Thursday, July 23, 2015

Pros and Cons

After a brief break I am back to share my stories, worries, concerns, joys, and all that falls in between. I believe there is joy in all we go through. It is simply the intricacy of any situation that gives us the window to the beauty. I have been through a few twists and turns since we last met.
For several months, back into late 2014, I have been having these strange, painful, sudden then lingering cramps. Cramps are the only way I can describe them for lack of a better term. In mid March one of these sudden pains came on and dropped me to my knees. A pain that became suddenly debilitating, even to the point that I could not take a breath or call for help. After staying frozen long enough for the pain to settle down a bit, I called my doctor. The only way I can describe it is imagine you have eaten a super sized meal from McDonald's then took off at a full on sprint. A side cramp to knock a giant out would hit you like a brick. Now multiply that and imagine it remaining constant, but with sudden jolts sporadically. I went back and forth for a week or two with my doctor until he heard enough. He told me to get down to the hospital for admittance. Thankfully my brother and sister-in-law dropped everything to help with our son. My husband's family was ironically on their way to visit. It became a tag team situation until most of his family left, leaving behind my mother-in-law with us as long as we needed her. That was a true blessing.
Once admitted I was put on a clear liquid diet. This would be a major downer for anyone. One of the worst downers for me. I have been well over anything lemon/lime or jiggly for years now. Being a diabetic made it more challenging, as my doctor had noted it in my diet (explanation to follow). The next morning they quickly did an EGD/ endoscopy. I was still ordered to stay on the clear liquid diet thereafter. I tend to vomit often after tests or severe pain and this scope proved no different. The rest of the day was not worth ingesting a thing. IVs are certainly a life saver.
Over the next few days I was run through a battery of tests. So when I woke on that second day I read my diet allowance through and through, time and time again. Italian ice. Ok, that sounds pretty safe. I love the frozen lemonade or cherry ice you can buy almost anywhere during summer months. I called down and ordered a cherry Italian ice. I was quickly swept away for a quick scan. Upon my arrival I saw this melted red substance, somewhat jelly-like, with a strange white cream (if that's what I want to call it) which was obviously not clear yet allowed on this diet. It was not something I thought I'd like no matter what diet I needed. I decided to call down for some ginger ale considering the vomiting was only tapering off. "You are not allowed ginger ale."
"But it shows it IS allowed on the clear liquids options..."
"Well, you are diabetic and have already hit your carb limit until lunch."
Carb limit?! What exactly is my limit? I had no idea. The person on the other end and I played our little game for another few minutes. Me explaining I am Type I and have an insulin pump as well as being on the clear liquids reiterating my limited options. Him explaining I did have the option of a broth, which is also something I despise, or wait 4 hours before ordering. At this point I ended the conversation defeated. Then a light bulb. I asked my husband to run to a gas station and buy me some darn ginger ale for goodness sake. The nurse happened to be in my room at the time and said she would sneak down to the cafeteria and grab something she thought I could stomach. Within minutes I had some lemon/lime soda (oh yuck) with a small cup of orange sherbet. I asked for a cup. I decided to put the sherbet in the cup and pour the soda over it. Instant party punch. My husband then comes in with a six pack of ginger ale with a surprised look on his face because there I was with the lemon/lime soda he saw. When I explained, he was delighted at my starving, innovative ways to find a happy place. I was in such excitement when I got bumped up to a full liquid diet the next day, especially since we now knew how to work around the ridiculous carb limit.
We knew how to work our way through a lot of this due to previous hospital stays with similar restrictions. I slowly worked my way up to smoothies. With a little more substance in me I was overjoyed by getting the chance to roam the hospital when I got restless....every few minutes in my case. The pain had lessened up enough, though I was doped up pretty well by this time. I certainly could tell when my re-up was necessary. Throughout it all my doctor came by once or twice a day to check my progress or decline as well as give any updates to my family and me. Much of the stay blends together as you may imagine.
Two or three days in he came in with some information that set the stage. The endoscopy showed irritation around the leads of my gastric stimulator. There is a clear print out of risks with this stimulator, as with any other medical need, where it lays out the possibility of migration of leads, perforation of the stomach, and rejection. At that point in time, all they could definitively say was there was irritation and inflammation. He needed to communicate with Medtronic, the manufacturer, and was going to try to touch base with a national expert he knew well. The manufacturer asked for my records while communication with the colleague was difficult. Days passed with little to no new information or plan of action. It was discussed that the leads and/or device needed to be replaced. My doctor was tossing the idea around about different casing around the leads and different materials to hold them in place hoping to prevent the irritation. By that time he had determined it was rejection of some sort.
Along the way he asked if I thought I would be able to handle food. My eyes lit up, but my belly second guessed me. I opted to try applesauce with little confidence. My lack of confidence turned out to be a true finding. Vomiting ensued so I moved at a snail's pace. At day six I tried some dry cereal that soon turned in to shards of glass going slowly through my digestive system only increasing the pain I was experiencing. I gladly went two steps back and crawled even slower to solid food. By day eight, although I love my shakes and smoothies, I was ready to try again. This time I ordered scrambled eggs, a staple usually, and some potatoes, not hash browns. I made it through a few good bites. I was pleased to show my doctor when he stopped by. He wanted to see a little more before he would discharge me. At this stage of the game he had come to a decision to get me stable, discharging me, and continuing to search for a solid answer with me as an out patient. A couple of days later, I was up to half a plate of eggs with potatoes and showing clear signs of holding down fluids. He finally discharged me. He wanted to turn up the device a bit in hopes it would allow me to eat just a bit more. He also wanted to check back in two weeks for a follow-up with possibly another bump up. There were plenty of loose ends to tie up, but some strengthening and recovering time at home would be very beneficial.
I have seen him several times since. We have been left with the same lack of knowledge from others as well as the manufacturer. In another patient a replacement of leads or the device would be a no brainer, but my situation is different. What if my body just rejects what they do? What if my body is not strong enough to withstand another really major operation? How dangerous is this all? Neither my doctor nor I had any clue what our next step should be. He wanted some firm answers or strong opinions from others before he jumped the gun. In the meantime, he wanted to compile as much information as possible to present to someone or to show him light through the open door.
Many of these tests and scans were frightening, none painful in lieu of the pain we are trying to mend.
The last scan I had was a Gilliam scan, named after the man who discovered it. This is a three day nuclear medical test. The patient is injected with radioactive tracers. A special camera takes pictures from several angles while the patient lies still, usually on their backs, for 30 minutes to an hour. For me, that is when pain is at its most high. Flat on my back. On the third day a radiologist reads them and if something is seen at that time they will decide if more is needed. That extra imaging is an additional hour long scan. Lo and behold, I needed the additional time. According to the hospital staff my doctor would have the results within two days. He then would contact me with said results. Not my doctor. He is absolutely phenomenal, but he takes his time combing through everything before he says or does a thing. Admirable in this rush-and-go society.
Yesterday was my most recent appointment since the Gilliam scan. I am always a nervous wreck before appointments, no matter the health need, especially with my gastroenterologist. Add in the hectic freeway driving and navigating through Dallas equals an adventure in Laurentown. I was discouraged from the get-go with the simple number on the scale. I remind myself of my efforts in those moments. The doctor came in shortly after. Our assumptions proved true. The scan showed significant inflammation and irritation around the leads. The solution to this problem, you might ask. Remove the device. He decided replacing the leads would not help because there is no other casing. If my body is rejecting the casing, it would be wasted effort. The only solution is to remove the device. He then said we could leave it in if I could bare it until the battery dies. He and I went through a maze of, what we thought was, logic. I asked if there was any immediate danger such as additional damage being caused. He said there was not. I asked if it is affecting my small or large intestines and again he said it isn't. I asked how long the battery is estimated to last considering I am coming up on my second birthday/anniversary. Based on my settings his original estimate was three or four years back when I got it so that encouraged me. He said normally they simply replace the battery when it dies, but what he could do is replace the entire device and see where that leaves us. All the worries of keeping it in were somewhat hashed out. Ultimately, the decision is my own.
I have gone through this same scenario in my head for some time now. I have often told relatives and friends that I don't know what's worse, this pain or the pain I experienced before I had the stimulator. Now, that is exactly what I face. Here are my thoughts with some reliable opinions of others. With the device still in I am feeling pain, constant with sporadic jolts. Without the device I was constantly distended only growing as the day went on. That caused pain that increased throughout the day leaving me with a heating pad on my abdomen every night. With the stimulator in I am able to enjoy some "normal" food without intense fear. Without, I never knew when I could handle anything. With the stimulator vomiting and others are at a minimum. Without the stimulator it was daily and sometimes multiple times a day. With or without the stimulator I can hardly wear anything but elastic clothing. Without the stimulator I would have more canvas for my insulin pump and continuous glucose sensor. I hardly weigh a thing, but who knows if or how much that number will drop if the stimulator is removed. I was also reminded of how much more isolated I was before I had the stimulator. I would sleep a lot usually ending my day around 6:00p purely out of lack of energy and strength. I was also candidly reminded how close I was to death before I had the stimulator. In writing this post that statement has come to the forefront of my mind because it is a reminder that I celebrate the implant date by calling it my birthday. It was a second chance at life that day. I was blessed to have the option.
As I tie up my post for now, I leave you with the question. What would you do faced with a decision so serious, but choosing the lesser of two evils? Do not get me wrong, everyone has their cross to bare. I am simply asking how you would come to a decision. Would it take an instant to make a final decision? Or would it take some intense thought and needle searching for answers?
I will not lie and say I am ready to make a choice. I can openly say this is weighing heavy on me. The difficult part is finding an objective view because the pain is indescribable no matter the choice. The uncertainty and isolation are the same no matter the choice. I have love, support, a son who is a tornado of joy, a hard working husband, a nice place to call home, and more. I get out and interact, just not as much as my counterparts. I go on long walks. I read good books. I have so much and yet somehow the hardest decision clouds all of the amazing gifts.
Today I choose to hang in there. I choose to manage my symptoms as they stand. My doctor said my physical activity and life should not be an issue. He said to do what I can handle. So I choose to listen closely to the pain and work around it. Tomorrow, next week, next month I may change my mind. I may decide I can't take it anymore. I am at peace knowing what it is, but I am war between emotions and clear thoughts. And you yourself are probably reading this with a major decision in your life. Maybe we should just stick to the moment to see where it takes us.
As I said to my doc as I was leaving his office, "trust your gut" no pun intended....but it sure is funny if it was intentional.

Wednesday, February 25, 2015

The Gap

I recently was hit by a crash course on the infamous 'donut hole' we all hear about in relation to Medicare. Being in the situation I am in, candidly I am disabled and only have Medicare, I am susceptible to this unfortunate guideline. For years living in New Mexico I was covered under Extra Help. I never knew exactly what that was, but I had little to no costs for my prescription drugs. Moving to Texas in 2013 obviously changed many things.
When we first moved to Texas things seemed to be running smoothly. I updated my contact information and lost no time receiving my benefits. I needed to enroll in a new Part D Prescription plan because they vary state to state. That was a bit confusing but with a lot of questions and tenacity I figured it out. Because we had moved here just before my major surgery and my husband stayed home to care for me, I qualified for Medicaid in Texas. Why not take advantage of all the help you can get if you are doing your best to help yourself? I did not understand that it was a short-term qualification due to the fact I had no idea how they determine eligibility.
Every year Medicaid reviews all cases to determine requalification. They send out a notice with your information on it, ask if anything has changed, require a signature, and give you an easy prepaid envelope to send it all back. Neat and tidy. Well, not so neat. Thinking nothing had changed because my husband has worked the same job for seven years and I have received the same check for the last several years, I was shocked when I received a notice of loss of coverage beginning August 1, 2014. After running in circles trying to figure this determination out I was finally told that I had only qualified due to my husband's need to stay home while I recovered. Although the surgery was a year ago I had been covered all that time. I had no idea they allowed a year for this type of coverage. I appealed the decision due to extremely high prices for my prescription drugs, but I was denied. Since then I have hit dead ends time and time again.
I was told many times, in my efforts to regain the coverage Medicaid was providing, that I should apply for Extra Help. I continued to believe I would continue to have it because I had no idea I had it in the years prior. Finally I came to understand that Extra Help is actually a low-income subsidy that helps pay for prescription drugs. Now, our family is no where near poverty. We are simply in the same cast most of the nation is in at the moment so, again, I had no idea what or why I had these benefits. I assumed, biggest mistake we all make, that this was how Medicare worked. I never saw a 'donut hole' in my coverage so I assumed, bad girl, it had something to do with costs I don't run across. I became disabled at 25 and became eligible for Medicare at 26 years old. We are all just beginning to understand employer insurance dealings, let alone Medicare. I should have done my research.
Losing Medicaid and Extra Help seemed like no big deal to me. I had put my nose to the ground to find a Medicare Advantage plan that would cover more than traditional Medicare. I found one under United Health Care and it's great. It covers everything I need at locked in out-of-pocket costs. It comes with one downfall I did not know about Medicare Advantage plans. They all follow Medicare guidelines. In comes that dreaded 'donut hole' possibility. Again, I didn't realize it was approaching because I had lost Medicaid in August so I assumed, here's that word again, that meant Extra Help was gone as well. "Extra Help" sounded very much like Medicaid, interchangeable. Is Medicaid not extra help that you could receive? It was/is to me. No, no, no. Extra Help is actually a program. My Extra Help ended December 31, 2014. I received a notice, yes, but Medicaid, Medicare, supercalifragilisticexpialidotious. ??? These notices were foreign to me. Even employer and private insurance is a mess of jargon and loop holes no one understands. Now we are in the early months of 2015.
My husband works at the pharmacy where I get my prescriptions. He is nice enough to take control and make sure I get refills and such on time. He refilled everything he could at the end of December just in case a deductible, we didn't see coming, hits. I had one in the past so preparation was smart. I'm glad he did. With that in mind you can imagine it took me a bit to need a refill. "Insulin. That'll be $200+. Seizure medication. That'll be $260. Colitis. $95. Digestive enzymes. $45." Cough, cough, cough.."uh, WHAT?!" Something must be wrong. The pharmacy called my insurance while I simultaneously called for myself. This is when the nightmare began.
Here's how it works. There is a deductible to be met, $160. Then you begin paying for your drugs under the Tier system, a prescription vocabulary word meaning what category a drug is placed in. If you ask how they categorize drugs you will immediately realize no one really knows the answer. Tier 4 drugs are $95, Tier 3 drugs are $45, Tier 1 and/or 2 are around $8, and anything not in formulary....well, I haven't been able to decipher how they determine pricing, but obviously I have some. You have a limit of $2960 before you hit the gap or 'donut hole', this number is a combination of what the plan pays as well as your own out-of-pocket costs. Once you hit the $2960 you fall under 'gap coverage'. In gap coverage you pay 65% for generic drugs and 45% for brand name. If you look at that in terms of an actual prescription it does not look promising. One, just one, of my seizure medications is over $1000 for the generic meaning I am going to pay over $650 for one prescription. I have ten, four of which do not have generics available as of yet. What happens next you ask? Catastrophic coverage. Catastrophic coverage begins when your out-of-pocket costs, not the plans pay out as well, hit $4700. In this stage, you end up paying only 5% for your drugs. With a person like me you would think that would be hit quickly, but they get you when they start by counting their pay out as well as yours then do a switch when it comes down to counting only your costs. $4700. Do you have that under your couch cushions? Could you even follow the maze of numbers outlined? After a month and a half the pharmacy and I finally saw the potential for financial destruction. It would be difficult for any person or family to afford that every year when they have maintenance drugs long term. Even quick prescriptions could put a dent in your pocket. It is unbelievable that they help you get in the donut hole and retroactively eliminate their help to keep you in the hole. Capitalism and health care do not belong in the same sentence, let alone used against ignorant people.
Ignorant may seem like a derogatory term, but it is not. It definitely does not mean we, as patients, are stupid. It simply means we are uneducated insurance navigators. A lesson I learned the hard way. Be informed. Be prepared.
Every year we receive this giant package with a huge book and some pamphlets that drop out here and there, all regarding our benefits and any changes. Most of us keep it but it is never opened. Some toss it. Rarely does anyone actually dive into it. Hear me loud and clear when I say OPEN IT. Educate yourself. Use what you know about yourself for certain to begin. For myself I looked at hospital costs, ER co-pays, office visit co-pays, procedure out-of-pocket costs, and I simply checked to see if my drugs were on the plans formulary. I only looked at what I'd be paying, at the moment, for my drugs. I never looked beyond December 31 or thought to look at deductibles and stair steps. I knew I had lost low income subsidies and I spoke with the insurance agent about it. I am sure he tried to cover all his bases before I decided on a plan, but I was probably selectively hearing what I thought was important. Assumptions and arrogance will never do you good.
I thought I knew it all. I had been to school and worked in the health care field, my husband works in a pharmacy, and I am a very involved patient. I believed any "assumptions" I was making were "educated guesses". Two very different things. With those two words seeping out if my pores as I crumbled under the weight of cost versus need for meds I knew I had to figure this out but I didn't know how. I was embarrassed, humbled, and desperate.
I had options and I had to move fast. First, I called upon my parents for immediate assistance while I pulled myself together to get myself of the floor. My sister is a bulldog and will stop at nothing to make her little sister's life easier. An angel. She and I pulled our ideas together and bounced them back and forth to iron out details of each option. Here is what I faced and many Medicare patients have to face:
1) Divorce- If you are married the government takes the household income as a determining factor for low income subsidies. Couples who have been married decades sometimes get quiet divorces with all the legal necessities laid out in the divorce to cover what is appropriate for them. Children and family often are in the dark about the divorce, but it is the only way some people can afford medical care. This just wasn't an option I felt comfortable with for my family.
2) Talk with your doctor- Often times doctors can change a prescription to a lower cost drug to help the patient afford their meds. Many patients either talk to their doctor during a typical visit about what they can afford or what their plan will cover and the doctor obliges. It may also apply to office visits and procedures. Many times the doctor can schedule things in the most affordable ways for the patient. This does not work if there is no leeway for the doctor. In my case, there was no leeway for meds or office dealings.
3) Buy private health insurance- We hear about supplement plans and advantage plans for retired, elderly, Medicare patients. What many of us do not realize is these plans are not for disabled. In the state of Texas all insurance providers have to offer at least one Medigap plan for disabled under 65 or those with end stage renal disease. The catch is they have to approve you just as Medicaid or Medicare would, but each plan has different requirements for approval. In addition, plans that are associated with Medicare, meaning they are offered to patients or coupled with Medicare, have to follow Medicare guidelines for prescription drugs stair step set up. Medicare deducts a premium from your benefits check each month. Buying private insurance would also require a premium. Add in the out-of-pocket costs and it may not be very beneficial. In my case it was a moot option.
4) Stop taking prescription medications- I actually contemplated this because I was at a complete loss. We all see how blatantly wrong that actually is. Any where between 12-28% of Medicare patients stop taking their medications only because they cannot afford them. This is incredibly dangerous. Bottom line says you can't squeeze water out of a turnip and turnips sure don't pay for meds. That is my case. I had to look at it like this, not taking medications is deadly but financial ruin is not. Figure out a way to pay.
5) Get a loan- This sounds good in theory. If you take enough regular medications to get into the gap or even to get to catastrophic coverage you need extra money to pay for it. Loans are extra money that you have to pay back. If you can't afford it in the first place, how can you afford to pay back a loan? It may work for some. If that is what gets you there who cares what I say? I did the math for my situation and it would take two years for me to pay back a loan I would get to pay for one year of my medications. Tack on next year and the year after. Soon enough, I wouldn't even remember how much I owed or the bank would lock the doors every January when they saw me coming.
6) Online discounts- It is very possible to find discounts for medications online. Sometimes the manufacturer offers discounts. The drug reps even bring coupons to the doctors' offices and pharmacies. It is a bit tedious, but worth it. Common medications and new medications are the easiest to come by. Get into that cloudy area of lesser used meds and it can be tricky, sometimes hopeless. That was the way it turned out for me. It got to a point where the manufacturers customer service reps were making me feel like the biggest idiot on the planet. I got spoken to as if I should already know what discounts are offered. I even ran across a lot of them who had no idea the company they worked for made a drug of that name.
7) Employer insurance- If you are retired or disabled this option is often null and void. If you are married you may be in a good place to add coverage to your existing Medicare plan. Of course, as with any insurance, you have to wait for open enrollment which does not happen in January. If you are knowledgeable and prepared, jump on that open enrollment railway. If not, don't fret until you have exhausted all avenues. If a life event happens most employer insurance will allow the employee to add a dependent to their benefits. A life event includes marriage, divorce, death, loss of job, etc. It is determined by the Benefits Department or Human Resources. I, luckily, landed in this category. Due to the fact that I lost my low income subsidy, Extra Help, as of December 31, 2014 I was within the timeframe....sort of. We didn't apply for the addition until 45 days had passed. In our favor, for Medicare patients the time frame is widened a bit, but I also showed proof of attempts to appeal and/or manage the costs ourselves.
These were all the options given to me by Medicare, my insurance agent, my family, my research, you name it. It is hard to believe that these extreme options are all Medicare patients have to turn to. My words (I cannot call it wisdom) are to be fully educated on all your health care needs and options. We knew from day one that I could be added to my husband's insurance when I had to stop working. We got information on costs and laid out a pro's and con's list. Our immature minds thought it would take too much money out of his check so we couldn't afford it. Even when we came across this weapon of mass destruction called "The Gap", we got more information and laid it out. I was so certain there was a better option. I was so certain the government could not put people in need in such a difficult situation. I was certain other people in my situation had more options I just hadn't found yet. After trudging through the minefield of costs, information, and misinformation we came to the final decision to add me to his coverage. I can proudly say I have a PhD from the school of hard knocks in Medicare and its options.
I have always been an overachiever. School came easy to me and I thirst for knowledge. I have been entangled in the medical world since before I could even drive. Yet, I was so ignorant. I probably will come across more obstacles that humble me with my own ignorance on the matter. This, however, drives me to be even more active in the changes and guidelines outlined for any and all coverage I get. I learned to save receipts for tax deductions. I have a file folder for it all. I organize and juggle appointments. I am diligent about my medications. I research every aspect of the diagnoses I receive along the way. I am the poster child of Type A personality. I missed this. I missed some of the most important information I need. I actually didn't miss it, I disregarded it.
I don't enjoy complaining. I don't enjoy laying out financial struggles. I don't enjoy spilling my guts about disability and Medicare. I certainly don't enjoy Medicaid. The truth is, these topics have a negative stigma. A few people abuse the system and  it puts a bad taste in the mouths of those working so hard and still paying towards the system. But, if you flip that you see that many who paid into the system and did everything right often need to rely on that system. Someday we all do. Take the stigma away. Away from finances, needs, and charity. We all have them in some way, shape, or form. And charity is exactly that, charity. If we cannot open the conversation about some of the most common struggles for many Americans today, we continue to live in a lie. A lie that is turned in to a façade'. A façade' of a carefree, luxury filled life. Underneath that façade' is debt or secrets or holes. God put people on this earth in masses to come together as a community and help each other. We all have a place in this world, but we are all needed or the puzzle isn't complete. This includes knowledge. Get out there and make sure all your ducks are in a row. If you see someone struggling along the way and you have knowledge that may be useful, pass it on. These tangled webs of money making health care fields are impossible to get through without an armor of knowledge. As embarrassed and humbled as I am by all of this, I am proud to have found a solution. I can now move forward with more wisdom. I have many years to come and yearn for more wisdom no matter how hard it knocks me down.

Tuesday, December 30, 2014

The Slump

The dreaded slump. I have not written here or even on my personal journal for a few months now. I have had a difficult spell. I had no way to express it. I had no way to release it. I am still trying to regain my footing. I am constantly told I am brave for being candid with my writing. Although, I do not see this as bravery, I see it as helping others. None of us live in a perfect life. No one person is in total bliss every single day. I am here to allow people to open up, ask for help, seek knowledge, and to find pride in who you are, good and bad. I will tell my story behind this screen, all alone in comfort and find solace in the end. That's how brave I am, in hiding.

Many people suffer migraines. Some suffer what doctors call "chronic migraines". No matter which someone experiences, it is never good. Since I was a young child I had no real idea what a "migraine" was or how it felt. I had been told, probably because at the time it was age appropriate, that a migraine was like the worst headache you can imagine. I had had headaches and thought they were bad so I assumed people were being dramatic if they said they had migraines. I was taught in a very strong fashion that I was very wrong and uncompassionate.

For several years now, going back to when I was seen at the Mayo Clinic in 2008 and before, I had had some bad headaches. I would sometimes feel a stabbing pain in the left side of my head. I often saw black spots or bright flashes in my vision. My neck would get stiff. I would complain to doctors, but was always told they were tension headaches. Being ill and stressed was causing these headaches so I needed to relax. The other symptoms were brushed off. I told myself I was overreacting. That is, until August 2012.

I was getting ready to volunteer at my sons school as a requirement of all parents. Only an hour a week in the lunch room and my hours were covered throughout the year. The thought of this was frightening to me. I am not the most outgoing person in the world, nor do I handle new people and situations smoothly. Inside I am a mess. While washing dishes all of a sudden like lightening a bright painful white light hit me like a camera flash, then sudden sharp pains throughout my head. I blinked and blinked while squinting as you would for a camera flash, but it didn't help. That headache lasted over a week and I eventually ended up in the emergency room. I had suffered a migraine. My neurologist determined I had been suffering migraines for years. The seizures took the spotlight, but migraines are also treated with seizure medications sometimes so the migraines had been pushed under the rug. I have now gotten to know my triggers, the feeling of onset, and how to push through. Mine have become chronic, meaning I have them for days or weeks on end some occasions but always more than half the month I have a strong migraine. No one who suffers migraines is being dramatic. They are horrible.

Last May my son had his First Holy Communion. Family was coming in to town and there were activities non-stop for about five days. About two to three weeks before, a dull migraine had come and gone, but just as everyone showed up I was in the worst pain. The kind of pain that leaves you nauseous. That pain never subsided even after everyone had gone and things had calmed down. It was soon summer so obligations tapered off as well. Nothing touched the pain. By the first or second day of July, I was in an ER. Sometimes the oral medications do not work for me due to absorption. IV medications are always a last resort. My neurologist and I spent all summer and early fall practicing trial and error, still to no avail. At this point we are waiting on Botox injections.

She explained to me that the Botox is a diluted, slightly different version of the commonly known Botox for cosmetic use. Injections are given around the hairline, some near the crown of the head, and some in the back of the neck near the base of the skull. This is to relax the muscles in an attempt to break the migraine cycle. Migraines are similar to seizures in terms of the activity of the nerves throughout the brain. These nerves cause muscles around the head to contract but struggle to relax. The nerves are also hyperactive, trying to send messages properly. The Botox helps calm things down. Due to logistics I have yet to experience this treatment. With that being said, I have had a really hard time opening up because I feel so crappy.

I hate to be that person who is a complainer, "Oh woe is me" all the time. I feel like I am that person.  I tend to bury my head in the sand when things get tough. It is human nature to alert others of our suffering, but no one needs an update everyday if the complaints are the same. As an example with no disrespect, similar to a man with a cold. Sometimes I feel as if I have no light words to contribute to a conversation so I choose to hide the deep stuff. Hence my retreat.

In September I was set up with a new primary care doctor. She is wonderful. She decided to refer me to all the specialists I do not already see on a regular basis, gynecology and a urologist to follow my IC. Both of which I have avoided for obvious reasons. First came the gynecologist. While doing a routine exam she came across something that alarmed her. She sent me for labs and asked that I return the following day for an ultrasound. I was told that next day my labs showed possible polycystic ovarian syndrome. I have a friend I watched go through the diagnosis about a decade ago which seemed so difficult and scary. I was crushed. The ultrasound was done, but it seemed to take a little bit. As I was walking to check out, I could hear the doctor and ultrasound tech talking about me with concern in their voices. I returned the following day (are you exhausted yet) as requested again by the doctor. At that appointment I was told they found a mass. They found a tumor. A brick straight to the face, bam, and I froze. She explained the details and what would be coming in the following several weeks. At that time I was told a uterine biopsy was needed. In the office right then and there they took a tissue sample from my uterus. A little painful but tolerable. Then, wait for results.

I soon was seeing a gynecologist who was well versed in surgeries to remove cysts and masses possibly including the entire ovary. He was such a gentle soul who reminded me of a mix between Elmer Fudd and the Pillsbury Doughboy. The biopsy had come back fine so an ovarian biopsy was not needed at that time. He explained that this mass was a "complex mass" the size of a golf ball on my right ovary. It was a tumor. He decided to try some simple progesterone pills. This is a hormone that helps regulate menstrual cycles and many other womanly needs. The idea was to see if my own body would break up the "complex mass" on its own. I impatiently waited the five to six weeks to return for another ultrasound. If the mass had not budged or had grown it would need to be surgically removed and biopsied.

About six weeks after hearing about all of this for the first time, I was back in his office sweating it out. He greeted me as welcoming as the first time. With his squinty eyes and a contagious smile he said, "It's gone. Most of it has broken up so there is no need to follow it unless you experience problems." Like a balloon deflating I relaxed and my mind just floated. I did ask about the PCOS and he told me the mass was affecting my labs. I had no other symptoms so "No. Ya don't" with that same smile. I said my "thank you" and "so long" and hightailed right out of that office. Something huge had been lifted off me and I was ready to conquer the world soon as my energy returns and the migraines slow. Haha

And knew the and then was coming. In late October, early November my mouth felt like I had been punched. I brushed it off for days thinking I did something strange and it would work itself out like a crick in the neck. Well, days passed and there was no relief. I asked my husband, a man that steers away from dentists at all costs, to look inside my mouth. He said, "You need to call a dentist. Something doesn't look right." I put it off for several hours because I was sure it was nothing, but I eventually broke. They saw me within an hour and within 30 seconds the dentist said, "you're going to need surgery". My lower gums and lip had detached from my teeth. If I were to leave it alone I would lose those teeth. Now, I am the kind of person who flosses and brushes every day. I go to the dentist every six months for cleanings. Surgery?! What?!

I procrastinated but went to the surgeon's, periodontist's, office the next day. When I first sat down in his chair he said, "We need to do this today". I had to call my husband at work, he had to get our son out of school and meet me at the office. The periodontist performed a gum graft. He took tissue from the roof of my mouth and placed it across my bottom front four teeth and brought the lip in to reattach it. I lost count of shots, time, and stitches. I was told that my connective tissue inside my mouth finally gave. My body could no longer fight there. I lived on a soft foods diet more restricted than my gastroparesis diet. By Thanksgiving I called to ask if I could eat some more solid food. Thank goodness he said I could have what I could tolerate. I still had trouble talking, smiling, laughing, and puckering my lips but who cared at that point.

November was a month of rebuilding. My body had been through so much, it needed to calm down. I had a minimal amount of appointments and tests so I was able to decompress. With my mouth recovering I was forced to relax. Who'd imagine I need that? My son had the whole week off for Thanksgiving. It was really nice. We had slumber parties in the living room, watching movies and playing games until we crashed. Thanksgiving day was full of blessings. An impromptu dinner was made throughout the day for my family and me to enjoy. I had had so many migraines and belly aches that I had no intention of cooking. I cannot eat what everyone else can so it was a lot of work for just one child-sized meal. My boys would get a traditional Thanksgiving at my cousins' house in the evening so I had no obligation. The sun rose that Thursday and I decided to make the most out of the holiday. By 2pm I had a full meal of meatloaf (easily broken down meat for digestion), roasted rosemary and garlic potatoes, green beans, and corn bread. We bought a chocolate cream pie for my boys. It felt so comforting not exhausting. We later went to my cousins' where there was turkey and stuffing and pies and drinks and family. Just a beautiful day of happiness.

December rolled in with Christmas in tow. My endocrinologist has been pressuring me to get a continuous glucose monitor. I put it off because I had one for a year or two about eight years ago and I hated it. It beeps at all hours of the night and day. It was painful to insert and to have under my skin. The adhesive tape was brutal and I had to change it too often. So his suggestion fell on deaf ears. Over the summer, with the terrible, unbreakable migraine, my blood sugar was all over the place. Lows sometimes in the low 30s upper 20s (severely dangerous) and highs up in the mid 300s (only makes headaches worse) were starting to frustrate me. I had the experience of watching someone go through the early stages of the monitor I wanted and eventually decided it was worth a shot. I had been told within the past few months that my insurance wouldn't cover it. When I actually called the company, Dexcom, they took care of it and found out that my pharmacy benefits were going to cover it. I received my Dexcom early that next week. I am actually pretty ecstatic about it. I knew I needed better tracking of my blood sugars, but another apparatus just made me hate this situation more. Once I got over that mental hump, I was good to go. So, by the time I got it I was elated. That was only on December 16th so I am working on balancing what I've got on my body. That in itself, was the best Christmas gift I could imagine. Health is priceless.

With all these non-stop unexpected blows, my psyche is ravaged. I have been an emotional wreck for a time I cannot even count. Lonliness.  I only lived in New Mexico for the past 30 years. I have not worked in four years. I have not been to school in over six years. There is limited opportunities for me to make friends, especially at this age. I know only family in Texas so I have no fall backs. Many of my family members live further than I am comfortable driving, although it is all in the Dallas/Ft. Worth area. They have full lives with their own schedules and plans, as they have a right. I am not the type to invite myself to join anything. I am not the type to talk small talk with a stranger. Not feeling comfortable opening my life up to many leaves me in a tight situation. Guilt. I lay in pain on the couch with no energy while my son wants to ride his scooter or go to the mall. My husband gets off work to get home to a dog who needs a short walk, a son full of energy and conversation, and a wife lethargic on the sofa. I can't travel. I can't be very spontaneous. I can't eat at just any ol' restaurant. I feel as though I drag them and everyone around me down. No one will admit how annoying or frustrating it is, but it must be. Anger. Every time things seem to be stabilizing, a ball drops. I want to be better for my family so I will try harder tomorrow. Tomorrow finds a new ailment. Frustration. See above, need I say more. And the fight for happiness. Who wants to be miserable? I want to find peace so happiness can flow freely. Sadness. In the depths the what-ifs always show their ugly faces. If I had been allowed to finish college I would be doing the work that is done to me so often. If I could make my own money independently we would be so much better off and the pressure would lighten on my husband. If I was healthier I could do all the activities you see a mom do with her child in a TV movie. If, if, if. If I could travel I wouldn't feel so stifled. I wouldn't feel so lonely. Grief. In all those what-ifs there is a sense of grief. In my mind I am the person I set out to be and always was, in realty that girl is gone. The activities, the food, the freedom, the physical strength and stamina, the availability of continued higher education, etc. is all gone. It is a mourning as if someone has died. And someone did. But someone new emerged.

Someone new emerged. Amazing words. A new perspective. Now I am kinder, more knowledgeable, more compassionate, more giving, more practical, more open-minded, more determined than ever before, and a better mother because I know what I could be missing out on. I work just as hard seeking out knowledge as if I had been able to continue higher education, and my quest never ends. I hunger for information, any not just health. I love to learn and it is not necessary to be in a classroom to do so. I am finding new talents, for example, writing. I am learning a whole new level of patience, but believe that will be an ongoing process because perfection is constantly changing. Speaking of perfection, I am working on loosing up a bit. Being a perfectionist is impossible. There is no room for perfectionism within the life I lead. Why should I waste so much energy beating myself up? This new person that has emerged is equally new to me. Years pass and I am still working on acceptance. I am still getting to know me, Lauren, and finding myself in the chaos. I don't think my dust has settled, but I look back and think "how long are you gonna take to catch up". Haha

And yet, I read this and know deep in my heart that I am not the only one who feels this way. We all have different lives and different perspectives. We all have our own joys and pains. We all have our skeletons and demons. We all are a constant work in progress. As a child it is never a thought in your mind. For myself, I knew as a child that things would constantly be changing as I got older so I embraced the change. Some time in high school or college or later, we all unintentionally dig our heels into the ground and think we no longer have to change. We look back and want what we had and hold on to every last fiber as long as we can...sometimes too long. For myself, I feel it has been to long. I seek my inner child. I read this and realize, I am still being too hard on myself. I am being a hypocrite when I say perfection is unattainable and still think thoughts of how I NEED to be instead of letting go and letting these words sink in. This is part of the purpose of this blog.

It is an open journal to the masses. When I put it that way it frightens me to share so many issues, thoughts, and feelings. I sought out something similar to this when my knowledge and emotions were so low with my illnesses. I wanted validation for my devastation and fear. I decided to write this blog as I walk through life so if in some way, some how someone finds comfort in this then I am doing what I intend to do. Please know that you are never alone. Know that someone else shares whatever pain or joy you do, you just don't know it. Find peace in that somehow. I will work on doing the same.

Wednesday, September 10, 2014

Surfing The Wave

Welcome back to the dramatic life of Lauren the Great. I recently talked about my one year birthday with the Enterra gastric stimulator. This device is starting to spread throughout the nation, and I am so glad for that opportunity. So many people need this device, whether it be to gain weight or lose weight. Yes, they can actually adjust it to help with obesity. I have heard my hospital has implanted a good amount since my own. I recently spoke with my diabetic educator in New Mexico and she said they are implanting them there as well. That warms my heart more than you can imagine. I like to stroke my ego and say that I promoted it a lot which gained recognition for Medtronic, the manufacturer. Maybe soon it will be considered a treatment option as opposed to a humanitarian device. The rest of my post may seem to counteract much of what I have talked about previously, but no one really can understand the immense impact it has had on my life as well as my family's.

I realize it has been some time since I last posted and I definitely fell off my routine. Again, life happens as well as emotions. This summer has been difficult with my health and hotter than a Texas summer (pun intended). Late April or early May a migraine struck. I have suffered migraines for years, but they seem to be progressing. I used to think people were being dramatic when they said they had one. It seemed like every time some one had a headache they would refer to it as a migraine. I have seen true sufferers and some dramatizations. Either way, mine I now believe and have drastically progressed in the last two years. I eventually, after many attempts of at home treatments doctor recommended, gave in and went to the emergency room for IV medications, also doctor recommended. That helped ease it a bit but within days it roared its ugly head more so than the dull ache I still had after the IV. Since then some days are dull and some days are debilitating, more often the latter. The heat certainly doesn't help.

There are so many triggers for a migraine and everyone has a different experience or reaction. I, myself, had no idea what my triggers were due to my denial of migraines existing. This was a test-in-the making that hit like a brick wall. I tried hydrating. I tried rest in a dark room, which actually helps me at least rest a little more comfortably. I knew my eye glass prescription was old because I was always squinting so I went to an ophthalmologist.  I need him more than an optometrist because he can check for diabetes complications of the eye, more specifically retinopathy. Luckily, I am good in that department. My prescription did change just a bit, but he also recognized some rigidity in my lenses. See, your eyes have lenses that are flexible so you can look far away and then look down at your phone or a book and your lenses adjust as you change your perception. Mine doesn't move that quickly. As a 31 year old woman, I need bifocals or trifocals for the no line lenses. I prefer to use glasses as opposed to contacts because I take them off throughout the day pretty often. It is also less maintenance in my opinion. Back to triggers, I tried cutting out foods I felt affected me. Lotions, laundry detergent, air fresheners as well because the smells can be a trigger. I avoid the sun. I consciously try not to squint or move too quickly. I try to keep my neck and back in the least taxing positions or movements. It seems like they are all triggers, including stress.

My neurologist has been seeing me frequently throughout the summer to try to get ahold of this unbreakable trend. At first she thought that we possibly went down on a medication, in an attempt to slowly change to a new medication seizure-wise, too quickly which can upset your nerves. A slight adjustment here, a slight adjustment there. That did not break this chronic migraine. We attempted emergency type medications. We moved on to some injectable medications because we thought absorption had been a factor, could still be. None of which seemed to help. Actually, the injectable gave me a rare side effect of severe drops in my blood sugar. Leave it to my body to head to the rarity and the blood sugar factor in a diabetic is not good. At my last appointment we agreed on a new approach, Botox, but she also told me some news I had and have trouble dealing with emotionally and physically.

In New Mexico I had been given "life timelines" several times. I had also been told I have an autonomic nervous system disorder. I always beat my "timelines" and will continue to break barriers. It did hit me a little harder this time around. I think I had myself on cloud nine and was in denial a bit. I was so glad to be in a new place with more food and life options, and I believed the stimulator's help with food intake would help my whole body. I still believe it is because it is blatantly obvious in terms of energy and symptoms due to gastroparesis. Hearing a "timeline" now knocked me down. Granted, hers was much longer than any previous and vague. It is bugging me a bit still, but I know my determination and tenacity. She has been talking about neuropathy over the last year, but never referring to it as "diabetic neuropathy". She explained to my husband that my neuropathy would cause personality changes, memory loss, and more that I cannot remember, but I can't totally contribute it to what she said. At this last appointment focused on my migraines and seizures, I brought up the fact that I have noticed some symptoms I couldn't explain.

For years, really around the time I got diabetes, I have had numbness and tingling in my extremities. When I would mention it, doctors and nutritionist would brush it off, saying it was too early in the disease to have diabetic neuropathy. In addition, my blood sugar control was too tight to allow the damage. Lately my balance is off. I do yoga about three times a week and am suddenly unable to do moves I have always conquered. That is frustrating and a little alarming. I have also been noticing more memory loss and trouble comprehending things I never struggled with before. Additionally, at the ER I had trouble doing the neurological exercises they often use for neurology patients. Days before, in a discussion with my husband, I was trying to count to four on my fingers. For some reason my hand was not cooperating. He had to physically move my fingers to show four. I felt silly about it all, but she was very serious. She explained that the neuropathy I have is an autonomic nervous system disorder and it is called peripheral neuropathy. This is not diabetic neuropathy, although I am at risk for that as well. Let's compare them along with fibromyalgia as well as I can with my limited knowledge.

Peripheral neuropathy affects the entire nervous system. It can be connected to diabetes, but mine was triggered at the on-set of diabetes or before. We believe before because pain and fatigue have been an issue for me for over a decade. It can be caused by many different factors which make it hard to pin point. Some of them include autoimmune diseases (I was diagnosed with Hashimoto's thyroiditis when I was 13, then the snowball began), diabetes, medications, alcoholism, trauma, pressure on a nerve, tumors, infections, vitamin deficiencies, hypothyroid, and connective tissue diseases. Many of which I have or had come across throughout my life. Determining the cause is not as important as trying to manage it. The damaged nerves can cause numbness, weakness, and pain throughout the body. The nerves in the peripheral nervous system or central nervous system send messages from the brain and spinal cord to all other parts of your body and back again. It can affect sensory nerves that receive messages like pain, heat, or even touch. It can affect your autonomic nervous system controlling most of the smooth muscles such as those involved with breathing, heart rate, as well as digestion. It can also affect motor nerves controlling how your muscles move. This will cause a wide range of symptoms. Mine include pain, weakness, fatigue, digestion problems, blood pressure and heart rate (mine are super low), lack of coordination, intolerance to hot or cold temperatures, and sensitivity to touch. These symptoms wax and wane, but reading my posts throughout gives you a good idea of the constant symptoms. Mine happens to be polyneuropathy meaning it affects more than one nerve.

Diabetic neuropathy is usually caused by high blood sugars over time. These blood sugars damage the nerves. Most commonly, it affects hands and feet. This cause pain and/or numbness. It can move on to other parts of the body such as the digestive tract, causing gastroparesis, bowel problems, urinary tract problems, and even move onto the heart, sometimes fatal. It can be avoided by managing blood sugars tightly. Some diabetics never suffer nerve damage.

Fibromyalgia can also be set off by trauma or infections and can be genetic. Researchers believe repeated nerve stimulation causes changes of chemicals in the brain. The abnormal increases in these chemicals may signal pain. This can also cause the brain to make a memory of pain signals often causing the body to be more sensitive to pain. Again, symptoms are similar to peripheral neuropathy, yet there is no damage to the nerves, only sensitivity. Women are more commonly affected. It can be genetic or related to a rheumatic disease, such as lupus or rheumatoid arthritis. Complications are usually lack of sleep due to pain, frustration, depression and anxiety from a misunderstood condition, and trouble focusing or completing tasks. It is often referred to as "fibro fog". So, you can see the connection with all three conditions.

It is certain that mine is peripheral neuropathy. That terrifies me. There is nothing they can do about it. Some medications manage the pain, tingling, or burning. I certainly do not expect a magic pill to fix all. I would prefer to not take any medications at all! She did some routine exercises in her office as well. I realized many of the tests I previously completed with little or no difficulty, I suddenly had trouble completing. In fact, on a funny note...or funny to me, I will absolutely fail a field sobriety check if ever pulled over for suspicion of DUI (I do not drink and haven't had the experience). I tried and tried to walk a straight line, one foot in front of the other, and stumble time and time again until she just moved me on to something else. I walk with a different gait than most people. I am not pigeon toed and have never had an unusual gait before. Now, I walk with my feet in a "V" shape. That, she explained, is unknowingly trying to keep balance. The memory and comprehension are just bonuses. Again, she repeated there is nothing she can do but monitor it. It will only progress.

At this point it is important to stay alert to the symptoms. Because I am struggling with recognizing symptoms and they are only progressing she suggested a caretaker. There is no need for a live-in caretaker or even a 24 hour caretaker. I just need someone to check in with me and be available for the tough days or emergencies. I am often alone with my son so he has been taught who to call, how, and when. He will not be subjected to being my caretaker. He is a kid who needs to be a kid. I am sad he has to witness and live this volatile life with me. It has its bonuses, however.

He is wise beyond his years. He is compassionate, empathetic, and caring. He is sensitive, which can cause problems especially for a child who is eight years old. He actually comes home from school with his feelings hurt by something a peer said or did during the day. He can't understand how they can be so mean. He can't understand why they do so many things they do. It is just not in his realm of comprehension. It is amazing how he thinks about the world. He can teach us so much. He sees the world in such a magical way.

I saw my primary care physician just today. I lost weight, which makes me mad. I have been eating plenty. With the summer heat I have been enjoying vegan ice cream on a very regular basis as well as these giant soft, gluten free, vegan chocolate chip cookies. Both have always been a weakness my entire life and now I have found them in my diet allowances. Woohoo. I cannot believe I am still struggling with weight. An issue many people would love to have, but not to the point of being underweight. Believe it or not, under weight people feel similar self consciousness as over weight people. My primary is concerned about my heart rate and blood pressure. I am now instructed to monitor my blood pressure and heart rate much like I do my blood sugars. I have been having these rushes of faintness. I have not lost consciousness completely and I am glad for that advantage. This comes with cold sweats and anxiety or panic. I think my blood sugar is low because the symptoms are similar, but when I check it is fine. She believes this is a result of low blood pressure, and the symptoms come on so quickly because my blood pressure has dropped quickly. I have been worried it may trigger a seizure. Luckily that has not been the case. She said there is a few medications that can help raise blood pressure, but I would like to avoid additional medications. She still suggested what she called " a benign" medication meaning less side effects. We will see how this turns out. I pray no medication is needed and lifestyle changes can possibly help.

With all this I have been so overwhelmed. The fear of what my body is doing on the inside. So many what if's. I have relaxed a great deal just having a tangible reason for what is happening. The what if's are lessening knowing that there is no concrete path. Everyone is affected differently. A doctor is only as smart as the information they have learned. The body is so much more complicated. The body knows itself better than any doctor. As I mentioned earlier, I have broken barriers doctors said would not happen. I have a determination to move forward. I see no reason why I should be concerned about leaving this earth when I know all of us only get so many trips around the sun. Enjoy the sun while we have it, right? My mission drove me to pistachios, ice cream, and puffs which are similar to Cheetos puffs (my old fave). My stomach can only fit so much as anyone else's, so work with what we got. Food, sometimes, is a fix all. The management will continue and life goes on. Focus on life not the management of the unmentionables. I need to give the diseases a collective name like......Bertha, and only refer to them as that name. "Bertha is on fire today" or "Bertha has been out of sight for a while" or "eh, Bertha has crashed my party" or happily "I beat Bertha to the punch today". Yep, from now on. Make light of things. Laughter is the best medicine. That and distraction. Loving it.

I do want to stress that this blog is not only about me. I share the information I know and my experiences. This blog is to connect with people. It is for me to gain knowledge from others. It is to share our experiences and learn. It is a place to be vulnerable yet vindicated. It is therapeutic for me. I don't share a lot of information vocally, but can lay it all out here. I don't have a road map for life. This is where I help guide my thoughts and actions. It is meant to bring joy and be open to new perspectives. I certainly do not want or mean to be a downer and believe me when I say I am happy overall. I have a great support system. I laugh and enjoy my son, music, and sports (yay football season, basketball soon to come). Everyone gets down. Everyone gets worrisome news. Life is about surfing the wave.

Wednesday, July 30, 2014

My Belly's First Birthday

July 30, 2013 I was admitted to Texas Health Resources Presbyterian Hospital at 7:00am to prep for the surgery to implant an Enterra Gastric Stimulator. As many of my readers know, a gastric stimulator is a device that is placed in a subcutaneous tissue pocket, meaning just below the skin before you reach muscle tissue. There are leads attached to the device that are then lead through the abdominal wall to the stomach. There is an endoscope in your stomach, that is blown up like a balloon, that shines a bright light as well as allowing a second surgeon to see the inside of the stomach. The leads are placed in the stomach lining but cannot perforate the lining. That's where the bright light and scope from the endoscopy come into play. The light allows the surgeon placing the leads to see the stomach and lining more clearly, whereas the scope and light allow the second surgeon to insure the leads do not puncture the lining. Once the device and leads are in place they turn on the device. Much like a pace maker helps the heart beat, a gastric stimulator helps the stomach pump. The two main differences are that the stimulator does not make rhythmic motion in the stomach. The pace maker warrants the heart to stay as rhythmic as possible. Also, the stimulator is considered a humanitarian device while the pace maker is deemed a treatment approved by the FDA.

The FDA puts everything food and drug related in categories. We will not discuss the food aspect here. The FDA guidelines for a manufacturer to put in an application for their drug or device to be an actual treatment says it is required to contain the results of scientifically valid clinical investigations demonstrating that the device is effective for its intended purpose. It must also show that the benefits outweigh the risks. From the FDA:

An Humanitarian Use Device (HUD) is a device that is intended to benefit patients by treating or diagnosing a disease or condition that affects or is manifested in fewer than 4,000 individuals in the United States per year. A device manufacturer`s research and development costs could exceed its market returns for diseases or conditions affecting small patient populations. The HUD provision of the regulation provides an incentive for the development of devices for use in the treatment or diagnosis of diseases affecting these populations.

Which, in laymen's terms according to all specialists I have seen, means the humanitarian devices are to improve quality of life for rare, treatment resistant diseases. Due to lack of patients in need of the humanitarian device it is difficult to prove through clinical trials that it works for its intended purpose. Beyond that, with the gastric stimulator in particular, they do not know how it works only that it does. Those are words straight from the manufacturer, the FDA down to the doctors and surgeons. In my opinion, I don't care if you understand all the components. If it will allow me to eat, spend more time with family, and most importantly, be here for the most amazing son in the world (I am not biased).

I remember be terrified and elated on this day. My parents and mother-in-law were in town. I have a lot of extended family in DFW. I was surrounded with love. The hospital staff and surgeons were anxious as well. I am sure they were hiding their nerves because they had not done the procedure before and couldn't predict an outcome. I know they felt I was a great candidate and a good patient. I remember laying in the hospital bed with chaos all around. I had to be fasting for 48-72 hours because food stays in my belly so long. If I never see yellow Gatorade, lime Jell-O, or lemon-lime soda again I will die happy. Good luck on that one, Lauren. I was so anxious to be able to eat and possibly have solid food. The chaos never stopped throughout the day and night.

July 31, 2013 they wheeled me down to the in-patient surgery area bright and early at 7:00am. They, again, went through all the information with me. I was told what their expectations were, but reminded that not everything is known. Before 9:00am I was fast asleep. My family was waiting in the waiting area. I am sure they were wracked with nerves and emotions they cannot describe. The next thing I remember is waking up in incredible pain. A pain I cannot only compare to child birth, and it is a close race. Fire inside my belly. Not heartburn fire, roasting chestnuts fire. I instinctively cried out in pain, still not even realizing where I was and what I had just gone through. A nurse ran in, asked me how I felt, and immediately starting messing with all the wires, IVs and what have you. I don't remember anything again until opening my eyes and my husband was next to me holding my hand. He softly asked how I was and my reply will follow me for life. By then I had realized what was going on so I was happy, but in pain. I said, "Like I got hit by a truck.....a good truck". And the was my first laugh.

Recovery has taken this whole year and we are still working out some kinks. I feel things more frequently now because I am in better health so it is no longer this continuous painful, bloated, nauseated, etc. stomach. And with the options a little more open in terms a diet I have gained some strength so my frail body is easier to live with. The doctors here are managing my diseases as a whole with a much better approach than I have had in years past. I am a person. I am a patient. I am Lauren. I no longer feel like an object, a prize, a puzzle, a hypochondriac, or a lost cause. As I am writing this, I am hungry and it is 3:00pm in the afternoon. You have no idea how amazing that is...even to feel your stomach growl.

I have learned so much in the past several years. This year, of course, has enlightened me so much more. When things started getting bad I was almost done with college, had a toddler, and was working full time. My son was at daycare nearly 10 hours a day. I am a full steam ahead type person. I was discouraged to admit I need to slow down and be near a larger support group, but reluctantly moved back home. I still worked full time, did my classes through distance-learning, and had my son at a baby-sitter's. It was just a smaller town, very short commute, and I had family around to help me out when my husband was at work. Within three months I was at the Mayo Clinic and applying for disability. That in itself is an awakening and one of the most difficult things I have even gone through in my life. I struggled with accepting the rest I was prescribed along with the help I had. I wanted to work. I crave learning. I didn't know anything else...until my disability got approved 18 months later.

My idol mind had drawn me back to a part time job. I wasn't doing as well as I thought and struggled to make it through. I am a stubborn and active person so I wouldn't admit that to anyone. Suddenly, I had an opportunity to, guilt-free, stay home. I had succumbed to the idea of putting school on hold. I don't care how long it takes, I will finish those degrees even if I am 90 years old by then. So in the blink of an eye I was being paid to take care of my own child. He was almost four by then. I quickly realized all the minute things you miss when you are so busy. I got to know him in such a different way and my parenting views shifted. Call me old-fashioned, but I realize why gender roles have always been important. I have nothing against hard working women and working moms, but I am so thankful I get to be with my son without the distraction of work. As time went by I started to notice some other parts of the American culture I never saw objectively.

No wonder my body was a mess by the time I got to the Mayo Clinic. It's amazing that the entire country hasn't just collapsed at some point in life. There is so much competition for success. Success is seen as money, education, job status. Family values and dynamics have shifted so much. Obesity and disease is running ramped. People are stretching themselves too thin. I was for sure. Starting from the time we all come out of the womb the competition and over-scheduling starts. You have to have the best day-care, the best clothes, the best pre-school. Then, you get into sports or "extra curricular" activities, whatever that may be for a child not yet in school. School starts and the parents push the child to hit the ground running. If the parents aren't using all of these things as a baby-sitter for their child, they are deciding for their child what the child likes or wants to do. And the snow ball continues.

I was at a basketball game for my son this past Sunday and over heard a conversation between one mom and another child's dad. The dad seemed very neutral but the mom talking to him was so righteous. She was talking about what her son had been doing all summer and what "their" plans were for the school year. These children are eight-years-old or younger, mind you. I was exhausted by all she had signed her child up for just hearing it. "He is doing basketball. I put him in a swimming/tennis camp. He did soccer earlier in the summer..." the conversation continued behind me with me only catching bits and pieces because I was actually watching the game. I heard her once say, "He hasn't had time to read all summer so that will hurt him when school starts. I am going to sign him up for piano lessons as well. If you don't keep the kids busy, by the time they are in high school they only get into trouble...." At that point I quit listening. What happened to a child being a child?

I started thinking about it myself. I often think back to my life pre-disability and post and my different perspectives in each life. I would love to have finished school and be working in the field full on, but not more than I love raising my son without a middle man. School is so important. These children are young and still adapting to school. Why, then, add all these extra obligations for such a young person. Adults over schedule themselves. They deprive their bodies of healthy food and sleep often times, just to keep up with their hectic schedules. Then, they have kids and need to have the best child so they push and push and push. My thought is the little boy who is her son is going to put his foot down in middle or high school and hate one or all of the things she has him in now. He may resent her from not allowing him to make his own decisions. Children are little people, not an object you show off while you sculpt it into what you would have liked to been or what you think others will envy. Keep in mind, all of these statements are my personal opinion. I am generalizing. I know that not all kids want to have more free time and that not all parents makes these decisions selfishly. I just feel over-whelmed by the expectations so I imagine the kids are as well.

When I was a kid, life was much different. It was a different time. But we rode bikes, went swimming, played anything and everything outside. We used our imaginations and had limited options for TV and video games so they never took over. We asked our parents to sign us up for this sport or that or piano lessons or guitar. We were still pushed. We still rebelled against decisions our parents made for us as soon we had an independent mind to do it. It just didn't seem so competitive as I life can never slow down and down time needs to be earned.

I enjoy the life I live now. I enjoy being a stay-at-home mom. I can't imagine what I would have never seen had I continued to rush through life. Everyone is different and some of us may like the fast paced, over scheduled lifestyle. Some women these days choose a career over parenthood. I actually admire those women so much. To be thoughtful enough to know that you care about your career and a child just isn't practical. That is the most selfless act. Do not bring anything into your life that conflicts with the life you laid out for yourself. The single mom who has no choice but to use day-care, school, and sports in order to have the time to work for the family is also an amazing being to me. The parents who are able bodied and both working, but attend anything and everything to support their kids. The parents who allow school to be the child's priority and listens to their child when deciding on extra-curricular activities. I truly believe the most successful people were allowed to lay their own path, but with the guidance of a parent.

I feel as though I am getting a bit preachy. In short, I just wish the competitive nature we live in is a bit much. I feel like we do not allow ourselves to decompress. Everyone should have that time. Working, not working, sick, healthy, rich, poor should never live to work. Work to live and love those you care so deeply about. Take the downtime. Fight for downtime. No one should rush through life missing the beautiful scenery along the way. The more we love, the more love we receive. In any person's last day I seriously doubt they will say, "I wish I had taken that extra meeting in 2004..."
If you have never been close to losing something you have taken for granted all these years, I hope you take a step back. Take a moment to re-evaluate and decide what you could not live without. Those things should become first in life and the rest can trickle down.

I have gained weight. I can eat out. I can eat. My hair is growing. My nails grow. My skin is no longer transparent. My eyes are no longer sunken in. My clothes (as my cousin Mallory so nicely told me) no longer look like they are on a hanger when I am wearing them. The sun shines every day. I wake up everyday. My sister is my rock and here for me 'til the end of time. I live in a place that makes me feel less foreign, just a rarity. I am not judged (or I don't hear it anyway hehe) or pointed at or shoved off. I am Lauren. I made it to 31 years young. I have a new birthday for my new life. I am one and so thankful to say that. I thank all of you who love me. I thank all of my readers who support me or learn from my experiences. I thank God for the journey. I just have no words to really describe how I feel.

Live your life. Love your life. Never live up to anyone's expectations but your own. Take time to really embrace the most important things in your life.

Wednesday, July 2, 2014

Pushing The Limits

  Hello all. I know it has been some time, but I have had a few unusual months. I hope it can be a learning experience and eye opener for some.
  On Mother's Day my son received his First Holy Communion. Although, I myself am not Catholic, I understand the importance and honor so I am so proud of him. (We will no longer discuss religion).  Needless to say, the few weeks following up to that were very busy. I was worn down, for sure. It was also near the end of school when the kids are stir crazy. For a few months prior, I felt like I wasn't having as much movement in my stomach. The last time my stimulator had been adjusted was in November. I had a check-up in February, but the symptoms were somewhat brushed off. I knew it may be par for the course. For some reason, maybe the peak of stress, that weekend I instantly felt like I had before I had the stimulator.
  Friday night after dinner I was doubled over in pain. We had gone out to a restaurant I frequent, but it is not completely gluten-free so cross contamination is a possibility. I assumed I had been "glutened". The next day I opted for a smoothie at lunch. With family in town for the big occasion, the girls went for a manicure/pedicure afternoon. While drinking the smoothie during the pedicure, I already felt symptoms of pain and bloating (this kind of bloating is not and does not feel like common bloating). As the day went on it seemed to get worse, but I knew there was no contamination. We went to a restaurant that is a real treat for me that evening. It has very strict procedures to avoid cross contamination. I ordered fish and chips which is high fat, low nutrition, low fiber, bad carbohydrates....but we all deserve to stray. Immediately, I was in pain just walking out to the parking lot. Again, I thought I had been glutened. Or, I thought the sudden feeling of being overwhelmed by family, a lot of activity, and a big stray from my body's normal routine may be too much.
  With my routine being off, as many of us do, I was thoughtlessly neglecting some important factors of my life. I would accidently forget a batch of pills I am supposed to take at certain times of the day. That is SO important for seizure medications. And of course, different medications all metabolize differently, etc. You know the story. The increased activity and lack of rest wears on my body pretty badly. Add to all that, the manufacturer of a probiotic I have been taking for years now suddenly stopped making that probiotic. My local health food store tried to match it's quality with something else. They did supply me with a new probiotic, but unknowingly, it had dairy. A bad storm was at my door.
  After the exciting weekend passed I did my best to get back on track. I assumed all my symptoms were directly connected to my choices those past few days. I had chalked up the prior, more mild symptoms from the previous several weeks to my fantasy of this wonderful device. I was reminding myself it is just a humanitarian device, not treatment; do not expect perfection. As soon as I noticed the dairy in the new probiotic, I immediately stopped using it. The notation was in the tiny print on the bottom of the bottles because there are very few guidelines for supplements and their labels. I just doubled up on an over the counter probiotic I know works very well for me. I knew it would be a few weeks until I would know if it was working in my new system. I tried to get back to my usual diet, but I wasn't strong enough. My mother-in-law stayed with us for a while after Mother's Day weekend. She loves to go out to eat and she enjoys dessert very much. She is allergic to wheat so it works out ok for me. I fell to the guilty pleasures. I also was allowing myself to relax a little. See if my body can be pushed a tad with regard to my diet. It didn't seem to like it very much at all. There were other factors in this complex equation as well.
  We all have our limits, our pet peeves, our comforts, our space. As much as I love my mother-in-law, I had agreed to more than I can handle. She was supposed to stay for six weeks. Part way into the first week, my buttons were being pushed. I was trying intensely to smother my reactions because she deserves time with us, being further away now. Things got tense as the days passed. My husband works full time and my son was still in school so I was with her for several hours a day, just the two of us. That was difficult, especially when I am used to having down time for those few hours a day. In that stress, I again was missing medications and ignoring my routines completely. I continue to speak of routine because it is one of the best ways a diabetic can control blood sugar and my belly works on a routine as well (Lord, how I wouldn't love that to relax a bit). This is so dangerous. For anybody on medication, be strict with yourself. I was risking seizures, severe nerve pain throughout my body, and making my digestion practically impossible. So all this time I have a million excuses for why I felt so awful.
  I finally decided to be a little vulnerable and put myself first until it fell back in to my multi-tasking life. I asked my husband to take his mother home. I felt she had spent some good quality time with us, but it was now pushing boundaries. He agreed.  It ended up working out the best for her that way too, because her sister was ill and she wanted to get back to her. It worked out for us all.
  Unfortunately, I still didn't get a chance to stop to breath. It seemed as though it was one thing after another. I was falling back into my routines food and medication wise, but somehow stilled missed doses every now and then. I had to take accountability for that so my feeling of malaise was not a surprise to me. I was on the edge of an important reminder. There is a difference in taking accountability and blaming yourself. Some things are out of our control.
  It all came to a head one Sunday evening when life had finally felt on track for a few days. My husband grilled some fish for us and I made some oven-baked sweet potato fries. I had been trying to work fish into my diet because most meats are too difficult to digest while fish has the added benefit of incredible nutrients. When that meal was over, I knew something was really wrong. I, again, was doubled over in pain. My stomach was rock-hard and I looked as though I was half way through a pregnancy. I made my husband take a picture so I could so my gastroenterologist. The next morning only confirmed my fears. I was incredibly nauseous, as if I hadn't even been diagnosed with gastroparesis. My mouth was dry and I was so thirsty. No matter how much water I drank, my thirst couldn't be quenched. Everything tasted disgusting, bitter, almost metallic. I wanted nothing at all and all the water was making the nausea worse. By Wednesday I called my doctor.
  Once I described my symptoms I could hear in his voice he too, knew something was wrong. He was booked but tried to get me in as soon as he could. Not only was he concerned about my nausea and lack of appetite, but he was also worried about infections. When I got in to see him I was doing somewhat better with less thirst and dry mouth, but still feeling awful otherwise. He did a usual physical exam and then wanted to check my stimulator. He brought out the Enterragator (I love the sound of that, like a superhero). There is a little plastic disk I place on my skin where the device is located. That disk is attached to a machine that looks like a label maker. He instantly had a look of confusion on his face. Now, I don't completely understand the lingo for this device whatsoever so forgive me if this part is vague. Basically, he had discovered that the stimulator had actually reset itself back to the settings they had first put in during surgery. That was minimal voltage to allow my smooth muscles the chance to work up to movement, let alone digestion. That meant a lot of my symptoms were because I was back to little or no movement of my stomach. This was a mystery to us all. He did also send me for a lot of lab work.
  The next week I saw my endocrinologist. I was surprised to hear that through all the chaos, my A1C was 6.5. That is great because the closer diabetics are to 7 or lower, the less risk we have for complications. He also had no complaints about my blood sugar trends so he made no adjustments with my insulin. By downloading information from my pump and glucometer, he can see how my blood sugar levels are throughout the day usually looking at the last ninety days. With all the missteps I had made in that time, I had managed to do better than I had thought. Again, a blame I placed on myself. He checked the labs my gastroenterologist had run which included my A1C and my thyroid levels. Everything was normal which also meant there was no infection. My symptoms had some to do with me getting overwhelmed and letting that run me over while some had to do with the hiccup of my stimulator.
   I was hopeful that soon I would feel a lot better. When my doctor had initially turned up my stimulator it made me more nauseous. While I was able to eat without pain or distention, I had no appetite and felt like my stomach had butterflies that were moving too quickly. I knew that would pass as I got used to the increased movement. My appetite slowly began to come back. I relaxed about my blood sugars, being more confident in my abilities. Then, for a few days I felt better. A day of fun with my son sparked a new hurdle.
  My son and I share a passion for music and love for pushing our bodies physically. Are we weird? His cousin is a star gymnast at the ripe ol' age of eight so he likes to try out her tricks when she is not around. I happened to be in gymnastics when I was a child, but never made it very far. I am flexible and athletic though, so the few basic movements I remember coupled with my own childhood body contortions, I share with him. He had bought himself the new Michael Jackson CD (his idol) and we were having a blast listening to it while be acrobats in the living room. Once I was beat, it was time for dinner so I made my way to the kitchen. Suddenly, I felt faint to the point of feeling like I could pass out at any moment. I swigged some OJ quickly and grabbed my meter thinking the extra activity had run me low. My blood sugar was fine. Hhmm? As I went about making dinner it swept in and out, but I really felt weak. By the end of the evening I had a headache. I knew I had done too much.
  Over the next few days this rush of faintness continued to pester me. I continuously monitored my blood sugar never seeing a low in these times of weakness. The headache increased and never stopped from the moment it started. I do have chronic migraines associated with my seizures so my neurologist has me on prevention medication as well as an emergency medication I can take at the onset of a migraine. After a few days, I realized it was an intense migraine and those feelings of faintness that now included cold sweats, were the aura. I needed to call the neurologist. That's exactly what I did. She told me to go ahead and take the emergency medication. If within a couple of hours it doesn't help, she instructed me to go to the hospital for IV medication. That was the last thing I wanted to do. I took the medication and waited. I gave my body a little while longer than she said, justifying my decision with my malabsorption. I told myself it had made a dent in the pain. I believe I was delusional. My husband was at work at the time and the next day he had to work open to close so I did not want to inconvenience him. Again, I had forgotten to put myself first.
  Days passed with the pain still there and me deteriorating. I was weak, could not be in light, could barely handle sound, nauseous, and sleeping so much. I kept thinking I needed to give in and go to the hospital, but talking myself out of it each time. Hindsight is 20/20. I was really walking a tight rope. That Sunday my son had opening day for his basketball league this summer. I could not miss that so I did everything in my power to work up the strength for those two and a half hours. I made it that day. I did feel some improvement in pain and some increased strength so, again, I jumped the gun on thinking I passed the danger zone. It is Wednesday now and I still feel remnants of this everlasting migraine (I have had longer and worse before). My eyes and neck still hurt. I can handle very little noise. I am definitely irritable. So, when will this cycle stop?
  Yesterday a light bulb went off in my head. Remember how I stressed the importance of timing with seizure medication? Well, it is also important not to miss a dose as that increases the chance of breakthrough seizures and/or migraines. Ding, ding, ding. My body has been put through the ringer for months now. I was pushing its limits. I was stressed out. I allowed myself to succumb to the thoughtlessness that a healthy individual can escape to when a special occasion arises. I missed the small print of dairy. I pushed aside nagging symptoms. I missed medications. I messed with the routine my body is most efficient in. As a patient I fell off track and blamed myself for the uncontrollables that were also part of the equation.
  Let this be a lesson to us all. There is a reason for the labels on medications. Follow them along with your doctors' orders. Cut yourself some slack or the diseases take over you. We all know our bodies, healthy or not. I have said it before and will use it again, our bodies are smarter than any doctor out there so find a balance. I ignored so much and justified just as much. Now, and for a while, I pay the price. A song I love says, "if you're ever gonna find a silver lining, it's gotta be a cloudy day".

  Although, in the midst of my wallowing, I was unable to get my ten month anniversary/birthday post for my new life with the Enterra gastric stimulator. Today marks day 336 on my journey to the one year mark which marks full estimated recovery time and a clear view of the device's effectiveness. I do believe my bump in the road will affect that a little bit for a short time. But nonetheless, I am here. Eleven months. One year as a resident of Texas. A rug ripped out from under my family and I has brought us to this point. This point of laughing and a little freedom. This point of about 15 pounds gained since surgery. This point I kind of take for granted until those past symptoms creep back or slap you in the face. Who can deny, this is amazing? I cannot be more thankful for the opportunity I have been given. I will do my best to stay conscious about its worth in my life. With that in your hand, it is like a diamond you never thought you'd see.

Tuesday, May 6, 2014

Mountains Climbed

Nine Months has gone by since my new life began. I have proudly called it my second birthday many times and truly mean it. July 31, 2013 I got an Enterra gastric stimulator implanted. A device that has forever changed my life. I had been suffering a severe case of gastroparesis that was not responding to treatment. I went from a slim frame to a skeletal frame, losing more than 30 total pounds throughout the course of the disease. It was recommended for the umpteenth time that I go to Johns Hopkins University Medical Center. After a consultation in my hometown for a feeding tube determined my comorbidities would be exacerbated, even life threatening with forced nutrition, the surgeon had an 'out-of-the-box' idea I had never heard. Leaving that appointment with little information other than an "We'll be in touch after some research..." I was devastated. I had been weakening and weakening physically, but more so emotionally. A week later, a doctor had been chosen in Dallas, TX they were sure could help. But I also had to go to Johns Hopkins in a last ditch effort to save my life.

Within a month of the consultation with the feeding tube surgeon, we were on our way to Dallas to meet this amazing doctor. That very first appointment, he made a clear decision that my only hope was the gastric stimulator and I had plenty of history to show I was a great candidate. Not only do the physical ailments have to be there for medical devices such as these, but mental state plays a big roll. They do not want to implant a device or even attach any device to a patient who is not going to follow what is necessary for the device to work. For example, an insulin pump patient (which I also have due to Type I Diabetes) goes through the same mental test, insuring the patient has the right mindset to have a device attached to them 24 hours a day. You'd be amazed at what these things effect in daily life. He needed to be sure I understood everything. The device is implanted in a subcutaneous pouch in the abdomen (made by the surgeon) and leads attached to the device are guided through the abdominal muscles into the lining of the stomach. Recovery time and full effectiveness usually take about a year. You do see the device bulge out under the skin and you have to learn to adjust you movements accordingly. The battery lasts about five to ten years. At that time it is determined if a new one can/should be implanted. While explaining this he monitored my reaction and comprehension to determine if I was a candidate. Thank God it turned out positively for me. He then needed ammunition for the insurance to agree with his findings.

This time last year I was going through some brutal testing to prove to my insurance company why I was a candidate for such rare treatment. It actually isn't even considered treatment. The FDA classifies it as a humanitarian device, which simply means it improves quality of life but does not treat or correct a problem. That is why so much is needed for the insurance companies to even consider it. I was taken off my motility medications as well as my digestive enzymes and ulcer preventative medication. I take digestive enzymes because my body absolutely does not produce them. The ulcer preventative is due to Pernicious Anemia in which the inner lining of my stomach is eaten away by my immune system as well as having an alkaline environment as opposed to a normal pH level in the stomach or an acidic much like a GERD patient may have. The alkaline state is just as dangerous, if not more, than an acidic state in the stomach. I also have Celiac Disease in which the immune system is attacking the lining of the small intestine when gluten is in your system. That all being said, you can imagine I was incredibly uncomfortable. The process took about two weeks. I had endoscopies, gastric emptying studies, MRIs, CT scans, and I even swallowed a pill with a camera and other scanning properties that traveled throughout my digestive system giving a better look at what was going on inside. That in itself was the most difficult yet interesting one of them all. I was finally told the doctor had enough ammo and I was free to return home, but it was also necessary to be seen at Johns Hopkins to solidify it all and be sure every stone had been uncovered.

Once I returned home from Texas, I had six days to prepare for my trip to the scariest place I had ever gone. I had been seen at the Mayo Clinic in 2008 following through to the beginning of 2009 (not continuous). I was terrified then. Now to be sent to an equivalent or an even more progressive facility really puts mortality in front of your face. Luckily, I had my husband and my son along as well as an amazing aunt and cousin who flew out to Baltimore just to support me. That will never be forgotten- all the support. My sister even set up a donation account to help with travel and medical expenses. I was blown away by all the love. A quick trip into the doctor's office at Johns Hopkins lead to a few minor in-office tests all coming out as expected. This gave the doctor the ok to agree with the opinion of the previous two doctors I had seen regarding the need for the gastric stimulator; if for nothing else but the increased caloric allotment. The only stipulation, we had to move to the Dallas/ Fort Worth area to be closely monitored for life. I had never lived outside of New Mexico other than the two years of back and forth to California when my dad was alive. A move that was absolutely not planned had to be made within six weeks.

A feat I thought was impossible slowly began to play itself out. Years and years of pain and suffering with little to no answers in terms of relief- just diagnosis after diagnosis with treatments but relief was hardly part of the equation. My prayers for respite had been answered, loudly. But as those moments of change began, all I could think was the world was moving too quickly. Again, with the incredible support of my sister and extended family we found a place to live that fit all of our requirements. With the help of my parents we were packed and ready to go within those six weeks. My husband had to stay behind to continue working until logistics got worked out. Thankfully, he was only there three weeks before he could join us. He made his move two days before the beginning of this new life. All the while I was wasting away even quicker because life had gotten away from me. I couldn't believe it all fell into place so easily yet so inconceivably.

Entering the hospital, I was down to 80 such pounds. I did not ask the exact number. I had to fast as you normally do with most procedures involving anesthesia. I have had to fast so much in recent years, I will be glad to never see lemon-lime soda or Gatorade as well as lemon or lime Jello. The next day, all I remember was being excited to finally get the stimulator and then, waking up. I woke up in incredible pain as if a fire had been started in my abdomen and nothing was there to stop it. I am not talking heartburn type fire, I am talking roasting-chestnuts and accidently falling in the fire. A nurse immediately came to the rescue with pain relief pushed into my IV. My husband was allowed to see me shortly after that and I remember him asking how I felt. I said, "Like I have been hit by a truck....but a good truck!" He must have passed that along because that phrase has followed me since and I love it.

Those first few days were difficult. I was expecting or strongly hoping I would be able to eat right away. I actually could only handle smoothies but quickly moved on to tiny doses of pizza and French fries. What else would you chose after not being able to eat solid food for so long? I thought life was going to be better, but that I was going to be weakened and forever changed by the surgery. The timeline was given to me, a year towards recovery and full effectiveness. As the year passes, I have reached many milestones, but in the back of my mind every month I think "Look what this has done for you. This is the best it can be." I am proven wrong time and time again.

I recently have reached milestones I have dreamed about for years. You may get tired of blog post after post talking about the unthinkables I have reached, but that's the reality of my journey. And isn't that incredible? For the first time in two to three years I was able to put jeans on with little to no discomfort this past weekend. Previously the waistband and button that have no give would only cause pain to my constantly full and distended belly. Then, in the past nine months, I would try jeans on every now and then, but it would still cause pain, only now it was the device sight and the belly discomfort. I have saved my favorite pairs of jeans out of hope of one day wearing them. As I was doing laundry on Saturday they caught my eye while putting away my normal attire of yoga pants. I stopped in my tracks and decided to try them on. I put on a loose pair first and they felt alright so I moved on to my favorite pair. They felt fine. I squatted, I bent, I twisted, I sat...and no usual pain.
The pain at the site had now turned into just slight discomfort. That's normal with jeans considering none of us ever find the perfect fit. I danced around with my son for a little while and the jeans still felt alright. I made him take a picture out of sheer glee. I have not challenged myself to wearing them all day, but I will get there. I felt so accomplished, my mind has been reeling about what else I may be able to do. This morning a challenge was calling my name.

I usually rotate walking and yoga for exercise about five to six times a week. It's a great time for centering myself. My walks includes my little dog Chewy. He is a Dachshund/ Chihuahua mix, that's what I mean by little. This morning I took him for our usual walk at a walking trail at the college across the street. It's a one mile loop and we normally do two. Today, as I normally do, I saw a few joggers along the loop. I used to be a long distance runner so that itch is always there. I haven't been able to run for at least two and a half years or more. Today I thought "could I run a mile? I could try....but stop if it doesn't feel right. Stop." So, I had this little discussion in my head the whole time I was on my walk. Chewy couldn't run with me for certain so I walked him home. I told my husband what I was going to try and he was reluctantly excited. I went across that street, I got on that path, and I ran. I thought I would surely wimp out a few steps in, but my body just fell into natural motion. I didn't get out of breath. I didn't push myself. I just ran a mile. I felt ecstatic. I walked home feeling more powerful and accomplished than I had in years all the while knowing this incredible device is helping me climb mountains.

Not only have I been able to do these things; eat more solid food, go to restaurants, wear jeans, run again, even build strength with yoga not just maintain the little I had; but my heart and mind have grown exponentially too. Years and years of day in and day out malaise is so exhausting. Imagine waking up feeling like you have the flu everyday, but you still have the same responsibilities and expectations on you as any other person in the world. You put on your best face and muddle through the best you can. Every now and then a burst of energy comes and, a phenomenon described by doctors, you go into this manic state, trying to accomplish as much as you can while the energy is there. So, I may be glued to the bed one day and the next day a little feeling of increased energy has me rushing to the store, cleaning the bathroom, washing dishes, vacuuming, etc. until the energy fades. You crash and burn then pay for the overexertion for a few days thereafter. Now, I often still feel puny, achy, nauseated, flu-like but it has lightened up enough for me to notice. I sleep through the night sometimes feeling refreshed in the morning. All in all, the humanitarian device has done exactly what it is intended to do.

The thought I'd like to spread to the world is open your eyes to the world, don't focus on the daily grind. When I stop to write my blog or in my journal at night, I am often tired and in need of a release. As I go about my writings I start to uncover all the little jewels I missed throughout the day, the week, the month. This makes me turn to my son and see how far he has come. Not a day has gone by with him on this earth, that I have not seen a miracle up close and personal. But to know he has lived his entire life with a sick mother only speaks volumes to who he is today. At such a young age he has more compassion, wisdom, and intelligence than I see in the average adult. He challenges me intellectually on a daily basis. Sometimes I get so wrapped up in responsibilities I forget to slow down to embrace him fully. When I open my eyes, I see the glory of the world. I see how amazing he is. I see how beautiful the trees and the sky are. I feel all the improvements in my body. I see lights at the end of the tunnels when physical ailments overcome me. These mountains I have climbed will be in clear view for years to come.

I will actively continue and strive to keep my eyes wide open. The happiness I have felt these past few weeks is close to the elation I felt the day my son was born and the day I got married. How can the unimaginable continue to happen only to remind you how grand life can be?