spoonie problems

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. 🤞🏻

The Good Doctors

I had a doctor’s appointment today. I love seeing my Internal Medicine doctor because she truly cares, and wants to help. Not that the others don’t, but she really seems to care, She has made it her mission to get to know me and understand what I am going through. As most people with any type of illness can tell you, finding a doctor like this is very rare. I have been lucky to have three of these doctors in my lifetime. One of them was pre-diagnosis, back in the early to mid-2000s. She actually moved from my hometown of The Dalles to a town about two hours away. I remained her patient and drove to see her each appointment. Luckily, she moved back to my hometown and I continued to see her until I moved away. Then I had a slew of doctors that just were prescription happy, and misdiagnosed most of my illnesses. At my worst, I didn’t have insurance, and was at the end of my rope with all the symptoms from an undiagnosed Wegener’s Granulomatosis. I just happened to pick a doctor that my new insurance covered, and was near my home. She was the doctor that referred me to the doctor that referred me to the doctor that diagnosed me. She helped manage my medicines from a local standpoint, since I had to go six hours to my specialist. She is a doctor I miss. However, my current doctor is one smart lady. She is the doctor that facilitates my medicines, my referrals, and really tries to help. I don’t feel like I’m just a patient. It’s nice. It also allows me to speak my mind and be at ease, which is so helpful when you face anxiety like I do.

 

Right now, I am dealing with a lot of pain and fatigue. We are trying to figure ways to manage it, without just adding more medications blindly. This is going to be a process, and require several referrals. I feel a bit overwhelmed because it feels like I am back at square one with Fibromyalgia. However, with Wegener’s being in a remission of sorts, that is a huge worry off of my plate. I am anxious to get in with the specialist. As usual, they didn’t have appointments right away. So now I need to find a way to cope with things how they are until I can get in to see them. My initial feeling is to just do what should be natural…eat well, get enough sleep, and exercise. Simple enough. However, when you are in so much pain and extremely fatigued all of that is nearly impossible. I think I cause myself extra grief by stressing myself out about I “should be” doing this and that. It’s very aggravating.

 

I know this blog didn’t help many, but it helped me to just write. J

The Cycle

It seems to be a never ending cycle. The pain is intense. You can’t sleep. However, it’s the lack of sleep that contributes to the pain, and the pain that contributes to the lack of sleep. It’s awful. The doctors can prescribe medicine. They try to help (most try to help) with suggestions on how to deal with the pain, and insomnia. You may find something that works for a while, but eventually, it seems to stop and you are back at square one.

I am back at square one right now. I want to be healthy. I want to live a normal life. When I’m awake at night, I brainstorm of how I will get healthy. I want to switch to a plant-based diet. I want to exercise. I want to not take medications. I want to work. I want to live like I used to live before I got sick, even better than I did. Then morning comes, and I can’t hardly get out of bed. When I finally do get out of bed, my energy level is almost nonexistent. It’s a terrible way to live. I try to make small steps towards my goal. The pain is overwhelming though.

Some days, I push through. I hurt like hell, but I know others are counting on me. This is usually on the weekends when my husband and kids are home. I don’t want them to suffer because I feel like hell. They understand, and know I can’t do everything they want to do, which sucks. I want to do everything they want to do.

I spend a lot of time stretching. It helps. I spend a lot of time in prayer. It helps too. Then, I cry. Sometimes I don’t even know I’m doing it until I hear the sounds of agony, and realize it’s me.

I have realized a few things that do cause my pain to be more intense…stress…lack of sleep…weather changes…STRESS (that’s a big one, and deemed being repeated). Trying to avoid those are all impossible. Again, it’s the cycle. I’m feeling pretty frustrated and defeated. I know this is common among those with chronic illnesses. I just wish the cycle could end.

 

It’s Good To Be Home!

So happy to call this home. It's very peaceful and happy!

So happy to call this home. It’s very peaceful! 

We are finally moved in to our new home! We actually moved in two weeks ago, but we aren’t quite settled in yet. This past two months took a big toll on us. We purchased our home, Kenna started a new school and a new cheer season, and I’ve been super sick, on top of being super sick. It’s definitely been a lot to deal with, but we are all very  excited about what the future holds.

We decided that although living in the RV served it’s purpose in the beginning, it just wasn’t working any longer. It’d been over a year and we just wanted to have our own home again. We are so very thankful to our friends who’ve let us stay on their property this 15 months! Words honestly can’t express our appreciation! This allowed us to fix our credit, and took the pressure off of the medical costs. You are truly all angles.

We found an amazing Realtor, Amanda Purvis at The Broker Network. She helped us to find our home. We fell in love at first sight with it. I highly recommend her to anyone in the Portland Metro area! She was there for us every step of the way! Plus, she’s become a great friend!

Our lending team is AMAZING! Honestly, we couldn’t have closed without their very hard and diligent work. One thing that really stood out to me (I was a realtor for 10+ years, and worked with a lot of different lenders), is that they really cared. They knew our situation. They understood what we were going through and made it their business to make sure our home loan closed. They really went over an beyond. It was a tough one to close, we had a lot going against us because of our time in Texas. Due to how the power line companies are in the oilfield, you work at a lot of companies. It doesn’t look that great to an underwriter. Anyway, they really really worked hard on this one, and if you are in need of a home loan, or refi, I HIGHLY recommend Sean Killingsworth and his team at LoanStar Mortgage.

Also, my family has been extremely helpful. They have all been so supportive throughout this entire process. I just can’t even begin to tell you all they’ve done. We are truly blessed, and amazed by their generosity and love. It seemed like anytime an issue arose with our home, they were there to help us through it.

She is a Sevie!

She is a Sevie!

So now that I’ve caught you up on that, I’ll explain a bit how things went down. We were supposed to close at the end of August, but no matter what we or the lender did, we just couldn’t make it happen. I decided that we were all very positive it would close in time, so we started McKenna at the school where our home was located. School started at the end of August, and we didn’t move in until September 16th. We were so conflicted on where to send her. I am glad we made the right decision. She really loves her school. She’s doing well, and enjoying it a lot. Cheer is an all year sport for us, but our new fall schedule started in September, and we are adjusting well. The coolest thing is that we are a part of a wonderful cheer family. Last night, one of the girls gave Kenna a ride home. I really feel like we are in a great home, and wonderful community of friends and family here.

We packed two storage units into this 26' U Haul. It was quite the experience. We made a lot of memories though!

We packed two storage units into this 26′ U Haul. It was quite the experience. We made a lot of memories though!

Once the lender confirmed we were set to close, we headed out to Idaho to get our things from storage. Travis, Kenna, and along with a few hours help from Blake’s friend Tyler, loaded both storage units into the U Haul on a Saturday, and then came back on Sunday. It was exhausting, hot, and we all over did it, but it is done. Everything we own is now in one place! Unfortunately, we only want about half of it. We have all been sharing a wonderful cold since then (I think it started with all the dust from the storage units). We have unpacked for the most part but are allowing ourselves to take it slow so that we can organize as we go. It’s been interesting and a tad overwhelming to see all of our old things.

If all the other things weren’t enough. I had a bit of an emotional breakdown mid month in August. I am not ready to talk about it yet, and honestly still don’t know how to fix it. I was in a dark place for a bit, and I’m glad to have made it out alive. I appreciate all the help from family and friends through this. I pray it will be okay in time.

Well, that really sums it all up I guess. I hope to be able to post more regularly and help spread awareness for those with Chronic Illness. Adding everything we’ve gone through while dealing with my pain and fatigue, and airway inflammation has been quite overwhelming. I’m glad to be home.