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