fibro

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

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.

 

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.

Ramblings 

I hate just blogging about my illness.  I don’t mean to just bitch all the time. I am very happy and love life. I have great friends and family. I have lost several friends throughout this battle, but it’s their problem, not mine.  I have tons of other interests. I love photography, especially getting action shots. It’s a thrill for me. I love animals, traveling, and adventure. I miss my Harley. I miss my truck. I miss my horse.  I want to be that girl again. I love watching my kids grow, and experience life.  I thoroughly enjoy our cheer life, all the practices, competitions, and chances to take lots of action shots! I am aware of the world around me.  I’m aware of the good and the bad. I try to pay attention to the good though. I miss working.  I miss making lots of money and not stressing about it. I enjoy helping others. I like to bring awareness to things that are ignored. I don’t like bullying. I am pretty relaxed and layer back. I love to laugh.  

This illness has tried to take all of that. It’s stolle not my focus, but it’s so huge that it’s hard not to. So dear readers, I don’t mean to write sold about my illness, and how shitty I feel.  It just has seeped into every aspect of my life, despite how hard I’ve tried to not let it. Hence, Chronically Susan…. I’m Susan, and boy oh boy is my life chronic now.  

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.