Today was a *good* day. Any one who has chronic health problems will know exactly what I mean. Physically, I was feeling pretty well and since my emotional state tends to be closely related to how I'm feeling physically (not all the time but mostly) I was feeling happy today too. Seeing as how yesterday, I was NOT feeling very well physically or emotionally, today was a nice change. Especially since I had to go out today for an appointment and when I feel good, I have enough energy to go other places afterwards.
What was kind of funny though, is that I used to have good days and bad days, and I could usually tell which is was going to be as soon as I woke up. Now, classifying my days as either good or bad depends on if the good moments of the day outweigh the bad moments. I don't think I'm explaining this very well... maybe I'll have to write about it in more detail later but the point is that when I woke up this morning, I didn't feel well and I was really cranky and tired. By the time I needed to leave for my appointment, I was feeling way better, much more perky, more awake, and was not dreading going out.
This is the first time I've been out of the house since I got back from the hospital two weeks ago. I had an appointment the day after I got home and I have stayed inside every since. I like my house, I like my bed, I like being comfortable and I don't feel like going anywhere. Actually, I don't even WANT to go anywhere at all. Ever again. I'm going to live out the rest of my days in my bed with the zebra striped blanket, lime green pillows and all my electronics, books and movies, eating cheetos and writing on my blog. Haha, as if.
No, actually, I've just been too tired to go out anywhere and it's annoying to try and schedule my dialysis around going out anywhere and making sure I'm not out longer than four hours at a time or that means having to do a dialysis exchange in the car (it's possible, I just haven't tried it yet).
I did have to go out today though because of an appointment with the surgeon who does the dialysis accesses (i.e. Fistulas, grafts, catheters, ports etc.) He didn't put in any of mine but he was the one who took out my shoulder catheter for the hemo-dialysis and he just wanted to look at the site to make sure it was healing properly and everything like that. After he looked at my shoulder and told me that everything looked great, he then proceeded to tell me that I should probably look into getting a fistula in place since having a catheter anywhere (like I did before) is extremely damaging to my veins and we want to save them for as long as possible and that a fistula would be a good idea to have in case, for whatever reason, I can't do PD anymore.
So, quick crash course on what a fistula is: That's when they take a vein and fuse it with an artery in order to make a big enough area for dialysis. It takes about 4-6 weeks (if I remember right) to grow together, re-route the blood flow and become strong enough before it can be used and it's a highly visible, very ugly and scary looking lump on the arm. The size and location varies.
For anyone who has ever seen me in person, I am very tiny. One nurse described me as slender because she said it sounded better than skinny. Slender, thin, skinny, tiny... whatever, you get the picture. As such, I have very thin arms. A fistula is going to make my arm look deformed if I even have big enough veins to do one. All that to say, this doctor is going to schedule a "vein-mapping" appointment (which, in all honesty, I should have had this done LONG BEFORE I even started considering dialysis), and this will determine if my arms are even capable of a fistula or if I'll need a graft or another catheter stuck in my shoulder or neck. Ugh... makes my head spin.
On the plus side, though, if I get a fistula, then I'll actually have a very cool, visible scar that I can make up a story about and show people. All of my other scars from dialysis and the transplant aren't really in places that I can show off, modestly, except for maybe my shoulder. Yes, I know, I'm kind of weird like that but I figure if I've got to have surgery, or tubes stuck in me or fistulas or whatever, the least I can get back is a cool scar that I can make up a story about and see if people will believe. The fistula scar looks like a shark bite and that's what I would tell people who asked about it just so I could get a laugh about it. Then I'd tell them the truth... maybe. ;-)
After the appointment, we went to Walmart to pick up some things and I saw some of my nurses from the dialysis center. I almost didn't recognize them out of the center but they were at least still in their scrubs because if they had been wearing anything else I probably would have had no clue who they were since I only ever see them in their scrub uniforms. It was nice to be able to say hi and visit a little bit without being in some sort of medical facility. That's where I want to see my nurses, but usually I see them because I'm back in the hospital again.
As an ending note, I am amazed and humbled at what this little blog is doing. The last few comments I received made me cry. I was confronted with my selfish attitude of not wanting people to know about my illness, trying to pretend this doesn't exist and putting up a front to hide my real feelings and rendering it impossible for God to use me to bless others and I hindered God being able to use others to bless and encourage me because I wasn't willing to share. The very fact that I'm reaching and encouraging more people from my bed while being practically house-bound than I ever have in the last 19 years of my life, during most of which I was much more active than now, simply astounds me. Thank you all, for your continuing support and prayers. I may not always reply to every comment, but I do read them all and I read them often. :-)