How Am I?

I have been getting a lot of messages from people asking how I’m doing. I guess that means it’s time for an update.

A couple weeks ago I had an appointment with my main doc. She was happy with the way things were going. Rash is looking a bit better. She stopped my steroids and started to lower my cyclosporine. Not much, as this will take time to get weened off of.

Things seemed to be going well. The rash got a bit worse and I had to stop light therapy to see if it is actually an allergy to the lights. I think it might be . My hands are covered . It’s really uncomfortable. On top of that my bones started hurting. I am not sure if this is a reaction to lowering meds or if its related to psoriasis. You can get something called psoriatic arthritis but with everything I’ve been through , it’s a guessing game until my next appointment.

I have been trying to get out a bit more. I made it to Madison and Gavin’s first track meet. Went to church , did some visiting. At the moment I am struggling with stomach pain but hopefully it will pass soon.

Aaron hurt his back at work and is in pretty rough shape. I’m hoping he takes a couple days off to rest. We are It day by day here. Don’t expect a clean house . Speaking of which, I’m looking for someone to come in and wash all the mold from my window sills . If you know a reasonable company please let me know. 😀

Here’s some pics of the last couple weeks.

getting hair !!!

First in long jump. Both Kids did really well at this event.

Rash 😞

Guarding his new toy. Don’t worry , I saved the snake.

Now What?

This past week has been a bit bittersweet. My trifusion line came out on Thursday. I have had a line of some sort in me since January 25th of 2017. It feels like I am missing a bone. Here’s what my line looked like if you see the little peach looking thing, that’s what adhered to my flesh, the rest was inside my vein.

So this was a huge milestone. On Tuesday before I had my line pulled I was told that once my line was out there was no reason for me to go back to daycare. I have gone to daycare 1-5 times a week since I started this journey. It caught me off guard. I felt a whole lot of things in that moment, sad, happy, excited, unsure. I will miss the nurses but I will especially miss Dr.Tejpar. She has been such an amazing support and encourager to me. She helped get me through some of my toughest battles and even listened to me when I made suggestions . She always said I was made of titanium abs when she heard the song by Sia come on the radio she always

thinks if me. Sigh…. I will miss her terribly . 😢 She’s retiring at the end of May and I am so glad that it is after I have left and not before. She will be someone I will never forget. Sniff sniff.

So also with my line being pulled I can FINALLY say goodbye to daltaparin shots every night. Yay!!!!!! A year of poking my belly was way too long for me. My hematologist said I have to take aspirin forever and there’s no need to go back to her. That’s another part closed.

So now what?

I have an appointment on Tuesday with my doc in charge. I think the plan is to still go see her in long term care once a month. I imagine the steroids will be stopped and cyclosporine ( immune suppressant) will be tapered. I will have to do blood work every week but can do it locally.

On top of that we returned all the borrowed gear to the Red Cross. No more walker. I still get dizzy but it’s not as bad. If I get tired , I find a seat. If I get dizzy, I find an arm to hold on to.

Many have asked how I’ve been feeling. I feel my self getting stronger. I’m able to do a bit more . It’s a slow process but it is happening. I went and did groceries yesterday and it felt like I ran a marathon. The nausea seems to have settled. I lost some weight so I imagine it will come back now. Lol unfortunately I am still dealing with psoriasis but it’s not life threatening. Therefore I try not to complain. I am currently still cancer free. Praying it stays this way.

One thing I won’t miss is finding out friends from the clinic have passed away. It takes a toll on your heart. I am overwhelmed his horrible leukaemia is. It kills so many people. Many don’t make it. It’s sad. I’m grateful to my Heavenly Father for sparing me so far.

On a family note , my mom and I will miss our weekly drives to Vancouver. I’m sure we can find better things to do 😊. Aaron’s truck broke down so we bought a new to us car. A 2006 Malibu. Its actually my first car. When I got my licence I had Gavin already so just went straight to a van.

I was able to also witness my good friend Mel marry her hunny. I was so thankful to be there. The next day we went out to the keg with some friends ( my tummy acted up and I didn’t end up ordering, so bummed). Here’s me and Aaron beforehand. This is also probably the last time I will ever have to wear a wig 🤞.

One more exciting thing. Our youngest received a big award from hockey. It’s an award of great honor and basically represents respect, good attitude, sportsmanship, leadership, skill. Gavin received this award in grade 6 and now Brandon. I asked if he told his teacher the next day and he said bragging isn’t good mom. And that’s exactly the attitude that got him that award. But I still want to share it. He had said probably 100 times that he can’t believe he got the Gerry Pol award.

I’m proud of my little man. He earned it. He’s an great kid.

Anyways if you made it this far, thank you for taking the time to read it all. Until next time.

Psoriasis- My Enemy

Once again when things start to settle and I start to feel a bit more like myself, I break out into psoriasis. I know I already mentioned it before today but it has blossomed into a more intense case. As we speak my hand are blown up from it and feel like I have hives all over them. It’s itchy and it burns and hurts. I can’t go to light therapy again until tomorrow but I sure hope it starts working soon.

As a transplant patient this is a result of my immune system being messed around.

Here’s a pic of my leg 70 % of my body is covered :

To put it lightly, I am not having fun. 😢