Follow me Into the Rabbit Hole:

 I have been living in a low space for awhile now and it's very hard to get motivated. I've decided to try something new while I find my way out/through/around it. So...follow me:

Sliding Into the Rabbit Hole

Into the New Year

 Still taking life one day at a time.

Still dealing with covid. Have had 2 shots and a booster and am doing ok so here's hoping covid doesn't get me!

I can't believe it's been going on for 2 years now!

I also can't believe we're into February already!! 

So still going along doing my thing but some days are a bit MORE.

The thing nowadays is that we are having to use trickier parts of my graft in order to USE more of it and make it last longer.

So there are parts on both sides that are now unusable and are avoided and we have to get the needles in shorter parts to access the graft. They go in each end of the curve around my cherry blossom and also on either side of the one blossom (to avoid the ink). They go into the short space above the curve (and it's tricky around the curve because...it curves!! Can't always fit the whole needle in there...and the last places they use are up closer to the scar on my inner elbow on both sides. I generally don't move my arm much once we start so it's ok and I'm good with whatever they have to do. Grafts don't last as long as fistulas because they are made of plastic but my nurse explained that the graft is like layers so that's why you can use it for so long before it gets compromised. (3 years before the two spots became unusable)...when you see it on the sonosite (ultrasound machine-which makes everything easier) you can see that both sides are no longer shiny and look used up. So here's hoping the tricky spots take another 3 years before we have to figure out what next!!

In the meantime,

I am feeling tired and sometimes stressed and sometimes antsy.

It will pass but in the lows I'm just TIRED. More than one way.

Take a deep breath and carry on!

Rough Week

 This has been a rough week. Everything was weird because dialysis was bumped around so I had Tues and wed through the week off to do my thing so I spent both days snugging with Loki and by mid afternoon of second day full on allergic reaction. When I went to dialysis the next day they had to give me oxygen to help me out and instead of taking fluid off they gave me some which helped a lot ...then I could actually start eating and drinking again because I was actually quite dehydrated and couldn't eat anything but crackers and drink water (which wouldn't stay down). By the next dialysis day I just had a cough and got some lozenges which helped too and another 2 days off basically had me trying to eat, drink, rest, and hope for better days! I haven't had a cold in YEARS! I've been excellent at keeping them at bay but apparently when you spiral down and out of control everything goes to shit!! Still here. Breathing!

2nd Covid Shot

 In May I received my second shot and only had a sore arm for a day and was a bit more tired and achy than usual but no other issues. Here's hoping all will be well.

1st Covid Shot

 I got it on Tues. the 20th. and possibly get the second in 4 months.

It didn't hurt until the next day but I think that was from sleeping on it. 

Then I was achy and tired but I'm fine today. 

I am stressed for other reasons but I'm sure it will pass.

It's just an insane world we are living in right now and it gets hard to deal with sometimes.

Just breath and carry on...

Fistulagram and Angioplasty

 So March 23 I went to Orillia (in the midst of this Covid world so it was a very stressful day for me because I ONLY go to dialysis and home right now) to have my graft looked at with dye so they could see if it had any problems. I don't know because I didn't see because I was just laying on the table covered in towels but they checked it out, saw what problems there were and then put little balloons inside it to expand it and make it better. So then I went to dialysis because it was my usual dialysis day. So for the WHOLE treatment my BP was 230/115 or something else...they did give me a pill at the end of it to help bring it down a bit but I just basically got home had something to eat and went straight to bed. It was NOT my best day but I must say that it was an improvement over all because my numbers are better now, my clearances are better and there is no more whistle in my graft. HOPEFULLY, my graft will be good for awhile now and I don't have to repeat this day again any time soon!! 

One Day at a Time

 I've gotten used to dialysis 3 times a week. (Tues, Thurs. Sat. mornings) I thought about switching but I'm happy where I'm at and I am getting comfortable with the other patients. Things have been going pretty well. I've had my graft for about 3 years now. Have to go Mon. to Barrie to get my arm checked out and see how things are looking. Hopefully I can keep this graft for awhile yet but we will see. In the meantime I watch a lot of shows and plug away at building the worlds for a story I hope to write someday. (I do have interests besides fighting to live! lol) Still HERE! One day at a time!!

Checking In

 Going along doing my thing, One Day At A Time.

Took a pic to share in case anyone is curious about the dialysis:

Because I have a graft (a loop graft) the needle on the right goes in at the top. It takes the blood out and runs it through the machine. Then the clean blood comes back in through the bottom needle and while I DO feel much better doing hemodialysis than I did doing PD dialysis, I'm always tired on dialysis days and I usually nap or at least laze around because standing up sometimes gives me a headache. My body feels achy and sore and really it shouldn't be a surprise because dialysis is like making your heart run a marathon...do I look like a person who WANTS to run a marathon?

I am grateful anyways for every day, even the dialysis days.

Keep breathing and cherish the moments!

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One Day at a Time

So far things are going pretty well on dialysis. I'm just getting into a  better frame of mind for doing more things in life so I've been working on my blogs again and I wrote a 365 days of the word poem book that has been published on lulu.com. I also have been working on my books. I'm writing a very ambitious series of books but first I am world building and it is a LOT of work. I WILL keep working and trying and someday I will actually tell the stories!!

Bath!!!!!

Today I had my first bath since I started pd in 2014! Lavender bubble bath, hot water, relaxing and heavenly! I missed baths very much...I do feel better too ...I was achy this morning ...sometimes a good soak just makes the world alright <3 :)

So...

I haven't checked in for awhile but I've been going along getting along and dealing with my life day by day...I am going three times a week to dialysis and so far things are on track. Graft works well...needles go in easy...very few alarms go off...I've sorted that I must eat so I have a nepro during treatment and my bp hasn't dropped the last few times so I think that's the trick. So I've gotten to a place where I can breath and endure and I've been reading a lot but I sometimes feel like I want MORE to do but I barely have enough time in a week to do any of the things I DO do...so I'm still sorting my life! But...I am still HERE!

Ugh!

I don't get home until 7 o'clock and then I want to eat because I'm starving!!
Because...it takes so long to hold my arm after till it stops bleeding...not my idea of fun but here's hoping we all get better at it!

So...

From May until the 15th I waited for a surgery appointment On May 15 I had surgery to have a graft put in my arm. So I waited for the graft and my arm to heal for WEEKS! It was swollen a long time and sometimes even still my hand is full of fluid and swollen so I haven't put my rings back on :( but I found one that actually fits so my hand isn't naked! lol
I have since been to see Dr. Gowing twice for check ups and today I will do my first hemo treatment using my graft.
From now on I will be going to hemo 3 times a week again and I am now done with PD ...eventually I will get my pd catheter taken out so at least I can be somewhat back to normal again except for having to go 3 times a week for dialysis...however, I am STILL here!!
It has been a long couple of months but I have had time to breath and I'm still unsure about home hemo but for now I will get used to hemo 3 times a week and see how it goes.
I can tell you today that I have MUCH more energy right now than I have had on PD and I feel pretty good :) Keep on keeping on!!!
   

And On it Goes...

So...on Mon I have an appt in Barrie to get my arm veins mapped and I'm not sure if I have to get surgery or I have to wait longer for that part.
I have been doing 2.5 bags and getting off fluid that way but I don't have anymore and this morning I'm back to 107.2 kg weight...it's fluid and I seem to need 2.5 bags to get it off but then I may get dehydrated so I can't just do 2.5 bags... it's always something isn't it?
The struggle goes on...and on and on...but I am here and still fighting!

The adventure continues...

So...i went fri to get my line change...sat from 1130 to after 2pm...finally got the line sorted and went to dialysis to check in supposedly for 2 hrs but then they said 4! So i had to call hubby to come get me so pop could go home and then my line worked well enough for 2 hrs but doesn't really work better than it ever has so they wanted me to do bloodwork today and then they will let me know but i think i have to go get a graft put in and i have no idea where they are going to put it if i also have to have a fistula which im supposed to be doing soon also. .so the reality is since xmas everything has been out of whack and its hard to settle down because it seems that out of whack is actually just my new reality but i havent sorted out how to roll with it yet! Stress, stress, stress all day long!

Ongoing Adventures...

Well, I've been home on PD again since end of Feb. but it's not working that well so I'm going to be doing hemo once a week on Thurs. (I just got off the phone with someone at Red Cross and have a driver to take me every week so phew that's dealt with!) and they have talked me into at the very least having a home visit to see if our house will be ok for home hemo and the work needed to fit the machine into our lives. Fun wow! Suck it up and get on with it girl! ....I'm not that sure I can handle home hemo but hey I didn't know if I could handle PD either and yet I'm still here just living day to day and getting through it. Just gotta get on with it....

The Adventure Continues...

Well, I finally got to the surgeon and was told I can go back on PD but apparently there are lots of hurdles to jump through before that can happen. Was supposed to go to Orillia on Thurs. this week but apparently I need Iron so I have to have 3 more sessions of Hemo dialysis and then NEXT week can go to Orillia and PLEASE GOD after that I can go back on PD...I feel like they want me to stay on hemo and I'm arguing the point. I want to try PD until I can't and I'm gonna have to get mean and aggressive if they want to argue with me!! Anyway...one day at a time and today I'm TRYING to fix my comp which had a ransomware program attacking it and has decrypted all my files :( bahhhh if it's not one thing it's another!!
Still here.
Still fighting!!
:)

Still having adventures!

Went for dialysis today and it worked for a bit and then it just quit so I didn't actually have my dialysis...they put some stuff in the line and said go back to orillia at 10am mon to see if they can get it to work...OR get yet another line installed! Out! Can you just please put me back on PD??? So we'll see what's up mon....

Adventures

Well, I have not checked in here for a long while and I was going along doing my thing for awhile and then...
I had a bowel blockage in a hernia under my belly button and as of Dec 16th 2017 I got sick to my stomach and it only got worse from there! I checked into Bracebridge hospital on the 18th (not by choice but I had to because I was very sick) and I was instructed to bring my cycler in there and do my dialysis there until Orillia could get me transferred. On the 19th I was given a tube in my nose to help suck out the stuff in my belly and help stop the puking all day. Unfortunately the tube bothered me and I still puked a time or two (excessive yuck in my belly :( ) Then on the 20th I was transferred to Orillia hospital . That evening I had emergency surgery to correct the hernia and blockage (they said they were going to take out my PD catheter and I would have to switch to Hemo dialysis) but when they did the surgery it was a simple problem and they did NOT remove the catheter after all. So I had staples in my  belly, a PD catheter still attached and then they installed a permanent access line for Hemo dialysis in my chest and sent me down for 3 hrs of dialysis. At this point I still had the tube in my nose and I still hadn't eaten anything ...I hadn't eaten anything but a few crackers since Sat the 16th. I can't remember if it was the 22nd or the 23 when they started giving me liquids and I had chicken broth, jello, and tea and the chicken broth tasted like heaven! (It was just standard chicken broth you know...hospital chicken broth...) but I hadn't eaten in a LONG time by then so it tasted pretty darn good!!
I think actually they started liquids on the 23 because in the night of the 22nd my nurse let me take the tube out of my nose and I had already had two 3 hr sessions of dialysis by then so having the tube out made me feel a hundred percent better!
So I was there until Xmas eve and I had another session of Dialysis and then they allowed me to go home for Xmas!! I was very weak and didn't do any of the things that I planned for Xmas but I was at HOME with my boys and couldn't have been happier to be anywhere else!
Even pop and Denise came by to see us and say hi!
Since then I have been going back and forth to Orillia for dialysis 3 times a week. I was waiting to be able to go to Huntsville which is closer but they had to know things were all good first before they could send me. My access line was NOT very good though and as of Jan 11, 2018 I had another surgery to replace it. Without checking it I started dialysis in Huntsville on Sat Jan 13, 2018 and...my line worked!! I have been going there Tues, Thurs and Sat every week and hopefully after I see the surgeon again in Feb. I will be able to go back on PD again.
In the meantime this is just a speed bump in the road (or if you like an adventure) and it too will pass!
After ALL of that I must just say that I am grateful to be here, alive and still kicking!!