wegenersgranulomatosis

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 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.

 

Living In The Now

The other day while we were driving to OHSU, the song 7 Years Old, by Lukas Graham  came on the radio. I was trying to distract myself from the upcoming bronchioscope, so I focused on this song. It really resonated with me. For those who aren’t familiar with the song, I’ve included the lyrics at the end of this blog, and the video. It basically talks different stages of life. It starts out with 7 yrs, 11 yrs, 20 yrs, 30 yrs, and finally 60 years old. This made me think about my life.

I had a pretty good childhood. I’d say that 7 years old and 11 were pretty awesome. My teens were trying, but good overall. Typical 20’s and loved my 30’s. I was diagnosed in my late 30’s though. I tend to look back a lot to the times before my diagnosis a lot. I miss those years. Things were easier. I was able to work, and do so many things without such harsh consequences (pain, fatigue, pure exhaustion). In fact, I’d say 2006 to early 2008 were probably my where some of my best memories came from. I co-owned our Real Estate company, which was doing amazing with the economy the way it was. I had all the cool stuff I wanted (Harley, dream truck, house, etc). The kids and I were able to travel a lot. We did a ton of road trips and camping. It was so much fun! I miss it so much. The only thing I wish I could change about that time in our lives, is that my husband Travis had been a part of it.

Although I’ve forgiven people, even myself for things in my past. As much as I try to let go, I always wish I could be the person I was then, now. Well, it’s unfortunately not going to happen, at least not to that extent. I keep having surreal moments where I realize I’m in my 40’s. Where did the time go? I swear I was just turning 30, or even 20! How the heck do I have kids in their 20’s already? They were just babies I swear!!!!

This song hit me pretty hard.I realize that although I can enjoy my memories from the past. I need to focus on now, and the future. I don’t want to be turning 60, and wondering where my 40’s and 50’s went. I need to live in the now. Even if it’s rough. I need to be the best me I can for my family, and live life. I know I still will have days (even several) where I’m not able to do much more than lay in bed, but I need to be a part of life. I can’t look back. I don’t want to regret the next 10 years, year, or even day. I need to make my life matter, illness and all.

7 Years Old

7 Years Old Lyrics, by Lukas Graham: 

Once I was seven years old, my mama told me,
“Go make yourself some friends or you’ll be lonely.”
Once I was seven years old

It was a big big world, but we thought we were bigger
Pushing each other to the limits, we were learning quicker
By eleven smoking herb and drinking burning liquor
Never rich so we were out to make that steady figure

Once I was eleven years old. My daddy told me,
“Go get yourself a wife or you’ll be lonely.”
Once I was eleven years old

I always had that dream like my daddy before me
So I started writing songs, I started writing stories
Something about that glory,
Just always seemed to bore me
‘Cause only those I really love will ever really know me

Once I was twenty years old.
My story got told
Before the morning sun, when life was lonely
Once I was twenty years old

I only see my goals, I don’t believe in failure
‘Cause I know the smallest voices. They can make it major
I got my boys with me at least those in favor
And if we don’t meet before I leave, I hope I’ll see you later

Once I was twenty years old.
My story got told
I was writing about everything I saw before me
Once I was twenty years old

Soon we’ll be thirty years old,
Our songs have been sold
We’ve traveled around the world and we’re still roaming
Soon we’ll be thirty years old

I’m still learning about life
My woman brought children for me
So I can sing them all my songs
And I can tell them stories
Most of my boys are with me
Some are still out seeking glory
And some I had to leave behind
My brother I’m still sorry

Soon I’ll be sixty years old, my daddy got sixty-one
Remember life and then your life becomes a better one
I made a man so happy when I wrote a letter once
I hope my children come and visit once or twice a month

Soon I’ll be sixty years old,
Will I think the world is cold
Or will I have a lot of children who can warm me?
Soon I’ll be sixty years old

Once I was seven years old, my mama told me,
“Go make yourself some friends or you’ll be lonely.”
Once I was seven years old

Once I was seven years old

 

 

Perfect

Yesterday, I was driving to OHSU for what feels like the millionth time for one of my doctor’s appointment. I’ve been dealing with a lot of things lately. I’ve been flaring for such a long time. It’s a daily struggle sometimes to just breathe. I keep trying so hard to keep pushing myself to get well. I’m so hard on myself and I stress myself out because I feel so bad for not being able to live the life I once lived. I’ve tried to let go and adapt to my new lifestyle, but it really is tough. I used to be so fun. I used to be spontaneous. Once, my kids told me we were in a rut when I got home from work on a Thursday night. I gave them fifteen minutes to pack a bag and get in the truck, and we drove for 10 hours straight through to Reno for the weekend (I checked the weather and it was the closest place to us with SUNSHINE that weekend). I used to be able to get on my Harley, and just ride the day away. Oh such freedom. Now, I don’t have my Harley, I lost it along with everything else. I’d love to think I will get one again some time, but in all honesty, with my disease, I won’t be able to ride one on my own again. I don’t have the strength, and my vision, and dizziness will just not allow it. I used to wake up and walk two miles at the track in my hometown each morning before work. Then, my daughter and I would meet my cousins at the gym and work out at night. I used to reward myself with tanning afterwards, but due to meds I can’t even do that (which I know it’s not healthy, but boy does it feel good to be tan and look healthy). In fact, I looked at myself in the mirror yesterday, and was stunned. I’ve gained so much weight with Prednisone, and since my troubles in August, I’ve gained even more. I need to eat healthy, but I’m to exhausted to cook, so we just keep easy to eat foods, which are so bad! My hair is now coming in white. I want to color it, but my arms hurt too bad to do that right now. In fact, just pulling a blanket up onto myself is so painful. Twice this week I was in bed all day, and had to wait for my daughter to get home from school because I was in so much pain it hurt to go downstairs and get food. It’s a horrible feeling. I do have days that I feel like, what is the point of this life now? However, I instantly know that my husband, children, and granddaughter are the reasons I continue to go on. I’m so blessed to have them.

So yesterday, as I was driving (I don’t drive very often at all anymore) to OHSU, all of these thoughts were going through my head, as they do constantly. On the radio, Pink’s song Perfect came on. The lyrics hit me hard.

“You’re so mean when you talk about yourself, you were wrong. Change the voices, in your head. Make them like you instead. So complicated. Look how we all make it. Filled with so much hatred, such a tired game.”

It really resonated with me. Instantly, I wanted to go back to the way things were. I wanted to like myself again. I had a bit of hope. I wanted to go do normal things. I want SO BAD to go do normal things! Then, just like every other person with a chronic illness, I remembered my limitations. I can’t go do those things because my body is riddled with pain and fatigue. I’m nauseous and dizzy all the time. I get winded just walking up the stairs, slowly….sideways because I my hips and knees hurt to much to walk one foot at a time. I get winded just walking into my doctors offices, to the bathroom, or anywhere. Even if I started slowly, and walked a block, and then next week added two blocks, and so on until I was walking those two miles again, it’s not going to happen. Not because I’m not motivated, but because I have such a stupid small airway, and the pain cripples me. I make plans to start new little exercises every week. Most nights I get a burst of hope for a few and I get excited and think YES I will go for that small walk tomorrow. Then I end up waking up to my new reality, and I’m lucky to shower that day. It’s such an evil cycle. I’m not trying to be down, it’s just how it has been. I am going to go see an physical therapist soon. I am always going to keep trying to be the best me I can be. However, I am going to try to not be so hard on myself. I need to like myself again, even if it is as a sick person. I need to celebrate the little achievements and not be so mean to myself. I’d NEVER talk the way I do to myself to a friend or even a stranger!

So here is to celebrating those little things…even if it’s as simple as I put on sweats and moved from the bed to the couch and FINALLY wrote an entry in my blog for the first time since January! Cheers!

PS…I’d really like to thank my family for helping me so much. Especially these past few months. It’s been extra rough. My husband has been so patient and understanding, and helpful. My 13 yr old daughter is amazingly helpful. My mother comes to help me. Also my son has paid for us to have a wonderful lady come and clean the house each week. One of our cheer mom’s has graciously given my daughter a ride to cheer every Monday and Wednesday for months now. We have the best family, friends and cheer family. You are all appreciated! It also meant the world to me that for the Superbowl, our friends had us over. I felt so miserable that day, but Travis got me up and ready, and over to their couch. Thank you ALL for being so understanding and helpful!!! So much love for you all.

 

Achoo!

It’s rare to find a good team of doctors that work together. I’ve finally found a good team at Oregon Health & Science University. It took several years , but I finally have doctors that understand Wegeners. 

Just one of the many downsides to having a chronic illness is when you get a cold or the flu. It’s like a double whammy. The doctors you see for your chronic illness aren’t likely going to fit you in  just because of a sore throat and back pain. This always stresses me out. I am super lucky that all my doctors are at OHSU. they all have access to each others chart notes. Usually, if I’m sick and they schedule me with an on call doctor, but I just decline. What’s the point? They do odd tests and give meds that conflict with my other meds. I’m always told I have allergies, but it’s actually a Wegener’s flare. I usually suggest my treatment and they are happy to ablidge. 

The past week or do, we’ve been passing a nasty cold around. Travis had it, then Kenna, and then I got it. I also had pain from a UTI, the pain became too much, so I opted to get in with an on call doctor. 

He ran several tests. At first he’d said all was fine. A half hour later he called and said that he thought we should do antibiotics just on case.  Now, nearly a week later the results are back, and I’m so glad he have me those antibiotics because I have a kidney infection. This isn’t good with having Wegener’s. I was able to get a shot and start even more antibiotics man do hope it’s under control. On Monday, I’ll go and follow up with my doctor. I believe they are planning an ultrasound to make sure my kidneys are okay. 

My hearing tests came back good,so now we wait for the MRI and appointment with a neurologist. I’ve been saying for months that something is just not right with my brain. I feel very off. Luckily those darn accents have disappeared. Lol

I’m lucky to have the doctors at OHSU. Before we found them, my care was subpar. The doctors weren’t connected and things that needed to be done, weren’t. Don’t get me wrong. I had a few amazing doctors, they just didn’t communicate with each other. 

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.

????????????????????????????????????

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.

Family

It’s been a tough week. I’ve been dealing with dizziness, fatigue, pain, and brain fog a lot. Spent last Friday at the doctors trying to figure it out. They’ve scheduled me for an MRI and some vertigo tests this Friday. Then we should know something, I hope. We had a good weekend. Yesterday, Kenna was sick with a 102.4 temp, and spent the day throwing up. She if feeling fine today. I really hope I don’t get it. It was awful.

All that being said, what I want this blog to focus on is family. We do for family. I’m lucky to be in such a wonderful family that is close and helpful to each other. We like to see each other succeed. We don’t bicker and try to do better than someone else. I have always been very proud to be a part of my family.

This week, family has been a big theme. My parents have both come through for me in the past, and are coming through for me again. We are working on a big endeavor, and they are backing us all the way. So very thankful for them.

My cousin, who is going to be 20 on Friday was life flighted to OHSU on Saturday. She has a severe infection that is destroying the tissue in her leg. Our family is surrounded around her, supporting her and praying. Her little beautiful baby girl is just over a month old.

This made me reflect on when I was first going through Chemo in Texas. My daughter and granddaughter flew down to be with me for three weeks, and then my mother flew down and spent another four weeks with us. The next year I had back surgery, and my daughter and granddaughter flew down again and stayed another four weeks. While my mom was with us, my aunt and uncle helped take care of my grandma, and do the things my mom had been doing. I just love how family is there for you when you are in need.

On the flip side, I love being there for family. Granted, I’m a little more limited than I used to be, I am happy to help any one of my family members in need. I’ve helped with kids, places to stay, and more throughout my life. I hope to be in a position to help out again!

For now, I can pray and send positive thoughts, and a supportive shoulder to those who need me.

I hope this blog makes sense…they do have me on some other meds now and I’m a tad foggy.

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. 

My Inner Battle 

Warning. This is a very raw post. 
I feel like crap. I have been in bed since my last blog post, two days ago. I am so achy and lethargic. I finally forced myself to get up and shower, then sorted laundry. I think we have like five loads or so. I got super shaky and had to sit down. Then I got very nauseous. It sucks. However, the mental part is the worst. I’m beating myself up for not being there for everyone. I am angry that I have no energy. I feel like everyone is judging me and thinks I’m pathetic, yet I know that most everyone understands. It’s the battle inside my own head that hurts me the most. 

I hate all that this disease has stolen from me. I refuse to let it, but I know that I need to rest in order to let the meds do their work. My doctors suggesting I be admitted if I don’t stay down. I just do NOT want to be that pathetic sick girl people feel sorry for. 

It’s my inner battle that’s killing me.