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Well ladies and gentlemen, I just passed my 6 month mark with my Enterra gastric stimulator. I can't believe it has been this long. Everyday I am noticing new and interesting ways my life and body have changed. Let me say, it is mind blowing and feels unreal.
As you can see, the biggest change is the swelling. The swelling has gone down so much that you can actually see the device even more. It pops out of the little corner of my abdomen like a little gem. I am somewhat used to having it there now, as in the device protruding, but it still astonishes me when I look in the mirror and the flashbacks stream in about why this device is there. It is such a blessing to have a new lease on life as well as gaining a new quality of life. But it is so twisted how traumatic it is to have gone through with the surgery and realizing what it took to get to this place.
Obviously another big change has taken place. The opportunity to eat more food and more solid foods at that. A lot of people wonder what my diet consists of, especially now. I eat a lot of plant based proteins, mostly ground up because digestion of high fiber foods is very difficult, even now. I still have smoothies and shakes, protein shakes with chick pea, hemp, chia, etc. as well as nut butters and crushed nuts in some bars (Larabars and other natural protein bars). Protein is essential and aids in healing. I eat a lot of eggs because I like them, they are easy to digest, and they have a lot of nutrients that I can absorb. I have gluten free bread, tortillas, and even waffles. I can now enjoy maple syrup as well as fruit spreads, similar to jelly. I am a tortilla and potato chip addict. To add to that, I occasionally can enjoy nachos or a hamburger. Chicken is also an occasional food. Salads and steaks are a no-go because they are so hard to digest. Overall, this is way better than before. It all adds a little variety.
The next change has been my weight. I have held steady since October. I had a terrible bug that cost me a few pounds last month, but I quickly rebounded weight-wise. This is all a good sign according to my doctor and the rep from Medtronic who monitor my device. Remember, full recovery time is one year so full results cannot be determined until then. I hope to add at least five more pounds, but stable is better than losing for sure! I do not feel the need to push, I just listen to my body. As I was told by a doctor not too long ago, "The body is smarter than any scholar or doctor." I believe that to be true 100%.
Energy. I do not and will not ever have the energy or stamina of my peers, but it has gone up considerably. I no longer fall asleep at 7:30p every night out of complete exhaustion and deprivation. I no longer feel my body is weak and hungry when my belly is not. I am able to go a full day without a nap or a few hours on the couch. Not every little task requires a rest break. I will honestly tell you that I do pay when I have done too much. Just as I did before, except now I have this belly still healing so it takes a bit. I just enjoy so much more, sometimes I forget. Can we say that is a bad thing? I think not.
Pain. Oh the pain. It has done a 180 on me. I can now eat a meal without getting full after a few bites. I can make it through a meal without considerable pain I am pushing through or hiding, trying to ignore it. I no longer get horrible, excruciating pain within minutes of a meal. The best part for a vain woman is that my belly is not distended all day long. Bowel movements and other unmentionables are nearly normal with little to no pain. And gas is a distant memory....unless I make a misstep as all of us do in that area.
Sleep. You wouldn't think sleep would be all that different. Oh but it is. I used to wake up two to three times a night to go to the bathroom. Pain and digestion itself would wake me on a regular basis. And the nausea was just ridiculous. I don't know how many nights I lay awake trying to sleep it away. I would toss and turn then move to the couch, possibly a chair. There were so many nights, and days for that matter, I would be so thirsty, but the thought of drinking water made me more nauseous. I can proudly say that most nights now consist of 7 to 8 hours of uninterrupted sleep....whatever that may be to a parent. So much more refreshing than 6 months ago.
Lastly, though, is how I am viewed and treated by the outside world. Being sick in our culture is seen as a weakness. When you are afflicted by an invisible disease, it is really tough. There are no outward signs of said disease so the outside world may accept you for what you say you are or they may think you are overreacting, maybe even exaggerating. Friends and family may have better knowledge of you personally, but even they treat you as they see you by default. The trouble with this is, every one of us is struggling with something, not always physical, so we all need compassion. You just never know what impact you have on someone.
Although many knew I was sick before, it was and is difficult to wrap your mind around. I, myself, am still going through the process of accepting myself for who I am now. It is so hard to live your whole life one way and be loved for that, then suddenly things start to decline like sand falling through an hour glass. All the while, we are all trying to catch the sand to slow time. As the decline continued and continued, it seemed as though people, family and friends, dropped like flies. Many not knowing what to do or say so sheer fear and anxiety keep them away. Some of them no longer enjoying my company because I was no longer able or capable of enjoying and partaking in things that kept us close prior to the decline. Possibly this is not a conscious decision, just one made by continuing the life they had always enjoyed. Some may just be uncomfortable with illness just as they may with drinking or dancing, so it is avoided. All of this is very painful for me, and I am still trying to cope. I try to remind myself it is not malicious. Try connecting the heart to the intellect.
More recently the treatment has changed so much I feel lost in it all. Often left feeling inadequate when moments before I was walking with my head high. 6 months ago you would have caught me on a couch or chair most days. Friends and family would come to my place to spend time with me. That, I appreciated a lot. Many a night spent watching movies, playing card games, listening to music and messing with playlists on our ipods, or simply having good conversation. I would get out and do things, even clean my house, but all of which was so taxing. This device was implanted and suddenly many around me are expecting a recovery from illness as if this were a magic pill.
It is, in a sense, like a magic pill because of the life changes it has made that are so positive. Let's not forget the diseases that lead to this comorbidity along with all of the other disease I have, though. They all need attention to manage them. This umbrella of APS Type II falls in to branches like a family tree. Anchor a falling branch and it flourishes. It becomes a little stronger, but the brace does not fix the branch. I hear things like, "What's your plan now. Work? School?" or "What do you do all day? Lay around. Must be nice." or even "You need to get out more. It's not healthy being at home all the time." Here are my answers: My plan now is exactly this. Continue healing and improving while taking care of my body for optimal use. It is a beautiful temple God gave me and this temple needs no additional wear and tear. School will wait but the knowledge I have from the years I spent in college are priceless. The knowledge and wisdom I have gained in life is priceless. No one can take that from me. As far as what I do all day, the same as any stay at home mom. It is a lot more work than people think. Laying around is not an option. It is nice, however, to have the special time with my amazing son. And on that note, I do get out. I have appointments, school obligations for my son, groceries, outings with my family, long walks, church...shall I say more? I believe all of this is healthy and no one else can determine what is good for me.
It is hurtful to be misunderstood. Then, I step back and think most of us are. Right? No one knows what is going on behind closed doors, inside your mind, or inside your heart. Not everyone knows your past. Many probably don't know one of your deepest, darkest secrets. All of these could be holding incredible joy, stress, pain, sorrow, suffering, anxiety, or numbing. I have become more and more of an introvert as the years have passed. Although, I definitely know I have gained strength, knowledge, and fortitude, I feel like an alien in this world because of the rarity of my situation. Even my husband, the closest to me, doesn't understand a lot and that is not for lack a trying. He doesn't always know what to do and forgets the special needs I sometimes have. This causes me so much anxiety and loneliness. So recently, with the energy I have gained, I decided I want to venture out of my comfort zone.
I always have been ambitious and it drives me crazy to be stagnant. I've thought about getting a part time job to feel a sense of accomplishment at the end of each day or just the social interaction with fellow employees. Then I really think about it and I know I can't. I cannot make a commitment I don't know I can fulfill. But the ache in my heart from trying to grasp all of this novelty in my life needs attention. I have always wanted to help people. It makes me feel good. I was going to school for nursing and psychology. I was a medical assistant along the way. Then I was halted by no fault of my own. The passion doesn't leave. In this big metropolitan area I thought there must be tons of shelters needing volunteers. I used to volunteer serving lunch at my son's school and I enjoyed it. I have been researching and getting advice for the area. I have come across some great opportunities. This is the direction I want to go for now.
Volunteering can have so many benefits. Flexible schedules are part of the appeal for me. I want to try something small before I jump headfirst into commitments of paid employment. Why do it for the money anyway. Our culture is so geared to thinking money is success when I believe I have been successful. My compassion has only intensified. All of the people who walk in to shelters have a story. Women's shelters, homeless shelters- all of these people get there somehow. The stigma of worthless people who get themselves in these situations deserve no help is simply ridiculous. A mother whose husband passed away has no skills because she has two children she was raising while her husband worked. He may not have had benefits or life insurance. She can't get a job or can't afford daycare. She loses her home. Where does she go? A veteran ravaged from war comes home with a changed mind. There is little help for the mentally ill. He tries and tries to maintain a job and a home, but these terrors never leave his mind. They affect his work. He loses his job and loses everything. Still, his mind is tortured. It spirals downward with no treatment. Where does he end up? There are so many scenarios, so many stories, so many who need help or just a smiling face. I want to help. I will help.
Part of the purpose of this blog has always been to help. Help someone like me who was spiraling into this world of disease with no real path laid out. I had no role model, no light at the end of the tunnel guiding me through. I'd research and find little to encourage me or inform me. This journey will not stop. I am not the only one who has these illnesses. I am not the only one so I may not be "rare". I want to help.
