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. 🤞🏻

Just catching up

I’ve had a rough time finding time to blog lately. I apologize! I have just been so busy being busy. When I’m not busy, I’m exhausted. I feel that I should just do a quick update of this past week. Hopefully I can find time to blog about something more interesting this week too!

Last week I was dealing with severe dizziness and brain zaps. I still am this week, although the brain zaps aren’t as bad. On Friday I went in for vestibular testing, which was four hours of hearing type tests. The worst was when they put hot air into my ear and recorded my eyes reacting to the severe dizziness it caused. Then they did this with cold air, on each ear. It was horrible. On Monday I went to the doctor to get the results. He said that my hearing is find. Everything came back normal. This means the dizziness, headaches, and such are not caused by my ears. The next step is an MRI on Thursday, and following up with a Neurologist. In the mean time, I’m dealing with a UTI, which of course has them concerned since I just had an infusion, and it can cause Kidney’s to fail. I am going in tomorrow to make sure it’s just a run of the mill UTI, like I think it is, vs some dramatic issue they think it could be. I know it’s better to be safe than sorry, I just get tired of going to the doctor!

One thing I’d like to celebrate is that I didn’t get whatever it was Kenna had on Tuesday of last week. She was so sick. I was terrified I’d get it on Friday or Saturday and I had made commitments I couldn’t back out on. Luckily, I still haven’t gotten sick! Yep, knocking on wood.

Friday after my appointment, Kenna went to the fair with a friend. Travis and I took the time to drive around Forest Grove and look at the house we put an offer in on.

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Travis, Kenna, & I at the wedding.

Saturday we went to a wedding. It was a beautiful, fun, country wedding. I took the photos for them. It was so much fun! It was hot, but honestly, I was distracted with taking all the pictures, that the head didn’t bug me a bit. I took pictures from noonish until 9pm. I was hurting, but it was totally worth it. I really enjoy taking pictures. I had a few moments that were rough, but mostly because my camera decided to stop focusing, so I had to auto focus each picture! I did fairly well, and took 988 photos! What a fun time!!!!

Sunday we decided to go to the beach and meet our dear friends who were there for a dance competition. It was kind of cold so we didn’t stay long. It was fun though. We ate at Mo’s in Cannon Beach, then sat on the beach for about an hour. We stopped for ice cream on the way home. It was fun and low-key.

Today everything has caught up to me. However, I didn’t have a moment to rest. Well, I did sleep in a bit, but I got ready and Kenna and I ran errands. This blog is super boring I know. I promise it’ll get better. I just needed to get this all out and decompress from my busy week.

Oh, and before I forget, let me update you on my cousin. She is doing much better. She’s had 7 surgery’s this past week. They finally were able to pack and suture her leg. I stopped in and saw her yesterday while I was there to get my hearing test results. I loved getting to see her looking so much better! I’d stopped in on Friday before my testing, and she was in surgery. Thank you all for your continued prayers. Please if you can, go to her gofundme.com site: http://www.gofundme.com/8z6ena2x6e and donate.

Learning to be Flexable During a Flare. 

I had great expectations for today. I was going to write a fantastic blog, and run a bunch of errands. I suppose I should be happy I accomplished getting out the door this morning. McKenna and I filled up the gas tank, picked up her charger from one of her besties houses, and even went to “the office” for an hour. I did get the pictures of the car wash we had for !mpact up on facebook, but that’s where my day fell apart. 

Even though I haven’t had chemo for seven months, it’s still in my body doing it’s job. Add in the prednisone, gabapentin, and other meds, and it’s a wonder I can function at all. Today, I couldn’t remember my passwords. I couldn’t login to my blog. After fourth minutes of anguish, I realized it wasn’t my password, it was the login I had wrong. Ugh!

 We only had a limited time today, because McKenna is going on a picnic with some new friends that are house sitting nearby. The plan was to drop her off and run my errands, but as most of you living with a chronic illness know, you have to be flexable. My brain feels like it’s detached. I’m achy all over. I felt like I shouldn’t even be driving with my unfocused mind.  So now, I’m in bed, sweats on, bra off, and writing this un-epic blig post. I wish I had more energy and could do everything I used to do, but for now I’ll rest. 

The Price of Eating Clean

It’s one of those damned if you do, damned if you don’t things. Around the first of May I began to eat Paleo. I’m sticking to it fairly well, making very little exceptions. My intentions were to eat clean and try to get rid of as much inflammation as possible, the 15 lbs. weightloss has just been a bonus. 

I’ve been a yo-yo dieter my entire adult life. This time has been different though. Instead of looking at it as a diet, it’s a lifestyle change. Also, I don’t feel like I’m depriving myself of anything. I’m not counting calories, I’m looking at labels. I’m aware of what I’m eating, and where it comes from. It’s been super easy for me. I don’t miss my old life style at all. I think the main difference this time is that when I eat, I think about how the good is going to make me feel. I know processed food makes me lethargic. Usually, at about the two week mark of a diet, I justify cheating on it. “Oh, I’ve been so good. This bread won’t matter.”  Then, I’m back to my old ways. This time, I don’t want to feel crappy, so I just don’t eat bread. I’ve cut out dairy, grains, and most carbs. 

My taster has changes as well. I never liked dark chocolate before, and now I find it delightful. I eat a lot of veggies and fruits now too. 

I also always thought eating clean would be very expensive. It’s not. I’m finding we spending less on food. 

So back to my damned if I do, damned if I don’t; I am in love with spinach salads all of a sudden. I actually look forward to eating them. My problem is that I think they cause horrible gas. My poor tummy. Just when I find myself eating right and feeling better, I dealing with this embarrassing side effect! Oh well, I can always blame it on the dog.  

A New Way of Living 

Yesterday, my youngest, McKenna and I drove two hours east to The Dalles, my hometown. Almost all of my family still live there, plus the majority of my close friends. It was great to go back and visit. We originally went there to sell raffle tickets and event tickets to my daughters all star cheer fundraisers. The plan was to get there around 11am, and leave around 6pm. We ended up not leaving until well after 9pm. I was, and still am exhausted. I couldn’t just stay the night, because all of my meds were at home. In order to drive, I couldn’t take my pain pill.  It was a tough few hours towards the end, but we managed. 

You see,  I’ve had to learn to listen to my body. Even though I like to ignore that I’m sick, I have to strategize my plans around my illness. I had planned ahead for yesterday’s trip. I knew I had to rest the day before. Sometimes, for bigger events, I have to rest up for a few days to prepare. Then, depending on how the event goes, and what it is, I have to plan a few days, and even on some occations, weeks to recoup. It sucks, it sucks bad. 

Luckily, yesterday I just drove in to town, dropped my dog at the Pink Poodle to get groomed, and stopped at my my bothers house and visited a while. Then we went to my moms for dinner,  and then my daughters to visi. It was pretty low key. I had only gotten three hours of sleep the night before, (I was still pissed about the comments made to me on Tuesday about if I’d just be more active my disease wouldn’t be so bad. I had a rough time letting this go. I deal with so much guilt already, I don’t need other people making me feel like crap too. Plus I was excited to see my family and friends.) so I was very tired by late afternoon. Once we got home last night, I was still wound up, and in pain. I didn’t fall asleep until about 2am this morning, but I had the luxury of sleeping in until 10 am this morning. I am still hurting today, but we made it to the library (aka my new office). McKenna is diligently working on her math, and I am blogging. 

Due to this disease, I do try to plan my weeks with just one or two events. When we have big events, like our recent trip to Anahiem for All Star Cheer Nationals and Disneyland, I rested up for a week, and then crashed for a few weeks after we returned. The same thing happend at a Christmas. Now that I know this, I plan for it.  I just get so tired and fatigued after a big event. I really push myself to be as normal as possible. I want to keep up with everyone. I don’t want to hold anyone back because I have to take it slow. This new way of living has been an adjustment for our entire family, but we are learning to make it work.  

One of the best  things that I have found helpful to help others understand is The Spoon Theory. If you haven’t heard if it, I highly suggest googling it and reading the story. It really resonates with people suffering from all kinds of illnesses. 

I would love to hear from other people how they handle plans and big events. Please leave your ideas in the comments. 

Projection…

A few doctors appointments ago, it was brought to my attention that I tend to project my feelings onto others. Since then, I’ve been blown away at how of often I do this, and for how long I’ve been doing it. Just to get us all on the same page, projection is a self- defense mechanism characteristerised by a person unconsciously attributing their own issues oneto someone as a form of denial. I ve always thought I was prettybuntune with my thoughts and view of myself. I was wrong. 

I know that the projection started around the time I got sick. For one thing, I feel crappy that I don’t feel good enough to do things, but I also feel judged because I can’t do what I used to do. I am sure there are those that are judging me, but I know that these aren’t my actual friends. My friends and family know me well enough to know that I do my best, to be my best. They know who I was before I got sick, and how bad I want to be that person again. (And how aware I am, that being that person again is almost impossible, but I can do my best to get close.)

I suppose my advice to myself is to let the haters hate, who cares about them. I need to love myself and as long as I’m doing that, things will be alright. I just need to remind myself to do that daily, and I need to forgive myself. Now, that’s a who other topic! 

Here it goes…

First off, I feel like I should have some sort of music of anticipation playing as I write this. Instead, I’m sitting here quietly in the library. How the the heck did we get here? Another lifetime ago, I’d never see myself sitting in a library to use their wifi. I’ve always been a hard working, active person. In fact, when I was single, men used to tell me I was to intimidating to date. I had my own successful real estate business, my own house, a new Dodge Ram, a new Chevy Aveo for my daughter, and a Harley Davidson. I had three kids that were very independent. We traveled all the time, and had a lot of fun. I didn’t really need a man, but I was lonely. I wish I knew then, what I know now. I’d not have been in such a rush to find someone and leave my happy lifestyle. However, I was in a rush. I was lonely. I joined eharmoney.com, match.com, and any other .com’s I could. I went on a few dates, but kept talking to this one guy in Idaho. He was a christian, and I liked that. We dated a short while before deciding we wanted to live together. However, he didn’t want to live in sin. I was on board, so we got married. This was a huge mistake for both of us. Just after the first few weeks I knew it was a bad thing, but I’d given my house and business up.  I couldn’t go back.  For the next three years, we lived a very boring, sad life. Unfortunately, my kids did too. I lost all my things, my bike, my truck, my daughters car, and my self esteem. I finally a had enough and decided to end the marriage.  

After I moved out, I met someone, my husband now.  He has saved my life. Literally, and figuratively. Travis and I met after he finished going to Northwest Lineman school in Meridian, Idaho. He was working with a company that had him traveling a lot, and so we only saw each other once a month or so.  I’d never believed in love at first sight, but that is what it was with us. Just within the first week we knew each other, we both knew we were meant to be. Both of our marriages had recently ended, and so the timing was right for us to start our new life together.  He got a job that transferred him to Texas. He moved down in January of 2012, and I followed, along with two of my kids in March. We lived in West Texas for the next two years. It had it’s ups and downs.  We were only able to see his son once during that time, which was very tough on both Travis and his son. I was diagnosed with a rare, serious autoimmune disease called Wegener’s Granulomatosis.  I had to undergo surgeries, and chemotherapy. My mom, and my oldest daughter had to come stay with us a few times to help out. It finally was very clear that we needed to move back to the Pacific Northwest to be closer to our families. 

Even though Travis was making a good income in Texas, the cost of living was taking it all. I was working for Aflac, and doing very well, for as sick as I was. When Travis got the opportunity to move to Idaho, we jumped at it.  It took all of our savings to move back. His new job was not what it was said to be, which is what we’ve found to be true with most jobs in the Lineman field. We were back to square one, and a bit scared. Within a few weeks, my super-husband had a found his new career path, in his old career field as glazier and installing automatic doors.  We made plans to move again, from Idaho to Oregon. 

I’m so glad we did. Although things are bit different than we’d planned, we are finally on the right track. I have a great team of doctors at OHSU. To save money, we bought a new RV to live in. One of my best friends let us park it at her place, and we did that for nine months. When she moved, we moved it to Travis’ best friends place, and are currently there. We are waiting to buy a fixer-upper this summer. This will be our new fresh start. Once again we will have a home of our own. Eventually, will have our dream cars/trucks/toys again. We will rebuild our lives together. I try to think of it like an adventure. It may not seem glamorous, but it will interesting.