to be a small mass on the base of my lung. They were concerned that it may be infection breaking off from my heart and wanted to do further testing to make sure. A little while after she left, a family friend that works at the hospital dropped off a coffee for me, which I appreciated so much. Then the ID doctor came in and said that she was certain it was not a pocket of infection in my lungs, and that my heart was fine, but that once the radiologist wrote it as a possibility in the report it had to be evaluated thoroughly. Both doctors informed me that I would be having a transesophageal echocardiogram (TEE) later that day. The told me it was a procedure done under sedation, much like an endoscopy, and that I wouldn’t feel or remember a thing.

I got out of bed for a little bit to clean off with baby wipes, brush my teeth, and change into fresh underwear and shorts. I called mom and let her know the plan. The nurse came in with the consent forms, one consent for the procedure and one consent for the sedation. I was informed that the procedure is done in the room and that I would need to be monitored more closely for a few hours after as the sedation wore off. The nurses prepped the sedation meds and we waited for the tech and doctor to arrive. I was already on a heart monitor but was hooked up to a blood pressure cuff and a pulse ox to monitor me during and after the procedure.

The tech arrived with the echo machine and started prepping all the equipment. Soon after, the doctor arrived. Numbing spray was sprayed in my mouth and throat and the nurses asked if they should begin administering the sedation. He told them to give me 1 of versed. For anyone that doesn’t know 1 of versed does very little, if anything in terms of sedation. He then began the procedure. A tube with a camera on it was shoved down my throat and moved around to get pictures of my heart through my esophagus. This was a painful procedure and I gagged the whole time. Tears were running down my face but I couldn’t do anything to stop what was happening. When he finished the doctor said ‘looks clear’ and left the room. The nurses were all shcoked at what had just happened and couldn’t believe more sedation was not administered. My heart rate and blood pressure were so high from the stress that they had to monitor me for a while after until my body calmed down. This was the THIRD time is less than two weeks that I was not sedated for a procedure I should have been sedated for.

Later that day the hospitalist came in to inform me that the TEE was normal and that my heart appeared completely fine and infection free. She was however still concerned about the spot on my lungs and wanted a chest CT to see if we could get a clearer picture. By this point it was to late in the day to expect the scan to happen so that meant another night in the hospital. Just as every other night I did not get much sleep and wanted so bad to just go home.

Tuesday, March 17th I was informed that I would be having a CT of my chest and that the doctors were discussing placing a new line, meaning that I could go home. There was some debate over what type of line would be the best for me that would still leave options available in the future. The ID doctor, the hospitalist, and the radiologist were all trying to figure out the best course of action. I once again got cleaned up and ready for the day. This time I packed my bag and prepared to go home knowing that if my line was placed today it meant that I could be discharged.

In the early afternoon, transport came and took me down to CT. The CT itself was uneventful. As we were returning to my room my nurse stopped us and said that interventional radiology was ready for me to come have my line placed. The ID doctor had decided on a single lumen tunneled Groshang, as it provided access that I needed but was a bit less exposed to infection than the double lumen I had had before. Transport turned my bed around and we headed back downstairs to the Cath lab where my line would be placed.

When I entered the procedure room I instantly recognized the nurse that had been present for both my feeding tube replacements the week prior. She was very nice and helped get me prepped. She pulled me off the heart monitor I had been on since I got admitted and hooked up new leads for their machine. She assured me that she had sedation meds ready and would be using them. I was placed in position on the table and my right chest and shoulder were scrubbed with Iodine. (Side note: Iodine is yellow and sticky and it gets EVERYWHERE but it is the only sterile cleaner I am not allergic to so it has to be used).

The interventional radiologist then came in and the nurse administered the sedation meds. She gave me versed and fentanyl which in combination usually sedate someone pretty well. For whatever reason, even after giving me several doses, I was no more sedated than I had been before. This meant that I was awake for the entire procedure. This was the FOURTH time in two weeks that this had happened. Having a central line placed is not the most painful experience in the world, but it is definitely not easy either. A cut is made in the skin of your chest and a cut is made near your collarbone. The tube and guidewire are threaded just under the skin between the two cuts to form a tunnel. The tube is then placed deeper into the vein under the second cut and threaded in until it reaches your heart. Finally the cut near your collarbone is glued shut. Despite the ID doctor wanting a single lumen, to try to limit infection, the radiologist decided to put in a double lumen.

Near the end of the procedure I started feeling pain when I took a breath and I became tachycardic. When the procedure was over then cleaned the iodine and blood off me as best they could and got me back into my bed. As soon as I sat up I started coughing and could not stop. As the nurse took me back to my room the pain in my lungs did not go away and the coughing continued. When I arrived back in my room the nurse was informed of what was going on and said that I didn’t look good. The hospitalist happened to be on the floor and came in to see what the problem was. She ordered a stat xray to check my lungs and had me started on oxygen.

The xray was done and came back normal. They were concerned that i had a punctured and collapsed lung but the xray ruled it out. I was still on oxygen and had been hooked back up to heart monitors, blood pressure cuff, and pulse ox. My respiratory rate was at around 40 (normal is 12 to 20) and it was still extremely painful to breathe. I was monitored closely by several nurses for the next couple hours before shift change. The respiratory therapist even came in to check me out. She said my respiratory rate was at 60 and that it needed to be ruled out that it wasn’t a response to pain. I was given pain meds and things got a little better for a little while.

New nurses came on for the night shift and were informed of what was happening. I should have been discharged after my line but they weren’t comfortable sending me home like this. My mom had been trying to get a hold of me since the afternoon and finally she called the hospital and asked to talk to my nurse. The nurse filled her in on what was going on and why I could not yet be discharged. I was monitored closely overnight.

In the middle of the night I started smelling my tube feeds (which is unusual). I was still in so much pain and my call light was not within reach so I couldn’t do anything about it. The next time the nurse came in I mentioned that I thought something was wrong with my feeding tube. He pulled back the blanket to show a huge puddle of formula all over me and the bed. Being unable to feel my legs, I had no idea that it had been soaking my shorts and gown for hours. A very nice CNA was called and I was helped to the bathroom to clean up. I got fresh things to put on and was given a washrag with warm water and soap to clean off my leg. While I cleaned up the CNA put fresh sheets on the bed and got me a clean gown. After she got me settled back in bed she even tried to wash my shorts and hung them up to dry!

For the rest of the night and the next morning I slept in short little bits. I would get pain meds that would help relieve the pain just enough so that I would fall asleep. A little while later the pain would begin to return and I would be wide awake until my next dose of pain meds. This persisted into the morning and the doctor ordered another xray to check for blood clots or air embolisms. I had been given medication in the night to prevent or break up a blood clot just in case but the pain had not gotten any better. The second xray also came back fine. It was decided that the doctor probably nicked a nerve while placing my line and that it would just take time for it to get better.

My doctor came in a little while after the xray and said that even with being in so much pain I needed to be discharged. She now had patients with Covid-19 and was worried that I was at higher risk of getting it by staying in the hospital. She made it clear that I am an at risk individual and that quarantining at home was the safest thing for me. The afternoon of Wednesday, March 18th I was finally able to be picked up by my mom and taken home.

On Friday the 20th, I had a phone follow up with a doctor at my primary care office. She was concerned that I was still having pain when breathing and was coughing and wanted me to go tothe ER to be evaluated. Walking into a hospital that is quarantined is a little intimidating. There is security at every door and you are escorted, in a mask, by a nurse into the ER. After several hours, bloodwork, an xray, and cultures I was sent home with the same answer I had had before. Everything looks normal, they probably nicked a nerve.

Over the last week I have had several doctors appointments. My GI (who I had a phone appointment with) is trying to manage my tube feeds but my body is not tolerating them, even at a very slow rate. We were hoping to get me off TPN but it doesn’t look like that will happen in the near future. I had another follow up with my primary care (also over the phone) and was told that the pain with breathing should improve over time. On Friday, the 27th I had my two week follow up with the ID doctor. She said that everything looks good and that I can safely stop my antibiotics. I will have another xray to check my breathing pain and one more set of blood cultures to triple check that the infection is gone.

Over the past week a lot has happened at home too. Mom has been deep cleaning and organizing. Dad has been busy building benches and other things out in the garage. My youngest sister moved back home. Two of my sisters painted over the hot pink in one of the bedrooms and she moved in there. This will give each of us our own side of the house and our own bathroom so that we aren’t in each others space so much. I got new baseboards in my room and had to paint a little. I completely rearranged my room, got a few new little pieces of furniture, and finally put on the new sheets and comforter I got for Christmas. My room looks totally different and I LOVE it! We have all spent time watching tv (dad and I started the Mandolorian) and hanging out trying to stay quarantined.

I am still having pain when I breathe and my energy has been super low over the last week. I have been fighting a bad headache/migraine for several days now and nothing seems to help. Overall, I am just notfeeling very well. I have a phone appointment with my primary care tomorrow but who knows how much help that will be. I am incredibly happy to be home and hope that I never have to endure another couple weeks like those again.

Stay Safe!

Hospital, Hospital, and More Hospital

This story begins at the beginning of last week and it hasn’t ended yet.

On March 1st I passed out (as I do) and as I fell my feeding tube got caught on my bed. This caused it to rip out of my abdomen and pop the balloon that holds it in place. After calling the on call doctor at my surgeon’s office I was instructed to head to the ER to get something put in, at least temporarily, to hold the tract and stoma (hole in the abdomen that the tube goes in) open. We headed to the ER and interventional radiology came to place a new tube. This was an extremely painful process and even though sedation was ordered I was not given anything. The tube was successfully placed and I was discharged home in quite a bit of pain.

Fast forward to the next morning. I woke up and the new tube, with the balloon still inflated, was lying in bed next to me. For those of you that don’t know, feeding tubes have a balloon that is located inside the body that is filled with water and prevents the tube from falling out. This particular balloon should hold 3 ml of water and only 1 ml of water had been put in! We once again called the surgeon’s office and as so much time had passed and my stoma had begun to close, once again, interventional radiology needed to be the one to replace the tube. Salem’s radiology department could get me in much faster than Portland’s (where my surgeon is) so it was back to interventional radiology we went.

On March 3rd I checked in for my procedure and found out the I would have THE SAME DOCTOR that had placed my tube with no sedation and not enough water two days earlier. He reassured me that I would be given sedation this time and apologized about what had occurred with the previous placement. I was taken to the procedure room and as things moved along I waited for the sedation to take effect. After the nurse had apparently given me THREE doses of sedation medication I was no more sedated than I had been before. Unfortunately, I was maxed out on meds and there was nothing more they could do. This meant that my tube had to be replaced, with an almost closed stoma, with only the help of lidocaine. Needless to say, this was an extremely painful and traumatic experience once again.

By Friday the 6th I was still in a lot of pain. Once again this warranted a trip to the ER to check my tube. I was given pain medication and an x-ray was done to check the placement of the tube. The x-ray came back and showed that my tube was in fact properly placed and that it was going in the right direction in my intestine. It was concluded that the pain was simply my body’s response to all the trauma of the previous week and that with time it should get better.

Friday night I got the best gift I have been given in a long time. Frozen the musical was at Keller Auditorium in Portland and I really wanted to go. I had been planning on buying the cheapest tickets and going with my mom. Earlier in the week I had remembered that some family friends have season tickets to the Keller. We had reached out and asked if they were planning on using their Frozen tickets and if not could we buy them. On Friday night my mom got a text saying that we could have the tickets and that they were a gift. This was incredibly gracious and I tried hard to pay for them but was told over and over that this was a God thing and I was meant to have them. The biggest piece of information was that the show was on Saturday, as in the next day!

On Saturday, mom and I drove to Portland for the show. When we arrived we discovered that we had great seats. As always with Broadway shows it was INCREDIBLE!! The actors were wonderful and the singing was amazing. The costumes were beautiful and the Olaf puppet costume was creative and perfect. By intermission I was blown away, and then we got to watch a whole second half. I am so incredibly grateful for the gift of those tickets and it was a much needed bright spot in what had been an otherwise very difficult week.

On Sunday I didn’t feel very well. I thought maybe it was a bad POTS day as the previous week had taken a lot of energy. By the late afternoon I was running a 101 fever and feeling even worse. I took some Tylenol and we decided that I would go to the doctor on Monday. The doctors clinic informed us that because I had had a procedure the previous week and was running a fever I needed to go the the ER once again.

On Monday afternoon I went to the ER and after waiting a while was taken to a room. The doctor decided that we needed to run a flu swab and some blood work to check for an infection. Everything came back fine and the doctor ordered blood cultures to make sure that my central line wasn’t infected. I hadn’t even thought about my line being infected and was now worried that this might be the case. Blood cultures take several days to process and we were told we would be called with the results. The doctor said he was pretty sure I just had a virus and would get better with time.

On Tuesday afternoon I got a call from a nurse in the ER. After less than 24 hours my cultures had come back positive for infection. She told me that I needed to return to the ER for repeat cultures to make sure that the first cultures were not positive because of contamination. After mom got home from work we headed to the ER. After waiting for quite some time I was taken to a room. As we were taken to the room I was excited to see that my favorite ER doc (I know that sounds ridiculous but he is so great) was working and would be my doctor. After discussing things it was determined that I needed repeat cultures done and needed to be started on IV antibiotics right away. Due to the fact that my line was presumed infected it was deemed unusable which meant I would need to be admitted to receive the necessary medication through an IV.

A little after midnight Wednesday morning I was finally taken to an inpatient room. I was hooked up to heart monitors and started on a heavy duty IV antibiotic. Mom ran home and got me some necessary hospital survival items (toothbrush, pajama shorts, grippy socks, my Kindle, chargers and other things to pass the time). She came back to drop things off and a little while later headed home to get at least a few hours sleep before she had to go to work the following morning. I was reminded again that I am incredibly lucky to have such supportive parents that are with me through this journey.

The following day the infectious disease (ID) doctor (who manages line infections) came to see me and share what the plan was. My cultures from the ER came back positive for bacteria once again so this was a true case of bacteremia. She told me that as my central line was the likely culprit it needed to be pulled. She also told me that I would have to have negative cultures for at least 48 hours in order to get a new line so that I could be discharged and do the rest of my IV antibiotics at home. Later I met the hospitalist and she agreed that the first thing we needed to do was pull the line and culture it.

Another issue that has come up is nutrition. I was on TPN, which can only be run through a central line. I cannot get enough nutrition through my feeding tube but we are slowly working on increasing the rate. This means that I was getting hardly any nutrition. As a result we have started PPN which is similar to TPN but can be run through a non-central line. With all these IV meds and IV nutrition I require a good IV. Unfortunately, I have now gone through FIVE IVs in the last 3 days as they keep blowing. Earlier today they placed a mid-line which is between an IV and a central line. The hope is that because this is a line in a bigger vein it won’t blow.

Now it is Friday afternoon and I am still sitting here in the hospital. The ID doctor was by this morning and said that my cultures from 2 days ago are still growing bacteria despite me being on antibiotics. This could mean a few things. 1. The infection is more aggressive and will take longer to clear, 2. The infection is also in my feeding tube or the surrounding tissue, or 3.The infection has seeded into my heart and will require more intensive treatment. A little while ago they did a CT scan to check my abdomen for infection. If it comes back negative and my cultures continue to be positive through the weekend then we will do a scan of my heart to make sure the infection is not there. If it comes back positive they will pull my tube and do what is necessary to clear out the abdominal infection.

I am physically feeling OK with minimal pain and nausea. The nurses have been wonderful and I have had a few visitors to help make the time go by faster. I am however getting quite tired of being here and the knowledge that I will be here at least three more days is not helping. Hopefully the infection begins to clear over the weekend and I will get to go home early next week. I will try to provide an update at some point next week.

Isis the Service Dog

In honor of Isis’ 9th birthday last week (February 14th) and our Seven year Teamiversary this week (February 21st) I thought it would be appropriate to do a post all about Isis.

While I will post more about the past of my mental and physical health journey in future posts I will start by saying that I was diagnosed with PTSD in 2012 after an awful malpractice situation. Months into my PTSD things were continuing to go downhill, even on meds. I was depriving myself of sleep to avoid vivid nightmares and the sleep deprivation was causing me to hallucinate my nightmares during the day. I was experiencing paranoia that I was being watched and followed and always felt like everyone around me was about to hurt me. I was having severe anxiety attacks multiple times a day and was having dissociative episodes when I lost all awareness of my surroundings. Things got so bad that I started missing classes because I was too scared to leave my apartment. That is when someone told me that there were service dogs trained for people with PTSD. In the days that followed I began discussing the pros and cons with my parents. They were absolutely on board with anything that helped me get my life back and encouraged me to look further into it. I quickly found a trainer who I spoke with multiple times that said he had a dog ready that had been trained for anxiety/PTSD work. After talking it over with my roommate I made the hour drive to Huntington Beach to meet this dog and see if we could bond and become a team.

I had been told by the trainer that the dog was a boxer. Female boxers weigh on average 50-60 pounds. When I walked into the trainers apartment I saw a MASSIVE dog sleeping on the couch and instantly thought, “this must be another dog he is working with.” That is when he called Isis over and the HUGE dog slowly got off the couch and came to great us. In this moment I was informed, for the first time, that Isis is a Boxmas, a boxer/mastiff mix. She weighed closer to 130 pounds and stood much higher that I expected. After okaying everything with my roommate Isis and I took a walk around the complex to get to know each other. I knew five minutes in that we would have a bond like nothing I had known before. I could feel the peace that I felt with her and felt like she knew it too. After a few hours of training work, Isis, her bed and toys, and some dog food were loaded into my car. She took up the entire back seat!

Due to some issues I was having with the campus disability services, and me still not completely knowing my rights as a service dog owner, I was not able to take Isis back to my on campus housing for several nights. In the meantime one of my great professors, Dr. Kinnes, stepped up and took her in. He called her a beast the first time he saw her but I know he loved her as much as I did. For the next several years Isis would go to Kinnes’ house at least once a week for a playdate with his dog Stormy and time to just be a dog.

When things finally somewhat resolved themselves with the school, or enough of my professors told me they would back me if anything happened, Isis moved into the small one bedroom apartment that my roommate Tracie and I shared. She claimed the couch and had a twin sized mattress all to herself. We had a few training hiccups when she refused to follow even the basic commands. I called her trainer and he instructed me to try the commands in Russian. Now, I don’t speak Russian but I learned the words I needed the best I could (thank you google translate!) and we tried again. To this day Isis knows that mama means business when she commands in Russian.

Over the next several weeks our bond continued to grow and Isis began to do things that surprised me. She started alerting before I had a panic attack and was able to stop them before then became anything beyond anxiety. I started sleeping again and felt safe going to class with my girl by my side. She even started waking me up from nightmares and helping me get back to sleep. She would help ground me when I was dissociating and would push me away from large groups of people. She changed my life overnight and I couldn’t believe the new found freedom she gave me.

My professors were super supportive and loved having her in their classes. Some of them even started keeping treats in their offices just for her (Prosser and Wilson). I could walk into the science building (my second home) and tell her to find one of my professors and she knew just where to go. She allowed me to attend night classes without fear that I would be hurt in the dark. She allowed me to focus in class because I knew that she would let me know if anyone came up behind me and would protect me from harm. She even helped me make some friends as she was an easy way to get the conversation started. I was able to go to chapel and listen to the speaker and take part in worship because I wasn’t worried about having an anxiety attack or thinking about all the dangerous people that could be hidden in the crowd. She became a celebrity on campus as she was the first service dog the school had ever had and people were always coming up saying they had heard about us or seen our picture online. She went everywhere I went and gave me the freedom to live my life again.

Over the next several years Isis and I shared many experiences. We were illegally denied service at restaurants and businesses and I learned to stand up for myself in a way I had never been able to do before. We found out that Isis loves cheeseburgers, bread, and whipped cream (which can be great rewards). We lost some friends who couldn’t understand why Isis was something I needed in my life, but we also gained some AMAZING friends who supported us through some challenging times. (Thanks Cynthia, Amanda, and many others!)

For the last seven years Isis and I have had some amazing adventures! One summer we got to be part of a school program in Washington called Au Sable. We lived with my Grandma Peggy for 7 weeks and got to travel all over beautiful Washington. We went camping together for the first time and both experienced our first hornet stings when out on a hike. We both got used to wearing hiking shoes and got to play in some amazing waterways. We rode the ferry and got to learn all about the environment and about what it looks like to be a woman of God. We made friendships and played as much as we could.

Isis and I got to nanny very special twin girls, Emma and Alyssa, and spend a lot of time with their family. When I started watching the girls I had not yet gotten Isis but when I did they welcomed her into their home as if nothing had changed. The girls weren’t so sure of this massive dog at first but Isis quickly grew on them and even let them dress her up as a princess and paint her toenails. Also, Vicky and Joe were the family support we needed being so far away from home.

At school Isis, the local celebrity, got to be part of the research team I was on with Jenessa, who quickly became Auntie J. We visited streams and other bodies of water and tested the water for their level of pollutants. Isis loved hiking with us to get water samples and laying on the cool tile floor while we tested all the samples. She got to be babysat by some amazing aunties when I had to have procedures done or was somewhere it wasn’t safe for her to be. She got to take all my classes with me and study during our many study sessions. In the end, she even got to graduate with me. The first service dog to walk across that stage! Even after graduation, Isis paved the way for other service dogs at the university to be accepted without the challenge we had.

We were also incredibly blessed in our last year of school to live with a spectacular woman in her beautiful home. Isis and I rented a room but had most of the house to be in. There was even a fenced back yard for Isis to have freedom to play. Margaret, the woman we lived with, was in her 90’s and still so independent that she tried to help take care of us. She would even sometimes make Isis her own eggs in the morning for breakfast. She was definitely a safe place for us in what became a challenging year.

Since graduating Isis and I have gotten to travel quite a bit. Isis had her first plane ride when we flew to Arizona to get help at the Mayo Clinic. She experienced cactus’ for the first time and discovered that they are not something you want to get too close to. She drove to Stanford to be there for the several days I was admitted to the hospital for testing. She helped move Haley into college in Arizona and even got to go to the Grand Canyon. We flew to Ohio to see a specialist and had some fun nights in the hotel. We got to travel to Washington D.C. to go to a POTS conference. We visited the White House, Arlington Cemetery, the spy museum, the Holocaust Museum, The Smithsonian, and the Natural History Museum. We went on a road trip while in D.C. and went to several east coast states making sure to get out of the car at each one. We went to the Hershey factory and had wonderful ice cream at a dairy in rural Pennsylvania. We have been to Bend several times and gotten to play in the snow a few times. We even got to go back to visit in L.A. and went to Disneyland. Isis got her Minnie ears, posed in front of the castle, and even got to ride a few rides (Dumbo, Its a Small World, Jungle Cruise).

Isis has become a part of life at home too. My parents (Grandma and Grandpa) have been wonderful in accepting her and from the first time they met her they fell in love. My sisters took a bit longer to adjust to me having a service dog but now they are amazing aunties who Isis adores. Isis has loved going with me to my mom’s elementary school classroom and getting read to by the kids. She adores all the attention and excitement from the kids each time she arrives. She has loved (or at least put up with) our team Halloween costumes and tolerates me dressing her up for each holiday. She has even been an wonderful big sister to her little brother, Apollo, that is in training to take over for her when she retires.

Isis has been there for doctors appointments and procedures too numerous to count. She has come to visit and lift my spirits many times when I have been in the hospital. She has laid in bed beside me when I just need time to rest and has been there to cuddle when I need her close. She has been my almost constant companion since the day I got her.

As Isis has gotten older she has begun to slow down. These days she much prefers to take several naps a day and eat whenever possible. She loves eye rubs and snuggles and occasionally still plays with her favorite Sven toy. She is the most wonderful, loudest snoring, bed hog and I can’t believe that I ever had a life before her. Isis saved me seven years ago and has continued to do so everyday since. She is my best friend and safety net. Thanks Isis for an EXCEPTIONAL seven years, here’s to many more!! Happy Birthday and Teamiversary my beautiful, chunky girl.

  • First Week with Kinnes
  • One of our first Doctors Appts
  • In the back of the car
  • Sleeping in Class
  • Begging for treats from Prosser
  • Cool Floor Break
  • At Au Sable
  • Lavender fields at Au Sable
  • Funny Faces in the Car
  • College Graduation
  • College Graduation
  • Christmas in LA
  • Fall Fun
  • First Airplane Ride
  • At the Mayo Clinic
  • The Grand Canyon
  • Happy Flag Day
  • The White House
  • The Air and Space Museum
  • Dinner after a long day in D.C.
  • In the backseat in D.C.
  • In Philadelphia
  • Pennsylvania
  • Comforting Mom in the Hospital
  • At Church
  • Goofing Around
  • At Church
  • Scooby Doo for Halloween
  • Visiting in the Hospital
  • With Mom at the Doctor
  • Visiting Grandma at Outdoor School
  • Visiting Mom
  • Lion for Halloween
  • Back Visiting Campus
  • Disneyland!
  • On It’s A Small World
  • Small World
  • Small World
  • Dumbo!
  • Snuggling Sven in the hotel after a long day
  • Beautiful lady
  • In Grandma’s Classroom
  • At the Beach
  • Visiting Mom again!
  • Sun Bathing
  • Snuggled with my favorite toy
  • Sven for Halloween
  • Sven and Olaf
  • Such a Great Big Sister
  • Big Sis and Baby Brother
  • Beauty and the Beast and the enchanted rose
  • Enchanted Rose for Halloween
  • Lazy Day on the couch
  • Auntie J came to visit
  • Chilling at home
  • Looking Beautiful
  • Happy 9th Birthday!
  • Cheeseburger for our Teamiversary
  • Happy Seven Years!

Life Update

Again, let me start by saying sorry for the long gap in time between updates. I am still not in the habit of writing and something else always distracted me at the last minute. Hopefully I will get better at being more regular.

Since my last update I have been recovering from surgery. I won’t say that this process has been easy, but I am at a point where most of my post-surgical pain is gone. The incisions no longer hurt and I can move around like I could before without extreme pain.

I am having some issues though. My Jtube is still painful. There are days when the pain is minor and I can go about life as I please. There are also days where the tube burns and shoots pain every time I move and I have to be extremely careful not to bump it on anything (even my shirt). This is a pain that I was used to dealing with when I had my previous tubes so I hope that it will get better or that I may ultimately not need the tube at all anymore.

I was extremely hopeful going into surgery that it was going to completely transform my life for the better. While I know intellectually that this is a slow process it doesn’t make bad days any easier. At the moment I can still take in very little by mouth.

I was not getting enough nutrition through my feeding tube and so I am now back on TPN (which stands for total parenteral nutrition). This is essentially IV nutrition that contains everything I need to survive. This first off meant that I had to have a central line placed. The doctor ordered a PICC line (a line in your arm) but due to the issues and pain with the last PICC placement the doctor performing the procedure decided he wasn’t even going to try a PICC. This means that I now have a central line in my chest. (A dual lumen tunneled Groshong to be specific) The procedure was very easy as I was properly sedated (I have not always been in the past) and the pain afterward was very minimal. I started out running TPN for 24 hours a day as my body adjusted to having full nutrition again. After a couple weeks I moved to running it for 18 hours and having a 6 hour break. I now run my TPN for 12 hours a day (at night) and have a 12 hour break. Each week a nurse comes to draw blood to run all kinds of tests to see in the TPN formula has the right amount of key nutrients or if the formula needs to be slightly changed. Other than a risk of infection the only real downside is that I have to test my blood sugar 2 hours into the infusion and 1 hour after disconnecting to make sure my body is responding appropriately to being connected and disconnected. My fingers are now all bruised and sore but I guess that is a small price to pay for life sustaining nutrition.

Along with being on TPN I am attempting to eat more and more. My first post-op appointment went well and I have been cleared medically to eat anything I want. At first this sounds like a very exciting step but unfortunately my body is not tolerating much of anything. I can drink most things (except carbonation) as long as I do so slowly. I can eat small amounts of soup (that has been blended and strained) and small amounts of crackers (that dissolve easily). I have tried small salads, baked potatoes, and a few other foods and while some of them stayed down there was a large amount of pain shortly after eating. Other times these foods cause me to throw up. I am currently on 4 different nausea meds and none of them really does the trick. I have met with both a dietician and my GI doctor and both told me to continue trying to eat. Just because something makes me sick once doesn’t mean it won’t sit well the second, third, or umpteenth time.

I have also now started battling a new symptom. After having severe pain in my abdomen I finally ended up in the ER this past weekend. After running blood tests and doing a CT scan the doctor assured me that nothing is urgently wrong and that nothing appears surgical. I do however appear to have ulceration of the small intestine. We knew this was a potential complication of my surgery but thought we were past the point of it occurring. I am now on high dose omperazole to help with the ulcer and have some pain meds for the days before it kicks in. I may require another endoscopy to further assess the damage but am waiting to hear what my surgeon would like to do.

While I know that it can take 6 months to truly know how effective this surgery will be and what long term eating looks like it is still difficult that things are not going super well right now. I am going to be honest and say that depression is something I have battled for years and right now it is really bad. I often feel worthless and like I don’t deserve to be healthy. I worry that this is the best it will ever get and feel weary of living a life in pain and suffering. There are days where it is a struggle to get out of bed, both physically and emotionally and days where the last thing I want to do is be around people. There are also days when I think, “I can do this” and “at least I have my life”. I want to be clear, I can be in the darkest depths of my depression and NOT be suicidal, so don’t worry about that. Depression sucks all the life out of you and puts thoughts in your head that have no place being there. I am lucky that I have access to a great therapist and my parents and a few good friends that are there when I need to talk or cry about how hard things are. Even on my darkest days there is a little light left saying “it will all work out”. I don’t know what everything working out looks like but I am hopeful that a time of happiness and health is still in my future.

Thank you everyone for joining me on this journey and caring about where the road leads! I couldn’t do any of this without the people around me.

Surgery Update

Sorry for the long delay in updating after surgery but it has been a rough couple weeks. I had every intention of blogging while I was in the hospital and even took my laptop with me but was not up to it at all.

So, here is the update. Surgery went well. It took a little over 5 hours to complete. Just before they closed I had a lot of unexplained bleeding which they were able to stop without knowing the exact cause. This meant a bit more monitoring in recovery and for the next 24 hours to make sure the bleeding didn’t start again.

I asked my surgeon before surgery if he could take a picture of my stomach once it was removed. He said he would try to remember. When I was taken into the OR I asked all the nurses to please remind him. After surgery one of the first things I asked was if they got a picture and they did! My stomach was very enlarged and extremely misshapen which explains why I had so many problems with it. (I will include the picture at the very bottom so that those that don’t want to see it don’t have to)

I spent 9 days in the hospital. Some of those days I have very little recollection of. I apparently even had visitors that I don’t remember coming. In the hours following surgery they struggled a bit to keep my oxygen levels up so I was put on oxygen. They also struggled a bit with pain management. Not all the nurses were good at keeping to a schedule and I am not always great at communicating when I need meds. I slept a lot in the first week and didn’t have much energy to do anything. I managed a few games of phase 10 with my parents but that took a lot out of me. We also struggled with nutrition. My tube feed rate had to be pretty low for me to tolerate it and I could only take in sips of liquid by mouth without getting sick.

After 9 days the doctors felt like my risk for complications had passed and let me go home. The drive home was not as painful as I expected it to be and we made it home without too much traffic. Mom stayed home with me the first day and Dad the next two so that I wasn’t home alone for the first week. They were able to let the dogs in and out, so that I didn’t have to go up and down the stairs, and to bring me little bits of broth throughout the day.

This week I have been on my own. The pain gets a little better each day and I can move a bit easier. I got my stitches around my new feeding tube out on Monday and that has helped with some of the discomfort as they were pulling and inflamed. My nutrition is still really poor and we are waiting for the doctors to decide how we are going to handle this. I continue to lose weight and feel weak and tired due to poor nutrition. My tube feeds are going well, other than the fact that the rate has to be very slowly increased or I deal with extreme pain, but are not enough to be 100% nutrition. In fact, right now my tube feeds are only giving me about 40% of my daily calories. I am trying to take things in by mouth but can still only take sips of liquid without getting sick.

We are all hopeful that things will continue to improve. I am hoping that the pain will go away and that I will be able to consume more by mouth. We won’t know for several months what my new normal will be but are hopeful it will be better than things are right now. Some days are more discouraging than others but right now we are taking it one day at a time.

Warning: Photo of my stomach is below

Goodbye Stomach

It’s happening. My dysfunctional stomach will be leaving my body on Monday!

To back up a little, I have been battling Gastroparesis for the past couple years. For me this means that I have a difficult time eating, as it causes nausea, bloating and severe pain. This has lead to damage in my throat and teeth from throwing up so much. As a result I have a G-tube that goes through my abdomen into my stomach that allows me to drain my stomach to avoid throwing up. The unfortunate thing is that food tends to get stuck or not fit through the tube making it nearly impossible to drain. This means that when I eat I risk getting nauseous without being able to drain and end up throwing up anyway.

I also have my J-tube to allow me to get nutrition through my small intestine. The unfortunate thing with my J-tube is that is causes me constant pain and frequently I have issues with tube feeding. I have had to change formulas 4 times in the last few months as the formulas were either clogging my tubing or were creating problems in my intestines (such as severe pain). I have also had to get new pumps twice as my pumps have stopped pumping formula. The current pump I have will sometimes run all day with no problem but not actually move any formula meaning I am hooked up for hours without getting any nutrition.

The Gastroparesis also comes with a lot of mental/emotional stress. Not eating is extremely difficult. I no longer have the feeling of hunger, even when I have not eaten for days. However, the craving for food, or more specifically the desire to eat, is still there. I know that consuming food will cause severe pain and nausea but sometimes I want to eat so bad that I give in. This hardly ever ends with anything but me curled up in a ball, with agonizing stomach pain, with a barf bag next to me. There is also the carrying around a backpack all the time with my pump and formula. You would think that it would get easier and feel like part of you. While I often feel like I am missing or forgetting something when I am not tube feeding, I HATE carrying my backpack around all the time. I hate how it draws people’s attention. Overall, it isn’t easy to be a tube fed individual.

The other piece that I often struggle with is the impact that Gastroparesis has on my life in other areas. I hate that when I am in public people see my tube before they see me. My tube is part of me, but it isn’t all of me. I have random strangers ask me what the tube is and why I need it. While I don’t mind educating people, it sometimes gets old having to share personal information with people you don’t know. I miss the pre-sick days when I could wander around the grocery store and be just another person, without stares, comments, and questions about my service dog or medical equipment.

I also can’t stand being dependent on medical equipment for my survival. Don’t get me wrong, I am extremely grateful for (and at times love) my feeding tube and the medical supplies that allow me to continue living. I don’t however love being dependent on something to maintain my life. I guess you could say I have a love/hate relationship with my feeding tube.

Over the past two years I have had surgeries to try to help with my gastroparesis. I have had several tubes placed to help me get nutrition without needing to use my stomach. I have had a pyloroplasty, which essential weakens the sphincter at the base of the stomach so that food passes more easily without needing stomach contractions to force it through. Unfortunately, while these things have improved my gastric motility some or have helped maintain nutrition, none of them has been a solution.

That is where my next surgery comes in. We have exhausted all the non-surgical and other surgical options and at this point have decided that the best course of action is simply to remove the offending organ from my body. On Monday I will be having a gastrectomy with roux en y reconstruction. This essentially means that my stomach will be removed and my intestines will be moved around to accommodate for the missing parts. This is considered a major surgery and will take at least 4 hours to complete. My surgeon is amazing and barring complications (such as excessive scar tissue) the surgery will be performed as a laparoscopic procedure. This will hopefully make recovery a bit easier. I will be in the hospital for at least a week post-op. There is always risk of complications, in this case that mostly means leaks developing along my digestive tract, but my parents, surgeon, and I have decided this will give me the best odds for a better quality of life.

The hope for after surgery is that I may someday no longer be dependent on my feeding tube. My tube will remain in place for a while. I will not be able to take much by mouth (other than small amounts of liquids) in the weeks following surgery as my digestive tract heals. I will then try advancing to easy to digest foods. If all goes well I will be able to try eating more solid foods. There is a chance that several months from now I may be able to eat a near normal diet, just in smaller and more frequent meals. There is also a chance that I could end up tube dependent for the rest of my life. At this point we have decided that this is a risk I am willing to take.

The most common question I have gotten recently is ‘How are you feeling about the surgery?’ The honest answer is that I am more excited than nervous. I am ‘cautiously optimistic’ (as my POTS specialist always says) that this will greatly improve my life. I am more nervous about the recovery and how much time I will have to spend in the hospital than I am about the surgery itself. I have spent a lot of time in hospitals and it always stresses my out. I have had nurses and doctors that were disrespectful and not understanding of the complicated medical conditions I have nor willing to take the time to ask and learn. While I know that my surgeon is wonderful, I can not be sure that all the other medical personnel will be as caring and understanding. My PTSD also means that I am often anxious in medical settings and distrustful of new people which makes hospital stays difficult. Finally, I am nervous about pain management. Part of having POTS means that my body responds differently both to pain signals and pain medications. After previous surgeries I have found myself in a lot of pain that is difficult to manage. We have already met with a team that will be monitoring my in hospital care from the moment I am admitted until I go home. They have assured me that they will do everything to ensure that my pain is well managed, but I am still a bit nervous about it.

So, on Monday, I say goodbye to my stomach and hopefully hello to a whole new and much better future.

My Average Day

I really didn’t know where to start for my first real blog post. I decided that I needed to start by explaining what life is like for me right now. The problem is that it is difficult to explain what living in this dysfunctional body is like to able bodied people. I was recently asked by someone what keeps me going. I gave some response about my family and my faith but, while these things do help, the real answer is that I keep going because I don’t have a choice.

Daily life for me usually begins with waking up exhausted and in pain. Some days I sleep as late as possible. In part, this is so that I don’t have to be awake and face the reality that my life is nothing like I thought it would be. It is also an attempt to make my body less tired. In the end it doesn’t really matter how much time I spend in bed I am always exhausted.

After waking I have to take my meds and prepare my tube feeds for the day. While there are days where I choose not to tube-feed (although I need to) most days this is necessary. My pump is plugged in all night while it runs so that it doesn’t need to be plugged in during the day. Each morning I need to change to a new feed bag and add a new supply of tube feeding and water. The water is necessary both so that my tube does not get clogged and to help me get some much needed hydration. My feeding tube bag and pump stay in a backpack that has been altered to hold them so that it is easier to be mobile during the day. I am also in the process of slowly increasing my feed rate in an attempt to get to a point where I am getting adequate nutrition in a day. This means calculating what the total volume over the day is based on the new hourly rate.

After setting up my tube feeds my day can really begin. On a good day this means getting dressed. On a bad day I often stay in my pajamas all day. I usually start the day with a cup of coffee (one of the few things I can usually keep down) which helps stave off my migraines. Sometimes, if it is a good stomach day, I may make myself an egg for breakfast.

After all of this I head back to my room, where I spend 90% of my time. I will sometimes read a book for a little while (I try to read at least 2 books a week) or I will watch tv. I spend most of my day sitting in bed, sometimes playing games on my phone or coloring in a coloring book. Often when I tell people that most of my time is spent in bed watching tv they respond with ‘I wish I could spend my day like that!’ What people don’t understand is that lounging in bed all day is fun for a day or two when it is a CHOICE. When you are stuck in bed all day it is not fun and it gets old really fast. I often find myself looking at the clock counting down the hours until I can go back to sleep and escape my reality.

Sometimes, on a good day, I may get out of the house to go to starbucks or to visit my mom’s classroom for a few hours to work with the kids. This can be a nice break from the monotony of staying in the same room day after day, but it is also a reminder of the fact that I am not nearly as independent as I would like to be.

The evenings are often spent in the same room that I have spent my entire day. I sometimes am able to eat a little something for dinner, but not always. On some days I will help my mom grade papers or we will watch a show together on tv. If I am feeling exceptionally energetic (and it is not raining too much) I may even take my puppy, Apollo, for a walk.

After a day that looks pretty much the same to every other day I once again make sure that I have enough tube feeding formula to make it through the night. This means adding another bag and more water. Then I will plug my pump in for the night, take my meds, maybe read for a little bit, say goodnight to Apollo, and turn out the light. I then spend the night trying to sleep as much as possible before waking up and doing it all over again.

There are days when I get out of the house, to go to the grocery store or to a doctors appointment, and rare occasions when I spend time with friends. All of these things take spoons. When I hang out with other people or spend time away from home I often pay for it the next day or the next week, which is sometimes worth it. In the end most days look the same as every other day. So to honestly answer the question of how do I keep going day in and day out? I don’t really have any other choice but to keep going in the body that I am stuck in.