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.

 

 

Chronic Christmas List

Catching Up:

It’s been a long month. We celebrated my grandmother’s life at her memorial. It was a wonderful day full of family and love. It was a bummer that the paper didn’t get her obituary printed in time, so many that wanted to be at the funeral weren’t aware of it. I know that she was loved.  Thanksgiving was another wonderful celebration with family.

Cousins2

My brothers, mom, aunt, and cousins & I, at our grandmothers memorial.

Then we kicked off the cheer season with a showcase at the gym (all in the same weekend). The following two weekends we had cheer comps as well. I love cheer comp season. It’s just fun. I love taking pictures of all our teams performing. There is just something about catching that perfect action shot! I am a bit rusty from last season, and I’ve been flaring for about a month, so I’ve had to push myself extra hard to keep up.

These are some of the most amazing athletes!

All Star Cheerleaders are some of the most amazing athletes!

Today for example, I’m having severe lower back pain. I suspect I know why, so I’m just taking it easy on the couch and staying hydrated while awaiting a new prescription to kick in. Since I’m down for the day I thought I’d share with you all a list of great gift ideas for those with chronic pain & illness. Ya!

::::Insert Christmas music interlude here::::

Here are my top twelve suggestions for great gifts for those with chronic pain!

  1. Warm fluffy slippers and socks. The softer the better. Make it fun too. No need to be drab just because you feel like crap!
  2. Two years ago, I bought myself a cute pink zebra print cover for my heating pad. I love it and still use it every day! I got mine from Ebay, but I bet they’d be super easy to make for those who are crafty.
  3. This is somewhat obvious , but a comfy soft blanket is definitely in my top five. I have several, and promise there is never enough! I used them to prop my neck up, roll up behind my back, and of course to stay snuggly warm. I even love having a heated throw during the holidays.
  4. Due to the pain I have in my hands, I can’t ever get that pesky wine bottle open. An electric wine bottle opener is a necessity for sure! (I just read that a glass of red wine a day is like working out an hour at the gym. Really, I did!)
  5. The past two years, my husband insisted I bought some Sorel boots. I’m in love with them, almost as much as I am in love with him…almost. I love how warm and comfy they are. Plus, I feel VERY solid in them. I don’t worry about slipping and falling when I wear them. I’ll be honest, I’m kinda glad we’ve been getting so much rain so I can wear them without looking silly. I hope they make some cute flip flops for the summer! It’s the first time in years that I haven’t felt like I could fall at any moment. Plus, they are trendy!
  6. For those who can still get in and out of a bath without too much trouble, a gift basket of bath goodies would be perfect. Don’t forget the bath pillow! We have a wonderful soaker tub in our home now. Yet, I’ve only taken one bath in it since we moved in because it hurts to lay back in it. I used to have a bath pillow and that is on the top of my list this year. Be sure to include bubbles and candles. It feels good to be spoiled every now and then.
  7. A makeover. Anything from makeup, hair, nails, clothes…including pajamas. Just because we feel like crap doesn’t mean we don’t want to be pretty. I try to do my makeup and hair every day so that I feel good about myself. My husband bought my daughter and I a subscription to Ipsy last Christmas. We get a makeup bag with five makeup samples (some are regular sized, and they are good brands too). We love it! It gives us something to look forward to each month, and we can play with looks we’d never had tried otherwise. It’s only $10 a month too! So nice!
  8. A journal. I deal with a lot of emotions from meds, guilt, and just being human. I think writing down how you feel can be a great relief. Just get it out and be done with it. I know writing can be hard for some with chronic pain. I use this blog to get my “stuff” out there. Writing just hurts too much.
  9. A fun coffee mug or tea cup. Yeah, it’s nothing huge, it’s just the simple things in life. I have two coffee mugs that I absolutely love. They just make me happy.
  10. A hug, a listening ear, or a smile. Just having someone understand is so amazing. No need to give advice or anything just being there helps.
  11. I swear by this. I buy two roll-ons from Ebay each month. I practically bathe in it. My husband calls it my signature sent. So sexy. haha
  12. A cure. Santa? Jesus? Anyone? Please.

Well, that concludes my 2015 Chronic Christmas List. I hope it’s helpful to someone. I know that I have benefited from each thing so much over the years. Remember, be the best you that you can be. Don’t over do it though. You are you, and that is good enough! 🙂 (that’s my sue-ism’ for the week)

 

Attitude Is Everything.

This past week heaven received a very special angel. My grandmother passed away. She, along with my grandfather left an amazing legacy. I could quite possibly write you a book with all of the amazing stories they had to tell, along with stories others could share about them. However, since this is just a blog, I am just going to share a few personal ways that they touched my life.

My grandparents lived up the hill from me while I was growing up. My parents both worked, so I spent most of my time after school at their house. I remember things like watching Perry Mason with my grandpa during the noon hour on their little black and white TV in the kitchen. My grandpa had built their home, and had made a custom table for the kitchen area. It had a bench seat, and the table, although attached to the wall, moved in and out. I have fond memories of eating at “Faye’s Greasy Spoon Restaurant”. She always made sure we had some sort of flavored soda, cereal, and ice cream. When I was about 10 years old, she went through brain surgery. I remember being so worried about her. Her hair had fallen out (or shaved?) and so she had a lot of wigs. My cousin and I would put those wigs on and her silky nightgowns (circa 1980 something) and parade around the living room. Years later, when they sold that house, my cousin and I would hide the for sale sign from their front window, because we didn’t want them to sell it. I even tried to buy the home as an adult, but my house didn’t sell in time.

My grandparents were born before the depression. They married young, and neither had much of an education. However, they were determined to be successful. My grandpa worked construction. He’d get books from the library and read up on what he was supposed to be doing the next day. Eventually, they purchased property and built a home. They’d live in the garage of the home, and then sell it. They did this several times. One of my favorite things to do is drive around my hometown and look at the homes my grandpa built. My grandmother started selling carpet using carpet samples, and very very small store front. Eventually they started Downey Carpets & Furniture in The Dalles Oregon. The stores (two city blocks) are still there, and my aunt and uncle own them now. I spent a lot of my childhood playing in furniture, and carpet rolls! Awe the memories! I loved it!

They were snowbirds. They had a place in Lake Havasu City Az. I have a lot of memories of visiting them there. They had condos, rentals, and eventually built a second home there. I loved going to visit them. We’d go to the London Bridge. My grandma would drive us around, and introduce us to her friends. We’d always get to go swimming, which was my favorite.

My grandpa passed away several years ago. My grandmother lived at a retirement community in our hometown. They have two daughters, six grandchildren, thirteen great-grandchildren, and five great-great-grandchildren. We are all fairly close too. I’ve always loved that about my family. I know if I needed someone they’d be there for me, and I them. My grandmother has always been the glue for our family. She knew everyone, even very distant relatives. I remember if I had a friend over, she’d know their family history by the time they left. She asked a lot of questions, she wanted to know everyone’s story. She was a sharp lady for sure.

I felt very close to her. In fact, we had a lot in common. I’ve said for years that I had more in common with her than with people my own age. She suffered from arthritis, and several other health issues. I think she went undiagnosed on a few too. In fact, the more I learn about her doctor, the more unimpressed I am. I really wish I’d have been around more the past few years and paid more attention to her pain level. She hated taking pills. I know the feeling. However, I just couldn’t imagine life in pain without them. Of course I’ve always known that she would pass on (as we all do) but I knew it was going to be particularly hard on me when she did. I was very close to her, especially as a child. As an adult, we’d talk as often as we could, although the pain she had and the pills I’m on did make it difficult at times. I am relieved she isn’t in pain anymore. I know she’s in heaven rejoicing with my grandpa, and her family and friends.

I think one of the most important lessons she ever taught us is that attitude is everything. All throughout my life, she’s told me this. It seemed to cover almost everything, from telling me to make my bed and help my mother, to being brave while being a single mother.

My grandparents will always live on in each of their grandchildren…for generations to come.

Attitude Is Everything.

 

It’s Good To Be Home!

So happy to call this home. It's very peaceful and happy!

So happy to call this home. It’s very peaceful! 

We are finally moved in to our new home! We actually moved in two weeks ago, but we aren’t quite settled in yet. This past two months took a big toll on us. We purchased our home, Kenna started a new school and a new cheer season, and I’ve been super sick, on top of being super sick. It’s definitely been a lot to deal with, but we are all very  excited about what the future holds.

We decided that although living in the RV served it’s purpose in the beginning, it just wasn’t working any longer. It’d been over a year and we just wanted to have our own home again. We are so very thankful to our friends who’ve let us stay on their property this 15 months! Words honestly can’t express our appreciation! This allowed us to fix our credit, and took the pressure off of the medical costs. You are truly all angles.

We found an amazing Realtor, Amanda Purvis at The Broker Network. She helped us to find our home. We fell in love at first sight with it. I highly recommend her to anyone in the Portland Metro area! She was there for us every step of the way! Plus, she’s become a great friend!

Our lending team is AMAZING! Honestly, we couldn’t have closed without their very hard and diligent work. One thing that really stood out to me (I was a realtor for 10+ years, and worked with a lot of different lenders), is that they really cared. They knew our situation. They understood what we were going through and made it their business to make sure our home loan closed. They really went over an beyond. It was a tough one to close, we had a lot going against us because of our time in Texas. Due to how the power line companies are in the oilfield, you work at a lot of companies. It doesn’t look that great to an underwriter. Anyway, they really really worked hard on this one, and if you are in need of a home loan, or refi, I HIGHLY recommend Sean Killingsworth and his team at LoanStar Mortgage.

Also, my family has been extremely helpful. They have all been so supportive throughout this entire process. I just can’t even begin to tell you all they’ve done. We are truly blessed, and amazed by their generosity and love. It seemed like anytime an issue arose with our home, they were there to help us through it.

She is a Sevie!

She is a Sevie!

So now that I’ve caught you up on that, I’ll explain a bit how things went down. We were supposed to close at the end of August, but no matter what we or the lender did, we just couldn’t make it happen. I decided that we were all very positive it would close in time, so we started McKenna at the school where our home was located. School started at the end of August, and we didn’t move in until September 16th. We were so conflicted on where to send her. I am glad we made the right decision. She really loves her school. She’s doing well, and enjoying it a lot. Cheer is an all year sport for us, but our new fall schedule started in September, and we are adjusting well. The coolest thing is that we are a part of a wonderful cheer family. Last night, one of the girls gave Kenna a ride home. I really feel like we are in a great home, and wonderful community of friends and family here.

We packed two storage units into this 26' U Haul. It was quite the experience. We made a lot of memories though!

We packed two storage units into this 26′ U Haul. It was quite the experience. We made a lot of memories though!

Once the lender confirmed we were set to close, we headed out to Idaho to get our things from storage. Travis, Kenna, and along with a few hours help from Blake’s friend Tyler, loaded both storage units into the U Haul on a Saturday, and then came back on Sunday. It was exhausting, hot, and we all over did it, but it is done. Everything we own is now in one place! Unfortunately, we only want about half of it. We have all been sharing a wonderful cold since then (I think it started with all the dust from the storage units). We have unpacked for the most part but are allowing ourselves to take it slow so that we can organize as we go. It’s been interesting and a tad overwhelming to see all of our old things.

If all the other things weren’t enough. I had a bit of an emotional breakdown mid month in August. I am not ready to talk about it yet, and honestly still don’t know how to fix it. I was in a dark place for a bit, and I’m glad to have made it out alive. I appreciate all the help from family and friends through this. I pray it will be okay in time.

Well, that really sums it all up I guess. I hope to be able to post more regularly and help spread awareness for those with Chronic Illness. Adding everything we’ve gone through while dealing with my pain and fatigue, and airway inflammation has been quite overwhelming. I’m glad to be home.

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. 

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

  •   

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?