That's what I'm trying to do these days. It's hard to put one foot in front of the other and keep plodding forward when life doesn't seem to be improving as quickly as you would hope. It's not easy to drag your body out of bed when every part hurts. It's not fun to spend half the night in the ER again. No, none of this is easy, but this life isn't all about easy. It's about pressing on when you can't imagine how you're going to get through another hour. It's about remembering that this life isn't all there is...that this pain isn't forever.
That's what I've been trying to do since I last posted over seven weeks ago. But there are also some amazing things to rejoice in - answered prayers! The two major ones are 1) after a long season of impaired swallowing that would often have me choking on the tiniest sip of water, I am now able to swallow liquids again (and even some tiny pills!) and 2) my weight has increased by 25-30 pounds since May. Many of you might not recognize me, that's how dramatic the change has been. Two years ago, I weighed 65 pounds and was just beginning tube feeds, unable to eat or drink. Now, I have surpassed my goal weight and am no longer on a feeding tube but continue to rely on TPN and hydration through my PICC line each night. I have also been attempting to eat some foods over the past few months and recently met with a nutritionist who would like to help me do my best to transition off of the TPN completely.
So, this probably sounds very exciting to you, and I do find myself needing to stop and remind myself just how significant and amazing it is that I can attempt these things at all. These things are definitely the result of answered prayer and more! God has brought me so far. So what's next? Well, the reality is that I still have a severe motility disorder which keeps the food that I take in from being digested properly and then moved on through my GI tract. It can be very discouraging to wake up in the morning still full from whatever I ate the previous day. My body is just not able to digest, process, and assimilate my food properly, but I don't want to give up trying. Because my weight is now more than stable and I am able to swallow, I may be able to transition off the TPN and away from the constant risk of infection it presents. But even if I do this, my system is not able to handle the volume of water or liquids I would need in order to stay hydrated, and so I would need to continue that through my PICC line as long as necessary. For the past month or so I have been alternating TPN and hydration from night to night and have developed a significant issue with fluid retention and swelling which does not seem to be resolving too quickly.
What's the plan? Well, the nutritionist that I recently met with gave me a sample diet to implement as well as some supplements and plans to make adjustments as I go along. It's a very rigid diet that excludes all corn, soy, dairy, gluten, yeast, and sugar which should be pretty easy for me since I haven't had much of those things for five years or more, but my body has grown used to living on sugar (it was the main ingredient in my tube feeds and now my TPN) and as much as I want to get off of it, I think it's going to be a tough transition period.
I am still on a blood thinner and recently learned that I have a genetic predisposition to form clots. I also have serious osteoporosis and therefore these are two big reasons to avoid falls and injuries. For those of you who are curious, this is why I still ride in the back seat of the car.
I am doing both PT and OT each week and seem to have 2-3 appointments of some sort every day of the week. I'm so grateful for so many of you that serve me by giving me rides. I know it's a lot!
This past weekend, I took the train to visit my brother in Virginia and ended up in the ER for much of Friday night with my PICC line dressing off and the catheter coming out.My chest x-ray showed that the line was still safe to use but it had pulled up more than normal. Basically, its days are numbered. It would be amazing if the day it stops functioning would be the day I no longer need it. Anything is possible for God! But if not, He must have something better in store.
So there is much to be grateful for, much to rejoice in, much to give thanks about. Yet, my present reality is still quite difficult. In many ways, I am less dependent on others than I was even earlier this year - I am able to get around the house and yard with the support of a crutch, make it up and down the stairs in my house, prepare my TPN, and other things, but I am still quite dependent in other areas - I don't drive, can't clean my room, have difficulty making my bed, I drop things, I can't do much for others, and it is difficult to pick things up from the ground, bend over, or sit for very long. And yes, it has been absolutely amazing to be able to eat some things again, but the steaming peach crisp my family is eating after dinner seems to taunt me. I continue to experience a constant level of pain and complexity of symptoms including severe weakness/heaviness, joint pain, body aches, and strange neurological symptoms. Over the past few days, I have felt like I am regressing in many ways, and it can be so difficult to continue to eat through the scary symptoms or force myself to swallow when I think my throat is going to lock again, yet I don't want to go back. And God keeps calling me forward.
Practically, this means getting myself on a strict schedule and regimen that will give me the best chance for success with this diet as well as my medicines, sleep, and physical and occupational therapy to build strength. I don't know if it will be successful, and there is no promise that my motility disorder will resolve, but I do know that God is still in control and still up to something better than I can imagine in the midst of it all.
If you've stuck it out this far, thanks for reading such a long update. I continue to be so dependent upon your prayers. Thank you.
