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