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Blogging just got easier…

I feel awful that I don’t blog as much as I would like. I always say “I’m back!” and then I’m gone for months! A lot of it is due to my illness. I spend a lot of time in bed, or asleep. Sadly, that’s how I have learned to cope with my pain. I have been focusing on getting out of that cycle as much as possible. In fact, the past two weeks, I have made it a point to at least go downstairs for a few hours. Most of the days, I’ve even left the house. I am trying to get some crafts going, and a few projects done. My youngest is back in cheerleading, and that means I’m back to taking photos again. This is HUGE for me. I feel like I have a purpose again, and this helps get me moving. I’m so excited about it!

My husband surprised me with a laptop for Christmas. I hadn’t even attempted to set it up until a few weeks ago. I just wanted one that I could write with, and edit photos on. He got me a nice one, but it has the tablet function, and it really confused me. I used to be pretty good on a computer. With smart phones and iPads, I haven’t really had to login to my old laptop in over two years! I like my new laptop, but it doesn’t have the same photo editing software my old computer had. I am getting used to it though. I really want to take a photoshop class, but I don’t know if my brain fog will allow it? I just don’t function like I used to. It can be very frustrating. That’s why I think it took me so long to set this laptop up. I just would get frustrated so quick. Anyway, now that I have it, I hope that I’m able to blog more regularly. No promises.

Including a few photos I have taken so far this season. I love going to the high school football games. I love that the cheerleaders and their families love the photos I take.

 

It’s Okay To Not Be Okay.

Sometimes it’s okay to not be okay. I’ve had a rough time lately. I’ve had a lot of pain, and a cold. It’s sometimes hard to tell where one ends and the other begins. I won’t go into it, but it’s sucks. Not only do the symptoms suck, but the emotional baggage that goes along with it does too.

I feel like I’m wasting my life because I hurt so bad. I used to push myself harder, but it seemed to make it worse. I need to get out of this cycle and live again. I’ve been sad a lot lately. This has become a lonely life. I have amazing friends and family. I just don’t feel well enough to get out. I want to. I make plans. I just hurt so bad I want to die (not literally). I miss have having something to do (work, cheer). I need to find something to do.

I am trying to wean down on my pain meds. I’m doing pretty good at it.

I know this post is pretty sad and depressing. I honestly needed to just vent. I’m just tired of being sick and tired. I want to be the old me again, or better yet a new and improved me. I did buy a day planner. I used one when I worked and it really helped me to reach my goals. My phone is easy to just ignore. So I’ll see if this day planner will help me to get out of bed, write more, and maybe even eat healthier and exercise?! 🤞🏻

I must overcome this.

Well, I’ll leave you with this quote from Theodore Roosevelt:

“Courage is not having the strength to go on; Its going on when you don’t have the strength”

Hello, yet again…

I seem to have made a habit out of posting “I’m back” blogs, when I’ve obviously not been back. As many of you with chronic illness know, some days are harder than others. I’ve been experiencing a lot of bad days over the past several months. I’ve started to blog several times since my last post, but each time it doesn’t seem to make sense, or I ramble on and on (and on). I have a lot to catch everyone up on.

My health took a dangerous turn. Thankfully, my husbands job (amazing insurance and hotel/air points) allowed me to seek a second opinion with my original doctors in Texas. They saved my life once again. Since then (October), I’ve had three bronchial dilations, and two chemo infusions. I am honestly quite emotional about how it all went down, so I’ll blog about the specifics later. For now, I just wanted to get a post out there. My intention is to blog more, and finish my book. I love writing. It’s a wonderful outlet for me since my diagnosis. I feel like I’ve lost so much of my life to these diseases. I want to push myself to live life to the fullest with every essence of my being, but then the pain becomes my reality. It just sucks. Anyway, I hope to post more often, and way more uplifting blogs. 🤞🏻

I feel strange, don’t ya know? 

So I feel like I should start this post like this: Patients log 6156880, today things are worse than they’ve been in a while. 

All joking aside, something is wrong. Neurologically I’m messed up. I don’t know of it has anything to so with Wegener’s Granulomatosis or not? I’m dizzier than ever. I slur words. He’ll, I’ve even picked up a Northern accent. Not even being silly. I’ll be talking and all of a sudden someone from Wisconsin comes out of my mouth. It’s happened slowly over the past year. We always laugh, but now it’s really scaring me.  

As I write this, my arms and hands are twitching. As if I have gotten a chill, but it’s constant. I don’t know why? I’ve asked the doctors and they suspect WG, but unless it’s attacking my brain, I haven’t heard of it presenting that way. Most of my symptoms resembles MS, but the doctors say that isn’t it. 

In any case, I’m scared. I feel crazy and alone. Even though I know I’m not alone, I’m the only one experiencing these things my body is doing and without answers.  It’s very frustrating. 

Chemo Infusion Day

Today is chemo day. Such fun, okay maybe not. The nurses are great. Although I don’t understand why a nurse that starts IVs all day long, everyday would have to poke me three times? In fact, both nurses have poked everyone multiple times today. Luckily, they are super cool, so it’s no biggy. I just can’t put my head around it! 

It was a busy Fourth of July weekend. We drove to Seaside, Oregon on Friday and Saturday to play on the beach. We had Travis’ son here for the weekend, so we made sure to stay busy. The kids had a blast skim boarding and boogie boarding with Travis. I got so sunburned on my shoulders, knees, and shins! We bought a half tent like enclosure at Costco Friday night, so I hung out in it most of Saturday. The beach was packed with people. It was around 100 degrees in the city, so everyone flocked to the coast. Apparently, so many flocked there that the substation caught on fire and knocked power out from Cannon Beach clear up to Astoria. We weren’t aware of it until we went into town to eat. Every place was closed down or selling what was on hand for cash. It was a madhouse. A quick Shoutout to the Seaside Police Dept for doing all they could to make things pleasant.  We decided to drive back home, go to dinner, and then watch the fireworks in North Plains.  It was perfect. Not to busy, and very community oriented. Plus, we were just minutes from home after the show! On Sunday we took Jakob over the mountain to meet up with his mom.  I hope we get to see him again soon. It’d been since Christmas break since we’ve seen him. I’m hoping that changes, as Travis misses him so very much. We love having him here. 

I like to write my blog Mondays through Fridays, but after such a busy weekend, I was spent. I rested most all of Monday. Then on Tuesday I had a million things to catch up on, yes, a million! Adding in the stress factor of having chemo today made last night extremely tense. I don’t know why I stress out so much? OHSU is a great place. Their doctors and nurses rock.  The chemo I’m on can cause a reaction, and of course, I’m one who gets the reaction every time. It starts with pain in my lower back, and then my throat feels funny. I posted my tracheal pics on twitter and Facebook last night, so any if you that saw that know how small my airway is to begin with. Having a reaction sucks. The only thing to do us give me solumedrol (benedryl via IV) and slow the drip down. This infusion will take me anywhere from 6-8 hours. Again, this sucks. However, to quote my doctors “The benefits outweigh the reaction.”

The infusion room is pretty quiet, aside from the sounds of the IVs pumping. There are a total of six infusion chairs in here. So far, no one I s a talker, which is good. However, the wifi isn’t working, and it’s getting boring rather quickly. I may need to start a :::gulp::: conversation. It it bums me out mostly because I was looking forward to catching up on my shows via Hulu and Netflix. I guess that was not meant to be? 

Last night I laid in bed going over the list in my head of what to bring today. I always feel like I’m moving in when I have an infusion.  I brought water, snacks (they only have crackers and applesauce, so I brought better food: blueberries, blackberries, a banana, a plum, grapes, and some grilled chicken left over from last night). It totally cracks me up that I’ve been watching everything I eat, trying to eat clean as possible, but here I am pumping my body full of poisonous chemo! Oh well, “The benefits outweigh the side effects.” Haha

I don’t know that this blog post will resonate with anyone else, but it’s nice to get all this off my chest.  Blogging…the new therapy. I also like bringing awareness to Wegener’s, since it’s such a rare disease. I’m going to post my tracheal pic at the end, because I just know how you all want to see it. Gross! I just think it pits things in perspective for those who don’t understand that this is a very real, very terrible illness.