wegeners

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. 

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.  

Brain Fog

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I’ve attempted to write this at least a dozen times this week. It all comes out jumbled. I have so much to say, and so many topics to touch on.  It’s hard when dealing with brain fog. I lose words. I can’t remember what I’m talking about if sentence. I hate it. I don’t like feeling dumb. I know that people understand, but still it’s very difficult for me. I am doing my best to remember this is just temporary. I need to rest, let the chemo work, and be positive. Why can’t I rest on a beach with a Mai Tai? 

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. 

The Day After Chemo

I always forget that the day after chemo always kicks my butt. Yesterday I had an eight hour infusion of Rituxin. It’s not as harsh as some chemos, as it doesn’t take my hair. However, it’s still pumping poison into my body. My immune system is still jeaorodized (on purpose, since mine seems to want to kill me), and I run risks like kidney failure and getting a few different types of cancer.  Yet, with all those risky possible side effects, it’s still better for me to have the chemo to keep the Wegener’s at bay.  This was my third round of chemo infusions.  I hate to really call this a round as it was just one, and possibly two infusions but still it is what it is. 

 The first found was in May/June of 2013. I was living in Odessa Texas, and all our family lived in Oregon. My daughter and grenade daughter flew down to help out, and then my mom came for four weeks after that. Travis was busy working, and my trachea was still recouping from the first dilation. We couldn’t find an infusion center near us that we trusted. Since this is a rare disease, not many doctors know what they are doing. My Otolaryngologist wanted me to get the infusion ASAP so I’d live. The only Rheumatologist that could get me in right away was a jackass. At first we thought Dr Khandawal was brilliant. He spent four hours with me during my first appointment, and was very thorough. However, we came to find that he was a bit full of himself.  He had no idea what Wegener’s was. I begged him to talk to my other doctors, but he wouldn’t. He did call the Mayo clinic to learn a bit about Wegener’s, and when he finally agreed to having me take the infusions, he had no idea how to give them. I am someone who likes to research everything. I Had read up on Wegener’s, rituxan, and other meds that treat it. I joined groups on Facebook with other people that have Wegener’s. I talked to them about what worked, what didn’t, and what to expect. I was blown away when Dr. Khandawals nurse called to schedule my appointment and told me that my infusion would just take twenty minutes. Um, the first infusion takes at least 7-8 hours! If they’d have pumped that into me in 20 minutes, I’d have been dead. I instantly fired him.  I called my Otolaryngologist in Dallas in tears. His nurse was amazing. She got me into see a Rheumatologist a tUniversity of Texas Southwestern that week. He scheduled my infusion, and for the next four weeks, we drove six hours to Dallas each Wednesday, I had a my infusion all day Thursdady, and then we drove back six hours on Friday.  UTSW was great. They had individual rooms for infusions. It was peaceful. We even got a hotel across the street at the Holiday Inn, with medical rates. They were so good to us. 

After my infusions, I didn’t see my Rheumatologist until August. He ran a blood panel and decided to treat me with Imuran, a pill form of chemo.ni stayed on this for the next year. During this year, we moved back to Idaho, and then Oregon. Getting set up with doctors is a nightmare for me. I have all my medical. Records from the past four years I a three ring binder that I take to my appointments. This was so vital before we settled in at oregon Health and Science University. It is so nice to have all my doctors at one big hospital, and they all communicate so  well.  Prior to getting set up with me new team, going to the doctor gave me a horrible anxiety attack. Wegener’s is pretty rare, or more so are rely diagnosed that so many doctors don’t know what it is.  They may have heard of it on House or in medical school, but that is it. Every time I’d have to go to the ER, I’d have to tell them what to do. I’d have to spell out my disease, and sound it out slowly. Gran-you-low-ma-tosis. When I first got to OHSU, I was told that I shouldn’t live further than 30 minutes from their ER because Wegener’s is so serious and deadly that being to far, or going to a small ER can be life or death. 

From March to August of 2014, I was in medical limbo. I didn’t have a doctor in Oregon. This was so scary for me. Luckily my doctors in Texas had given me enough refills, but I was having more breathing issues and needed to be seen. I finally got in with my favorite doctor and she facilitated getting me in with my current team. She is amazing and so helpful. She referred me to my new Rheumatolgist, and Otolaryngologist  and so many others.  My Rheymy decided that the Imuran wasn’t working and so she scheduledmore infusions. In November of 2914, I have four more weeks of infusions. It was nice to be closer to home. It’s a room with six chairs and although it’s notprivate, you meet some neat people. The nurses are great, which is the most important to me.  From now on I will have one or two infusions every six months to keep Wegener’s at bay. I don’t mind it really. I can handle all the poking and prodding, but the emotional aspect can take a toll. 

I freak out a few days before because I start thinking about pumping prison into my body. I know that since I’ve had it before, the chances of a instant bad reaction is not likely. Thank God.  However, I know it can cause lymophomas, and kidney failure.  I’m just not ready to die.  I always have a reaction during the infusion, so they have to stop it, flush it, give me Benadryl in the IV, then restart it slowly and work up to a higher dose.  This last time we decided to take it slow since we knew I’d have a reaction.  It was especially nice this time around because it’s summer, and I didn’t have to rush home to get Kenna. She stayed with ours ear friends from our cheer family for the day (I love our cheer family!) I knew she was fine, so I agreed to not push it.  The reactions consist of sever back and abdominal cramping, heartburn, headache, nausea, and a scratchy throat. The back pain, and a headache last for days.  The back pain is like no other. It feels like someone is hitting my bones with a chisel and  hammer. I wake myself up whimpering in the night with pain. 

So today I had my chemo hangover.  I stayed in bed all day. I didn’t even turn the tv on because it was just to much noise. Since I was pumped full of fluids yesterday, I did have to get up to pee a ton, but other than that, I just laid there.  I’m always reminding myself to not be so hard on myself because I feel guilty laying in bed all day. The day after chemo is one day I really give myself a break.  Today Kenna had cheer, so I did get up, get showered, and got her and another cheerleader to cheer. I’m sitting at the library writing this. It’s cool, and quiet. However, my back is killing me.  I’m going to go get my prescriptions, all nine of them, and pick up something easy for dinner. After all, life must go on.  

Thank you for taking the time to read this. I don’t do it for pity. I want to educate people. It also is nice to get this all off my chest. Like I said before, it’s better than therapy!

Chemo Infusion Day

Today is chemo day. Such fun, okay maybe not. The nurses are great. Although I don’t understand why a nurse that starts IVs all day long, everyday would have to poke me three times? In fact, both nurses have poked everyone multiple times today. Luckily, they are super cool, so it’s no biggy. I just can’t put my head around it! 

It was a busy Fourth of July weekend. We drove to Seaside, Oregon on Friday and Saturday to play on the beach. We had Travis’ son here for the weekend, so we made sure to stay busy. The kids had a blast skim boarding and boogie boarding with Travis. I got so sunburned on my shoulders, knees, and shins! We bought a half tent like enclosure at Costco Friday night, so I hung out in it most of Saturday. The beach was packed with people. It was around 100 degrees in the city, so everyone flocked to the coast. Apparently, so many flocked there that the substation caught on fire and knocked power out from Cannon Beach clear up to Astoria. We weren’t aware of it until we went into town to eat. Every place was closed down or selling what was on hand for cash. It was a madhouse. A quick Shoutout to the Seaside Police Dept for doing all they could to make things pleasant.  We decided to drive back home, go to dinner, and then watch the fireworks in North Plains.  It was perfect. Not to busy, and very community oriented. Plus, we were just minutes from home after the show! On Sunday we took Jakob over the mountain to meet up with his mom.  I hope we get to see him again soon. It’d been since Christmas break since we’ve seen him. I’m hoping that changes, as Travis misses him so very much. We love having him here. 

I like to write my blog Mondays through Fridays, but after such a busy weekend, I was spent. I rested most all of Monday. Then on Tuesday I had a million things to catch up on, yes, a million! Adding in the stress factor of having chemo today made last night extremely tense. I don’t know why I stress out so much? OHSU is a great place. Their doctors and nurses rock.  The chemo I’m on can cause a reaction, and of course, I’m one who gets the reaction every time. It starts with pain in my lower back, and then my throat feels funny. I posted my tracheal pics on twitter and Facebook last night, so any if you that saw that know how small my airway is to begin with. Having a reaction sucks. The only thing to do us give me solumedrol (benedryl via IV) and slow the drip down. This infusion will take me anywhere from 6-8 hours. Again, this sucks. However, to quote my doctors “The benefits outweigh the reaction.”

The infusion room is pretty quiet, aside from the sounds of the IVs pumping. There are a total of six infusion chairs in here. So far, no one I s a talker, which is good. However, the wifi isn’t working, and it’s getting boring rather quickly. I may need to start a :::gulp::: conversation. It it bums me out mostly because I was looking forward to catching up on my shows via Hulu and Netflix. I guess that was not meant to be? 

Last night I laid in bed going over the list in my head of what to bring today. I always feel like I’m moving in when I have an infusion.  I brought water, snacks (they only have crackers and applesauce, so I brought better food: blueberries, blackberries, a banana, a plum, grapes, and some grilled chicken left over from last night). It totally cracks me up that I’ve been watching everything I eat, trying to eat clean as possible, but here I am pumping my body full of poisonous chemo! Oh well, “The benefits outweigh the side effects.” Haha

I don’t know that this blog post will resonate with anyone else, but it’s nice to get all this off my chest.  Blogging…the new therapy. I also like bringing awareness to Wegener’s, since it’s such a rare disease. I’m going to post my tracheal pic at the end, because I just know how you all want to see it. Gross! I just think it pits things in perspective for those who don’t understand that this is a very real, very terrible illness.  

   

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!