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.

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?

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!

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?

12 Weeks Proud

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

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

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

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

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

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

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

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

Life wins

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Time for dinner.

8-week post surgery update coming soon

Keep checking - it will be posted sometime soon. 

Roller Coaster

Today I had my second appointment with my new rheumatologist. I like her. Dr. Banerjee. At my last appointment she spent a lot of time with my husband and me. She was very thorough and did a full exam and workup. I could tell the whole time that she had a suspicion about my tentative Undifferentiated Connective Tissue Disease diagnosis. I was hopeful because I hate the harsh medication: plaquenil- an anti-malarial med.

I went through the exam and tests. I accepted her referrals to a dermatologist and physical therapist. My skin is always irritated in one way or another so I would love some relief. The physical therapy I could give or take. It is for joint and muscle pain, but I have seen them before to no avail. My derm appointment is soon. I am ready to feel better with better treatment at the root of the issues.

At the appointment today I got some unsettling news. After going through my medical records/history and reviewing my lab results she does not feel there is any rheumatological disease. GOOD NEWS plus no plaquenil. But......some electrolyte levels we low; sodium and potassium. In addition to my skin irritation, hyperpigmentation, and symptoms mimicking lupus, she strongly feels there is adrenal insufficiency. That is Addison's disease. BAD NEWS.

Doctors have been dancing around this with me for years. It is part of APS Type II. But I am not ready for more tests. She suggested another skin biopsy, this time of the vasculitis on my hands. Last time I had one of the face that proved hyperpigmentation. She also is going to speak to my endocrinologist about further testing. I have been tested before, but there is more they can do.

I lost it. I broke down and cried in her office. Blubbering, telling her I was glad to be relieved of one diagnosis, I am just not ready for more. ....or more tests and waiting. I thought I could have a break for a little while. But I want to feel better.

On a happy note, today is my seven week birthday after surgery. So far, so good.

Snack For The Soul

When I referred to my surgery date in my last post as my new birthday, I had no idea how deep those feelings would really run. Every day I wake up feeling a little different. Every day there is some flash of novelty and comfort in my new world. Every day I become increasingly more aware of all the gifts that surround us. That all sounds so mushy and cliché, but it is so blatantly true.

I just had my 4-week follow up appointment with both of the surgeons who performed the procedure of implanting the Enterra Gastric Neurostimulator. I have to say that I had been really nervous about the appointments. I seemed to have hit a plateau shortly after the procedure and didn't seem to be improving in terms of nausea, fullness, and lack of appetite. For some reason in my mind, the natural processes in the world are in my control...... (Although it never seems to work out the way I want it). I was preparing myself to hear all the things I had done wrong since the surgery that would be halting my progress. I was so prepared for all the wrong things.

My first appointment was with Dr. Weiner, my gastroenterologist, and the Medtronic representative. Medtronic is the manufacturer of the Enterra and the rep helps the doctor become familiar with the treatment and technology.

At that appointment they asked about my symptoms. They were concerned with my level of nausea because that was one of my worst symptoms prior to surgery. I am happy to report that it has gone down at least 50%-75%. I complained of a lot of cramping. I describe it as chugging a glass of water and then sprinting...that kind of side cramp is what I feel. They explained to me that my stomach, the muscle, hasn't been used this way in a long time. As with any atrophied muscle, it will fatigue, cramp, and get sore. That's normal. I also complained of constipation. (TMI? Well this blog is to help inform, comfort, or inspire those in similar situations, so we have to talk truth) Dr. Weiner talked about my medications and my absorption rate. With my stomach processing more before things move into the small intestine, I am absorbing more of everything (Woot Woot!!) this leading to my system getting overloaded. He reduced one medication in half.

All in all, the symptoms, pain, soreness, and novelties are all normal and a positive sign. The rep said, statistically, I am in the top 5% of patients in terms of progress at this point. The doctor was really pleased as were my husband and I. Even the nurse and front office woman were in on the excitement as we have gone through this journey together.

"Weight gain at this point?" you may ask. Well, I am almost at my pre-op appointment weight again, but I am going in the right direction and that is more than we can say for the past several years. Appetite? I wake up hungry nearly every day. My portions are no bigger, just a better variety and more consistent. My diet restrictions are the same but I am able to enjoy more meats, vegetables, and fat because they no longer sit in my stomach for hours on end. I still get a distended belly every time I eat or drink. That will likely continue to happen just as an untreatable symptom of gastroparesis, but my stomach should grow a little so I can eat better portion sizes in time.

To check the device itself (remember it is sewn into a pocket of subcutaneous tissue in my abdomen) they held a large smart-phone looking thing (called The Enterragater, gggrrr) up to my belly where the device is, pressed it against my skin, and the screen started showing them information. Based on that information, which all looked positive, along with my symptoms they decided to bump the voltage up a notch. They told me to expect a fluttering sensation and possible nausea for the next 24 hours but it would subside. Essentially, that should increase my stomach activity a little more. They were right. Almost instantaneously, with a giggle, like feeling your baby kick for the first time, the fluttering began. I am lucky to say it never made me nauseous, just tired.

Unfortunately, with the start of the new school year I managed to catch a nasty cold. This has been a small setback, flaring up some unwanted symptoms, but what cold doesn't? We were told we should be able to see full effects of the device in 6 months to a year. I also have managed to unknowingly, in the fog of euphoria, ingest dairy, chicken, and strawberries - all of which I have allergies of some degree to. So a few more kinks, but thus is life.

The second surgeon merely needed to check the incisions. He works closely with Dr. Weiner and so he was already up to date on my progress and was pleased. Can I type that word enough? It is such a foreign feeling to me to walk out of doctor's offices with hope and positive reports.

I am (actively trying) not to allow the fear to hold me back. I am still trying to be conscious, careful, and conscientious, but I am human and sometimes forget to double or triple check ingredient lists or that I had strawberries yesterday so they aren't allowed for a few days if I would like to continue to feel well. And I don't beat myself up over a minor mistake because it will pass.

My diabetes is a bit of a roller coaster right now. I see my endocrinologist next week. With absorption rates changing and fluctuating so are my insulin needs and blood sugar levels. I have been struggling with a lot of lows which has only encouraged more calories. This crazy balancing act that is life can be fun sometimes. I am serious; I am enjoying this challenge.

I am slowly moving back in to normal daily activities. I am beginning to move better and with less pain. It will be a work in progress to learn to move with this inside of me, but as with anything, we adapt. I am smiling more. I am laughing more. I am enjoying more. It is amazing what a snack can do for your soul.

July 31, 2013- My New Birthday

On July 31, 2013 I underwent the surgery to implant an Enterra gastric neurostimulator. Right upfront, I will say, I can honestly say I know of something that compares to childbirth. The difference being that you do not come home with an adorable infant and all those endorphins to distract you from the pain. Aside from that, it is the birth of a new life.

On July 30 I was admitted to Texas Health Presbyterian Hospital of Dallas. The night before I began a cleanse, of-sorts, clear liquid diet. On admittance I was told nothing by mouth as if 5 p.m. that evening. The surgery was scheduled for 9 a.m. the next morning. An IV was started and some blood tests were run. And then, we waited.

The next morning I was transported to the pre-op waiting/ holding area (real terminology lol). It felt like my husband and I waited a life-time before the anesthesiologist came to knock me out. Before I knew it I was waking up with an incredible burning throughout my belly.

The surgery consisted of an endoscopy and two incisions. One horizontally above the lowest left abdomen, about 2 1/2- 3 inches long and the second vertically right under my sternum, about the same length. Underneath the horizontal incision they created a pocket in the subcutaneous tissue or fatty-tissue. Inside that pocket is the Enterra gastric neurostimulator. It is about the size of a pocket watch. I don't know the details on exactly how they connect leads into the stomach lining. These leads are what they use to "stimulate" the stomach to move as a healthy stomach does, or as close to that as possible.

The first night I was vomiting up everything from medicine to water to the smoothie my husband had bought me for dinner. Unknowingly, he had gotten one that had frozen yogurt in it. I am allergic to casein so I cannot have dairy. We still don't know if the procedure or the smoothie or the medicine made me so sick. By the next morning they had my pain controlled and I was able to drink an all fruit smoothie. That afternoon I had french fries. Not the best dietary decision, but exciting nonetheless.

The recovery process has been a challenge. Having your abdomen cut in to is painful. You have no idea how much you use your abdomen until you can't. I have needed help with nearly every daily task from using the rest to putting on clothes to even sitting up. I stayed in the hospital a total of 5 days so only 3 days after the procedure.

By the second day I was able and eager to get up an walk. I walked the length of the hospital hall I was staying in with the help of my parents. I was lucky to have my husband, son, mother-in-law, cousin, parents, brother, and niece spend time with me in the hospital. The distraction of love and support was indescribable.

I had my first post-op appointment yesterday. I am almost up to my pre-op weight, but I have gained weight since the procedure so that is an accomplishment. The incisions are healing well and my pain is par for the course.  That was my first long car ride since the drive home. It is a little painful, but getting easier. I am eating 3 square meals a day. Although my portion size has not gone up, the consistency has. That included with no feelings of overly full or long lasting fullness. All these are positive signs.

Overall, I am extremely happy with the decision to get a gastric stimulator. The doctors and hospital staff were wonderful. I have a long way to go but a good team behind me to help along the way. My mother-in-law has become my arms and legs around the apartment walking the dog, cleaning, and doing laundry. My husband is on leave from work and he takes care of me and our son, making sure we get bathed, clothed, and fed everyday.

I will keep you posted on my progress throughout this journey.

Unexpected Joy From Unexpected Change

I am excited to say that a new chapter of my life has begun. I moved to Ft. Worth, TX. It happened so quickly. After being torn between staying where my heart is or moving to a place where my medical situation could be better handled, I got a shove in the right direction. With the help of my family, working as a ninja-intervention team, we found a place to stay that met our needs. Within days of locking a place down, our home was packed and moved. The week of July 4th, we made Texas our new home.

Within days, I quickly noticed what a God-send it was for my family to be so aggressive. I have an unlimited amount of options for food at much cheaper prices than I ever enjoyed in New Mexico. Shortly after arriving, my Dallas based gastroenterologist called with a date for the gastric stimulator implant surgery. In saying that, they requested I make a few appointments and undergo some last minute testing.

By now, I have been here with my son for two weeks. I have lessened my food bill by at least a third, which will come in handy when medical bills start rolling in. I have met with both doctors who will be involved in the implant surgery and I am being evaluated to get my gallbladder removed finally. Before, no doctor wanted to do surgery for fear of unknown risks.

I cannot even explain how good this all feels, as strange as that may sound. Not only was it nice to be readily available for all these appointments, but it was even nicer to only travel a few miles to get home to rest thereafter. I have also enjoyed the company and support of family who live close by. Beyond all that, and possibly most important, I feel like part of the human race again.

For the past 5 years, limitations have been put on my life time and time again. Friends dropped off the less active I got. They stopped calling and interacting with me with claims that I was no longer acting like myself. All of this I can understand because I often wanted to run from the uncomfortable situation I was facing, but I did not have the luxury. I got strange looks for my thinning frame and even stranger looks for my peculiar diet. Adding to that, it was a daily stress and mission to ensure I had food available that I could ingest without increasing my symptoms. I felt like an outcast. I felt like a spectacle. I felt like an alien.

I am in this new environment. Although I have not had the opportunity to make new friends, I have enjoyed the company of family. I can go to any store, even a corner store, and there are options available for me. On top of that, with as busy as I have been, it has been difficult to stay on my routine. That would normally be very troublesome, but here I can even go through a drive thru and order something. This is not to say that I am falling in to bad habits. The accommodations so many places offer for specialized diets and healthy eating are amazing.

No one looks at me strangely when I order so specifically. No one looks at me strangely when my shopping cart is filled with all natural foods minus gluten and dairy. I am sure my small frame and casual dress does spark a few questions in people's minds but you never see it in their face. Everyone from customer service to health care workers to the average Joe has been so pleasant and welcoming.

My son is adjusting well. Of course, he was sad and scared about the move but we explained all the perks we'd be able to take advantage of. As the weeks have passed and he has seen and experienced so.much, he is sinking in to comfort. He enjoys his cousins company and hasn't even spent time with them all yet. He enjoys all the outings Momma is able to make. We have found a school close by and he thinks it looks inviting. He has seen the hospital where the surgery will take place and met one of the surgeons. He feels confident that improvement is sure to follow.

With all this, I am feeling so blessed. God never answers our prayers exactly as we lay them out or in the manner we wish them to be answered, but he answers them all the same. He has laid this path that I have reluctantly followed for years. Here I am, seeing a light at the end of this tunnel of the unknown. All my life my health has been a mystery. Now, all the doctors agree. All the doctors believe the whole picture is in view. No doctor is acting scared or overwhelmed. It is a feeling of peace and ease I cannot describe.

We are still awaiting my husband's job situation to be ironed out, but we know it is simply a matter of time. It has been a challenge to be here without him.and go through all these life changing events over the phone. We miss him terribly and count the days until it is all final. Nonetheless, the feeling of grace fills my son & myself.

Gastric stimulator, we await you and welcome your implantation. July 31 is the big day. I hope to get back online and fill you all in on my new bionic body and the great changes we expect to come.

In Limbo

Waiting on something that will change your life is like watching water boil.  Now, imagine eagerly watching water in a pot waiting for it to boil while having to juggle three balls in the air, chop vegetables, and find and open the package of noodles intended for that pot.  Have I lost you yet?  Well, that's what my life has felt like this past month.

Currently, as I have mentioned in the past, I live in southeastern New Mexico.  Beautiful country.  Small town, great community, slower paced lifestyle, and very few doctors, even fewer specialist.  I cannot count how many times in the past 5 years it has been recommended that I move to be closer to a team of doctors who can follow me closely.  While that makes perfect logical sense, try telling your heart to leave your home.  I have been working on this last part diligently for the past several months but even more so since I returned home from Johns Hopkins.

My son is my world.  Everyone commends me on my strength and resilience when in reality they need to commend that little man who keeps me smiling every single day.  He goes to the most remarkable school I have ever come across.  His first grade year he made milestones beyond my imagination.  His classmates are like his family and they go grade-to-grade together.  The entire school consisted of 82 children last year and yet they have better scores than any large school.  It is a private, religious based school but tuition is kept low with help from the community.  Religion is so important to me.  Maybe not religion as much as faith, but faith is learned through religion.  He has such a strong faith just from what he has learned in his short time there and the mini lessons we have taught him throughout the years.  It is so hard to walk away from a setting like this, especially when public schools across the country are declining.  Add to that moving an elementary school aged child and your heart can't help but get a little caught up.

My husband and I bought our first home here in the community we grew up in.  We planned to raise our son here.  Our home is no mansion, but it is perfect for the three of us.  We have a nice yard my husband enjoys tending to while my son plays.  It is the perfect size for me to keep up my wifely duties without getting too exhausted.  We feel safe, secure, and stable.  Isn't that what everyone looks for in a home?

The reality is, however, we are no less than four hours away from good medical care.  That is a good six and a half to seven hours for medical care that can handle my condition.  So, we come to this battle of the mind and the heart.  Logically, I need to be closer to doctors who can help.  Logically, we will find a new home, a new school, and a new church.  Logically, we can make any place a home if we can make a safe, secure, stable environment for us all together.  What's the hold up?  Emotions? Fear?  Uncertainty?  All of it plays in as well as intense stress.

I am still waiting to hear from the doctors on an exact date of surgery to implant the gastric stimulator.  I was told that I should receive a call with that information this week.  I have to travel for appointments and to pick up medication this week.  The Fourth of July is coming soon and it is a very big holiday in both my husband's and my families.  My family has a big reunion type celebration planned.  His family always makes a big thing out of the Fourth because it was his uncle's (the patriarch's) birthday, who passed away from cancer 6 years ago.   We are always torn on how to celebrate.  And we are both anxious to get the stimulator implanted to know what life will entail thereafter.

This, as you can imagine, has added so much tension to our home life.  I am no expert.  I have never been through any of this before nor have I dealt with anyone who has.  I have no comprehension of what my husband, as the man-of-the-house, the father, the husband, the sole bread winner, the caretaker, has to deal with.  I cannot imagine the stress and fear he must be facing, let alone the anger and grief that comes along with any major health concerns in a family.  I, on the other hand, am going through it and trying to be as positive as I can.  I feel like I am kind of gliding through it all fairly smoothly until I have a bad day and my emotions bottom out.  My son is watching this, soaking every action and word up like a sponge.  He must be terrified hearing so much he doesn't understand concerning his mother, his family, and himself.  He must feel a little overshadowed by it, although I try to make sure he is not!  It is just one of those situations you shake your head at.  You know what is right and logical and good for us but you can also put yourselves in our shoes and see how difficult navigating it all really is.

What else can you do but face it?  Dead on.  This is what we have been dealt.  There are so many blessings in disguise, if we just look they become so obvious.  I get to be a stay-at-home mom.  I am the sole caretaker of this amazing human being we created out of love.  I know so much more about how the body works and what good nutrition and habits can do for the body.  That I can turn around and use with my son to give him the best health future possible.  My husband and I know the value of hard work and determination.  My son sees the hard work and determination and demonstrates it himself already.  We all have a very strong faith.  We all have also learned deep compassion.  We have also all learned to live in the moment and not take each other for granted.  All of these are great things even if we cannot execute them 100% of the time.

The surgery will be done in Dallas, TX.  Due to the fact that New Mexico has proven it does not have the doctors or facilities to treat me, we are looking to move to Dallas.  The hospital that will do the surgery has all the specialists I need.  They would all be in one facility so they would be able to look at each other's notes and communicate if necessary.  This would in turn cut way down on the traveling we currently are doing to get to appointments with doctors from different facilities who do not communicate.  That means it would also cut way down on the leg work I personally have to do to maintain my current treatment.  I would be close to a well equipped facility in case of emergency as well.  The blessings we may walk in to just by moving to Dallas could be astonishing.

The opportunities my son and husband could see would be great.  My husband's job options would be endless.  His continuing education opportunities would be wide open.  My son would have better sports available and his education opportunities would be wide open as well.  The Dallas/Ft. Worth area is so good at accommodating all sorts of dietary needs.  This would allow me to leave my home for longer than a few hours at a time without preparing a day's worth of meals and medications.  This would open up all of our social lives a lot more.  Social interactions and support systems are so crucial to human survival.  I can only imagine what good it would do for my son to see his mother be a little more active socially with a few more laughs and smiles.

Alas, this is all talk.  The surgery date is yet to be heard.  We have not packed a single box.  Although my husband has a job lined up, there are a few technicalities that need to be worked out first.  We have not found a place that we can call home yet.  We struggle daily to keep our heads up and stay focused on what is really important, our love for one another. 

Never lose sight of what is important.  No money, house, or material possessions can replace your family.  Fear, anger, and grief can cloud your judgment and do more damage than good.  Allow the emotions to flow.  They will not go away unless you do.  By never losing sight of what is important, you can take those negative emotions and turn them into positive productivity.  Life is what you make of it.  Let's make it good and worth it!

Shine

One step at a time and we find our way.  As many of you know, I have been dealing with unknowns for years now.  More recently, about 4 or 5 months ago, my condition and weight became a much greater concern for my doctors and myself.  The doctors started to push again for more answers.  It began with an idea to insert a feeding tube because most of my symptoms throughout my body were flaring up in addition to continued weight loss on an already very thin body.  The feeding tube turned out to be a no-go but that got the ball rolling in other directions.  A referral to Johns Hopkins Medical Center in Baltimore, Maryland with the #3 leading gastroenterologist/ functional medicine doctor in the country along with a referral to an internal medicine doctor/ gastroenterologist in Dallas, TX to be evaluated for a gastric stimulator.  I have trudged my way through this jungle of unknowns and we finally have a clear view, I am so proud to announce.

I was worried that I would not be able to make my uncle's memorial services after his death last month because I was feeling so awful and so weak.  God has His hand on everything.  The Dallas gastroenterologist called just days before the services and wanted to begin the testing necessary to be approved for the gastric stimulator.  I was able to attend my uncle's service as well as take care of the testing.  "What did the testing show?", you might be saying.  Well, I am in need of the gastric stimulator.  After fasting for more than 12 hours, I still had food in my stomach when he tried to conduct an endoscopy (most people move food from their stomach to the small intestine in 30-90 minutes).  A Smart Pill study was conducted as well.  It showed that food stayed in my stomach for 17 hours or more.  When the results were reviewed I was able to come home, just in time to prepare for Baltimore.

About a week after returning from Texas, I was headed in Baltimore's direction with high anxiety about Johns Hopkins and what this doctor would say.  His name is Gerard Mullin.  He wrote a book, Inside Tract, that was recommended to me a few years back.  He is a functional medicine doctor, which means he uses not only western medicine but also nutritional and holistic treatments as well.  I was afraid he was going to offer me some outrageous diet that would be impossible to adhere to in rural America or that something even more remarkable would be recommended.  To my surprise, he agreed with the path I am on.  He agreed with the Dallas doctor saying, "The gastric stimulator is a must." He went on to offer a recommendation that I see a naturopathic doctor as well as a nutritionist specially trained in diabetics and gastroparetics.  His explanation was, food stays in my stomach so long without the aid of stomach acid or any enzymes to break it down or kill bacteria.  The food ferments in my stomach before moving on to my small intestine, carrying dangerous bacteria.  The goal is to balance out the bacteria in my gut all together and with that I should feel better on a day to day basis.

So, here I am.  Five years after being sent to the Mayo Clinic thinking I was only a Type I diabetic.  Five years after thinking that everyone around me, including my doctors, were being dramatic about my health.  Five years after being terrified by hearing the words "Mayo Clinic", thinking only people who are near death go there.  I was wrong.  I was ignoring many symptoms and trying to push through.  I was the dramatic one thinking only people near death are seen at the Mayo Clinic.  Five years of diagnosis on top of diagnosis on top of life style changes and more life style changes.  Five years after thinking no one would figure out what was wrong until it was too late.  Well, guess what!  We have answers.  Not just partial answers, but the full picture is finally in view.  The full picture is now in view AND all the specialists, with all their egos, agree.  Now, I can exhale and it is such a relief!

The end result? Can you relate to any of this?  We can help each other.
I am Lauren.
I am 30 years old.
I have Autoimmune Polyendocrine Syndrome Type II (Schmidt Syndrome).
I have Hashimoto's Thyroiditis treated with hormone replacement medications.
I have Type I diabetes treated with insulin through an insulin pump.
I have Interstitial Cystitis in remission currently.
I have Epilepsy treated with anti-convulsants and natural remedies.
I have Celiac Disease treated with a strict gluten free diet.
I have Undifferentiated Connective Tissue disease treated with an antimalarial.
I have Pernicious Anemia treated with B-12 injections and an ulcer preventing medication.
I have pancreatic insufficiency treated with digestive enzymes.
I have gastroparesis currently being treated with Erythromycin, but soon to be treated by the gastric stimulator.
I have inflammatory bowel disease (not currently labeled as Crohn's or Ulcerative Colitis) currently being treated with pain management due to it likely being caused by the lack of digestion in my upper digestive tract.
I have an autonomic nervous system disorder treated with anti-convulsants as well.
I have a husband and a beautiful son.
I enjoy music, the outdoors, and family.
Learning is a passion.
I like to read.
Finding the good in every person comes naturally along with naivety, but I wouldn't have it any other way.
I am Lauren.

We have answers.  We have direction.  We have something tangible to hold on to and move forward.  I feel like I can finally accept what is going on.  I feel like I can relax and let the doctors take over.  I can settle in to a new normal.  Life is ever changing, but a life style is the hardest thing to change.  I feel ready to take on the world and hopeful that my strong mind will strengthen my body as we begin new treatment.  I feel empowered.  Five years ago, getting to the bottom of this seemed so far off, impossible really.  I struggled, I suffered, I whined and complained, I had melt-downs, I denied, I kept going, and I finally feel myself starting to shine through again.

This little light of mine
I'm gonna let it shine
Let it shine
Let it shine
Let it shine

The Void ( A Tribute)

I really don't know where to begin...except at the beginning.  Two days ago we all got a call that none of us expected.  My uncle, Boyd Lunsford, had suffered a heart attack over night.  From those early morning hours until late that morning we all collectively prayed and cried, yet all of us geographically far from one another.  Many of my family members have built their lives in Texas, particularly the Dallas/ Ft. Worth area, but some further south.  As many could, they rushed to be by his side and to be with family.  Unfortunately, we lost him late that morning.

I would like to put this into perspective for my readers.  A few blog posts back, June 2012 as a matter of fact, I wrote about my cousin who passed suddenly.  That was his daughter.  The third child he has lost in addition to a grandchild.  Then, in October of 2012, not even six months later his brother passed (another uncle of mine).   This recent loss, has again left our family shell shocked still healing from the open wounds we have been mending.  As all tragic things do, this got me to go deep inside myself.

This site was set up to discuss the daily joys and struggles of living with multiple auto immune disorders.  As we all know, one facet of our lives does not define us.  It is simply a piece of the puzzle that makes one whole.  I had been down with the flu since Friday.  My doctors prescribed Tamiflu as the flu can be dangerous to all individuals but especially for those with compromised immune systems.  By Monday, I felt almost no relief so back to the doctor I go and a new prescription is written for an antibiotic as I am also battling strep.  So when Tuesday morning rolled around I was in no mood for phone calls.  I ignored them.  Within a few minutes if not an hour I received an email from my sister.  That's where I got the news.  I quickly got in touch with family in Texas and stayed close to my phone waiting for the best possible news.  It certainly ended much differently than we all hoped and prayed.  In the end, however, I do feel that my uncle is where his heart may have been for some time now.  If nothing else, he no longer has the daily trials we all see.

The next morning, as sick as I had been, my adrenaline, anxiety, and grief would not let me rest.  I walked my son to school.  Even with his enormous imagination and joyful way of describing it along our walk, I still felt pent up emotion.  When I got home I took my dogs out for a short walk, knowing if I pushed myself too hard I would be in trouble, but I had to 'release'.  On that walk something happened to me.  It was particularly peaceful. 

I could vividly smell the April morning air in our small town, my uncle's home town and where he will be laid to rest with those who passed before.  I saw a beautiful bushel of purple flowers.  Purple is my favorite color and purple flowers hold a special place in my heart.  It's like a high dose of serenity.  My uncle was a spiritual man. Anytime he would visit home he would come by and talk to me or take me to visit with him at his hotel.  He always had a story to tell and it usually ended with spiritual wisdom. I felt that rushing through me as I walked along the canal with my dogs. I wondered how these past few months had been so difficult, but in times of extreme stress I can somehow get outside of myself and feel weightless.  I talked and talked to my uncle and before I knew it my heart felt a little lighter.

Now, days have passed, memories are rushing in and family is tying up loose ends.  Services have been scheduled and we are all just trying to cope.  Something resonates with me from that walk yesterday morning, alone with my thoughts and words to my uncle.  My roller coaster, my emotions and rationality ebbing and flowing, my sense of loneliness and feeling lost all has a reason.  There is a void in my life right now I never imagine would affect me so greatly.  My sister.

About 8 years ago my sister and her husband decided to follow their dreams.  They threw caution to the wind and moved from New Mexico (the only place my sister and I have called home) and moved to California.  They met in college.  I could try to pretend I understand what they do, wanted to do, or even got degrees for, but I don't.  All I know is from the time I can remember my sister wanted to live in LA and have something to do with the entertainment industry.  Luckily she found a match in college that suited her and off they went.  At the time I had just learned I was pregnant with my son.

I have to admit I was astonished.  I was amazed that all these years of talk had turned into reality.  I felt so happy that my sister was spitting on everyone who had doubted her along the way, and her ambition never wavered.  I was happy that she had married a man that had similar desires to her.  I was happy that he encouraged her and supported her in her dreams.  But I was devastated.  I was hurt that they had not consulted the little sister before making this HUGE decision (as all married couples should, right?!)  And to add fuel to my fire, this baby growing inside of me, I thought I could only carry with my sister there to hold my hand.  But I stood strong and put on a brave face as they loaded the Uhaul and drove away from the apartment complex we both lived in.  I could not be the thing that held her back.  I had to let go.

Time has passed.  My son was born.  My sister and brother in law are slowly but surely finding their footing (not exactly a "go to college and get a nice job" kind of field).  I have since been married and moved back to my hometown.  I have made friends and lost friends along the way.  The most trying of all has been my health, I must say.  I just recently noticed how much harder it is to keep picking myself up and dusting myself off to continue moving forward.  On that walk that morning after my uncle passed my light-bulb moment hit and I realized it's "The Void".

I have a void in my heart.  My sister.  I never thought of it completely or in the light it was shown to me on that walk, but I realized all that she meant to me.  As kids (she is my only biological sister) we were always together.  She, this pretty little prim and proper princess with acting coursing through her veins and I, this rough and tumble tom-boy never understanding a word she said.  We had our differences and our fights, or so I thought.  I remember the day my parents drove her to college and the second the car drove away from our house, I crumble to the floor in tears.  I thought, "What?! I thought you'd be the happiest to see her go.  What is all this?!" 

Once I got to college, I went to UNM just as she did and just three years behind her, we grew so much closer.  She became my best friend.  I felt similar sadness when she left for California, but I thought my sadness would be replaced by knowing she was where she really wanted to be.  I also thought I would grow to learn to live without her so close.  I never have.  Recently, that has become so unavoidably apparent.

She and I lost our father to complications of diabetes when we were young.  Before his passing, my parents had spilt so my sister and I traveled from NM to CA for visits.  After his passing we continued those trips to stay close with his family.  Although in our small town in NM we had different identities, anywhere else we went she was by my side.  Even in our town she had my back when I was too young and dumb to realize.  When she went off to college, I was starting a new school and found it difficult to find friends.  I realized back then, she was the good one at talking to people and analyzing situations.  I didn't know how to do it on my own, comfortably.  When I got to college, she was a veteran and walked me through everything from finding a place to live, a job, and teaching me about finances and my future.  I always thought she was too dramatic and grown up.  I always thought she worried too much.  I now know, she did it for the both of us........my entire life.

Now I am in NM and she is in CA.  This last year has been tumultuous for our close and extended families.  I recently upgraded to a smartphone (I am technically challenged and was trying to be the driving force holding the USPS open) and so she and I have been in better contact.  You know them Cali folk, all tied down to their gadgets and too busy for phone calls.  For a long time I resented our lack of communication until I got the smartphone and realized the different lifestyles these two states have.....well let's face it, I was living a little in the past.  These days we communicate as if we lived in the same town.

That morning walk I took, sick as a dog with my dogs just to clear my head.  That morning walk to come to grips with the sudden passing of an uncle I have always learned from.  He taught me or should I say showed me what I was really reaching out for all this time.  My sister.  My best friend.  My caretaker.  My financial advisor, possible lottery-winner coach, therapist, and punching bag. 

I have written recent posts about feeling down and out.  I have written recently how difficult it has been to open up about all of that as well as feeling like I had no where to turn.  I have recently, openly written about my sense of hopelessness and feeling lost.  God takes His time, but He really does have a plan for everything.  He really does carry you through the most difficult parts of life.  This time, I believe through my uncle, He touch me.  He hugged me.  He held me tight and told me the answer to the prayers I have been screaming for months and for years. 

It is not friends I need.  It is not that dream job I need.  It is not the degrees I came short of before falling too ill to finish that I need.  It is not the perfect husband or child that I need.  It is and never has been about possessions.  It is the one thing that has stayed strong, sturdy, faithful, loyal, and honest from my first breath.  My sister.  She really does complete me.

We are opposites in every aspect.  Our personalities are different.  Our styles are different.  Our passions are different.  Our approach on life is different.  Even our spiritual and faith ideas do not always match up.  Yet somehow, they do.  So well.  She makes my puzzle complete.  I know God has His plan and certainly is not done with me yet, but without my sister He would not be able to complete my puzzle.  He knew we needed each other.  And that is something I will hold on to for the rest of my life.

 

Reaping Hope

Yesterday I was inspired in church.  I felt that "light bulb" moments (as I like to call them) are often useful wisdom that is gained along a lifetime.  Why not share that wisdom you just gained so that it can be passed on or corrected if it's a misconception?

A week or so ago I got a card from my brother's family.  It contained a gift to help us during these trying times.  In addition to the thoughtful gift, this card had many scriptures written on it to help anyone going through trials.  I read them over.  I was so appreciative of the gift, but the card had more meaning.  I have recently been leaning much more on my faith to help me.  I realized several months ago that my bible, that which was my father's, is packed away in a box in storage somewhere.  So, I have been using my kindle and random other places to read the bible.  I, myself, still find it very difficult to understand.  The language is old and often cryptic.  Sometimes the message jumps right out at me, but more often than not I need a little guidance.  There was a particular passage that was on the card; whereas most were written out, this one was just noted (I see now that it was too long, as many Psalm or Proverbs are) so I took a mental note to look it up later. 

It was Psalm 126 '...when the Lord brought home our treasure, all delights were like a dream; in defeat, a shout of victory; in the sand, a flowing stream.  Mouths that once were parched with anguish, now with shouts of joy are filled; laughter now replaces sadness for the goodness God has willed.  Bring us back to former glory, lost through the year's of exiles pain.  Generations long forgotten, seek God's favor to regain.  Those who plant their seeds with grieving, wetting soil with falling tears, shall rejoice in time of harvest, reaping hope for all those years."

I didn't have to wait long or dig through boxes to find my bible to look up the passage.  In yesterday's church service it was used, and it hit me like a ton of bricks.  I was feeling so vulnerable for my last blog post.  I poured my heart out, showed all my weaknesses and fears, and basically told the world I was crumbling.  This passage reminded me that the crumbling that is happening is only helping to make the future brighter.  It is natural, normal, and perfectly fine for people to show emotions as I did.  It is actually useful.  Just hearing that coming from Him made me feel like I am doing fine. 

Then the liturgist stood up to read more passages.  Before she did her duty, however, she stopped to let the congregation know that her son was coming home from his last tour of duty.  She explained that her son has been in the military 18 years and has made a career out of it.  I don't remember exactly how many tours she said he has already done, but she said with confidence that this was his last.  She was pleased to share that after all these years he is returning home safe.  All of this was said with extreme joy but covered with emotion.  Her voice shook as she spoke and she had to gather herself before moving on to her Sunday duties.

This was another "light bulb" moment for me.  I thought of how incredibly stressful it would be for my own son to be serving for his country in a war.  The fear every morning waking up wondering if he was going to be OK and the fear at night wondering if he will see tomorrow.  The shear feeling of having no certainty of seeing your loved one again.  Then my mind branched off to a possible wife or kids this soldier may have, aunts, uncles, cousins, siblings, etc.  Having a family member serving must make so many proud of their loved one's sacrifices, but we cannot forget all the families go through here at home. I thought, "...and I've been feeling sorry for myself?! I wouldn't trade this pain and anguish for that.  I don't have it that bad."  I will be taken care of, and for the time being I am spending it with my family as we all should be.  I just felt her joy along with all she must have felt these last 18 years. 

I have a lot on my plate.  This camel's back is about broken.  Or so I thought last week and the weeks before as things just seemed to continue to pile on.  My husband and son are going through this with me everyday.  Although they do not feel the physical things I go through, they are on this journey in a different way.  At this point, I think it is so overwhelming, none of us can see the others' perspective so we do have short fuses and occasionally overreact to unrelated things.  But, I look at us as a unit, as a team, and we will get through this together.  This will make us stronger, and we will have a greater understanding of each other thereafter (I can only assume).

Chronic illness, in any form, is a devastating and difficult life to live.  This not only applies to the patient, but the families as well.  I cannot equate illness to serving in a war by any stretch of the imagination.  The only thought I can give is that the grass is NOT always greener on the other side.  YOU do not have it worse than.......there is always a worse possibility.  In tough times, that is the most difficult thing to see other than the light at the end of the tunnel.  Ultimately, everyone involved is affected.  But we cannot take away from what the actual patient goes through or (to stick to topic) what the soldier goes through while serving.

It changes us.  Trauma, stress, anxiety, and instability changes a person.  Time changes a person.  Change is the only thing in this world we can expect to happen.  The problem may lie in acceptance.  I have heard stories of soldiers coming back and their families talking about how much they have changed.  Even veterans are spoken about in that manner, "Well, before the war...."  The chronically ill are very similar in the regard of these extreme emotions being dragged out over long periods of time.  I hope with this information we can all start to look at each other with a little more acceptance, considering we have no idea what glasses the other person is looking through.

Ultimately, what I got out of all this is:
1) I have got to get the box I am sure my bible is in and get it out.
2) I want to find an accessible way for me to study the bible to gain a better understanding (it's the information junkie in me, craving anything).
3) I have to pick myself up, dust myself off, and push away the thoughts that I have such a hard life.
4) Remind myself how cushioned and comfy my life is with my husband and son and our little home.
5) Stop looking at negative emotions as negatives.  They are our path to positivity.

Anyone got a flashlight?

I am just going to let this be a venting session.  I have no agenda.  No particular topic in mind that needs to be discussed or addressed.  I just feel like I have completely lost myself in all that has gone on lately so I am doing a little soul searching or shall we call it "Lauren searching".  I remember being a funny, naive, innocent, ambitious, tenacious, giving, loving, honest, and positive person. That girl is stuck inside of me somewhere.

I recently had the privilege of speaking with someone who does energy work.  This is something similar to therapy, but also very different.  It is about centering the mind and body.  It's about balancing the energy in your body so that the positive energies can flow.  Granted, I am no expert so that is my very basic explanation.  Either way, the opportunity brought to my attention some things I hadn't realized about myself while also bringing to light or validating that which I did know about myself.  For some reason, however, by the end of the call I did not feel a sense of relief or calm, as many say they do.  But it did bring to my attention what things I may need to focus on to help balance me out.

You see, my health has been in turmoil for some time now.  Each time we (my family and I) feel like we gain some ground, it seems to knock something else off and the cycle starts again.  Right now, the most concerning issue is my digestion or lack thereof.  At this point, I am scheduled to see a specialist at Johns Hopkins in May.  I have been evaluated in Dallas for a gastric stimulator.  In the small town where I live, my primary care physician sold her practice to a nurse practitioner (not quite up to par for my situation), but has assured me that she is only semi-retired and will follow my case closely.  In the meantime, I am living on protein shakes, eggs, toast, and bananas.  I force down a semi-normal meal for lunch for the pure sake of feeling and tasting the food in my mouth.  I also allow myself one Zevia a day (an all natural diet soda).  All the while, I am still in pain on a daily basis, if not just plain nauseated.  I have to force my deprived body to exercise just to help move food along and to help maintain an appetite for the limited amount of food I do get to eat.

In my dreams I eat really unhealthy, hearty meals like cheeseburgers with fries and a chocolate milkshake.  I update my resume and apply for jobs as a psych nurse or a nutritionist.  I go for bike rides with my son in the New Mexico sun.  I make elaborate meals for my hard working husband.  I shampoo my carpets.  I give my dogs a bath.  I do all these things with so much joy.  Then, I wake up for a normal day, which should be joyful enough with the blessings I have.  Instead it is tainted with pain, fear, anxiety, and desire for respite.

I tell myself everyday, "Remember before you were this sick, as a child, you would hate getting up everyday for school.  You always felt tired and dreaded school.  Until you got up and got moving.  The days turned out fine.  This is the same thing.  It is just a new normal.  Be grateful for the joys and blessings." That's my intellect talking.  That's my logic and rational brain.  That same brain told me yesterday, as yesterday was the epitome of awful belly-wise, "What is this doing to your son?  He cannot come home from school and see you like this.  Not often.  He needs to know there is meaning and joy in the world.  If he sees his mother, a role-model, defeated and accepting defeat on the sofa with no makeup and a mess of hair, he will think this is the norm.  This will not be his norm.  He will lead a happy life with purpose and be grateful.  You have to instill that in him."  Unfortunately, the physical and emotional toll has run too high.

I can put on a good show.  I get around town independently for the most part.  I have responsibilities I take care of and follow through on.  I go to church.  I take a shower, do my make-up, style my hair, and brush my teeth.  I cannot wear fitted clothing because of the pressure it adds to my belly so my thin frame is usually in something casual, but I try to keep it nice and age appropriate.  But inside I am feeling like an out casted middle schooler who hasn't had a real meal or a good night's sleep in years.

The gastric stimulator is a possibility and seems to be my most viable option for better quality of life, but it is ultimately up to the doctors and insurance company.  When I read reports about other patients who got them, I was astonished by how close their stories were to my own. I was actually elated because many of them spoke of waking up from the procedure craving their favorite foods. It takes time for your system to be able to handle those foods, but within hours of the procedure relief is often felt.  Needless to say, this made me a little anxious to get the process started. 

I spoke with the doctor in Dallas today.  I saw him three weeks ago.  I called him last week because I had heard nothing, but he was still looking over things.  I called him today.  Surely a third week has given him time to look it over, consult, etc. When I saw him he said he generally turns people away for these stimulators, but that does not seem to be the case for me.  He kept all my medical records and said he needed some time to comb through them, to be thorough because my case is very complicated given the multiple comorbidities.  I appreciate and respect his time and attention to my delicate case.  Most doctors panic at the thought of my chart.

After relaying to the woman on the phone that I was curious about the status of my appointment because he still has my copies of my medical records and it has been three weeks with no news whatsoever.  She politely (she is very nice, as is the doctor) explained that "your case is a very complicated one..." that's where I started to tune out.  When she was done I simply said, "After three weeks I am still in the same position, if not worse than when I saw him, I would just like to know if this is even going to be a possibility for me or should I just bank on Johns Hopkins?"  She apologetically told me that he is still considering me a candidate and that's why he is still needing my information.  He just wants to be sure he doesn't rock the boat with everything that is going on inside my body.  She said she would let the doctor know I would like my records back (mostly because he has my allergy list and it is too long for me to remember, possibly leading to my increased pain) and that I was anxious.  I asked her to just let him know I am anxious to enjoy life with my seven year old.

And so I have no choice but to wait.  Intellectually, logically, rationally I know that this doctor is doing his absolute best to insure I get the best treatment.  I know that Johns Hopkins is an amazing facility and the specialist I am scheduled to see has some amazing credentials.  I know that I am on a path to respite.  I know that I am a fighter or I would not have made it this far.  I know that there is meaning and purpose to life.  I know that I am blessed to have my son, husband, a roof over our heads, clothes, and some little luxuries.  I know I am blessed to have my in-laws near to help at the drop of a hat.  I know that God has a plan and is carrying me through these trying times.  The truth is, I don't feel like myself anymore.

I feel lost.  I feel desperate.  I feel deprived.  I feel guilty for the burden it adds to my family.  I feel guilty I cannot be the mother, friend, wife, daughter, sister that I once was and strive to be.  I feel angry- if I hear one more time how "complicated" my case is, I swear I will slap someone (completely out of character).  I am also angry that things aren't moving along faster.  Did I wait too long to complain enough for someone to realize I was serious?  I feel saddened by the fact that this has consumed me.  I thought I was above that for some reason.  I thought I could conquer anything and nothing could hold me down.  This, this APS Type II, these multiple auto-immunities, this daily torture of lack of food or painful ingestion/digestion of food, this daily grind, this regimen, this has consumed me.

I talk to my husband.  I talk to my family members.  I occasionally talk to a friend.  You know, with every person there is something different you can share.  With some you feel comfortable laying it all out there.  With others it is more difficult to be open.  I can honestly say I have not told one person everything.  I have not been completely open with anyone.  I don't feel like I can.  It has gotten to this place of such despair that it is easier not to talk about it.  Yet, it is consuming me.  It is bringing me down and keeping me in this dark place.  I decided a long time ago I would always pick myself up.  I promised myself I would never allow myself to go so far in to the dark I could not find my way out.
Anyone got a flashlight?