Not dead yet

Where do I begin?

Short version:

We made the move okay although we’ve barely unpacked, still have a lot of boxes untouched. We had to temporarily leave behind a truckload of mostly my husband’s business equipment in Omaha, and a car.

Unfortunately my husband has been unable to work as his equipment is still in Omaha, so I will need to beg for more financial help to get the things here—most importantly the tools and machines we need to maybe get some income flowing back in.

I have also been in and out of the hospital for the past two months and very close to death.

And now for the long version:

After two months of preparation—two months which were not enough—we made the most difficult move I’ve ever done in my life. It was frustrating to not be able to get up and pack my stuff myself, as I was always struggling to breathe whenever I tried to get up.

The drive to Pittsburgh was very difficult, and not helped by the fact that our family includes six cats and one snake. I arrived on June 25th after 18 hours of straight driving, only stopping over a few times for gas. Since my husband was finishing things up in Omaha and wouldn’t arrive until a week later, I had a good friend of mine who was kind enough to drive me. My mom stayed with me at the new place until my husband caught up.

The first time I went to the hospital was about two weeks into the new place, and it was because of a collapsed right lung with a pneumothorax. I first went to a hospital close by but then was later taken by ambulance to my hospital, where I would spend seven days. During that time, my pain medication was switched to a patch, and it worked very well. However, another week later and the patch started giving me vertigo. I couldn’t keep my food down so I lost a lot of weight and I am now 40 lbs underweight. I was sick with vertigo for almost two weeks before finally getting an appointment with a pain specialist. They took me off the patch and replaced it with capsules that I had to open and take in mixed with applesauce, which worked well—though my throat problems made it extremely difficult to swallow. With all the pills, food, and drink, the throat issues put me at risk of aspiration.

The second hospital stay started on Sunday, August 12th, and I was discharged on September 12th, Wednesday. Although I had no pain, I still had shortness of breath. This was for a new occurrence of pneumothorax in the same collapsed lung. I spent four days in ICU before I could be transferred to the leukemia unit.

The time I spent in that leukemia unit was probably one of my favorite hospital stays ever. I was so bad off that I could not move my body on my own, but my super attentive nurses would reposition me, fluff my pillows, move me around—it was amazing! Several of them agreed I needed ICU levels of care, but they really took good care of me.

It was my favorite hospital stay, but also my most difficult one in a lot of ways. I had five chest tubes inserted (one of which is still there) and I almost suffocated to death. Thankfully, my body is not ready to give up yet! My doctors and I were not sure I was going to make it home. When I started to improve and kept on improving, it was more than a little surprising. By the time I came home, I had improved enough to be able to stand up and shuffle along with my walker.

During my month-long hospital stay, I made a new friend: my feeding tube! The feeding tube’s name is “Itsa” and it goes directly into my stomach. Itsa has allowed me to worry a lot less about aspiration when taking in nutrition and meds. I was down to 88.8 lbs when they weighed me at the hospital, but Itsa has helped me gain some weight back (I haven’t checked but I should be in the 90’s by now). Itsa was placed in during an endoscopy, which we had been wanting to do anyway, and we were informed that that was the time to put a feeding tube in so we took the opportunity. I have had no problems at all with Itsa, and it has just overall made life easier for me.

I’ve been home from the hospital for less than a week. I am on countless medications for my lung, and Itsa has been helping me out a lot with taking them, and yet I still have a lot of difficulty breathing. The house that we’re renting does not have central air conditioning, so we just got a used air conditioning window unit that we hope will help.

For now I am taking baby steps toward getting better. I’ve had to adjust my beat to the tune of my body, and soon I hope those baby steps will become a little dance.

If you would like to help me dance again, here is how:

I need babysitting, someone to sit with me and tend to the little things like getting me food or drink, etc. This will free up my husband’s time and allow him to finally unpack for one, and for another let him get back to work once we get his business equipment. We need this at all hours of the day, so any available time you have that can be spent with me will be very helpful.

Regarding getting my husband’s work equipment back, we also need approximately $ 2,000 to get our things from Omaha to Pittsburgh. I also need new sclera lenses, as the ones I currently use are so scuffed up that my vision is foggy through them, and the recent polishing they got didn’t do them much good. Since my eyes require the lenses to be in all the time, I need a second pair to swap out and keep my eyes clean and clear. The lenses are $ 800 per pair as they are custom fit.

As usual, my blog update is long overdue. I would apologize, but there was not a way that I could have posted this any sooner. Thanks again for all the love and support, and a HUGE thanks to my friend Stephanie who typed most of this for me!! :)

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