Prolonging My School Hiatus

As it gets closer to August 25th my hopes for starting back to school this semester are dwindling. Even though I’m no longer on Cytoxan/chemotherapy, I still can’t seem to get my health back up to par for classes. I have no reason to go back to school if I don’t have the energy to make it through classes yet another semester. I’m not gonna lie, this is a blow to my self-worth. I know, I know, logically I have the same self-worth as before. But it just feels like one more thing that got stepped on by Lupus and I’ll just have to walk away and start new somewhere else. Currently I am maintaining my denial and am certain I will finish school… eventually. In the mean time I am still trying to hold on to the last wisps of the structure for my life I mistakenly thought would go as planned (way back Freshman year!), I have thought of a few things school-wise to turn my focus on.

I have a number of Incompletes that I need to finish for my major, bot to mention graduation. Instead of pushing myself, I will be focusing on two Incompletes for the entire semester. I don’t need to overload myself. On top of the Incompletes, I’ll be Petitioning the school to get my credits to Roll-over. The thing is… by the time I will be able to finish my degree, with the requirements for credits as well as the requirements for my health, I’ll have been “In school” for more than 10yrs!! Ouch! That was another blow to my esteem… it’s taking me more than ten years to get my Bachelor’s Degree:/ But I have certainly enjoyed the topics I’ve perused while attending classes on and off;) I certainly know what I want to do as a career, if I have the opportunity to work outside the home. With the way my Lupus is going, that isn’t looking to be likely! But I will always look for ways to try to get out there!

Wedding Politics

I’ve heard people complain about their weddings, the “adults” in my life that is. But I didn’t really understand until now. I’m going through planning a wedding and it’s mind boggling how much extra nonsense other family members manage to put into the wedding planning.

There have been a number of times throughout the process that my brain has thought, “Why didn’t I elope like I always wanted to?” I have to remind myself that eloping may be easier, but I want my family around me to celebrate. I wanted my friends to be there as well, but that option was taken out from under me. I should start at the beginning of the drama. But I don’t have the energy. This might be something I reflect back on for y’all in a few months instead.

 

KareKrate Package Fun

IMG_5099The  Deluxe KareKrate package came in the mail a few days before my next dose of chemo. Which was really exciting. As far as I was concerned it gave me a chance to take a look at everything in the box and feel sharp-ish-ish… and not as sick while figuring out what each thing was. Little did I know, that KareKrate totally takes into account that I could be receiving it on the worst day after a dose of chemo! IMG_5104They had a folder for me, that when opened, I discovered had a dual purpose. It held papers of information to help any patient understand symptoms that are common with chemotherapy, as well as a page with different colors and different font to help my tired brain distinguish what I’m reading. It explains everything in the gift package that I received! IMG_5155The folder (with this page with colors and different font to help my tired brain distinguish what I’m reading explained) was to keep track of all of my papers and information received when at doctors appointment, etc. The folder also held various pages that explain what more common symptoms are while going through chemo and a number of things to look out for as well as ways to deal with these side affects. I can’t wait to actual sit down and type up my notes for all the different products I’ve had the opportunity to try from KareKrate!!

The Dosage That Finally Made My Guts Heave

I can’t hold anything down this time around. It was the last infusion. What’s weird is the dose was lower than they have been typically. But for some reason it really hit me this time. I’ve decided that it is a combination of things. First I have become to complacent with taking the preventative meds for nausea dizziness, etc. Second, I suspect I over did myself he weekend before my treatment:/ I can’t help it, I want to have fun when I can. In general it keeps my spirits up, but when the backlash is this bad, it doesn’t make the fun worth it. I was just starting to get some meat on my bones! I really need/want to gain weight!! This isn’t gonna happen if I keep having weird bouts of renting food. I prefer to store permanently the food that I spend the energy to ingest, thanks.

My Stagnate Life, Continues On

I honestly can’t remember at this point how many infusions I’ve had. But then again, there’s no guarantee I can name what day it is today either.

I am starting to get sick of feeling like every step forward I trip six steps back. How do other people keep their heads above the water when their stressors are too much? I mean, my health has to equate to other people’s stressors in some way?

Turning Into a Reptile

Painful Chemo Rash. Won't stop peeling.

Painful Chemo Rash. Won’t stop peeling.

I think I’m finally metamorphisizing into a reptile. (yes I know I made up that word, but it totally works) I have a horrendously magnificent rash. My entire body itches and burns. My face is well beyond excruciating. If I don’t get some super awesome X-man power from this I am thinking that perhaps this wasn’t worth it! The rash is in my scalp, around my eyes, in my ears, even in the cracks between my toes! This photo shows the rash beginning to fade forming a peeling. Once it peels completely it hardens then peels again!

This rash is what lead to my treatment plan, including the doctor, changing completely.

My Brain’s a Goldfish In a Bowl

The goldfish swims around the bowl in circles. There’s an iHome on the desk the goldfish passes with every sweep. Wooh! iHome! *Goldfish is shocked* Swims around again passing the iHome; Wooh! iHome! *Goldfish is totally shocked by this new item in it’s view.

No matter what, by the time the goldfish gets around the bowl, it’s already forgotten about the iHome. This is my brain on Chemo.

Xmas With The In-Laws: His Father’s Side

Another post I started more than a month ago but could only now finish.

12/ 28/13

Being around the toddlers in our masks was an interesting experience for me.  Both BF and I had discussed dealing with the toddler nieces and nephews with our faces covered on our drive up. Little kids tend to be afraid of things they don’t understand or know. I wanted to make sure that they felt comfortable with us with the masks on. Initially I thought up the idea of taking the masks off like peekaboo, so that the little ones knew who was behind them. Of course, this can’t be done in the same room with the kids, because then I’m exposing myself to the germs that are airborn. What would be the point of wearing the masks to begin with otherwise? But his parents house allowed for the unique enough set up that we were able to carry out this idea.

When we came back after checking into the hotel we stood on the porch with the little children on the other side of the door watching us through the window being held by their mothers. We were able to take the mask off one ear uncovering faces, smile, and wave until they waved back. We then would recover our faces and dance and wiggle our hands in the air. Doing goofy movements to make them laugh, uncovering and recovering our faces throughout the process. This way they knew who was behind the mask and had a better understanding of what the mask actually was. We weren’t so worried about the older nephew. For one thing he had a much better understanding of my health to begin with. He has interacted with me on many different levels of healthy and sick. Once we explained it to him, our nephew wouldn’t have a problem with how weird we look with our faces covered.

Microtel-

Watching my BF sanitize every step we took while we were up north made for some great laughs. For one thing, even before chemo, he never let me carry my own bags. Now with chemo, there was no way I would be able to talk him out of being such a gentleman. I can still picture it, weeks later, walking down the hallway to our hotel room with barely anything in my arms. Watching him ahead of me, like a pack horse, laden down by practically every Vera Bradley pattern you can think of. (Okay that’s an exaggeration, I only like certain patterns, I’m pretty picky about which ones I buy honestly!) Still with a mask on, still with gloves on,  his hands full of Lysol spray in wipes, we trudged to our room. I felt practically hazmat ready. When he unlocked the door to our hotel room he made me wait outside, while inside madly sanitizing every surface he could touch.  I was impressed, this man is a natural caregiver, but to see him go so far above and beyond to make sure I could stay as healthy as possible during this trip was truly treat.  He really knows how to make me feel like nothing matters more to him. Our room was huge for a Microtel! We Had two queen-size beds in the room and the entire wall with the headboards was mirror. Now I’m not saying I’m vain, but I sure do like to watch myself in the mirror;)IMG_3988IMG_3989

We took a few  ridiculous pictures while we were in our room. but I’m glad to say we didn’t actually spend that much time in our room. I managed to preserve my energy accurately enough that I didn’t get drained as quickly as I’m used to. Granted BF and other family members were doing their best to watch over me and make sure I didn’t try to take on more than I had the energy to do. I spent a lot of time sitting, but I was never alone. I always had a number of other family members around me talking, listening, asking questions. The little nieces and nephews were adorable. Almost as though they thought the masks were part of a game, everything quickly became normal. The littler two ran around as usual, asking for help with puzzles, stacking Duplos and definitely more interested in the food on our appetizer plates than their own. I got air hugs from the sick family and we were told to be prepared for a family photo.

IMG_3987

Well, what an interesting adventure… Family photo for Grandma’s 90th. This completely makes sense. Except how do I do this with a mask? I can’t exactly be wearing a mask for them photo of grandma’s 90th birthday!  Okay, I can totally hold my breath for this, right? Right?!  to thing a weirdly put makeup on my entire face even though half of it was going to be covered…

I know it’s weird; I just think it feels even weirder to only put makeup on part of my face and I look pretty alluring.  haha though I didn’t have lipstick.

Visiting the In-Laws

Here’s a post that I started more than a month ago, but could only finish now.

12/27/13

So we found out Boxing day that everyone on BF’s mom’s side of the family is getting sick and getting sick fast. This was where we had planned to stay, but with my suppresed immune system that isn’t close to an option. So how do we still make it to Grandma’s 90th if we have nowhere to stay that night?

We had to work fast. His father’s house was an option, but a slim one. For one thing we didn’t know if anyone was sick there because we hadn’t needed to ask. This side of the family has a number of toddlers, which frequently means sniffles and coughs… at the very least. For another thing, they are already housing a number of family members for The Birthday. There was no telling if they had any rooms left that we could stay in! He is the youngest of 6 siblings… there wasn’t likely to be a room that wasn’t being used. Here’s hoping.

**Fingers crossed**

We also started looking up hotels that were half way between his mother’s place and his father & step-mother’s place–keeping in mind, of course, that we have a very slim budget. I mentally bookmarked quite a few hotels as options the night before we headed out the door.

Speaking with his father about the option of staying the night at their place, we got lucky. His father agreed that we needed to make sure the family members showing up weren’t sick first, but there was a bed on hold for us.  My poor Dear had to do all of the driving, not that he doesn’t usually do most of the driving, but it was difficult for me to realize that there was no option for him if he got tired of driving. However, there are some pluses to not having had a license until I was 26 years old: I learned to be a good navigator and copilot.  If you need someone to open up your water bottle, check the map for our next exit, change to a radio channel that isn’t playing Nickelback or unwrap your sandwich, I’m your woman! But put me behind the wheel and my ADHD is so busy concentrating on not getting distracted by anything on the road that a lot of the leisureliness of a road trip gets deleted.

When we got to BF’s parent’s house we put on our protective masks and headed for the door. We stood inside the glass porch to speak with his dad. Sure enough, a number of family members had sniffles and coughs.  His father was very worried about us staying in the germy environment and getting sick. We explained that we had looked up hotels before leaving, finding a number of reasonably priced hotels that we could stay in for a few days. Specifically, we had quite liked the idea of the Microtel in the area. I had stayed in Microtels growing up on family vacations when I was little and we were traveling on the road. They tend to be rather nice hotels the room itself is just smaller. but the things in it aren’t.  This helps make the hotel room cheaper than other hotels typically are. His father agreed to pay for a hotel room for two nights, this way we could stay for the duration of the family visit that we’d intended. This meant we had half of the time to spend with his father’s side and the other half to spend with his mother’s side, just as we had intended. Both BF and I were extremely touched by this show of concern and interest in my/our well-being.

Knowing how difficult it can be to accommodate me to begin with, everyone on both sides of the family really went out of their way to make sure I had the opportunity to feel included. They managed to make me feel like I was actually one of their children being accommodated rather than someone outside the family that they had to “deal with.” If I hadn’t already been sure at this point, that they were going to be amazing in-laws, this vacation certainly cemented the idea in my head.

A New Level Of Exhaustion

At this point, it feels like I have reached a strangely wired sense of total exhaustion. Beyond bone deep being a good description, it’s like my exhaustion is alway there on a debilitating level. Only I don’t notice it like white noise or fog that I’m fighting through until the fog turns into a wall and I crash.

When I say crash, I mean literally out of nowhere… ok, it’s possible I am semi-aware it’s happening at the time, but I don’t think I’m about to actually fall asleep right then and there! Usually I feel less aware than that. Often I don’t have very clear memories of whatever happened before I fell asleep. I assume that means I am fading in and out for a while then fall asleep, thus not remembering what lead up to sleeping.

This has allowed for some surprising, amusing, and confusing situations! I have fallen asleep eating dinner. I’m lucky I have some one with me when I eat meals, the idea of falling asleep with food in my mouth and choking scares me. Before you ask, yes, I have fallen asleep with food in my mouth (haha) leading to amusing situations where my BF has shaken me or talked to me to get me to finish chewing. Then he puts me to bed. He tends to make it funny. A defense mechanism he came with when me met, but it works magnificently with helping to keep me motivated through many situations where I would be perfectly happy to sit down and melt into a pile of goo on the floor for a few hours (Star Trek: Deep Space 9 reference anyone?).

BF says lately that I have full conversations with him in my sleep. He’ll have friends over and they’ll poke their head in the door of the bedroom to say hi. Apparently I talked to them, not always nicely. But when I wake up I have no recollection of them having been here at all, let alone speaking to them. I’ve reached an entirely new level of exhaustion, which brings me to an entirely new level of uselessness. I can’t ever seem to complete a task. It’s gotten to the point where I don’t even start a task anymore for risk of getting halfway finished and petering out. That can’t be healthy. I have to find a way to continue to accomplish things, or I really will start to feel useless…