12 Weeks Proud

Well folks, I have made it to 12 weeks. I feel like every ache, pain, scar, itch, etc. is all worth it when I down a plate of French fries from In N Out or Red Robin.

I am able to eat a bit more variety these days. I tried P.F. Changs the other day with a cousin of mine. I had the chicken fried rice and it was amazing. No trouble with bloating or distension. I also have been able to eat a family recipe of green chile stew that I love and had to avoid the last several years because it would cause so much pain, bloating, distension, and it felt as if it just sat in my belly for days. No longer :-) And of course, as I mentioned earlier, hamburgers and French fries with no regrets later. I am taken aback at times with how well I handle things that were so frighteningly painful before.

I can't report any weight gain or changes at this time. My appointments are beginning to be further apart. I enjoy that a lot. I will see the gastroenterologist as well as the Medtronic rep who is guiding my doctor through checking the status of and possibly adjusting my gastric stimulator on November 14th. I plan to have a good report.

I will say that I still deal with a lot of pain. There is a lot of cramping as well as continuing incision pain and extreme tenderness around the pocket that holds the device. Most times I eat (at least 98% of the time) it feels like I drank a cold glass of water and went for a quick sprint. It can last anywhere from 30 minutes to a few hours. I was told that is just the stomach itself getting used to moving again and possible getting used to the electrodes. I assume for someone as sick and weakened as I at the time of surgery, it would definitely take a great deal of time to rebound.

Emotionally, I am still on a roller coaster. I am so thankful for this new life. It is so difficult to wake up in the morning and still not feel refreshed. That's an issue I have had for a while and may not be directly linked to the gastroparesis or malnutrition. It is difficult to have that cramping after meals because I wonder if there is something wrong. That is probably a direct reflection of my personality. It is difficult to feel the pain of the surgery and the device in the shower, in bed, as I am dressing, when I tie my shoes, when I sit down.....it could go on. It is just an adjustment. I believe the pain is a way to get me used to the ways I need to modify my movements and actions to accommodate for the device in the long term. If I get in the habit of protecting it and favoring it due to pain now, it will be a habit by the time the pain subsides so I will continue to modify my actions.

As I go around and establish with new doctors in the area I find myself feeling alien in this world. Although many doctors have heard of the device, it is clear in talking to them that they really have a very basic idea of what it is. That carries over into everyday life because most people have no idea what gastroparesis is let alone a gastric stimulator. When I say I have just had surgery three months ago, I am looked at as if I should be back to normal life. Inquisitive eyes follow me often, but never ask any questions. In talking to a friend who has a rare illness that is very different than my own she said she says, "Believe me, it is more awkward for me than you." I found that to be a funny response.

I walk around this thin 30 year old woman. I am often dressed in athletic clothing because of the elastic waste bands and their comfort for my situation. I am picky at the grocery store, picky at restaurants, and often do not accept drinks or snacks at friends or families offer. For those who do not know, I can only imagine what thoughts run through their minds. I feel the need to constantly defend myself or justify my behavior. Then I battle myself thinking I owe them nothing and I have earned my stripes. A Type A people pleaser at its best may not be very conducive to chronic illness and rehabilitation for major injuries.

Ultimately, I have made it this far. There are ups and downs but that's life with or without chronic illness. These battle scars are a reminder of how strong I am physically and mentally. They are a reminder to take it easy or a free pass that I fought and scavenged for and fully deserve. Whatever we face in our days, take time to look back and pat yourself on the back for accomplishments others may not have noticed. Accolades do not always come in the form of trophies or certificates- they come in the form of a satisfied belly after a meal, or the smile on my son's face when we pull up to a pizza place he enjoys. It is great to see the sun rise everyday and know I have another chance to live this life.

Life wins

Time sure does fly. I am officially about 10 weeks out of surgery as of tomorrow. Internet was down for a bit so there was a lapse in my posts. I wanted to give an 8 week update and then move on to regular blog posts and monthly then yearly updates of the progress on my gastric stimulator. Life happens and here we are. So we'll go with a 10 week update.

I have now made almost all the rounds to all the specialists I need to see and/or establish with in Texas. Of course my endocrinologist and gastroenterologist were already familiar with me due to the surgery and hospitalization. I needed to be established with a rheumatologist and a neurologist. Both of which I had very interesting encounters with I am sure you would enjoy, but I'll get to that after the update.

Things are progressing well. I am now officially independent. My mother-in-law, who was here for additional support with household chores and womanly things, went home the first week of September and within a few days my husband returned to work full time. This means I am back to being stay-at-home Momma making meals, cleaning, dishes, and daily errands. Anyone whose knows what it is like to run a household can appreciate how hard it is; I now have a new appreciation for how difficult it is and myself (pat on the back).

I have been increasingly sore and tired. Let me say that I am taking it very slow. This is just a surgery that entails a lot of adjustments along the way. Little things like getting dressed, putting on shoes, getting in and out of a vehicle, standing in lines, and long conversations all use your abdominal muscles a lot more than we realize. The bending and twisting and stretching and stabilizing all takes extra effort. I can feel it all, but will try to hold on to the memory of these feelings as an eternal appreciation for the miraculous human body.

The cramping of my actual stomach is starting to subside. The muscle that hasn't been used in years had been prominently reminding me of it's weakness as soon as I tried to eat soon after the surgery. In the beginning it was a constant cramp as if I had drank a glass of water and sprinted down the street, but it has moved towards a sporadic cramp once or twice a day after a challenging meal. A challenging meal is anything larger than a pediatric sized meal with any normal amount of fat. Because I was used to a minimal diet of very basic, bland foods I am able to avoid this fairly easily, but as my appetite increases and my body craves more I am challenging my thriving stomach as recommended by doctors and reps from the manufacturer of the gastric neurostimulator. Depending on who you speak with the device can be referred to by many names i.e. gastric neurostimulator (the box reads this), gastric stimulator, stimulator, gastric pacemaker (which it is not).

The incisions themselves are mostly healed and closed. When I saw my gastroenterologist yesterday those were his words. I feel them; tender, sensitive, tight. The pocket where the device is has tightened up. The swelling has gone down enough that I can somewhat tell what it will look like for the duration. In saying that, it is close to my belly button, hip bone, and lower ab of a six pack (which I don't have either I just do not know the technical term) so it is an adjustment. A twist, a turn, a stretch, or a bend can push it in an awkward way or pinch the tender tissue inside the pocket. I assume that will lessen in time as well. It is bearable and probably a necessary evil to help me adjust my activity to accommodate my new addition.

Now, you are curious about my eating and weight aren't you? Well, breakfast is the same (a protein shake and a banana), but much more comfortable. I also wake up hungry most days. Before the surgery my appetite was nonexistent. I am adding more variety to my other meals. Meats, especially red meat, was a real challenge before. I always felt like it sat like a brick in my belly. Now, I even crave it sometimes. I have stuck to shredded beef and ground beef. I am able to eat chicken and pork more regularly as well, but again in small portions and usually ground or shredded in some way. I still enjoy the staples I got so used to such as eggs and smoothies very often. Sometimes that chose is made by my appetite and sometimes it is made out of necessity (need to eat overrides desire to eat). And most importantly, at my appointment yesterday I officially broke the 100 mark. Although, I don't think specific numbers are important here because every body is different, that mark to me was a major goal. In total I have gained 5 1/2 pounds. From here on out I will only refer to my weight gain in numbers but no need to divulge my weight. This blog is meant to inspire, inform, and connect people and I intend to stick to that aspiration.

Let's move on to something I thing is crucial for anyone going through this same situation or something similar that can relate. The emotional side. It is a roller coaster just being chronically ill. It has been an even more eventful roller coaster this last year on this journey that lead me to Ft. Worth, Texas and the gastric stimulator. And the ride does not stop there....at implantation. The physical pain does a number on your psyche. I can and have said this surgery is equivalent if not worse than childbirth and I do have a child I birthed. The recovery is long.

Imagine getting up every single morning and stubbing the same toe. Stubbing a toe hurts, bad if done right. First thing in the morning, that puts you in a bit of a bad mood for a bit. Then the pain lingers and lingers throughout your day only getting worse as you tire. By the end of the day, you want to throw in the towel, put your foot up, and hope tomorrow is better. That's a bad analogy, but you get the idea. The twisted thing about this recovery is that the body is now getting the nutrition and substance it has been needing for so long. This means the mind recovers quicker than the body; your mind runs on glucose. So the mind becomes willing as soon as the pain is bearable enough to push through, but the body is not capable of "pushing through" as of yet. This leads to frustration and feelings of guilt and inadequacy in certain areas.

Moving on to being a woman going through this........gaining the weight. I am going to be more candid in this than I would prefer, but people seeking connection and validation need to know this. I have been unhappy with my appearance for years. First, it was the weight loss and that it was happening so quickly. Then, it became the fact that I looked sickly thin. Also, the pain in my belly lead me to wear looser fitting clothes than I had before and has kept me limited in that area. I have longed for a more womanly figure for a while now and all I need is a little weight to get there. I also know I need weight to function and live- not only is that fact known academically but I also physical felt extremely weak. Now, the weight is coming on just as is intended. 5 1/2 pounds in a little less than four weeks is a lot for a woman to take in, especially a woman with a Type A personality whose minds never stops. My mind runs straight to the worst case scenario.

What would be the worst case scenario? I ask myself as I am struggling with this happy/sad feeling I got last night after the elation wore off from a good doctor visit. Is there one? Then I think, "No..." I am so grateful for this new lease on life. I am so thankful for the time I have with my family. I am so thankful I am not declining with no answers, resources, or support. I am so thankful to have some normal meals and be able to leave my home for more than a few hours at a time with less fear. It is a battle between vanity and life. Ultimately life wins.

Vanity, I am learning, goes out the window. It should have long ago, but I am a 30 year old woman living in our society so I cannot avoid some normal insecurities. Having a pocket watch sized device in my abdomen is noticeable and with the sensitivity of the area, I have to dress loose. Being only 5' 3" and making it to a buck make that easy because everything is big, but it is difficult because I still want my clothes to be flattering and womanly. My skin is a bit of a mess because it has always been sensitive and any change exacerbates it along with my hair and nails that have not gotten proper nutrition in some time. Rashes, acne, peeling nails, frizzy hair, etc.

Writing this is so cathartic though. That was part of the intention in starting the blog to begin with. In writing the ups and downs I am going through throughout this trial I am facing, I am seeing how blatantly obvious and wonderful the ups are and that makes me feel so silly for even noticing or complaining about the difficulties. All of the body issues will come to an equilibrium in time and will no longer be a complaint. I am sure I will find my new self in this new skin and be able to dress it beautifully and comfortably or at least to my liking. Maybe someday I will get back to a routine with household chores and daily activities......and maybe I won't, but it will all get done. One giant learning experience that will serve me greatly.

Ending with a smile. Glad to be ten weeks out. Glad to be in an environment with resources and support. Glad to have a new life with my family. Glad to eat. Glad to be alive. Glad to spend quality time with my miraculous son.

Time for dinner.