Snow Queen

[HipHopQueen]

Tonight was the first real snow of the year. It has me thinking will this be the last first snow that I will not be on dialysis. I am trying not to think that way. It's just hard. But you know I'm going to put a bright spin on it. It's okay if this is the last first snow, I truly enjoyed watch every fat snowflake land on our deck and grow in height with each passing hour.

I've been listed as inactive due to needing a surgery on my ovary and cyst, which I have upcoming in December, and getting my bloodwork results this Friday concerning my endocrinology results. So until I get these things done I can't be active. I am pretty sure I'll still have to be reviewed after I get those things looked at. I've been so busy with school that honestly haven't had time to think about it all that much. I'm just keeping it moving. I know I need to think about it and let it be real because I haven't and need to deal with it.

I've been having a hard time getting comfortable with my fistula arm. It's mainly when I go to bed. I can't lean on that arm like I use to to watch tv. My hand falls asleep. And everyone knows that prickly feeling. ICK. I use to be a side sleeper but I'm thinking I'm going to have to lay on my back. I use CPAP too and that hose is a pain in the behind.

I'm ready for winter break from school and work. I love curling up under a blanket and watching Hallmark or Lifetime. I know it's an escape from all there is to deal with but what a great escape it is. ⛷️

[Darlenia]

Oh Hip Hop! No matter what happens, you'll still enjoy those snowy scenes, you'll still watch your favorite TV channels, and more. Yes, we all mourn what "was", but often good things happen in the future too. Above all, it's good to simply take it one step at a time, living each day fully, because that's the only day we have. As the saying goes, the past is gone and tomorrow isn't promised, so live today! Sending you lots of light and love!

[HipHopQueen in reply to Darlenia]

This is beautiful.

[cs65 NKF Ambassador]

Try sleeping with your arm on another pillow set lengthwise - it'll help you to not accidentally roll over on it. You can do that while you watch tv, too. Yes, Hallmark has some pretty good looking Christmas movies coming up on weekend nights! We watch way too much CNN and I find comfort watching Dr. Pol on NatGeo Wild or Walter Santi cat videos on You Tube, but heck, Hallmark season is here now!

I was on inactive, too when I had stress related cardiomyopathy while on dialysis. I did cardiac rehab to get stronger once I got out of the hospital and was put back on active status 6 months later. I also had my ovaries and fallopian tubes removed before I was on dialysis - it was an easier surgery since it was laparoscopic and I didn't have big scars. I think you'll make it through your surgery and all just fine. I did four years of in center hemodialysis before I got my transplant at almost 69 years old. Anything is possible when you set your mind to it!

[HipHopQueen in reply to cs65]

cs65 I love your attitude. I'll have to try the pillow. I'm wondering if it's not good that I lean to my left, the arm that has the fistula in my wheelchair. I catch myself and try to straighten up. I must look like I'm being zapped with a taser. I will be strong. I know it was take a lot but I'm determined to get a transplant. What was your recovery like from the ovaries and fallopian tube surgery? They said most likely I'd need two days and I could go back to work. I'm in no hurry, they said it could be up to a week. What do you think your greatest help was as you went through dialysis?

[cs65 NKF Ambassador]

You know, I really don't remember, so it must not have been that bad! I had the surgery because my sister died of ovarian cancer and I wanted to eliminate that risk. I did have an ovarian cyst previously that disappeared when I had my next period, as my sister's doctor assured me would happen.

As for dialysis, I did my best to keep a good attitude about it. The staff were a tremendous help in teaching me about the process, anything I wanted to know that would make it work better for me. I was very scared at the beginning because every experience was brand new, so they were a big help reassuring me that things would happen and they would help me get through them. I went from screaming at a blood spill to laughing about it! Yes, there are uncomfortable experiences like cramps, low blood pressure and infiltrations, but there are always ways to stop or ease them. Slowly I gained confidence and that helped me handle everything. Another way I coped was to bring things from home to make me more comfortable in the chair. A warm hat, warm layers of clothing, a warm blanket are necessary because the machine cools your blood as it circulates it away from you and back to you. Some people use pillows behind or under them and I used a rolled up towel under my fistula arm to make it more comfortable. You can also ask the nurses for a cream called Emla to numb your fistula so you don't feel the needles going in. I also suggest bringing something to do during dialysis because tv gets boring and I couldn't sleep there. I was an avid reader, others had smartphones or tablets, etc. The advantage to going in center is that you'll really get to know the other patients, nurses, techs, doctors, and unit assistants - it used to be a real social time in the waiting room prior to Covid. Oh, and since you use a wheelchair, it is pretty easy to transfer back and forth to the dialysis chair. I had to use one for a time when I fell and broke my hip and had a partial hip replacement. Everything will work itself out in time as long as you keep hope and determination!