wegeners

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

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.

 

Resolutions Smesolutions

I usually don’t make New Years resolutions. After all, I do well a few weeks, and then go right back to old habits, just like everyone else. I do want to make some changes though. I want to be healthy. This past year, my husband told me my job was to go to the doctor. We both want me to get healthy so we can live a better quality of life. So that is what I did. At times, I felt like I lived there. We tried new medications, eating healthier, mindfulness, and a lot of other things. I think that my attitude is what has helped me get through most of it. I try so hard to be optimistic. It was hard at times this past year to be optimistic. We had a few very rough blows. All in all, it was a good year though. I’ve learned a lot about myself. Going into 2016, I don’t think I will make any specific resolutions, but instead just chose to look forward, and be happy.

::::sound of record needle scratching::::

Okay, so that’s bullshit. I am sitting here wanting so hard to just make big changes. I want to work. I want to matter. I want to dance. I want to travel. I want to be healthy, and fit. I want a freakin’ Harley again. I know how to do this. I’ve done it all before, and from less than I have now. However, I freaking hurt. I am so damn irritated that I hurt. My entire body aches. There is no reason for it. Nothing is biting me, burning me, hitting me. For some stupid reason my body just wants to attack itself and hurt. Years ago (before I was diagnosed with all this crap, pre 2006) I had no pain. I was able to work hard and play harder. I was going to the gym, and living life to the fullest that I could. Now, here I am, almost 42 and I just attempted to unload the dishwasher, but it hurt so damn bad that I had to stop and rest. What the heck? Rest?! From unloading a dishwasher? That is ridiculous! I’m tired of pain. I’m tired of being limited. I’m tired of it all! I want to yell that from the roof tops! Don’t get me wrong. I’m happy with life. I love my family, friends, our home, and living. I just want to do it without pain. I want to make realistic goals. The sucky part is that taking a shower each day shouldn’t be a goal…or a struggle. I know I just need to “take it one day at a time”. However, that get’s old. I just want to be the me that I want to be.

 

 

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.

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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.

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.