Tuesday, August 27, 2013

Vitamin Deficiencies and Progress

I apologize for not writing as of late, I have been very very busy!!  I started school again last week, which is my last year!! Finally!!!  I also have been doing pro bono research work on public health law and climate change.  Not to mention the normal items like work and taking care of my son!  I am pretty loaded down right now.

So first I will update as to what has been happening.  I actually have been more sick than usual as of late.  My GI doctor pushed me down to a phase one/two diet, which he said I should follow until things seem to stabilize.  I don't think though that my pacer is the issue, I am pretty convinced it is the implant in my arm causing this, I have always been sensitive to hormones and that thing does mess with my hormone balance, but my PCP doesn't want me to remove it just yet, she really wants me to talk to my GI doctor at my next appointment in the beginning of October to see what he says.  I am really hoping that this is just a phase that I need to work through or I can just get this thing in my arm removed and everything will be better.  It is hard to determine what is causing me to get so sick (nausea, vomiting, etc) because I got the implant in my arm about a week or two before my pacer implant.  I am actually getting more ill and more often than I was before my pacer.  The only reason I am convinced that it is the implant in my arm and the hormones is because I missed my period this month (no I am not pregnant) and I have been ill since then.  It is almost like once my body gets knocked out of that rhythm everything goes out of whack.  My PCP did give me some dissolvable Zofran because every time I feel sick and take my pills I would immediately throw up, so she is hoping that this will at least help take the edge off and not make me vomit!!  The dissolvable pills have never worked that well for me, but something is better than nothing!!  We will see what happens, but for now down to a phase one/two diet, which is basically a liquid/soft foods diet, I will upload the paperwork my doctor sent to me about it in another post, just so people can get an idea of what I am talking about.

On another annoying note, my PCP tested my vitamin D level because I have been struggling with this deficiency for years now and of course I am deficient.  The positive to it is that I am not as deficient as I have been in the past (although that isn't saying much because it is summer), but she did add another 2000 mg to my vitamin D dose per day.  This should help with how tired I have been lately.  I really should go get my other vitamin levels tested because I know potassium and B12 are always concerns too for most of us GPers, plus I know I have no calcium in my body because dairy has been off my edible list for years now.  It is always a battle, but hopefully we can figure out the cause of why I am more sick now and either up my pacer or take out this implant.  Then maybe I won't have to take a million vitamin supplements anymore and can eat a normal diet!  Plus be able to work out at the level I was able to before, a vitamin D deficiency really wears away at the muscles and heart, so it is always harder for me to work out when I am low.

I am going to end on a positive note here though, I have gained back two pounds, but since I have been getting ill again I have been just holding steady, which at this point is an accomplishment for me considering I had been losing about a pound a week before the surgery.  I always like to recognize the small victories because I know that it will take a while for everything to normalize, if things work out as planned.  For now though I am seeing the short term positive effects that I needed, now to figure out the more complicated aspects so I can be around to embarrass my son for many years to come HAHAHA

#gastroparesis #enterratherapy

Monday, August 12, 2013

Updates and Never Being Good Enough

So the surgery incisions seem to be holding stable, which is a good thing because I really don't want to have another surgery!!  In terms of nausea progress, I have been a little off in the last week, which is a little upsetting, but I hope it is just a passing phase.  I haven't really added any weight, but I also haven't lost anymore, so I am happy that I am maintaining weight.  I don't have another appointment until September, so we will see how things go until then.  So far though I like the progress, it is not 100%, but it is better than it was.

On another note I was basically told I was not good enough or unloveable because I am ill.  It is really hard for me to take because that has been my whole life, I have never been good enough, nobody has felt that I was loveable.  It is like I had no chance, I was born with this, I never had a chance.  If someone can't love me now because I am sick, then nobody could have ever loved me.  I always knew this because I have never really felt like anyone really loved me, I almost died twice, I almost always go into surgery alone and people complain if they have to pick me up from a procedure that I cannot drive after.  Some days I almost wonder why I do keep fighting especially when I know that I will never be good enough for anyone.  Some days I just want to hide and escape from everything.  All the hurt and pain emotionally that I feel because of this pushing people away makes it hard to justify fighting.  I continue to fight, but my hope and faith is dwindling fast, I am just getting tired.

#gastroparesis #enterratherapy

Friday, August 2, 2013

So Thankful

So I wasn't sure which blog to post this on, so I will be copying it to both.  A year ago I went to the emergency room in Henderson, Nevada for what I thought was minor dehydration, it ended up being the scariest and clarifying night of my life.  The doctor told me that I might not make it through the night and that I may drop dead on the plane home the next day.  I was there alone.  Six months before that I was in and out of the hospital dying from malnutrition due to a dead gallbladder that went undiagnosed for three months.  The last time I went in they didn't think I had much longer because I couldn't even drink water and lost 30 lbs across the three months with about 10-20 mainly in the last month.  I felt like death, I felt how close I was and most of the time I was alone in that as well.  In the past year I have recovered to an extent, I do have permanent damage from the misdiagnosis and my heart problem will never be gone, but I am so grateful and thankful for the doctors and nurses who were there for me.  I am sitting here with my pacer now, hoping it will fix some of the residual issues, but it will never be a guarantee.  I can tell you though that I am so thankful that I wake up every single day and face the challenges that life puts in front of me.  It has never been easy and some days are really a struggle for me to keep fighting, but there is no way I am giving up.  With all the ups and downs I have in life I will always be grateful for every day that I am able to tell my son I love him, enjoy the weather, take a breath, even if I can't really eat much, be able to eat some delicious food, spend time with all the people I love around me.  Death and the threat of it puts what is important in life into perspective.  It isn't anything I would wish on anyone, my health life has been miserable, it is painful and you lose complete control, but I feel like it was the most humbling experience of my life.  Life is finite, if you don't love and live your life like any day will be your last, you will miss out on all the best things in life.  I choose not to be negative or miserable anymore, I choose to enjoy the life God gave me and live it to the fullest.  Take pleasure and joy in everyday because you never know when you all of a sudden lose an organ to death, your heart suddenly fails, I never ever expected these things in life, but they did happen and helped me immensely.  Love everyone as much as possible, find the good in life and not the bad, do things you were always afraid to do because that opportunity, that person or you could be gone in an instant.  Life is short and finite, not everyone lives to be 90, I am part bionic now and I wouldn't have it any other way because it helps me live to see another day, love another person and cherish every single moment.

#Gastroparesis #EnterraTherapy

Wednesday, July 31, 2013

Guilt

As a mother this is really hard to write and as an individual it is hard to write as well, but I don't think I can do everything.  I feel so much guilt for what I drag my son through with all of this.  As many of you know, I am a single mother of a three year old little boy who is my everything and the light of my life.  I promise him every single day that I will never abandon him and that I will always be there for him, but I don't even know if I can keep that promise.  I have been the only constant in my son's life, most people have come and gone or have been sporadically involved, I have been there with him every day his whole life, I have literally only spent a couple weeks total apart from him.  I write this here because I got very ill last night, we went out to see my friend who is also his Godmother, but on the way home I started feeling very ill.  My son is very talkative and asks tons of questions, I was panicking because I wasn't sure I was going to make it the 15 minutes back to our house.  In my panic I yelled at my son to be quiet and of course he started asking why and a bunch of questions, which stressed me out more, I tried to tell him I wasn't feeling well at all and needed quiet, but he is a 3 year old that only works for a couple minutes.  He kept talking and I was just short with him because it was taking all my energy to not get sick in the car.  We then pulled into our place, I absolutely could not make it and got sick in my car as we pulled in.  I then ripped him out of his seat and started to run inside so I could make it to the bathroom, he was running behind me bawling, just so upset and scared.  As soon as we got inside, he followed me into the bathroom, as I got more sick, bawling uncontrollably, I looked at him and said sorry so many times, but it doesn't make me feel any less guilty.  He finally calmed down and just held my hand and that is when I felt like I was letting him down.  I can't make him feel like he has to sacrifice his life and innocence to take care of me or slow down for me.  Some days I don't think I can even do it and it breaks my heart so much to feel like every time I get sick I can't take care of him, I can't play with him.  I feel so much guilt that I am letting him down, I can't be the mother I always promised him I would be.  The only thing that runs through my head is the look on his face, the fear, the sadness, I caused all of that, it was me.  I feel so guilty for letting this illness take away from him.  Last night around 3:00 am, he woke up and came into my room and snuggled up in bed with me, I looked at him and knowing how I made him feel that night was just heartbreaking.  All I wanted to do was wake him up and apologize and tell him how much I loved him, but he was just so peaceful.  This illness has been a blessing and a curse, it made me realize what is important in life and to cherish everyone and everything because you could be gone in an instant, but at the same time it takes away from the everyday and takes away my ability to be the mom and the person that I know I can be.  I love my son with all my heart, he is my everything and although this device will never cure me, it was my option to fight to be who I want to be and be able to show my son that I will always be there and hopefully someday there will never be a question in my head about that.

#Gastroparesis #EnterraTherapy

Monday, July 29, 2013

Complications

So earlier this weekend I noticed some blood and drainage in my bra, less than a teaspoon per day.  The confusing part is that I have not had bleeding or drainage since the week after surgery.  It was also coming from the incision under my breast, which thus far has been healing the best with the least amount of problems.  I also slipped into an arrhythmia this weekend, it has been the craziest one I have had yet.  It started out normal, but things changed on Sunday.  I didn't pay too much attention to the bleeding and drainage thinking that I could just see the surgeon this week.  When Sunday rolled around my arrhythmia was out of control, not only was I doing the normal slow, my heart rate and blood pressure would jump very very high.  I called the nurse line just to talk to them about it and whether I was not being sensitive enough to the issue.  The nurse was concerned and said you need to be seen within 8 hours and scolded me for sitting on it all weekend and letting it drain, let the heart issues get out of control and let it become painful.  I went in and they basically turned me away as soon as I walked in, they called the on call surgeon and said if you don't have a fever you can leave.  I wasn't horribly disappointed because this is half what I expected because of the type of surgery and historically the ER's treatment of my complicated condition.

Today though I called and went in to see my actual surgeon, which is always the better option anyways.  He talked to me about it and said that my left breast is much more swollen than the right one.  He did say that he wasn't concerned yet and sometimes people can be sensitive to the placement and to give it one more month.  He was concerned though about the drainage, he didn't feel too much liquid around my device, but said to keep a watch on it and if I developed a fever to come in immediately and he would see me.  I had started feeling yesterday some pressure pain from the inflammation and fluid build up, which sometimes would throw off sharp pains.  He said that if this continues after this next month that I will have to get my device taken out and placed in my abdomen instead.  I really am not a fan of this option because it will bother me to no end and I have talked to many people who have complained about placement in the abdomen.  I really like it behind my breast, I think will just have to take it easier and really nurse it until I feel 100% again.  Still hoping that things will work well, just a couple set backs thus far.

On a lighter note, my boyfriend talked about the huge difference he has seen since I got this device.  I always think there isn't much change,  but then he points out that I don't get sick as often after I eat anymore, it is just hard to believe I could be starting to feel better.  I am glad to have his perspective on the outside because I am quite biased living with this my whole life.  Still feeling hopeful, just need to get over this little hiccup!

#gastroparesis #enterratherapy

Monday, July 22, 2013

The Costs

I just received my EOB and bills for my surgery, it cost over $66,000, which doesn't include individual doctor costs, medications and ongoing care.  I realized that my bills are getting steep and it is so stressful to pay all of them even with a job because of my need to take care of my son and other bills.  I started a gofundme site to help raise funds.  I do not get much support in general, but thought maybe some generous strangers will help me with my expenses.  I absolutely appreciate any help that anyone can give to me.  My hope is that this surgery will be a cheaper more permanent solution to my problem as opposed to taking medication the rest of my life.  Below is the site I set up for donations, any help would be greatly appreciated to help fund my recovery!

http://www.gofundme.com/3j8tb4

#Gastroparesis #EnterraTherapy

Sunday, July 21, 2013

Working Out, Allergy Update and Weight

So I am a little over three weeks post surgery and I worked out for the first time today.  I will admit it wasn't easy, I went pretty slow on the elliptical, but I was happy to get back to the gym finally!  I am sort of addicted to working out, so it was hard going for three weeks without working out! I did have a little discomfort in my breast with all the movement, so it will probably be a while until I can run or do anything high impact.  On the weight end, i have been holding steady, I did lose five or so pounds post surgery, but in the last week I have been holing pretty steady, which is a good thing.  I have been struggling a little with symptoms, but I have been trying not to take my meds most days, which was at my own prerogative, my doctor only reduced my medications. I know, I know I need to slow down, everyone keeps telling me that, but I am so eager to feel somewhat normal again.  On another note, I got most of the glue off and it is starting to look better, it is less red and no open sores.  The incisions though look excellent minus the allergic reaction. The one on my stomach looks like it won't be horribly noticeable and the one under my breast is also healing well. Things are looking good on the healing front, just need to slow down on the Gastroparesis healing part, I mean I have had it my whole life, so it might take a while for me to feel 100% or at least close to 100%.

Three weeks post surgery, the red and peeling is my allergic reaction

#gastroparesis #enterratherapy

Wednesday, July 17, 2013

Post Surgery....finally!!

I know, I know I have been slacking here on updating my progress post surgery, first I was recovering and couldn't stay awake long enough to write, then I was working on this insane online class I am in, but things have finally calmed down and I have a couple minutes to write here!



I went in for surgery on June 28th and it went very well.  As you can see from the pictures on my previous post, they inserted the pacer behind my left breast and the leads in my stomach, hence the incision in my abdomen.  The surgeon was all excited and said you will be out tomorrow and running in a week before I went into surgery, honestly I thought he was nuts!!  I came to from surgery and they had me in recovery for a long time because they were having a hard time keeping my heart and blood pressure stable.  Finally they got me into a room in the afternoon to rest.  The first day was honestly just sleeping a lot and being up to speed on painkillers.  I will not lie, sitting up and getting out of bed was insanely painful mainly because of the incision on my stomach.  Actually, the incision under my breast didn't really hurt the first couple days, well except when they lifted my breast to look at it, but the one on my stomach really sucked.  Needless to say, I was not out of the hospital the next day, I ended up staying in four days.  Day one really wasn't too exciting, they had to help me in and out of bed and tried to get me walking a little that night, but I barely made it out of the room before I had to turn around and go back into my bed.  The second day was better, I was able to get up and walk more and I was able to start getting helping a little to get myself out of bed.  The one thing that kept getting worse was that I was super bloated, like 5 months pregnant bloated, I actually think that is what made the abdominal incision hurt more.  I started to be weaned back onto food, but to be honest I did not really have the appetite for it at that point because I was so bloated and uncomfortable and in pain.  The painkillers did their work well though, I got a ton of sleep while I was in the hospital!  By the third day I was starting to do more on my own, but they didn't want to let me go until I had something more than clear liquids to drink and I could take oral pain killers.  By day four I was on the full liquid diet and was able to take my pain pills by mouth, plus I could walk around the ward at least twice.  It is insane that the night before surgery I was out running and then I could barely walk afterwards!

I would say the worst part when I got home was the bloating, it took about a week or more until it really died down and I got things moving through.  The doctor kept telling me that things would get better the faster I got off the pain medication because it is contributing to the bloating and basically stopping my system altogether.  I slept a lot the first couple days and didn't leave the house because I was slow moving.  The doctor told me to walk 30 minutes per day, which I kind of had to work up to with the heat that has been around here and the incisions and pain killers slowing me down.  I honestly felt like an old grandma.  Also, after I left the hospital and the last day I was there man did my breast hurt ahhh it was crazy!  It felt like a super super sore muscle, which I assume is what it was a bruised muscle or healing while the device was setting in place, let me just say nothing really relieved the pain besides the pain killers, I got special bras and went without one, it didn't really matter, to be honest the only way I could sleep at night was if I was taking the pain killers.  I actually for the most part didn't need the pain killers every four hours like was prescribed on the bottle, I was basically down to one or two a day by two days out of the hospital (6 days post op).  I ended up developing some really bad anxiety from the Percocet, so I had to switch to Vicodin literally a day or two before I stopped taking them altogether.  I took my last pain killer the Sunday after surgery so 9 days post op, which I think was really good.  There was one other day later that week where my breast was sore, so I took it to go to bed at night, but otherwise I got off the pain killers fairly quickly.  I will say that with a caveat though, I am not a fan of painkillers, so I was still sore, but it was more so like I just worked out sore feeling under my breast.  For the abdominal incision I basically didn't have much pain there after I left the hospital unless I laughed, sneezed, coughed, etc.  I went into my surgeon about a week and a half post surgery and he thought my incisions looked great and I told him they were already starting to itch, which is a good post op sign that it was healing.  I went to my GI doctor the next day for my one week follow up and he was pleased with my progress, since surgery I had only thrown up once and had a couple bouts of nausea, so he upped my device a little bit, lowered my doses on some of my medications and took me off one, which I was really excited about because I had to take that one four times a day, it was a liquid and very annoying to lug around.  My GI doctor did tell me after surgery and after the adjustment that it would take a while to see results, so I have been trying to be patient with it.  He also said that I need to ease myself back into eating food, especially things I have not eaten in forever.  So far it has been pretty good.  I have only had one setback and it was that today I went into the surgeon because the incision on my stomach was peeling, but the skin under was raw and had sores.  The surgeon said that I was having an allergic reaction to the Dermabond used for sealing the wound (as opposed to stitches or staples), but to be safe, since an infection would be very dangerous with an implanted device, he prescribed me a week of antibiotics to ensure that no infection formed or the curb one that may be in the beginning stages from this reaction.

I did have a rough time with eating the first couple days, but more so from the bloating, surgery and pain killers basically stopping my system, so I will admit that I lost another 5-10 lbs post surgery, but I have not lost any since then, I haven't gained any, but my doctor said I was in a safe range and that he was happy to see that I wasn't losing any more weight and at least maintaining.  I am really hoping that I can continue down this recovery path, get over this allergic reaction/infection and start a new life, my GI doctor is very optimistic and very supportive, so it is making me feel more confident and optimistic about the ultimate success of this surgery.  I will add as a note, without the allergic reaction/infection I would be almost completely healed up, my incisions don't hurt at all anymore, my breast is not sore and I feel normal again at least from the surgery perspective and I am a little less than three weeks out.  I went back to work the Monday after surgery, so 10 days after and I will admit it wasn't easy, but mainly because of how tired I was and I am glad I did, getting back into the normal routine made the recovery minimized and honestly by the end of the second week I would say I was about 90% in terms of surgical recovery.  Feeling almost 100% now if it wasn't for that pesky reaction, but it should be gone within the week :-)

Feeling great about everything and so thankful that I made it to this point at least where I made it through the recovery, it was rough at some points, but in the long run was actually pretty quick and not horrible :-)

#Gastroparesis #EnterraTherapy

Wednesday, July 3, 2013

The Picture Post

I am almost feeling well enough to write my exhaustive post surgery blog post, I am hoping to get to it this weekend.  For now though,I took a couple pictures while in the hospital that I will share to tide you over :)
Here is my photo right before surgery all snugly in my bear paw :)
Picture right after I got to my room post surgery, you can tell I was drugged up
Photos of my bandages over my two incisions
After they took off my bandages, my stomach was fairly bloated.  One incision under my left breast for the pacer and one in the center of my stomach for my leads in my stomach.
Ending on a pretty note, the hand painted mural that covered the whole wall of my hospital room :)

I will update more this weekend :)

#gastroparesis #enterratherapy




Thursday, June 27, 2013

The Last Night

In a couple hours I will be waking up to go in for my surgery.  I am putting a lot of hope in this surgery that it will change my life, but I am prepared for the fact that it might not.  I am not going to spend time on this blog talking about the technicalities and what is going to happen.  I have gone through every scenario in my head from perfection to death.  I don't want to sound morbid, but everything from perfection to death is a reality.  I prefer to think that perfection is closer to the truth than death, but on the flip side I wanted to write this entry to express my thoughts and feelings on everything. I know, I am not a big feeler or emotionalist, but here it is, me giving you a little glimpse into that rarely seen side of me.

I just want to say first of all that I am so grateful for the people who have supported me since the beginning, the people who currently support me, the people who are complete strangers who support me, just everyone.  It means more than the world to me how much so many of you have been supporting me and praying for me.  I have never felt so much love and acceptance in my life.  I spent almost my whole life walking alone through this, working through the pain, the weight loss, the nausea, the vomiting, the loss of my gallbladder, etc etc etc.  I started writing about this journey to channel my own fear of both the surgery and being alone in all of this, but it became much more than that, I gained so many people that have supported me and shown me the love and care I have always believed that people were capable of, but lost sight of in recent years.  I wish I could show every single one of you the appreciation I feel because I don't feel so alone in this anymore.  I absolutely love each and every one of you, I could never ask for more from anyone than just to support me and make me feel that maybe I don't have to be alone.  I may go into that surgery room alone tomorrow and wake up alone, but I know I will feel all your love and prayers around me.  I am so grateful words cannot even express it.  Before I gush too much, I want to say that you may think this is overzealous and there is no need, but if there is one thing I have learned in life is that you cannot take a single moment for granted because it will be gone in a second, people can disappear in a second.  I know I let some of those moments get away from me, but I have experienced a couple too many of the you may not make it through the night moments that I am trying so hard to cherish every second with every single person every single day.  Again, I love you all so much, the support you have shown is immense and without comparison.  Thank you.

#EnterraTherapy #Gastroparesis

Tuesday, June 25, 2013

The Countdown

I feel like I should be thinking about surgery and the consequences, but I still just cannot focus on it.  It is now only a couple days away, but I am still just living life how I normally do.  It is hard for me to grasp how close this is and how much it will change my life.  Even if it doesn't work, I will still have this device inside of me.  The hospital called me to do my pre registration, so now I am all locked in for my appointment.  I also made sure that my pre approval information from my insurance company was in my file.  Nothing is worse than dealing with an insurance company after a surgery trying to fix the billing errors.  I have worked for an insurance company (ironically the one I currently have) and know how frustrating it can be even from the inside to get things done.  I just know right now I am not super nervous maybe because I have so much hope that this will change things for the better.  It is always great to find some hope in the years of darkness I have been in with this illness.  Having this illness my whole life has been quite a journey and I am hoping at least part of the journey is almost over.

#Gastroparesis #EnterraTherapy

Friday, June 21, 2013

The Pre-Op

I had my pre-op appointment yesterday, which you would think would make me feel the imminence of surgery, but to be honest the reality hasn't set in yet.  I actually had the same feeling when I had my son, even up to the minutes before my surgery I still didn't think it was going to really happen.  It might just because iris planned and I have already gone through all the emotional stages and have accepted it. To be honest when I had emergency surgery for my gallbladder I only had about an hours notice and that was ten times scarier at the time even though it was the least invasive surgery I have had.  It is funny how you mind works sometimes, how you feel things, how you accept things, it is totally unpredictable.  

The pre-op itself was totally predictable, although I am surprised they didn't do any blood work or tests.  They came in talked to me about my medical history, did the normal heart listen, reflexes, etc and I was done.  It was one of the most uneventful doctor appointments I have had in a while. The highlight of the appointment was the student who came in with the doctor.  They always ask before if it is ok if they one in, I typically say yes because I hate to admit it, but I am an interesting medical case.  The student walked in and was beaming and was excessively thanking me for allowing him to observe.  The appointment was unusually long, but it was nice to see the doctor teaching the student all about my multiple allergies, conditions, medications, etc. I think the doctor also enjoyed my intelligence on my own issues, so I could talk to him about some of my obscure/rare issues that he hadn't seen at all or very often in practice.  Overall, it was a uneventful and long appointment, but I am now medically cleared for surgery!! In one week from this very moment I will most likely be out of surgery and starting on my new (hopefully positive) journey with enterra therapy!! :-)

#enterratherapy #gastroparesis

Friday, June 14, 2013

Heart Issues v. GI Issues

Today my legs started to go numb again because my heart is in an arrhythmia (bradycardic), which makes my blood pressure to drop super low causing my extremities to go numb and cold.  It always makes me think which is worse, my heart issues or my GI issues.  My GI issues have been debilitating me for my whole life and I have some really bad days/weeks/months, but other times it is manageable.  On the flip side, my heart issues are a much more recent development and affect me up to a week or so before I self revert, but man are the symptoms atrocious.  When I have my GI problems I cannot eat, I feel sick to my stomach, I bile dump, etc etc, when I have my heart problems I am dizzy, I pass out, my extremities go numb, I get shortness of breath, which I have to use an inhaler for, etc etc.  When I look at them both at a high level they both seem bad, but I honestly feel like my heart problems impair my day to day life worse than my GI problems. I am not sure if it is because I am so used to the GI problems because let's face it 26 years of being sick, you just get used to it.  The heart problems I have had my whole life, but the medical difficulties I have had in the past couple of years has exacerbated it, making it much more prevalent.  In the end it is really just a roller coaster, either one is bad or the other and sometimes they are both horrible and i just cannot get out of bed in the morning.  I am really banking on the pacer working for both my heart and my GI tract, then I will have an awesome resolution for both.  It isn't necessarily a guarantee on either end, but if it works life will be amazing and maybe I will feel a slight bit of normal.  Not on 13 medications taking a different one every hour just so they all will work and not negate each other out, being able to go out to eat at new places, try new foods and do activities that always made me nervous because I thought I would get ill and ruin things. I am going on a camping trip this weekend with this guy I have been dating for a couple weeks now, I am nervous because this is an experience I have been avoiding for fear I would get too ill, but it will be nice to get me out of my comfort zone.  If I get through this weekend I think it will boost my confidence in doing new things after the pacer if I can do this before!  I have not been feeling very well lately, so hopefully this won't be a bust, but he is so supportive and understanding that we can take it slow if we need to :-)

On a lighter note, feeling pretty blessed right now to have met someone that is so understanding and supportive even though he doesn't know much about my condition. :-)

#EnterraTherapy #Gastroparesis

Monday, June 10, 2013

FYI this may be TMI for some people

So I went in to get my IUD today and it was basically a disaster.  I swear that  I cannot have a medical appointment within a normal time frame, the appointment lasted almost 3 hours and it was scheduled for 1/2 and hour!!  I first came in and they needed to do a blood test to make sure I wasn't pregnant, which I knew I wasn't but yeah protocol.  Then they were talking to me and the lady was super concerned that I might have a reaction because of my massive amounts of allergies, so they were concerned that I would possibly blister inside and cause tons of problems.  I said I didn't really have much choice than to risk it, so they go to put it in, but since I didn't have a normal birth or labor they were unable to get it in.  By this point it was already almost 2 hours, so they said well the other options are the shot and the arm implant.  I told them the shot was  out of the question because once they put it in they cannot remove it, so if I had a negative reaction there would be nothing they could do about it until the hormones wore off.  That left me with the arm implant, I felt a little conflicted about it, but in the end I got it, since that was my last option.  To be honest it was quick and did not hurt at all, so in that aspect it worked great, now to see if it continues to be a good implant and I don't have any reactions to the plastic or the hormones.  One step closer, not my favorite step, but at least it is now out of the way, hopefully I don't have any issues and will be ready for surgery in two weeks :-)
My implant on my upper arm!

#EnterraTherapy #Gastroparesis

Wednesday, June 5, 2013

There is hope!

So I am getting my IUD Monday, which isn't the best news ever, I hate putting more junk into my body, but I guess it is necessary esp since my hormones and everything has been off because of my body's inability to regulate and the need to avoid pregnancy in general.

The good news though is that I met a woman who is pregnant and has a pacer implanted, so it is possible to have more kids, just have to plan and be very careful.  She showed me that there is hope, I can be healthy and have more kids.  This really made me feel ten times better about all of this.  Kids are everything to me, I love my son, but would really love to have more kids.  I am just glad I found some hope in another individual suffering from the same issues who has had the same surgery.  I am sure I would have to be watched extremely closely, but it would be worth it, I love being a mom. :-)

Only a couple more weeks until surgery and I am getting anxious, but I think I am ready to face the challenge and being able to move forward with my life!

#enterratherapy #gastroparesis

Friday, May 31, 2013

They Arrived....plus other updates

I got my medical alert bracelets and they are super cute!!!

 This is my athletic bracelet for working out!
This is my everyday bracelet!

They are really nice and cute as well.  Just one more step down the path to surgery.  I am just so happy there is a company who makes cute bracelets, it makes it less obvious and not so hideous like the cheap ones you buy at the store.  The bracelets aren't cheap, but they are a lifetime investment, so I am pretty happy with what I ordered, I can even trade out the bracelet portion and keep the faceplate if I decide I want to buy a different one :-)

On another note, I set up my appointment to get an IUD.  I am not a huge fan of it, but I guess it is better than anything else.  I didn't realize it was such a process to get one though!  I have to get an consult then they have to align it with my cycle or something, I just wanted to get it the day of my preop, it is obvious that I haven't been on birth control in years lol it wasn't this involved the last time I was on it.  Well hopefully they can get it in before the surgery, otherwise I will probably have to wait for a bit after surgery until I feel up to it!

#gastroparesis #EnterraTherapy

Tuesday, May 21, 2013

The Gravity of this Illness

Sometimes I lose sight of how serious gastroparesis can be.  I have joined these groups where they share their stories and it grounds me and reminds me that I need to make sure I take care of myself so I can live a long life.  It is easy for me to lose sight of how serious this can be because I have had it since I was born basically, so it has always been my normal.  I always wonder if it is easy for my body to overcompensate for the symptoms because I am just wired for that to be my normal.  Many of the people whose stories I have been reading developed it suddenly, whereas I have been sick forever.  I have never had a feeding tube like many of them have, I have been close to getting one many times, but it has never happened because I would always pull through enough to avoid it, which I am thankful for.  The older I get the harder it is getting to avoid because my body never recovered from the issues I had with my gallbladder, that bout completely destroyed everything.  I have gastroparesis pretty bad, but I completely feel for the people in the groups because there is so little you can do for this illness and many people end up dying of starvation, which is the worst feeling ever, I got to that point when I went through my gallbladder issues, I was in such a haze, it was a miserable experience slowly dying of dehydration and starvation.  I am getting this pacer to avoid getting any form of a feeding tube and to try and avoid going to the ER all the time for fluids, but I know this may not be a cure and I might be fighting a losing battle.  It has always been in the back of my mind, I may not live forever, this may take my life much sooner than I want to go.  Some people hate when I say this, but I have accepted it, with the heart scare and the gallbladder I realigned my life, I feel like I became a better person, I learned to embrace life every day and never regret a moment, to love everyone around me as much as possible.  If I end up ceasing to exist on this Earth I will have no regrets.  My ultimate fear is that I will go before I get to see my son grow up because I promised him I would never abandon him, but life is funny that way, you have no control.  I always like being in control of my life and to be honest I realized only recently that I have no control over my fate, I could die tomorrow, I could die in 70 years, all I know is that I want to feel like I did something good, made someone smile, made somebodies day, before I go, so I am living every day and loving everyone every day as if I won't take another breath.  In that same breath I just love everyone who has been there for me, the ones who haven't and the ones who don't even know, you can't change people and you cannot change who you are, you can just choose to love everyone for who they are, because who you are is perfect :-)

#Gastroparesis #EnterraTherapy

Sunday, May 19, 2013

Medical Alert Bracelets Ordered!

The amazing support group I found gave me some great advice as to what I should put on my medical alert bracelets.  Who knew that the bracelets can be this cute?!?!?  I bought my bracelets through www.laurenshope.com they have such cute bracelets.  It isn't really going to feel like wearing one of those generic bracelets, it will be more like wearing a fun bracelet that just happens to have medical info on it :-)  I also ordered a workout bracelet that I can use while working out, which is super nice because it is basically like a little velcro fabric bracelet, perfect for working out :-)

It is also nice because if I decide I get sick of the one I have or if I want more variety I can buy tons of different bracelets because the ID plate is interchangeable!!  For now I bought just a cute neutral colored one, which I love and I think will look good with just about everything.

I am really hoping that the bracelets look as cute in person as they do online :-)  I put a link below to the two bracelets that I got, just in case anyone was wondering, but I will post pictures when I get them in a couple weeks :-)

Sport Medical ID:
http://www.laurenshope.com/product/834/V13/raspberry-adjustable-medical-alert-bracelet/size

Daily Medical ID:
http://www.laurenshope.com/product/1586/C215/eternal-brilliance-medical-id-bracelet

Thursday, May 16, 2013

Days Like This

This week has been tough for me medically.  It is days like this and weeks like this that just take everything out of me.  A lot of the time I can self regulate by going to liquid diets and letting things settle for a while and move through my stomach, but I am finding it harder and harder to get through these tough periods.  Every day that goes by I am actually looking forward to getting my device implanted at this point, just looking for some sort of change, I have still been losing weight, but it has slowed, I have only lost a couple pounds in the last month.  I am sure by the time my surgery rolls around I will lose another five pounds or so.  Being sick really sucks, I have always dealt with it I don't even know what it feels like to be 100% healthy for a whole day, it has been years and years since I have a totally normal day without being sick.  I wish I could even just remember a single day where I felt good and was able to function normally.

On a lighter note, I have basically been alone in all of this, but I recently found a support group and I have been getting so much support and so many answers to so many questions.  My doctors can only tell me so much, the other half I always needed was personal experiences, people who could relate on a personal level and I finally found it.  It is so nice hearing stories and being able to share my experiences with other people who can relate, it really puts my mind at ease to have people tell me how this device works and all their own struggles and complications with this illness :-)

#gastroparesis #enterratherapy

Tuesday, May 14, 2013

The Last Run

My glorious plans for this summer were to run as many fun 5ks as possible, unfortunately due to my doctors urgency to get Enterra as soon as possible I was only able to participate in one.  The bright side of this is that it was a ton of fun and hopefully when I get this device my life will normalize and I can do more of these and be able to do all kinds of things I always refused to do out of fear of getting ill.  I know I may be putting too much hope in this device, but I am hoping I can travel more, experience more cultures, more foods, go on overnight trips, go camping, all kinds of things I never did before or didn't do very often for fear I would get too sick and ruin the trip for everyone else.  I would say though that I am pretty proud of myself for trying to work through and get to running, I do get exhausted easily from it because I don't eat enough, but it is nice to be able to put my energy into something positive to get my mind off of the negative.  I did the rave run with my mom and my friend Shannon, it was at Valleyfair (amusement park in MN) in the middle of the night, so the whole place was decorated in lights and the people all had glowing decorations all over them.  Since this was my only run this year I went all out with black light body paint and glow sticks, rings, bracelets, etc.  I can tell you it was so much fun, I was worried because I have been having tons of problems lately and haven't been eating much beyond liquids, but I did finish even though I was pretty dizzy by the end.  I know this is the point where all the mommies inside of everyone come out and say stop over exerting yourself, you are stressing out your body, but to be honest this past year has put a lot of perspective in me.  I was barely clinging on at some points and I was either going to let this defeat me or live my life to the fullest.  I chose to be happy.  I live every day like I won't wake up tomorrow, I try not to regret anything.  Over the past 26 years there have been so many ups and downs in my life, including with my illness and I refuse to let any of that define me.  Enterra may not cure me of my issues, but it is hopefully a step in the direction of being able to be normal, so next year I can run a bunch of 5ks and not worry about it as much, i won't be dizzy at the end, I can go on adventures, I can live my life.  There are a lot of things that have changed my life and even though I should resent things or hate my life, I can't dwell on the bad, I just need to hold my head high and look forward to the future, to doing everything in my power to get up every day and smile.  Enterra is just a step to help that, my gastroparesis will never go away, it may kill me some day, who knows, I just know whenever that day comes I will say I never let it hold me down and I had no regrets in life. :-)

#EnterraTherapy #Gastroparesis

Wednesday, May 8, 2013

Medical Alert and Travel

I still have quite a few questions up in the air about this device.  I was never told where exactly the incision will be, so I called my surgeon and they never got back to me.  I know I don't have a choice, but I would like to anticipate where they will be putting the device in.  I assume it will be put in through the side, just like they insert breast implants, because from the bottom would seem not as secure in my mind, but again don't know, wish I did.  I also was reading a little on the internet and figured out that I will need a medical alert bracelet, problem is that I have no idea what to put on it!!!  I asked the company whose products I was looking at and they said to ask my doctor.  I am sure asking my doctor won't get me anywhere, but there isn't much out there about medical alert bracelets and devices, it is mainly about allergies and diabetics.  I guess I will just buy one when I get the surgery after I get my ID card, since that is supposedly what I will have to use to go to airports and what not, if they don't give me any guidance I will just use some language from the card or reference the card on the ID.  I am also kind of interested in how this travel piece is going to go, do I put it on my ticket, do I just tell TSA when I get to security.  I am planning on traveling a bit here in the next couple years and I just want to know how exactly to do it and how much longer it is going to take to get through security.  I am also concerned about going abroad and being able to explain that I cannot go through security in a normal sense, I guess it will just be a gamble, although I am not planning on going to any crazy obscure countries that wouldn't understand implantable devices anytime soon!  We will see, all these unanswered questions about my upcoming lifetime adventure!!  I am sure they will all get answered in time, but we will see.  Only a little over a month and a half before life is going to change, hopefully for the better!

#EnterraTherapy #Gastroparesis

Thursday, May 2, 2013

Minimalizing

I admit I am pretty bad at minimalizing my problems and acting like they aren't a big deal, but nothing makes me more upset and angry when people accuse me of copping out or not trying harder to fix my problems.  I didn't spend 26 years in pain almost every day because I wanted to end up here.  I have always been diligent and taken care of my problems in every method possible, I have used vitamins, pills, mental techniques, everything.  I just hate when people act like I am a bain on the planet because I am ill and try to blame me for it like I had a choice.  I was essentially born this way, I didn't choose this life and I don't treat my body poorly, I try to follow all the crazy diets prescribed to me even though they conflict most of the time.  I am trying and this is literally the last resort, I cannot tell you how much I have spent on healthcare across my lifetime and how many times I have gone to the doctors, how many tests I have endured, just soooo much.  I promise I am not in cop out mode, this is my last resort and it isn't my favorite choice, some days I actually think that maybe I can make it without surgery....then I get sick again and it reinforces everything.  It is hard and I have not taken this decision lightly.  I just wish people wouldn't make quick assumptions about my condition.

#EnterraTherapy #Gastroparesis

Sunday, April 28, 2013

Back from Vacation


While I was gone my GI doctor and my surgeon called to discuss the surgery and setting up the appointments.  I came home to all my documents in the mail.  To be honest I feel more at peace now that everything is set and in place.  There is no more worry about approval or waiting game on a date.  I set up my pre op appointment and all my follow up appointments.  I am still really nervous, but I think it really isn't going to hit me until I am going under or maybe when I wake up and realize there is something under my skin!  I am a little worried about how it is going to feel and if it is going to bother me.  I am not sure if I will be able to feel it at all, but I am pretty sensitive to changes in my body, so we will see.  I think I have most been worried about that portion, what life will be like afterwards.  I guess we will see what happens, just happy it is one less thing I have to worry about until the day comes.  For now I am going to focus on getting in good shape to make sure the recovery and surgery goes smoothly!

#EnterraTherapy #Gastroparesis

Tuesday, April 23, 2013

June 28th

The date has been set, June 28th.....I was hoping for July, but the doctor said it would be better if I got in as soon as possible.  I set up my pre-op and everything that goes with it, so nervous!!  It is all set in stone now, no turning back.  I know I can get through this, just nerve wracking thinking of how real it is, also that it is being pushed up a month.  I got the pre-op visit scheduled, now to just work on getting a perma baby fix, which is the part I am really dreading and not looking forward to doing, I guess I can't put it off now that I have the surgery scheduled.

#EnterraTherapy #Gastroparesis

Sunday, April 21, 2013

Liquid Diet

Things have been so crazy and stressful lately, which aggravates everything, so I have been reduced to a liquid diet.  This happens a lot more as the more time goes on, so I go on and off these diets as my body allows.  The past week or two I haven't been able to eat anything for the most part besides liquids and even those sometimes cause me problems.  It really sucks because I always feel good, but then I eat food and it just spirals within ten to twenty minutes after and I get extremely sick. The only awesome thing about a liquid diet is an excuse to drink a million smoothies, the downside ensure.....nasty, that stuff is so gross!!!!  Hopefully I can pull out of this before surgery, otherwise it is going to be a long long road to July going just on a liquid diet.  Here is to hoping I feel better in a week or two and can eat real food again.  I am sure this is going to make me lose a lot of weight though, sigh, thus is life, it is just hard because I have less and less to lose.

#EnterraTherapy #Gastroparesis

Thursday, April 18, 2013

26

Never thought I would say this, but 26 is the year that is going to change my life.  I honestly hate getting older in general, but this year is going to be different in many ways from any other year.  This is the last year I celebrate my birthday being sick, hopefully!  I'm not going to lie when I got the letter I was a little bit in shock, but I am ready to move forward with my life now.  I haven't gotten the call from my doctor to set up the appointment, but I assume it will come tomorrow or next week.  Reflecting back at things it is just crazy to think how much will change in the next year.  I wouldn't say life was a walk in the park in most aspects up to this point, but it will feel amazing to feel like one thing isn't flawed anymore.  Slowly working on improving the negatives in my life to positives :-)

#EnterraTherapy #Gastroparesis

Wednesday, April 17, 2013

It's Official

Here it is, the letter, the approval.....
I actually was a little thrown off when I got this today, I thought it would take forever.....I am sure my doctor will be calling me in the next couple days to finalize plans and schedule the surgery.  To be honest, I am still completely in shock at how fast that happened, my doctor must write persuasive letters.  It also hasn't felt so real until now, I thought it was going to get caught up in appeals and take forever, I had essentially put it out of my mind!  Now to prepare, so much to do, I don't even know where to start, I guess maybe just start at settling on a date for the surgery, still shooting for July at this point, but we will see.

#EnterraTherapy #Gastroparesis

Monday, April 15, 2013

The Depression Sets In

Everyone keeps praising me for being so strong in the face of getting Enterra Therapy, but honestly, I'm not perfect, I am depressed.  I honestly have woken up almost every day and it has been hard to keep a smile on my face.  I am absolutely shutting the door on basically the one true dream that I have.  I purport to the world that I am ok with it, but honestly, I'm not.  I think it is partially just the stress of school, work, raising a child in their terrible 2/3s and dealing with facing this, plus a whole host of other little things.  To be honest, it is all wearing on me, luckily I am almost done for the semester, but I also have three summer courses, then the surgery, then back at school again.  The upside is that I only have a year left, so I just keep telling myself that, do not quit now, you are so close!  The other downside I am really struggling with is that I am going to be alone in all of this, my family is my family, but nobody is ever there for me when I need them, if they read this I know they will argue with me and such, but I don't care.  When I got my gallbladder out, I went into surgery alone and woke up alone, I am about 99% positive that will happen this time as well.  It really is hard to know I can't (well highly highly highly advised against) have kids anymore, but then to also have that sinking reality that I am going to be alone in this.  I am going to sit in my bed for the week after surgery and nobody is going to help me, nobody will probably visit, just like when I had my gallbladder surgery.  Those are the weeks when I wish I could work because then I am around at least people and can feel somewhat normal.  I have always had the outlook on life that if I keep pushing through things will get better, but somehow this to me almost seems like putting the nail in the coffin on some of my dreams in life.  I always thought I could achieve that picture perfect even with all the flaws and scars in my life, but honestly that can't be a reality for me anymore, I can try to find a semblance of picture perfect, but it won't ever be how I imagined.

My friend posted a list on facebook called the 21 Tips to Keep your Shit Together when you are Depressed, it really has been helping me try to put a positive perspective on things again http://www.diycouturier.com/post/47249603128/21-tips-to-keep-your-shit-together-when-youre
It actually came at a time when I really needed it.  I have always been a positive person and I am just in one of those times when I am going through the process of pulling the pieces back together from another blow in my life.  I promise this won't be permanent, things always work their way out in my mind somehow, so the ends justify the means.  This is the problem with being a logical person, I need to find a way to balance of the positives of getting this surgery and the negatives of what it means for my life.

#EnterraTherapy #Gastroparesis

Sunday, April 14, 2013

The Waiting Game

So at this point I am waiting, for insurance to come through and until July rolls around.  It is tough because I keep rolling the decision around in my head.  The times when I am feeling ok, I wonder if I should do this, then of course I go and eat some food and can barely eat and get sick.  It is crazy to me, since all of this is normal to me, it is normal to never have hunger pains, it is normal for me to forget to eat and it is also normal to me to get sick, so I always eat food strategically, so I am either at home or leaving where I am at soon after or I double up on medications hoping they actually work.  Ironically, my doctor told me when I went in that all my drugs counteract each other, so I have to take them at intervaled times with each other, so they will work, it is crazy taking drugs pretty much every hour of every day because if I took them all together none of them would work.  I am partially worried about taking care of Loki after, how long really is the recovery before I can fully take care of him again, I know my recovery from surgery is 1-2 weeks, but how long before I can run again or carry him around, those are the things I am most worried about.  For now I am just waiting for things to move forward.  If any of you know me well, you know I hate being in limbo and that is exactly where I am right now, it is driving me crazy!

#EnterraTherapy #Gastroparesis

Tuesday, April 9, 2013

The Surgeon

So for the record almost every surgeon I have met is a complete asshole.  Of course this guy was no different, but my friend reminded me that all surgeons are just that way, they choose that specialty because they don't have to deal with people, they are just there to cut the holes.  He could tell I was stressed and hesitant to be there because I tend to mess with my hands a lot when I am nervous, so he started questioning whether I wanted this, but when I explained that my heart doctor thinks that this device could also cure the issues with my heart, he changed his tune and talked about how so many people have found success with the Enterra Therapy.  That made me feel a little more at ease, but in general I just feel almost like I am not sick enough to get this, but my friend told me, do you ever want to get that sick, it sounds like you are almost to that point of feeding tubes and such, so this is going to stop that from happening.  I thought about it and said yeah you are right, it is hard sometimes to see myself on the outside because it has been so long that I have just lived with this, it is just normal to me.  He said, "you know almost every time I talk to you, you say that you aren't feeling well or are feeling sick."  He is right, I am sick every single day even after taking my medications, I have just grown so used to it over all the years it is just normal to me.  I also thought about how I avoid doing certain things or avoid eating out over the fear that I will get ill.  I want to be able to go out and not feel ill and not have to worry about getting sick.  I am horrible at minimizing things in my life, I partially do this so I can function and not dwell on things and let them run my life, but sometimes I guess I need to step back and really see how bad some situations are and how they do affect my life.

I called my GI doctor after my appointment because the surgeon said most of the time people don't come to see him until insurance has approved the implantation, so I wasn't 100% sure if I had to do anything more.  The GI office said the doctor submitted all the paperwork to Medtronic who does the advocating with my insurance company for the Enterra Therapy.  It is a relief to know that they do this for you, I worked for an insurance company, I know how brutal they can be.  I am hoping that goes quickly and I do not need to worry about that much longer.  The surgeon said he isn't sure why it is a huge deal to insurance companies because compared to other medical devices the cost of this device is fairly reasonable.  I used to work at Boston Scientific in the Cardiac Rhythm Division, so I know how expensive some of the heart devices can cost and it is steep in some situations.  I am hopeful everything goes smoothly, but we will see what happens.  My GI doctor is pretty confident though that it will be approved by insurance, so crossing my fingers that I am not waiting too long!

#EnterraTherapy #Gastroparesis

Monday, April 8, 2013

Neurocardiogenic Syncope

I got a third opinion on my heart today, since the U blew me off and Mayo is dragging their feet.  I am so glad I went and got this opinion though because the doctor really put my mind at ease and finally closed the book for me on my heart issues.  She stated that based on all my records that my heart problems are neurocardiogenic syncope caused by my stomach issues.  This is the connection I have always been looking for.  I also am feeling more confident in getting the Enterra Therapy because she said that if I can fix the stomach problems, the nerve that Enterra stimulates is also the same one aggravating my heart, so it should fix both problems.  Downside is that if it doesn't work, I have to go on more medications, oh well, thus is life right.  I am just glad that I can finally close the book on my heart issues for now. :-) Small victory in some ways right?!?!?!?!

This is making me hopeful that I can have a "normal" life after I get this device.  I am losing a lot, but I am also gaining my life back, no more feeling ill for the most part.  It feels nice to think that I may be able to function at 100% at some point.  I know there are no guarantees, but I am holding out hope. :-)

#EnterraTherapy #Gastroparesis

Sunday, April 7, 2013

The Plan

So far this is my current plan.  I am meeting with my surgeon on Tuesday to get the final go ahead to get the surgery.  However, I will be putting it off until July, when I have a lull between summer classes and the fall semester.  It is going to be a tight fit considering the only time my GI doctor can do it in July is the last week and I start school in August, yikes!  I have been so busy trying to move things and create openings at work and finding care for Loki just to free up July.  The sheet that my GI doctor gave me said that the surgery requires a two to three day hospital stay and one to three weeks of recovery.  The worst part is probably going to figure out where Loki is going to land during that time because I assume I will not be able to take care of him until I fully recover.

I also have to work through the insurance fight.  My doctor said it will take from one day to several months to get insurance approval.  The reason why Enterra is not covered is because it has a HDE (Humanitarian Device Exception).  The FDA is unable to approve this device for full approval because it is used rarely to treat a rare condition.  If there are less than 4000 implants a year the FDA can only approve the device for HDE because there are not enough cases to establish an appropriate analysis of the potential side effects and effectiveness of the device.  The HDE is an approval for people to get the device as a last resort, you have to have gone through all the available drug therapies and prove that they do not work to receive the device.  Obviously I have been fighting this for years, but the insurance company needs tons and tons of proof to establish that they want to pay for an excessively expensive device.  The awesome part is that my doctor said that Medtronic will do all the insurance leg work and that they have a whole group that basically does just that.  I was so relieved to find out I wasn't going to have to fight with an insurance company (one I used to work for lol) to cover my device.

My assumption is that I will be setting an exact date very soon, so I will keep everyone up to date, but for now I am looking at the end of July time frame.

More information on HDEs:
http://www.fda.gov/MedicalDevices/DeviceRegulationandGuidance/HowtoMarketYourDevice/PremarketSubmissions/HumanitarianDeviceExemption/

#EnterraTherapy #Gastroparesis

Saturday, April 6, 2013

Here goes nothing!

As I promised, here is my blog documenting my journey on getting Enterra Therapy.  First, a little background.

I have gastroparesis (GP), as far as they know I was born with it and it is idiopathic.  I had issues when I was young, but nothing too horrible.  Things really didn't start to deteriorate until my pre-teen years, up to that point I dealt with the issues through over the counter medications.  My mom kept telling me to go see a doctor about it, but she scared me because she said I would have to go get all kinds of tests that I wasn't ready for.  I finally caved though when it started to make me miss school.  I quickly got on board with the best GI practice in the state, since my general practitioner was very much baffled as to what was wrong.  After I started at my GI specialist it basically took years and years of medications, tests, etc. to finally land on the conclusion that yep this is GP and there is nothing we can do about it.  There are only three medications that you can take to treat GP, one of which is not approved for market by the FDA in the US.  I first went for the Erythromycin, but had bad side effects, I then went on to Regulan, which I found out I was allergic to.  By the time those two drugs were ruled out, I was in college, so this was about 05/06.  I went back in and they said that they are going to treat me symptomatically at that point, since I was able to stay out of the hospital and maintain my weight.  It worked out for quite a few years, my weight would go down, but I would push it back up, it was always a struggle, but I followed the diets they gave me and took my meds.  All of that changed in November 2011, I absolutely remember the day I went into the ER in extreme pain, not even Morphine could take it away, I had to have Dilaudid just to knock me out.  That was the beginning of three straight months in and out of the ER, the hospital and stacking up my medications to the point where I was on about 13/14, some of them just being prescription strength vitamins from my inability to eat.  I can honestly say that is was one of the worst times in my life, I couldn't eat or drink anymore, I lost 20 lbs, most of them in the third month because I was starving to death.  One day in February 2012 I finally collapsed at work and that was the end of it, I went into the hospital and honestly, I wasn't sure if I was going to make it out that time, I was in such a haze after three months of  starvation and dehydration.  Luckily, they found the source of my problem, finally, my gallbladder had died and when organs die they expand and attach to other ones and basically it was wrapped around my other organs and squeezing them.  After untangling everything and taking it out I thought everything was over.  I did get drastically better, but the toll it took on my body was just too much, I ended up with bile dysfunction and what is now suspected to be damage to other areas.

In July 2012 I took a trip to Vegas, I was passing out a decent amount and my friend was worried, so I told her ok ok I will go to the doctor to make sure I'm ok.  Of course in Vegas the Urgent Care doesn't do blood work, don't ask me, so they said oh just go to the hospital and they can do it for you.  I said ok whatever, it was annoying, but I went.  I was sitting in the ER waiting for them to cut me loose when they came in and said, your heart monitor has been going off, you look like you are in AV Nodal Block 2, if you hit a Level 3 you will be in full cardiac arrest, we cannot let you leave and get on your plane tomorrow in case you hit a level 3 on the flight and die midair.  I thought the gallbladder thing was scary, I cannot tell you how scary this was, all that was running through my head was that I wouldn't get to see Loki one last time.  They said they couldn't do testing until the morning, so I basically didn't sleep at all that night, my heart rate was dropping into the low 30s and my BP into the 80s/50s & 60s.  They got me up bright and early from my sleep and ran me through a million tests to make sure I was stable enough to fly home.  Luckily, I was stabilized and sent home on my flight to go see the heart doctors back home.  I am not going to lie the individuals that work at St. Rose Dominican- Siena were a God send, such amazing people working so hard to make sure I could get home again.  This of course led to tons of tests, doctor appointments, some new medications, ER/hospital visits, neurologists and then to Mayo.  Needless to say, the reason why I go in and out of arrhythmia is still a mystery that I am trying to figure out, but the doctors aren't alarmed anymore because my body will kick itself out of the arrhythmia after a couple days to a week.

That basically leads to the now.  Since I go to one of the best GI doctors in the state, it takes me months and months to get an appointment.  I finally got in to see him because things were not in control anymore and I started to see myself having a hard time maintaining my weight.  I knew this was coming for years, but I walked in and he said "we have been working on this for years and the past year has been tough and we aren't seeing improvement anymore.  I know this has been mentioned many times in the past, but I now think our only option is the Enterra Therapy system."  I should have seen this coming, but I almost felt blindsided by it for some reason.  It was just not something I really was expecting.  He said "the heart problems are most likely being triggered by dehydration and/or nutrition problems, the bile symptoms and the medications for it complicate the GP, which makes it much worse and the test results are turning up worse and worse as the years go by.  After seeing the results from the most recent test at Mayo, you will need to consider this therapy."  (FYI these are all massive paraphrases, but just so you get the gist)  I of course ran back to work and researched and researched, called the surgeon and the patient coordinators to get more information.  I finally came across the one thing I dreaded, because this is placed in my abdomen and the shocks are in my stomach, I am highly highly highly discouraged from having a child and getting permanent birth control.  Basically, I cannot have any more kids without it being a very very high risk pregnancy, to be honest, it completely broke my heart.  I know there will be haters that say, well whatever you can adopt and there are women who can never have kids blah blah you should be lucky, but to me it isn't that, it is just that I always had this perfect vision in my head of meeting someone else, falling in love and giving Loki a sibling, having the picture perfect normal boring life that I want.  I admit that Loki may have been my only kid and this wouldn't matter, but the thought of losing the chance is heartbreaking.  I have such a huge love for children though that I know I will be able to adopt and/or love my significant other's kids just as my own, just like I love Loki, so I have come to terms with it.  This is just the start of my journey, I will write more later as it comes, I think this is enough to digest for now :-)

Also, for those of you that don't know me super well, this is hard for me to write because I downplay these problems every day.  I hate when people define me as being weak or disabled or what not, I still try to live my life to the fullest extent possible and I do not let any of this define me.  Bottom line, if you want to know more, ask me, I am a completely honest open book and I will answer everything to the best of my ability. :-)

My life is not what I ever envisioned it to be, but it is perfect to me.

Here is the Mayo page on gastroparesis, if you really feel compelled to learn more: http://www.mayoclinic.com/health/gastroparesis/DS00612

Here is Medtronic's page on Enterra Therapy:
http://www.medtronic.com/patients/gastroparesis/device/what-is-it/

#EnterraTherapy #Gastroparesis