Hello friends. I recently passed my 7 month birthday/anniversary for my Enterra gastric stimulator. I saw my doctor a few days before. I have gained another pound. Slowly but steadily I am progressing through this recovery with flying colors. I am hoping to get a little more meat on my bones in the next few months. My doctor is happy with my current status. As long as my symptoms from gastroparesis are lessening and my weight is stable, he feels confident. Weight gains are gleefully accepted by all.
I will be honest. I haven't been feeling all that great. It genuinely has just been a general feeling of malaise. Lack of motivation, aches and pains, blood sugars completely erratic, and headaches that won't quit. This certainly affects my appetite. I am sure much of this is intertwined. The warmer weather kicks up allergies. Allergies send your immune system into a frenzy. This could possibly cause erratic blood sugars. Immune response in addition to warmer weather allowing more activity outside can confuse the body. Immune system causing high blood sugars while activity lowers blood sugars. Factor in the general routine your body is acclimated to and chaos ensues.
Now, (if your not diabetic) imagine water running through your veins carrying little sugar and oxygen to the rest of your body. That would make you feel pretty weak. Then imagine that quickly changing to syrup overloaded with tons of sugar while carrying oxygen and nutrients to the rest of your body slowly. Again, this would cause you to feel pretty raunchy. All the while, your body is fighting to reach homeostasis. Imagine going through this several times a day. Swimming for hours then running in the sand then swimming then running.....you get the picture. By 10 pm you would crash on the couch, aching all over, and worn out completely. This explains lack of motivation along with aches and pains. The headaches can be tied in as well. Sugar and oxygen are the main sources of energy to the brain; water, syrup, water, syrup....throbbing is no surprise. Well, I am glad we worked this out together. I feel much better knowing what is happening. Thank you for your help. ;-)
All joking aside, I am no expert.
I will tell you all some joys of mine. Who wants to talk about hardships all day long?
A few short days before the 7 month birthday, as I like to call it, I had my own birthday. I am an extremely young 31. This is a milestone. A major milestone. Feeling so helpless and hopeless, hearing all the daunting information the doctors through around, and feeling every moment of it....wow, 31 is welcomed with open arms. This, of course, does not come without the typical breakdowns many of us have while aging.
Everybody talks about turning 30 and having heart palpitations until that day. Women especially, talk about a deep depression and seeking ways to feel younger. Well, let's face the truth and realize that 30 is less than half our life expectancy so what's so frightening. Nevertheless, this milestone is usually a dreaded and hated one. For me, 30 was great. I felt mature and suddenly smarter. 31 started rolling around and all of a sudden my mind is counting back the years to high school. My mind is calculating the years I have known my husband, 14. My son is 8. What?! When did I become old enough to have, let alone, raise an 8 year old. He's nearly as big as I am. Whoa?! My heart began to ache too. It's been all of 2 or 3 weeks and I am over my "quarter-life" crisis.
Again, another special day rolls around in my new journey. My birthday came with as many joys as the holidays. I have discovered that fatty, sugary treats are just too much for my belly to handle. I talked about making blueberry muffins in place of pies for Thanksgiving and Christmas. Well, my son and I made gluten-free, dairy-free chocolate chip muffins for my birthday. Chocolate has always been an addiction for me. Chocolate cake in any form or fashion fills me with joy. Frustration follows these days so I treat my addiction with small doses here and there. Anything made with the love of my son tastes even sweeter, so those chocolate chip muffins were just the "cake" that I needed for a true birthday.
My birthday fell on a Sunday. My family got up and went to church with spoken words welcoming my special day. After church, I requested we go to PF Chang's. Mmmm gluten free heaven. Along the way is a store that sells, what I like to call "tall-boys", as in the good ol' fashioned 16 oz. cans of beer. The beer, in my case, is swapped out with Zevia. I am not sure if I have talked about Zevia before, but it is an all natural soda. It contains stevia instead of artificial sweeteners, it has less caffeine, less sodium, just all around a good switch from soda. My belly doesn't handle the traditional soda, so I go for Zevia. I had a long loving relationship with 44 oz. diet cokes for many years; like all other foods I have learned coping skills. Proudly in my new birthday outfit and with my tall-boy we sat for a leisurely lunch that I could enjoy without regretting. When we returned home, my son insisted we light a candle next to a muffin, as to not contaminate me in any way (so thoughtful), and they sang "Happy Birthday". I ate it gladly and oh was it good! The rest of the day was lounging and movies. I couldn't ask for anything better.
Being able to enjoy things with friends and family is such a beautiful thing. Finding tricks and little details to tweak can make it even better. It doesn't happen over night. Getting a diagnosis is a shock. Any diagnosis. A chronic illness entails a lot of learning the first few years. As you learn and grow and the disease becomes part of you instead of defining you, you will be able to make small adjustments that help bring these special moments back into light as well as making you feel at ease. It is hard to blend into a world that is not made for you. Change that world so it is yours.
The interesting thing about my motivational writings and positive thoughts are that they are all inside of me or I would not be able to write about them genuinely and with so much passion, yet somehow in my heart they are not always fully embraced as of yet. I don't know if they ever will. I talk a lot to those close to me about trying to get to a place where I fully accept the diseases I face and the paths they will take me down. I know I have control of my own free will, but like all other responsibilities, I have to take the diseases seriously. This is where the phrase "easier said than done" comes from. A lot of times we intellectually know how we should be thinking, how we should be reacting, and what we should do about things, but a great percentage of those times our hearts do not fall in line with our intellect. I do think these thoughts would not come to me or any one else if we didn't genuinely feel them. It's the tough parts of these roads that trick our hearts into feeling the opposite of what we know to be true.
I am a true introvert. I can talk an ear off for hours if I am comfortable with someone. Put me in an environment where I feel unsafe and good luck with getting the real me. I think a lot. I analyze everything, especially myself. If I am feeling bad, down, wrong, hurt about anything, I look inside myself and think "How did I or my actions contribute to this...". I try to take accountability for everything because we are all full of mistakes. I am embarrassed easily and embarrassment and shame go hand-in-hand for me. That's a tough disconnect to make even though I know they are separate emotions. When I get to these impasses of shame and accountability, I shut down.
That's when the gears start turning. I look everywhere for answers. I always need an answer. Then, I get to a place where I tell myself "Not everything makes sense. Do your best and know you have given your all. What you cannot change cannot be a burden." That's when these positive, motivational thoughts begin to roll in. In an effort not to depress my readers, I come to my keyboard stressed and emotional but disguise it often. As I write, I work these things out in my head and in my heart. The thoughts and analyzing come together and by the end of each post I feel positive and relieved.
I suppose this blog is sort of like a journal. When I think of it that way, I scare myself knowing so many people know my inner workings. So, I think of the blog as a true connection to friends and families and the curious. I have said it before and I will say it countless times again, we all have struggles. I am not the only one in a situation that often overwhelms me. Opening up about these struggles takes the stigma of weakness out of them. Being overwhelmed, ill, overworked, stressed, grieving, lonely or concerned should never be seen as a weakness. And being an introvert holds me back from really discussing my feelings with those close to me. If a thought is interrupted or overlooked, I cease. As I said earlier, if shame is involved I most often shut down. This blog is my release. It is my connection to all those who struggle. It is a tool to lay everything out to look at it more clearly. And it is a way to expose some details not discussed with my inner circle due to shame and a feeling of weakness. Maybe this helps them piece things together as well.
I saw a recent quote I cannot repeat verbatim, but it basically said "serving others is the best way to help yourself". I firmly believe that with all my heart and mind. I may not always be the best with encouragement and unsolicited advice, but my ultimate goal everyday is to be a shoulder to cry on or a contagious smile to pay it forward. This is not a conscious thought in my mind every morning, it is just me. I suppose the missteps come in when I am so underwater, I become selfish and cannot see the pain I may be causing another.
Love is our best weapon. Openness is great ammunition. Love comes from above while openness comes from within. Let's all look within.
Tuesday, March 11, 2014
Thursday, February 6, 2014
6 Month Anniversary and A New Life Unfolding
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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.
Monday, January 20, 2014
Battle Scars and Victory Badges
My blog has been somewhat consistent along the way, but never every two weeks or once a month that you could set your calendar by. This has been very intentional because life doesn't happen in perfect increments. I don't believe fair knowledge or information can be contained to such strategic deadlines or timelines. Just like a new year's resolution, I intend on keeping it as consistent as possible to gain as many readers and followers as I can reach. Let's face it, many of our best intentions are not or cannot be kept. That being said, I would have liked to post this on my 5 month birthday/ anniversary, but life happened.
Twenty days ago I celebrated my 5 month birthday/ anniversary. I had a gastric stimulator implanted on July 31, 2013. Although I have explained this in prior posts, I would like to reiterate myself due to confusion and misunderstandings along the way. A gastric stimulator is a device that is implanted in to subcutaneous tissue in the abdomen. This tissue is the fat or loose layer between outer skin and muscle. Electrodes or leads are then guided through the abdomen into the lining of the stomach. These electrodes emit electronic stimulation of the stomach muscles much like a pacemaker does for the heart. Unlike a pacemaker, the gastric stimulator does not make rhythmic motion occur in the stomach. It does allow more movement of the paralyzed smooth muscles that aid in digestion.
This confusion or lack of knowledge became very apparent to me recently. After dealing with the most horrific stomach virus I had ever seen attack my 8 year old, my magnificent immune system allowed the demon in. One minute I was fine, the next minute I was emitting everything I had ingested and more..and more...and more. I called my aunt and husband within minutes of onset and within an hour I was nearly incoherent when my aunt came to the rescue. I will cut details, but within four hours I arrived at the hospital where my surgery had taken place.
By the time the ER staff triaged me (no more than 30 minutes after arrival) I was severely dehydrated to the point where even my limbs were stiff as a board. I had never experienced or seen this. During triage, I cannot tell you how adamantly my husband and I were in informing the staff of my complicated history but more importantly the stimulator. Initially, we were treated like all other patients and herded along like cattle until they saw the level of dehydration in combination with the diabetes and we were rushed to a room.
I had called my surgeon/ gastroenterologist as soon as the virus showed its face. He was out of the office in conferences with very bad phone reception, but the office staff did alert him of my condition. Celiac disease, inflammatory bowel disease, gastroparesis, and a gastric stimulator do not bode well in these conditions. He called my cell phone as they were putting an IV in. He spoke directly with the ER doctors to instruct them on what to do. He asked that they admit me for the night to be observed to make sure I was stable, but ultimately left the decision up to me telling the ER doctors I was a good patient who knew my body well (pat on the back). I was given fluids and medicine to stop the dirtiness and pain. After about 4 hours, the ER doctor checked in on me hinting at getting me to a bed upstairs, but I stood my ground and asked to be discharged to rest at home and be with my son. That's just what I did.
The days after I began having a strange revelation. All these years of disease and diagnoses and I still viewed myself the same as I always had. I mean, don't all of us miss the gradual changes as we grow and age? Suddenly I realized, what could have taken my son three days to get to (severe dehydration) yet never seen because his treatment came sooner than that, only took my body less than four hours. I was in such a state that I was unable to walk, struggled to talk, barely hanging on to consciousness let alone coherency. And here I am a week and a half out still struggling to balance my blood sugars and gain some normalcy in my gut. Rude awakening.
For the last 8-10 years I have complained of symptoms I had no idea were related to gastroparesis. I had never even heard of this condition before. I had these symptoms since I was young, as long as I remember. As I got older they got worse. I was diagnosed with Type I diabetes at 20 years old, which is typically linked to gastroparesis when management of the disease is lacking for a long period of time, often years. I believe these symptoms were not followed up on because I was young, my diabetes was/ is under good control, and it is highly unlikely. Thank goodness, the greater plan got me to doctors who found a good path for my treatment.
I have been through the ringer with these diseases. It has been one on top of another since the age of 12 or 13, but the snowball grew quickly these past five years. Moving from my college town back to my small hometown for a slower pace of life, thinking that would help somehow turned out to be a blessing and a curse. At the time I only knew of Hashimoto's disease, Type I diabetes, and Interstitial Cystitis. I had a baby boy and suddenly began having unexplained seizures. I was sent to the Mayo Clinic and the answers started slowly showing themselves as time went on, but those small town doctors often did more than they realized by giving pieces of the puzzle one at a time making it easier to see the bigger picture of what was necessary.
For the longest time, even now sometimes, I thought I was a victim and couldn't catch a break. I will be honest and say that it is difficult to manage 10-12 chronic illnesses at one time. On good emotional days, I see this as a great learning experience. On bad emotional days, I feel as though I cannot catch up or continue to juggle so many balls. I am lucky as a patient to have some very useful background knowledge of psychology and the medical field. Add to that, being the patient and knowledge goes up exponentially. Intertwining the science, logic, faith, hope, and emotions is a beautiful disaster.
I have been mentally motivating myself since this awaking has begun. When the days are physically tough they become emotionally tough and this cycle is hard to break. I enjoy walking or doing yoga for overall health. I could go into the details of how this aids digestion with good blood flow, gravity, and massages the digestive tract....but I won't (wink). This morning as I was walking and feeling down because every once in a while the routine falls out of place and our bodies pay for it. Missing pills here and there. A bad infusion sight with my insulin pump leading to grossly high blood sugars. All of this is under my control so I am really hard on myself when I make a misstep. This morning I thought 'Be realistic in the moment'. Of course, with two of us in the household incredibly shaken by this stomach bug, my husband just starting a new position at work and all the while trying to tend to us sickies, there is going to be some upheaval. 'Don't be so hard on yourself'.
As the thoughts were running through my head, the past few weeks kind of circled as well- good and bad. All the acute illness layered on top of the chronic illness layered on top of emotions and fears had my mind reeling. I realize that I often get stuck in my head. This tape keeps going when my days are tough. These thoughts take me too far in to the future with all these 'what-ifs' or 'statistics says' only bringing me down further leading me to try to take tighten control of what I am facing. Do you see where this is going? That's when it gets overwhelming and my mood is forever stuck in this terrified, determined rut. I am in this rut and the world is still going on around me as if nothing can stop it. You know what? Nothing can. That's when my mind said 'Be in the moment of what is really in front of you'.
While I waste time stuck inside myself trying to navigate this terrain, I miss the things that are so crucial to life and happiness. My son's contagious laugh every time his Daddy does something even remotely crude or embarrassing or when he sees a funny commercial. My husband's insatiable need to make jokes at ever turn while I try to act as if nothing he does is funny anymore. My own incredible accomplishments that I do not see while I am longing for those of my peers. The beauty that is showing itself outwardly as my body is gaining nourishment. All the new and interesting sites to take in around us in this new environment. So much to be seen and enjoyed, why waste time stuck inside the darkness? I realized that this is what may be my biggest fear. The moment.
All my life there has been a goal, a door, a window to reach. As a child you go through school waiting to get out of elementary. Then, excitedly making it to middle school and going through changes that allow more freedom and excitement anxiously awaiting high school. In high school, new love, new privileges, new experiences all leading up to college or a job. At each stage, working to make it to that next level. The whole way through it, we are planning our next move to get us to that next level. As a child, adolescent, and young adult we are so wrapped up in ourselves that we often live in the moment without a care in the world. I was abruptly stopped midway through this path that most of us take. I had to stop focusing on the joy and the path to suddenly focus on mortality.
Well, no one wants to face their own mortality. Did that become my Achilles heel? The moment at hand suddenly became too scary to face so my coping mechanism became ignoring it all together hoping to move past it. The unfortunate thing about this coping mechanism is that it is horrible and more importantly detrimental. Losing site of what is right in front of you is blinding. So I say, (in the great words of P!NK) stare fear in the face and say I just don't care.
I still have goals. Maybe not traditional but goals nonetheless. I still have dreams. They are not the dreams of my high school self nor my college self, but my 'now' self. I still have stages and levels yet to be reached. I still have faith. I still have hope. I still have joy. I still have love. What I don't need is to forget all that I still have while focusing on all the don't-haves.
I wrote a post a while back talking about my dad and sister. My dad has passed and my sister lives in California. They both have Type I diabetes. I do not know or cannot see clearly if this disease has precedents over the others. To me, it is the biggest after APS Type II. Possibly because I have seen it in them and it has terrified me and haunted me my entire life. I miss them both terribly ALL THE TIME. In that post, I wrote about how the longing is so painful and the disease so devastating yet when I shift my perspective I see how this is one thing that ties us together no matter our distance. This is one thing that we all understand about each other in unspoken ways. That perspective is what I have held on to since that realization. (Sometimes the greatest things come from that darkness)
Deciding that I am the champion here has lead me to this point. Embracing the battle scars I have on my belly and gold medal you can see poking out of my lower abdomen. Looking at old pictures of when I was a star athlete or competitive long distance runner shows me what I was when I was considered to be in peak physical condition. Knowing I am stronger now yet thinking 'I can get back to that'. That, in this case, meaning weight or size. Still telling myself 'but it is ok if you don't' knowing that as long as I continue to do the best I can, I cannot get down on myself. I can't expect more from myself than I do from others. My victory badge will remind me of all that keeps me grounded.
Within days of getting my victory badge it began taking on a new meaning. I have been contacted by others who share my struggle. Some of them even asking me questions of guidance and inspiration....ME?! My blog, my words, my life in the flesh is reaching people and making an impact. The thing I had strived for, thinking it would be done in the medical field with scrubs or a white coat, has been replaced by my inner thoughts and outward strength and resilience. That is the best feeling in the world. This victory badge not only ties me to my sister and dad, but to all of those who share my struggle and victories in their own lives. My medical alert, my victory badge, my connections, ME.
Twenty days ago I celebrated my 5 month birthday/ anniversary. I had a gastric stimulator implanted on July 31, 2013. Although I have explained this in prior posts, I would like to reiterate myself due to confusion and misunderstandings along the way. A gastric stimulator is a device that is implanted in to subcutaneous tissue in the abdomen. This tissue is the fat or loose layer between outer skin and muscle. Electrodes or leads are then guided through the abdomen into the lining of the stomach. These electrodes emit electronic stimulation of the stomach muscles much like a pacemaker does for the heart. Unlike a pacemaker, the gastric stimulator does not make rhythmic motion occur in the stomach. It does allow more movement of the paralyzed smooth muscles that aid in digestion.
This confusion or lack of knowledge became very apparent to me recently. After dealing with the most horrific stomach virus I had ever seen attack my 8 year old, my magnificent immune system allowed the demon in. One minute I was fine, the next minute I was emitting everything I had ingested and more..and more...and more. I called my aunt and husband within minutes of onset and within an hour I was nearly incoherent when my aunt came to the rescue. I will cut details, but within four hours I arrived at the hospital where my surgery had taken place.
By the time the ER staff triaged me (no more than 30 minutes after arrival) I was severely dehydrated to the point where even my limbs were stiff as a board. I had never experienced or seen this. During triage, I cannot tell you how adamantly my husband and I were in informing the staff of my complicated history but more importantly the stimulator. Initially, we were treated like all other patients and herded along like cattle until they saw the level of dehydration in combination with the diabetes and we were rushed to a room.
I had called my surgeon/ gastroenterologist as soon as the virus showed its face. He was out of the office in conferences with very bad phone reception, but the office staff did alert him of my condition. Celiac disease, inflammatory bowel disease, gastroparesis, and a gastric stimulator do not bode well in these conditions. He called my cell phone as they were putting an IV in. He spoke directly with the ER doctors to instruct them on what to do. He asked that they admit me for the night to be observed to make sure I was stable, but ultimately left the decision up to me telling the ER doctors I was a good patient who knew my body well (pat on the back). I was given fluids and medicine to stop the dirtiness and pain. After about 4 hours, the ER doctor checked in on me hinting at getting me to a bed upstairs, but I stood my ground and asked to be discharged to rest at home and be with my son. That's just what I did.
The days after I began having a strange revelation. All these years of disease and diagnoses and I still viewed myself the same as I always had. I mean, don't all of us miss the gradual changes as we grow and age? Suddenly I realized, what could have taken my son three days to get to (severe dehydration) yet never seen because his treatment came sooner than that, only took my body less than four hours. I was in such a state that I was unable to walk, struggled to talk, barely hanging on to consciousness let alone coherency. And here I am a week and a half out still struggling to balance my blood sugars and gain some normalcy in my gut. Rude awakening.
For the last 8-10 years I have complained of symptoms I had no idea were related to gastroparesis. I had never even heard of this condition before. I had these symptoms since I was young, as long as I remember. As I got older they got worse. I was diagnosed with Type I diabetes at 20 years old, which is typically linked to gastroparesis when management of the disease is lacking for a long period of time, often years. I believe these symptoms were not followed up on because I was young, my diabetes was/ is under good control, and it is highly unlikely. Thank goodness, the greater plan got me to doctors who found a good path for my treatment.
I have been through the ringer with these diseases. It has been one on top of another since the age of 12 or 13, but the snowball grew quickly these past five years. Moving from my college town back to my small hometown for a slower pace of life, thinking that would help somehow turned out to be a blessing and a curse. At the time I only knew of Hashimoto's disease, Type I diabetes, and Interstitial Cystitis. I had a baby boy and suddenly began having unexplained seizures. I was sent to the Mayo Clinic and the answers started slowly showing themselves as time went on, but those small town doctors often did more than they realized by giving pieces of the puzzle one at a time making it easier to see the bigger picture of what was necessary.
For the longest time, even now sometimes, I thought I was a victim and couldn't catch a break. I will be honest and say that it is difficult to manage 10-12 chronic illnesses at one time. On good emotional days, I see this as a great learning experience. On bad emotional days, I feel as though I cannot catch up or continue to juggle so many balls. I am lucky as a patient to have some very useful background knowledge of psychology and the medical field. Add to that, being the patient and knowledge goes up exponentially. Intertwining the science, logic, faith, hope, and emotions is a beautiful disaster.
I have been mentally motivating myself since this awaking has begun. When the days are physically tough they become emotionally tough and this cycle is hard to break. I enjoy walking or doing yoga for overall health. I could go into the details of how this aids digestion with good blood flow, gravity, and massages the digestive tract....but I won't (wink). This morning as I was walking and feeling down because every once in a while the routine falls out of place and our bodies pay for it. Missing pills here and there. A bad infusion sight with my insulin pump leading to grossly high blood sugars. All of this is under my control so I am really hard on myself when I make a misstep. This morning I thought 'Be realistic in the moment'. Of course, with two of us in the household incredibly shaken by this stomach bug, my husband just starting a new position at work and all the while trying to tend to us sickies, there is going to be some upheaval. 'Don't be so hard on yourself'.
As the thoughts were running through my head, the past few weeks kind of circled as well- good and bad. All the acute illness layered on top of the chronic illness layered on top of emotions and fears had my mind reeling. I realize that I often get stuck in my head. This tape keeps going when my days are tough. These thoughts take me too far in to the future with all these 'what-ifs' or 'statistics says' only bringing me down further leading me to try to take tighten control of what I am facing. Do you see where this is going? That's when it gets overwhelming and my mood is forever stuck in this terrified, determined rut. I am in this rut and the world is still going on around me as if nothing can stop it. You know what? Nothing can. That's when my mind said 'Be in the moment of what is really in front of you'.
While I waste time stuck inside myself trying to navigate this terrain, I miss the things that are so crucial to life and happiness. My son's contagious laugh every time his Daddy does something even remotely crude or embarrassing or when he sees a funny commercial. My husband's insatiable need to make jokes at ever turn while I try to act as if nothing he does is funny anymore. My own incredible accomplishments that I do not see while I am longing for those of my peers. The beauty that is showing itself outwardly as my body is gaining nourishment. All the new and interesting sites to take in around us in this new environment. So much to be seen and enjoyed, why waste time stuck inside the darkness? I realized that this is what may be my biggest fear. The moment.
All my life there has been a goal, a door, a window to reach. As a child you go through school waiting to get out of elementary. Then, excitedly making it to middle school and going through changes that allow more freedom and excitement anxiously awaiting high school. In high school, new love, new privileges, new experiences all leading up to college or a job. At each stage, working to make it to that next level. The whole way through it, we are planning our next move to get us to that next level. As a child, adolescent, and young adult we are so wrapped up in ourselves that we often live in the moment without a care in the world. I was abruptly stopped midway through this path that most of us take. I had to stop focusing on the joy and the path to suddenly focus on mortality.
Well, no one wants to face their own mortality. Did that become my Achilles heel? The moment at hand suddenly became too scary to face so my coping mechanism became ignoring it all together hoping to move past it. The unfortunate thing about this coping mechanism is that it is horrible and more importantly detrimental. Losing site of what is right in front of you is blinding. So I say, (in the great words of P!NK) stare fear in the face and say I just don't care.
I still have goals. Maybe not traditional but goals nonetheless. I still have dreams. They are not the dreams of my high school self nor my college self, but my 'now' self. I still have stages and levels yet to be reached. I still have faith. I still have hope. I still have joy. I still have love. What I don't need is to forget all that I still have while focusing on all the don't-haves.
I wrote a post a while back talking about my dad and sister. My dad has passed and my sister lives in California. They both have Type I diabetes. I do not know or cannot see clearly if this disease has precedents over the others. To me, it is the biggest after APS Type II. Possibly because I have seen it in them and it has terrified me and haunted me my entire life. I miss them both terribly ALL THE TIME. In that post, I wrote about how the longing is so painful and the disease so devastating yet when I shift my perspective I see how this is one thing that ties us together no matter our distance. This is one thing that we all understand about each other in unspoken ways. That perspective is what I have held on to since that realization. (Sometimes the greatest things come from that darkness)
Deciding that I am the champion here has lead me to this point. Embracing the battle scars I have on my belly and gold medal you can see poking out of my lower abdomen. Looking at old pictures of when I was a star athlete or competitive long distance runner shows me what I was when I was considered to be in peak physical condition. Knowing I am stronger now yet thinking 'I can get back to that'. That, in this case, meaning weight or size. Still telling myself 'but it is ok if you don't' knowing that as long as I continue to do the best I can, I cannot get down on myself. I can't expect more from myself than I do from others. My victory badge will remind me of all that keeps me grounded.
Within days of getting my victory badge it began taking on a new meaning. I have been contacted by others who share my struggle. Some of them even asking me questions of guidance and inspiration....ME?! My blog, my words, my life in the flesh is reaching people and making an impact. The thing I had strived for, thinking it would be done in the medical field with scrubs or a white coat, has been replaced by my inner thoughts and outward strength and resilience. That is the best feeling in the world. This victory badge not only ties me to my sister and dad, but to all of those who share my struggle and victories in their own lives. My medical alert, my victory badge, my connections, ME.
Thursday, December 26, 2013
First Christmas with A Gastric Stimulator
Yesterday was my first Christmas with the gastric stimulator. I have to say it was the best Christmas I have had in years. My husband and I came up with an idea at Thanksgiving to make our own traditions because I am always so stressed and lonely at the holidays. With us being in a new city with different surroundings and relatives, we were a little lost. Not only did I have trouble eating because of gastroparesis, but I do have Celiac disease and food allergies. At holidays it is very difficult to accommodate for me because contamination is also an issue. That would leave me feeling physically awful as well as emotionally left out. This year was a drastic turn-around.
I decided I would celebrate holidays the night before so I could enjoy the company of family and friends on the actual day of celebration. Feeling physically better helped out a lot too. For Thanksgiving I made meatloaf and gravy, my grandmother's recipe, with garlic and rosemary roasted potatoes. Keep in mind I was 4 months out of the implantation and still recovering. This was the first real meal I had cooked since the surgery. This meal would have been completely impossible for me to ingest 4 months prior without serious consequences. It was delicious and I got to enjoy with my husband and son. The next day we joined family so my husband got a traditional Thanksgiving meal and I enjoyed the company with my food in my belly since I ate before at home.
This Christmas was equally joyful. The day before my son made me brownies for a dessert. He is eight years old and so compassionate. They were gluten free. All I did was measure and put them in the oven. He did it all. I am so proud. Then, I moved on to making some chicken strips with baked potatoes. Do you see the theme? I love potatoes apparently, but these are comfort foods I enjoyed before my life consisted of smoothies and scrambled eggs. My husband and I ate before we went to our Christmas Eve mass. After we returned home, my son and I enjoyed his brownies. Thoroughly enjoyed I should say. Then, Christmas day.
As I said, BEST Christmas in years. Thanks to family, we received plenty of gifts to fill our living room. Our son woke up to Santa's gifts with so much excitement. He quickly moved on to the wrapped gifts. Luckily, my husband and I were able to get him a few things as well. It was so nice to be in our own living room, in pajamas with bedhead opening gifts together. Previously, we waited all day until we gathered with family. Yesterday we enjoyed the company of family and friends again with a traditional meal as well. I ate my food shortly before we headed out. Then, we came home back to our pajamas and relaxed while watching movies my son received for Christmas as he went from one toy to the next, loving every minute of it. My husband and son kept saying how much they had enjoyed the day as well.
I had not one complaint. I think they enjoyed it because it was great, but also I wasn't lying on the couch in pain. I wasn't asking to leave every 30 minutes because I was tired and achy. I was actually able to enjoy my presents. I had nothing on my shoulders taking away from any of it. Nothing in the back of my mind holding me down.
Many may be wondering what I am eating prior to joining the rest of the world for these celebrations, but also on a normal day. I still drink a protein shake for breakfast with a banana. Bananas have been a staple in my diet since before I can remember. The shake has tons of nutrients and the protein content helps healing as well as compensate for the protein I struggle to ingest. Protein and roughage, like lettuce, will probably be a struggle forever. They are both very difficult for a healthy person to digest. For me it feels like a brick is sitting in my belly for days. Another reason my holiday meals are so enjoyable. I make sandwiches like wraps with rice tortillas. I love potato chips....any potato really. I drink one all natural soda a day called Zevia. It is sweetened with stevia instead of artificial sweeteners. Chemicals like pesticides and preservatives or artificial anything really makes me sick for days. I still love eggs, but now in any fashion not just scrambled. I really can eat fairly normal except a little healthier than the average American. I have to avoid dairy completely, but I have vegan cheese. I also have to ration things like strawberries and cucumbers and watermelon. Overall, I think my quality of life has improved so much.
I have not gained a single ounce since the beginning of October. My doctor is fine with that though because technically I have gained about 15-18 pounds since my discharge after implantation of the gastric stimulator. My color looks so much better. A lot of people comment on that and it makes me feel good. I am able to walk my small dog several times of days as well as exercise at least 5 days a week. I usually do yoga alternated with long walks for 30-45 minutes. I enjoy the catharsis, but it stimulates digestion. This is due to gravity, body movement bouncing the insides a little, and it actually massages the intestines. Again. many are commenting on my stronger looking physique as compared to the sickly look I had a few months back. The stimulator is, as I have said, the size of a large pocket watch or a slightly (I emphasize slightly) thinner hockey puck. I am 5'2" and worth a buck so it does pop out. My abdomen is still sensitive but improving little by little. I am just enjoying the new lease on life this tiny little thing and technology has given me.
I am just on top of the world right now and eager to see what life has to offer in the coming years. Bring on 2014 and many more.
I decided I would celebrate holidays the night before so I could enjoy the company of family and friends on the actual day of celebration. Feeling physically better helped out a lot too. For Thanksgiving I made meatloaf and gravy, my grandmother's recipe, with garlic and rosemary roasted potatoes. Keep in mind I was 4 months out of the implantation and still recovering. This was the first real meal I had cooked since the surgery. This meal would have been completely impossible for me to ingest 4 months prior without serious consequences. It was delicious and I got to enjoy with my husband and son. The next day we joined family so my husband got a traditional Thanksgiving meal and I enjoyed the company with my food in my belly since I ate before at home.
This Christmas was equally joyful. The day before my son made me brownies for a dessert. He is eight years old and so compassionate. They were gluten free. All I did was measure and put them in the oven. He did it all. I am so proud. Then, I moved on to making some chicken strips with baked potatoes. Do you see the theme? I love potatoes apparently, but these are comfort foods I enjoyed before my life consisted of smoothies and scrambled eggs. My husband and I ate before we went to our Christmas Eve mass. After we returned home, my son and I enjoyed his brownies. Thoroughly enjoyed I should say. Then, Christmas day.
As I said, BEST Christmas in years. Thanks to family, we received plenty of gifts to fill our living room. Our son woke up to Santa's gifts with so much excitement. He quickly moved on to the wrapped gifts. Luckily, my husband and I were able to get him a few things as well. It was so nice to be in our own living room, in pajamas with bedhead opening gifts together. Previously, we waited all day until we gathered with family. Yesterday we enjoyed the company of family and friends again with a traditional meal as well. I ate my food shortly before we headed out. Then, we came home back to our pajamas and relaxed while watching movies my son received for Christmas as he went from one toy to the next, loving every minute of it. My husband and son kept saying how much they had enjoyed the day as well.
I had not one complaint. I think they enjoyed it because it was great, but also I wasn't lying on the couch in pain. I wasn't asking to leave every 30 minutes because I was tired and achy. I was actually able to enjoy my presents. I had nothing on my shoulders taking away from any of it. Nothing in the back of my mind holding me down.
Many may be wondering what I am eating prior to joining the rest of the world for these celebrations, but also on a normal day. I still drink a protein shake for breakfast with a banana. Bananas have been a staple in my diet since before I can remember. The shake has tons of nutrients and the protein content helps healing as well as compensate for the protein I struggle to ingest. Protein and roughage, like lettuce, will probably be a struggle forever. They are both very difficult for a healthy person to digest. For me it feels like a brick is sitting in my belly for days. Another reason my holiday meals are so enjoyable. I make sandwiches like wraps with rice tortillas. I love potato chips....any potato really. I drink one all natural soda a day called Zevia. It is sweetened with stevia instead of artificial sweeteners. Chemicals like pesticides and preservatives or artificial anything really makes me sick for days. I still love eggs, but now in any fashion not just scrambled. I really can eat fairly normal except a little healthier than the average American. I have to avoid dairy completely, but I have vegan cheese. I also have to ration things like strawberries and cucumbers and watermelon. Overall, I think my quality of life has improved so much.
I have not gained a single ounce since the beginning of October. My doctor is fine with that though because technically I have gained about 15-18 pounds since my discharge after implantation of the gastric stimulator. My color looks so much better. A lot of people comment on that and it makes me feel good. I am able to walk my small dog several times of days as well as exercise at least 5 days a week. I usually do yoga alternated with long walks for 30-45 minutes. I enjoy the catharsis, but it stimulates digestion. This is due to gravity, body movement bouncing the insides a little, and it actually massages the intestines. Again. many are commenting on my stronger looking physique as compared to the sickly look I had a few months back. The stimulator is, as I have said, the size of a large pocket watch or a slightly (I emphasize slightly) thinner hockey puck. I am 5'2" and worth a buck so it does pop out. My abdomen is still sensitive but improving little by little. I am just enjoying the new lease on life this tiny little thing and technology has given me.
I am just on top of the world right now and eager to see what life has to offer in the coming years. Bring on 2014 and many more.
Thursday, December 19, 2013
Tips For Reducing Holiday Stress For The Chronically Ill
A lot of stress comes with the holidays. It can increase even more if you have a chronic illness. Some of the major stressors during the holidays for everybody are long lines and crowds, seeing certain relatives, gaining weight, and money. Add to that any chronic illness and all of those stressors seem a bit greater. So, how should one handle the stress of the holidays. Remember it is just another day. Remember the things that are not stressful and focus on those. Who really wants to add to the burdens they already carry?
I'd like to offer up a few tips I have learned along the way. Keep in mind, I am only human and there is no way to have butterflies and sunshine everyday. First, let's start with long lines and crowds. An easy answer to that is to avoid them, but that is definitely not realistic. As your weaving through crowds or standing in long lines try to have a little compassion and empathy to those around you. Not one person in that long line is thinking "This is amazing, I'll never get home. Woohoo." Also, inching closer and closer to the person in front of you does not make the line move more quickly. It just violates every one's personal space including your own causing more tension. Realistically speaking, if you do have a chronic illness and long lines and/or crowds are difficult for you try to go shopping during non peak hours. During the week people are rushing to get things done on their lunch break or after work so go mid morning or mid afternoon when the crowds and lines may be a little more scarce.
Everyone has those relatives they dread seeing. Equally, everyone has those relatives the love seeing. Not always do they come in the same crowd or on the same holiday, but there is probably a good mix at any holiday. Try not to focus on the relative and definitely don't waste precious time preparing for the holiday dreading that person. You are only adding fuel to the fire. Another good thing to keep in mind is that many of the relatives you will be seeing do not see you on a daily basis. Sure, everyone in the family knows about your chronic illness, but do they understand? Probably not fully. With grace and dignity, hold your head high. Continue to treat and manage your illness as usual. Don't take comments of ignorance personally. Depending on your personality, you can politely educate this person or simply move forward with the celebration. Even the relatives you look forward to seeing are bound to make a misstep as will you. Let's not take things too seriously so we can enjoy the holidays as we should.
Gaining weight is a stressors that follows so many of us throughout the year and certainly increases with the holidays. There are a host of chronic illnesses that use weight management in conjunction with other treatments and therapies to manage the disease. That can definitely put a dent in the holiday fun. You can still enjoy a holiday party or meal without the weight gain. Many of us will chronic illnesses know enough about our condition to manage our weight, but like everyone else we like to be carefree sometimes and eat that cookie. An easy fix is to allow yourself those treats that may be possible with the illness you face. But work the treats into your "diet" , so to speak. If you know you want the cookie or piece of pie, skip the extra roll or sweet potato casserole. you can even ration the treats. There are going to be plenty of parties and meals and goodies throughout the holidays. Throw in treats here and there as suggested earlier and you can rest easy knowing weight gain is not inevitable.
Most importantly, maintain your management routine. Taking care of yourself is always number one, but for the holidays it allows you to fully embrace them. Medicines should be taken on time. Hydrate well and allow time for rest. If you regularly exercise, try to work physical activity in to your holiday experiences. Shopping burns calories, the walking is gentle on the joints, and you don't even realize your exercising while your enjoying yourself. Sleep is also essential. Life happens and you may not go to bed at the same time as usual or wake as normal, but do the best you can knowing you will pay for overextending yourself. This should be a general rule among all, not just the chronically ill. There is no shame in taking care of yourself so you can enjoy this holiday season and more to come.
Finally, money. When is money not an issue. Now matter how much we have there are so many opportunities to spend it, it always goes quickly while leaving you still needing more for that one thing you need. With an illness the finances are stretched a little further. Remember that the holidays are not about money. No one will think you love them more if the gift you get is top notch. If they do, they are shallow. It is such a good feeling to give to others and see them happy by what you have done. Gifts do not have to be bought. With sites like Pinterest, there are a million ideas out there for homemade or inexpensive yet thoughtful gifts. Do not give in to the propaganda of the holidays; give in to the joy the togetherness and remembrance of the holidays.
Anyone with a chronic illness is dragged down daily by this disease to manage. Know that the disease does not define you. It is as much a part of you as an arm or a leg, but it is simply one puzzle piece that makes the masterpiece that is YOU. We all deserve to celebrate. We all deserve some togetherness. Whether these things are wrapped in to holidays or otherwise, embrace every moment you have. Good or bad, it's another moment. How do you want to spend it?
I'd like to offer up a few tips I have learned along the way. Keep in mind, I am only human and there is no way to have butterflies and sunshine everyday. First, let's start with long lines and crowds. An easy answer to that is to avoid them, but that is definitely not realistic. As your weaving through crowds or standing in long lines try to have a little compassion and empathy to those around you. Not one person in that long line is thinking "This is amazing, I'll never get home. Woohoo." Also, inching closer and closer to the person in front of you does not make the line move more quickly. It just violates every one's personal space including your own causing more tension. Realistically speaking, if you do have a chronic illness and long lines and/or crowds are difficult for you try to go shopping during non peak hours. During the week people are rushing to get things done on their lunch break or after work so go mid morning or mid afternoon when the crowds and lines may be a little more scarce.
Everyone has those relatives they dread seeing. Equally, everyone has those relatives the love seeing. Not always do they come in the same crowd or on the same holiday, but there is probably a good mix at any holiday. Try not to focus on the relative and definitely don't waste precious time preparing for the holiday dreading that person. You are only adding fuel to the fire. Another good thing to keep in mind is that many of the relatives you will be seeing do not see you on a daily basis. Sure, everyone in the family knows about your chronic illness, but do they understand? Probably not fully. With grace and dignity, hold your head high. Continue to treat and manage your illness as usual. Don't take comments of ignorance personally. Depending on your personality, you can politely educate this person or simply move forward with the celebration. Even the relatives you look forward to seeing are bound to make a misstep as will you. Let's not take things too seriously so we can enjoy the holidays as we should.
Gaining weight is a stressors that follows so many of us throughout the year and certainly increases with the holidays. There are a host of chronic illnesses that use weight management in conjunction with other treatments and therapies to manage the disease. That can definitely put a dent in the holiday fun. You can still enjoy a holiday party or meal without the weight gain. Many of us will chronic illnesses know enough about our condition to manage our weight, but like everyone else we like to be carefree sometimes and eat that cookie. An easy fix is to allow yourself those treats that may be possible with the illness you face. But work the treats into your "diet" , so to speak. If you know you want the cookie or piece of pie, skip the extra roll or sweet potato casserole. you can even ration the treats. There are going to be plenty of parties and meals and goodies throughout the holidays. Throw in treats here and there as suggested earlier and you can rest easy knowing weight gain is not inevitable.
Most importantly, maintain your management routine. Taking care of yourself is always number one, but for the holidays it allows you to fully embrace them. Medicines should be taken on time. Hydrate well and allow time for rest. If you regularly exercise, try to work physical activity in to your holiday experiences. Shopping burns calories, the walking is gentle on the joints, and you don't even realize your exercising while your enjoying yourself. Sleep is also essential. Life happens and you may not go to bed at the same time as usual or wake as normal, but do the best you can knowing you will pay for overextending yourself. This should be a general rule among all, not just the chronically ill. There is no shame in taking care of yourself so you can enjoy this holiday season and more to come.
Finally, money. When is money not an issue. Now matter how much we have there are so many opportunities to spend it, it always goes quickly while leaving you still needing more for that one thing you need. With an illness the finances are stretched a little further. Remember that the holidays are not about money. No one will think you love them more if the gift you get is top notch. If they do, they are shallow. It is such a good feeling to give to others and see them happy by what you have done. Gifts do not have to be bought. With sites like Pinterest, there are a million ideas out there for homemade or inexpensive yet thoughtful gifts. Do not give in to the propaganda of the holidays; give in to the joy the togetherness and remembrance of the holidays.
Anyone with a chronic illness is dragged down daily by this disease to manage. Know that the disease does not define you. It is as much a part of you as an arm or a leg, but it is simply one puzzle piece that makes the masterpiece that is YOU. We all deserve to celebrate. We all deserve some togetherness. Whether these things are wrapped in to holidays or otherwise, embrace every moment you have. Good or bad, it's another moment. How do you want to spend it?
Wednesday, November 20, 2013
Sweet 16
Today marks 16 sweet weeks after surgery to implant the Enterra, a gastric stimulator. I have to say it has been on my mind all day long just how far I have come in these 16 weeks. Then I start to think how far I have come since this time last year. Although this path has been long and often painful emotionally and physically, as I look back I can see how every person, every doctor, every step along the way has been so crucial in my journey to this point.
I talk a lot about how there were not as many resources for me in New Mexico. This is a true statement. I lived in New Mexico for 30 years. Lived. My very first pediatrician was almost a part of our family. He referred me to my first internist when I was a preteen. She told us then that the big picture of my health would take time to come into view, but there was definitely a quirk they weren't catching. In college I was bounced around for a little while until a really great endocrinologist began chipping away at the pieces. Moving back to small town New Mexico had its share of challenges, but I will say this as firmly as I can, those small town doctors saved my life. They got me to specialists who sent me to the Mayo Clinic. That opened my eyes to realize I really needed to take this seriously. I am no immortal. Those small town doctors eventually put puzzle pieces together to refer me to Dallas for this very procedure. Then, they referred me to Johns Hopkins to be sure their plan was the right plan. So whatever little resources New Mexico had, it once again is the Land of Enchantment because a few gems saved my life.
To get to the business side, for those of you interested in my progress as well as this incredible technology behind the gastric stimulator, today is a good day. Last week I had an appointment with my surgeon/ gastroenterologist and the Enterragator. I tell my husband I am like Iron Man and the Enterragator, which helps the doctor control my stimulator, is what keeps me running. I am still working on the lingo so forgive me for not talking technically about the device and what happens at the appointments that leads to adjusting the stimulation and whatnot. I have hit a plateau since my last appointment and blog post. Not to worry though, a plateau is level not a decline! I am still worth a buck, but no more. My appetite has decreased as well as an increase in nausea and discomfort. Based on that as well as what the Enterragator told my doctor, he bumped up the stimulation just a bit once again. This is normal, as with anything in your body there is an ebb and flow that we are manually trying to keep in equilibrium. The discouraging part, I have to slow down on challenging my diet and return back to "safe foods" for a while. "Safe foods" meaning things I could eat before the procedure without too much trouble. I am welcoming the nutritious smoothies, fruit bars, and eggs...not that I ever cut them out completely, but they are again replacing more indulgent meals. I suppose if anytime is a good time, now is because they have become comfort foods for me. Autumn is perfect for comfort foods.
I am getting more used to having the device in my abdomen. The pain from the surgery is starting to lessen more and more everyday. It is still a little tender right at the site of implantation. If I do too much, my stomach muscles get sore. Bending and twisting along with certain clothing irritate it. But overall, these little inconveniences are nothing compared to what I was dealing with in the past. I rarely get a distended belly anymore. I actually feel food moving along my system in a more natural manner. Gas and regularity are not an issue. The biggest blessing is being able to eat three meals a day without feeling like I ate the entire McDonald's menu in one sitting.
Thanksgiving is coming up and everyone is wondering what I will be doing. I will gladly tell you, I will be doing the same as everyone else. I will be relaxing, spending time with family, and enjoying my son's time off from school. I will not partake in the traditional turkey, stuffing, and pumpkin pie meal that most Americans are accustomed to for Thanksgiving. Too many years have past with me trying to conform to a world I no longer fit in always ending with me in tears and pain for nearly a week thereafter. This year I decided to cut myself some slack. Why am I forcing down food that is only satisfying when it is on my tongue for a few short seconds? Instead, I think I will make a meal the day before to cut down on stress. I will make something that is a treat to myself as well as my family, but it will be a feast in my sense. I am sure there will be enough left-overs for me to enjoy the next day. On Thanksgiving itself, I will join family and friends for their feasts and enjoy their company with no pressure and no misery nightcap. Maybe some Thanksgiving in the future (next year?) I can enjoy the traditional meal and if not, oh well. I will make my own traditions and still enjoy life just as much as the next gal.
All in all, I can genuinely say this is my sweet 16!
I talk a lot about how there were not as many resources for me in New Mexico. This is a true statement. I lived in New Mexico for 30 years. Lived. My very first pediatrician was almost a part of our family. He referred me to my first internist when I was a preteen. She told us then that the big picture of my health would take time to come into view, but there was definitely a quirk they weren't catching. In college I was bounced around for a little while until a really great endocrinologist began chipping away at the pieces. Moving back to small town New Mexico had its share of challenges, but I will say this as firmly as I can, those small town doctors saved my life. They got me to specialists who sent me to the Mayo Clinic. That opened my eyes to realize I really needed to take this seriously. I am no immortal. Those small town doctors eventually put puzzle pieces together to refer me to Dallas for this very procedure. Then, they referred me to Johns Hopkins to be sure their plan was the right plan. So whatever little resources New Mexico had, it once again is the Land of Enchantment because a few gems saved my life.
To get to the business side, for those of you interested in my progress as well as this incredible technology behind the gastric stimulator, today is a good day. Last week I had an appointment with my surgeon/ gastroenterologist and the Enterragator. I tell my husband I am like Iron Man and the Enterragator, which helps the doctor control my stimulator, is what keeps me running. I am still working on the lingo so forgive me for not talking technically about the device and what happens at the appointments that leads to adjusting the stimulation and whatnot. I have hit a plateau since my last appointment and blog post. Not to worry though, a plateau is level not a decline! I am still worth a buck, but no more. My appetite has decreased as well as an increase in nausea and discomfort. Based on that as well as what the Enterragator told my doctor, he bumped up the stimulation just a bit once again. This is normal, as with anything in your body there is an ebb and flow that we are manually trying to keep in equilibrium. The discouraging part, I have to slow down on challenging my diet and return back to "safe foods" for a while. "Safe foods" meaning things I could eat before the procedure without too much trouble. I am welcoming the nutritious smoothies, fruit bars, and eggs...not that I ever cut them out completely, but they are again replacing more indulgent meals. I suppose if anytime is a good time, now is because they have become comfort foods for me. Autumn is perfect for comfort foods.
I am getting more used to having the device in my abdomen. The pain from the surgery is starting to lessen more and more everyday. It is still a little tender right at the site of implantation. If I do too much, my stomach muscles get sore. Bending and twisting along with certain clothing irritate it. But overall, these little inconveniences are nothing compared to what I was dealing with in the past. I rarely get a distended belly anymore. I actually feel food moving along my system in a more natural manner. Gas and regularity are not an issue. The biggest blessing is being able to eat three meals a day without feeling like I ate the entire McDonald's menu in one sitting.
Thanksgiving is coming up and everyone is wondering what I will be doing. I will gladly tell you, I will be doing the same as everyone else. I will be relaxing, spending time with family, and enjoying my son's time off from school. I will not partake in the traditional turkey, stuffing, and pumpkin pie meal that most Americans are accustomed to for Thanksgiving. Too many years have past with me trying to conform to a world I no longer fit in always ending with me in tears and pain for nearly a week thereafter. This year I decided to cut myself some slack. Why am I forcing down food that is only satisfying when it is on my tongue for a few short seconds? Instead, I think I will make a meal the day before to cut down on stress. I will make something that is a treat to myself as well as my family, but it will be a feast in my sense. I am sure there will be enough left-overs for me to enjoy the next day. On Thanksgiving itself, I will join family and friends for their feasts and enjoy their company with no pressure and no misery nightcap. Maybe some Thanksgiving in the future (next year?) I can enjoy the traditional meal and if not, oh well. I will make my own traditions and still enjoy life just as much as the next gal.
All in all, I can genuinely say this is my sweet 16!
Tuesday, November 12, 2013
Connected
November is Diabetes Awareness Month because of this, there are many websites promoting and selling diabetes related merchandise such as jewelry, clothing, t-shirts, etc. I have mentioned previously that my sister has Type I Diabetes too. I enjoy this month because there is so much promotion for Breast Cancer Awareness (which is greatly needed and I support fully), it feels good to know people are still working on a cure for diabetes. I have always worn my diabetes as a badge of honor and will gladly talk about it if someone asks. My sister has always been more reserved about health issues, especially her own, but this month I found these bracelets we could get to show our solidarity in this battle we fight throughout life together. I was actually really pleased and thankful when I sent the link to my sister suggesting we get these bracelets and she agreed.
I have to give her credit. She lives in a completely different world than I do. In her business, health issues are seen as a weakness or risk. Her career and environment are not exactly compassionate to human pitfalls, but it is such a rewarding field and she is so passionate. They say, "If you're going to work for the rest of your life, do what you love and it won't be work." To take this back a bit, I also want to credit her for following her dreams. Like many with chronic illnesses, diabetes stopped her career path dead in its tracks. She took a minute, evaluated the situation, put her head down and kept on trudging. She may not do what her childhood mind dreamed up, but she found a way to be involved in what she loves despite the evil of diabetes while still making a living.
Needless to say, being two time zones away from my sister makes the distance feel even greater at times. With these bracelets, even when I cannot talk to her I will look at it and know we are connected. This was my thought as I was looking at the merchandise. Then I had an epiphany- not only are we connected as sisters, we have this remarkable connection through diabetes. There are things we can understand about each other that cannot be described in words. We have a trust in each other that is so steadfast and the illness has made our unbreakable bond even tighter. This thinking turned into reminiscing, which brought to light another epiphany.
Our father, Don, was diagnosed with Type I Diabetes at the age of 5 back in the 1950s. In those days it was such a different diagnosis, treatment, and prognosis. It was so much more difficult to manage. In adulthood it was thought that diabetics would have greater infertility rates. My parents were blessed with one pregnancy during which they were told the child will only have about 25% chance of having Type I as well. That was my sister, born healthy. A second pregnancy three years later produced another healthy baby, ME. Unfortunately we lost our father this month in 1987. Throughout childhood everyone kept a watchful eye on us, but doctors had determined that the 25% statistic was wrong and we should not worry about the eventual development of Type I.
I, of course, had my first minor scare with chronic illnesses in my pre-teen to early teen years. Type I was ruled out and not feared thereafter. Somewhere deep in my gut though, I always thought it was in my future. About three or four years after my fears should have been relieved by the rule out, my sister called from college with the news that she had Type I Diabetes. It was a devastating blow to our family. I cannot imagine what it must have been like for her to go through that process basically alone away at college. She was 20 years old.
For the next few years I watched her learn to live this new life (in snapshots during her visits home). Type I is usually diagnosed in childhood, previously known as juvenile diabetes. A 20 year old college student with only a mild cardiac history is definitely not the typical Type I victim. She was treated as a Type II patient for a while, which made her much sicker, until the determination was finally made that it was, in fact, Type I. An astonishing realization for us all. I also think the label itself mattered to her because we had lost our Dad to this very thing only a little more than a decade before. With this news, I thought that gut feeling I had all my life must have been misinterpreted. It was not my fate but my sister's...or so I thought.
I rested easy for all of about 20 minutes. My own health started flaring up about a year after her turmoil started. I managed my thyroid problems and stress as that is where they thought my symptoms stemmed. Three years after my sister's roller coaster ride into a Type I Diabetes diagnosis, I had to call her to take me to the ER because I had spent the day going about my now college life without being able to see clearly, dying of thirst, and feeling unbelievably awful. Within minutes of getting to the ER, the inevitable was seen. My blood sugar was 427 (I will never forget). The irony of this, I was the same age my sister was (almost to the day) when she was diagnosed. An irony that has been pointed out by many doctors as eligible for research.
When I was pregnant with my own son (an unplanned pregnancy) I asked as many questions as possible. I state that it was unplanned because it is never a good idea for a diabetic to get pregnant without good management and an "all-clear" from one's doctor. I was only 22 and only a year and a half out from my own diagnosis. I was told by prenatal experts then that Type I Diabetes is not as closely linked to genetics as Type II is. It was described to me as being more of a deformity like a missing thumb or a third nipple ;-) . With that said, I was told that my son has no more of a chance of developing Type I Diabetes than his peers; if anything the percentage was not even statistically relevant.
Knowing all of this now, and getting back to the amazing connection my sister and I had, that second epiphany struck me. We have this remarkable connection with our dad. I move through life, especially right now with my recent health upheaval, longing for my dad's physical presence. I have so many questions. I want him to hold my hand through this. I have complaints and concerns only he would understand and not try to dismiss. But, he is here with me daily. I have this connection with him. The three of us have this connection that so many others will not. You may think this is a sad or dark thing, but that is not how I see it.
I see my illnesses as guidance. I believe they give me knowledge I would not seek out, a compassion unmatched, wisdom beyond my years, and they keep me grounded and focused on what is really important in life. With diabetes this is constant because we check our blood sugars up to ten times a day sometimes. That reminder that I am not in control and I am not entitled to anything is there, always. This, I believe, makes me a better person. Truly, a blessing in disguise. Adding another layer of blessings, this bond/ connection between Dad and his only children, my sister and me. We have a new understanding of what his life was like and how amazing he must have been to make such an impression on everyone around him. We have an understanding of each other that no one else, not even other sisters, could achieve. Now, I want these bracelets even more.
My sister and I talk daily. Thanks to modern technology, we are constantly connected. I am even connected with my mom in New Mexico and my aunt in Utah and my cousins in California.... I have not felt "connected" to my dad in that sense since I was four years old. I now have a new perspective on our connection. It goes beyond father/daughter, it goes beyond two people suffering with Type I Diabetes, it goes all the way to the top. I have ALWAYS felt like my dad watches over me and helps guide me through life, making decisions and life choices or holding me through hard times. I now feel like he laid the path for my sister and I to walk down hand-in-hand. I feel his smile shining down on us, proud that we have grown into such amazing women and that we are closer than we could have ever thought as bickering kids.
In this day of Facebook and blogs and Instagram and Twitter and email and cell phones and text messaging, we get lost in these sometimes superficial connections with people. Let's make a conscious effort to put down or shut off the electronics and celebrate the REAL connections we have in our life. The connections with those who are truly important to you. The connections you desire to nurture and tend to are the connections you will carry with you through good and bad times to come. At the end of the day, all you need is love. Right, Lennon?
I have to give her credit. She lives in a completely different world than I do. In her business, health issues are seen as a weakness or risk. Her career and environment are not exactly compassionate to human pitfalls, but it is such a rewarding field and she is so passionate. They say, "If you're going to work for the rest of your life, do what you love and it won't be work." To take this back a bit, I also want to credit her for following her dreams. Like many with chronic illnesses, diabetes stopped her career path dead in its tracks. She took a minute, evaluated the situation, put her head down and kept on trudging. She may not do what her childhood mind dreamed up, but she found a way to be involved in what she loves despite the evil of diabetes while still making a living.
Needless to say, being two time zones away from my sister makes the distance feel even greater at times. With these bracelets, even when I cannot talk to her I will look at it and know we are connected. This was my thought as I was looking at the merchandise. Then I had an epiphany- not only are we connected as sisters, we have this remarkable connection through diabetes. There are things we can understand about each other that cannot be described in words. We have a trust in each other that is so steadfast and the illness has made our unbreakable bond even tighter. This thinking turned into reminiscing, which brought to light another epiphany.
Our father, Don, was diagnosed with Type I Diabetes at the age of 5 back in the 1950s. In those days it was such a different diagnosis, treatment, and prognosis. It was so much more difficult to manage. In adulthood it was thought that diabetics would have greater infertility rates. My parents were blessed with one pregnancy during which they were told the child will only have about 25% chance of having Type I as well. That was my sister, born healthy. A second pregnancy three years later produced another healthy baby, ME. Unfortunately we lost our father this month in 1987. Throughout childhood everyone kept a watchful eye on us, but doctors had determined that the 25% statistic was wrong and we should not worry about the eventual development of Type I.
I, of course, had my first minor scare with chronic illnesses in my pre-teen to early teen years. Type I was ruled out and not feared thereafter. Somewhere deep in my gut though, I always thought it was in my future. About three or four years after my fears should have been relieved by the rule out, my sister called from college with the news that she had Type I Diabetes. It was a devastating blow to our family. I cannot imagine what it must have been like for her to go through that process basically alone away at college. She was 20 years old.
For the next few years I watched her learn to live this new life (in snapshots during her visits home). Type I is usually diagnosed in childhood, previously known as juvenile diabetes. A 20 year old college student with only a mild cardiac history is definitely not the typical Type I victim. She was treated as a Type II patient for a while, which made her much sicker, until the determination was finally made that it was, in fact, Type I. An astonishing realization for us all. I also think the label itself mattered to her because we had lost our Dad to this very thing only a little more than a decade before. With this news, I thought that gut feeling I had all my life must have been misinterpreted. It was not my fate but my sister's...or so I thought.
I rested easy for all of about 20 minutes. My own health started flaring up about a year after her turmoil started. I managed my thyroid problems and stress as that is where they thought my symptoms stemmed. Three years after my sister's roller coaster ride into a Type I Diabetes diagnosis, I had to call her to take me to the ER because I had spent the day going about my now college life without being able to see clearly, dying of thirst, and feeling unbelievably awful. Within minutes of getting to the ER, the inevitable was seen. My blood sugar was 427 (I will never forget). The irony of this, I was the same age my sister was (almost to the day) when she was diagnosed. An irony that has been pointed out by many doctors as eligible for research.
When I was pregnant with my own son (an unplanned pregnancy) I asked as many questions as possible. I state that it was unplanned because it is never a good idea for a diabetic to get pregnant without good management and an "all-clear" from one's doctor. I was only 22 and only a year and a half out from my own diagnosis. I was told by prenatal experts then that Type I Diabetes is not as closely linked to genetics as Type II is. It was described to me as being more of a deformity like a missing thumb or a third nipple ;-) . With that said, I was told that my son has no more of a chance of developing Type I Diabetes than his peers; if anything the percentage was not even statistically relevant.
Knowing all of this now, and getting back to the amazing connection my sister and I had, that second epiphany struck me. We have this remarkable connection with our dad. I move through life, especially right now with my recent health upheaval, longing for my dad's physical presence. I have so many questions. I want him to hold my hand through this. I have complaints and concerns only he would understand and not try to dismiss. But, he is here with me daily. I have this connection with him. The three of us have this connection that so many others will not. You may think this is a sad or dark thing, but that is not how I see it.
I see my illnesses as guidance. I believe they give me knowledge I would not seek out, a compassion unmatched, wisdom beyond my years, and they keep me grounded and focused on what is really important in life. With diabetes this is constant because we check our blood sugars up to ten times a day sometimes. That reminder that I am not in control and I am not entitled to anything is there, always. This, I believe, makes me a better person. Truly, a blessing in disguise. Adding another layer of blessings, this bond/ connection between Dad and his only children, my sister and me. We have a new understanding of what his life was like and how amazing he must have been to make such an impression on everyone around him. We have an understanding of each other that no one else, not even other sisters, could achieve. Now, I want these bracelets even more.
My sister and I talk daily. Thanks to modern technology, we are constantly connected. I am even connected with my mom in New Mexico and my aunt in Utah and my cousins in California.... I have not felt "connected" to my dad in that sense since I was four years old. I now have a new perspective on our connection. It goes beyond father/daughter, it goes beyond two people suffering with Type I Diabetes, it goes all the way to the top. I have ALWAYS felt like my dad watches over me and helps guide me through life, making decisions and life choices or holding me through hard times. I now feel like he laid the path for my sister and I to walk down hand-in-hand. I feel his smile shining down on us, proud that we have grown into such amazing women and that we are closer than we could have ever thought as bickering kids.
In this day of Facebook and blogs and Instagram and Twitter and email and cell phones and text messaging, we get lost in these sometimes superficial connections with people. Let's make a conscious effort to put down or shut off the electronics and celebrate the REAL connections we have in our life. The connections with those who are truly important to you. The connections you desire to nurture and tend to are the connections you will carry with you through good and bad times to come. At the end of the day, all you need is love. Right, Lennon?
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