Monday, May 2, 2016

Right Now

Six weeks ago I had the surgery that placed a jejunostomy feeding tube (J-tube) into my jejunum, the second part of the small intestines.  The hope was that I could increase my nutritional intake via a tube that bi-passed my partially paralyzed stomach.  After 2 weeks of failed attempts, complications, more trips back to the hospital and surgeons office, and further weight loss, it was determined that I would need something more.

Two weeks ago I received that something more in the form of TPN (total parenteral nutrition) through a port that was surgically placed in my chest.  The hope again was to gain weight, strength, and health.

Trying to figure out how to get around with 2 bags, using the port with TPN and the J-tube with formula.

Right now....

Right now I am constantly reminded that I am unwell when I awake with a nauseating headache, swollen legs/feet, puffy face, and a bloated stomach.  Six weeks ago I had so much hope and excitement for what I truly believed was going to be a quick fix.  The past six weeks, however, have been a true test of my strength.  I've cried out in frustration while giving myself sponge baths to avoid getting my port wet because I just want to stand and cry in the shower instead.  I want to feel the water run down my face, cleaning my hair, and stepping out a new woman.  But, I can't.  Not yet.  I am dependent on this TPN to survive right now.  I realize that crying over not being able to shower like I used to is a little thing.  I tend to lose my cool over the little things instead of the big things.  Dishes left by the sink, I can't handle it.  Ants in the kitchen, I'm done.  Shoes left in the middle of the room, I just can't.  But the big items like failing health, not just mine, are things I can handle because I know I'm not in control of it.  God has those.  He has the little things too but for some reason, he's teaching me patience there too.

Right now, I am trying to accept this reality.  I have held on to so much hope for that overnight miracle that I never allowed myself to see the actual life I was living.  The reality that our life has drastically changed and won't be back to how we had it anytime soon.  The reality that I'm not getting better right now.  The reality that my family has to take on a lifestyle change as well.

Right now I have to remind myself to look back to how I was feeling six weeks ago.  I was stuck in the hospital, not able to go home when I thought I could.  I was in pain and I was feeling miserable.  But I only had up to go.  I have to remind myself that my body did heal from the surgeries and that yes, one day it might function again but right now I have to respect it and take care of it.  I still have challenges, but those challenges have changed.  Learning to accept that healing doesn't happen on my time is tough.  Really tough.  Maybe it's because I've been dealing with these issues for so many years that I think it's ok to say I've had enough.  I have had enough!  I don't want to be in pain anymore.  I don't want to feel nauseous from eating or from not eating.  I don't want my skin to stretch and hurt so bad that I want to cut it open and release the pressure.

The weight is coming on quickly but along with it is swelling and leg pain, a puffy face, decreased appetite and lots of nausea.  I have learned to keep Zofran all over my house and I'm thankful for the majority of the time, it works.

My health is not the only thing that we are dealing with in our home right now.  My beautiful grandma moved in with us one month ago because she has gone on hospice.  She is still doing well, considering.  She joins us for every meal where we get to hear stories and she praises my kids and feeds us love.  We are all so blessed having her with us right now as she goes through this transition.  I know many people think we are crazy but I would not have it any other way.  For one, I wouldn't be able to drive to a facility to visit her so having her with me daily is wonderful.  She's still teaching me cooking tricks, and beating the kids at cards.  She's amazing and a blessing to our family.

Alexis has been dealing with tummy issues for years.  Honestly, I thought it was anxiety but about a year or 2 ago, she started vomiting after eating certain foods.  We figured out which food was causing it and avoided it but then more problems starting popping up. We have a strong family history of food allergies on my side of the family so I took her in to see the doctor.  We learned that she had lost several pounds in a short amount of time and after a bit of frustration, we eventually landed in the right specialist's office.  She finally had blood work done and found to have multiple food allergies (although not severe) and a low IgA which could be an indication of Celiacs Disease.  We don't do easy fixes in this family.  We changed her diet and watched her symptoms improve although a little slip up will cause problems so Anthony and I are the only ones that will cook for her and if she goes anywhere she packs her cooler.  Even with the change of diet, she has developed joint pain and eczema, both signs of Celiacs.  Her GI doctor needs to confirm the diagnosis through an upper endoscopy which i was hoping we could hold off on, or avoid altogether.  She explained the importance of the biopsy results for her so we agreed and now we have to reintroduce the wheat for 2 months.  This is awful.  Alexis is so upset about having to eat something for 2 months that she knows will make her feel miserable.  All I can do is hold her and emphasize with her.  I can't take her pain away and that hurts us all.

This post was tough to write because it's not as upbeat as usual.  Not feeling well is wearing on me.  So for right now, I will sit and wait for the better days to come but I'm allowing myself to accept that our life isn't the adventure we thought we would take.  The beauty of it all is that we are together on it.  We are closer than ever and our love is stronger.  While we wait, we will dream of stress-free, pain-free, laughter filled days frolicking in the ocean together.  We will get there, but not right now.

1 comment:

  1. Karen, you don't know me, read your post thru Dotty. Admire your strength. Your situation makes my problems seem small. Hope life improves for you, soon.


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