Missing Her

One of the hard parts of now working 40 hours a week is missing my dog Sweetie. I've had her since she was a 3 month old puppy. She's around 12 now. I saw her sweet face at the animal shelter. She was so small and curled in a ball in a giant cage. I just knew I had to save her and make her feel loved, safe and warm the rest of her life.

She has been my constant companion, especially when my chronic illnesses struck. If I'm in bed, she's in bed with me. When I'm up, she's right there. When I'm in the shower, she's in the bathroom waiting for me. My husband has a dog too and they do get along very well, but I'm her Mama. It's just always been that way.

I do what I can to make her cozy before I leave in the mornings. She jumps up on the couch on her fluffy pillow and I cover her with blankets. If she seems cold I tuck a hot water bottle right next to her. But then I'm gone for 11 hours. I miss her terribly and I know she misses me.

One of my favorite parts of the day is coming home, sitting on the couch with her tucked between myself and my husband and snuggling her. Yes, I'm the kind of person who kisses her dog. No tongue, but I can't help it! I hope you have your own rescue comfort animal too. I can't imagine my life without her.

What's New?

It must be December because suddenly I'm super busy. Trying to juggle my RA symptoms, viruses that keep sneaking up on me, still recovering from brain surgery and testing my ongoing muscle weakness issues. Oh yeah... AND I just started working full time. This past week I moved up for 30 hours to 40. But I'm happy to report that it went really great!

I found this pinecone on a walk around my office complex. 

Isn't nature amazing?

I love my job and feel blessed to be able to do what I do. This week went very fast and didn't feel like that much of a shift. Of course it helps when you have a supportive partner like I do. He did all the shopping, cooking and cleaning up this week. All I had to do was come home, eat and sleep. I'm always grateful for his support.

I've also been sleeping world's better recently. Much deeper with longer REM stages. I think the brain tumor was screwing with my sleep and I didn't even know it. And a good night's sleep can help like no other medicine.

Aside from all the love, support and great sleep I'm trying to be careful with my eating. My husband and I encourage each other to get protein in the morning. I also pack a lunch to eat healthy even at work. I never forget the snacks! My favorite is a hard boiled egg. It keeps me feeling full and gives me energy.

I did a little art project the other day using paper plates. One side is the "Me" that everyone sees. Happy, healthy, smiling. The other side is the "Me" that is much harder to spot and only my husband really sees. That's chronic illness, pain, sickness, exhaustion, sadness, frustration and all my symptoms.

I showed it to my husband and he said it made him sad. I understand. It's hard having two sides with you all of the time. Every time someone tells me "YOU LOOK SO GREAT! YOU LOOK SO HEALTHY!" I actually flinch. Because I know that they're only seeing what I present and none of the struggle and suffering. It's not all of me. Not even the most important part. It's just the mask I put on every day. Do you ever wish people could see what your chronic illness really looks like? The toll it really takes on your health, both physically and mentally? I know I do.

Out and About with Ariel

Ok. THAT was an exhausting weekend, but incredibly fun. Almost enough to distract me from the fact that tomorrow is the roller coaster into my first 4 day, 40 hour work week in over 26 years. I'm a bit terrified. And lest we forget I'm also only 8 weeks out from  major brain surgery for a tumor. 

"Ariel" (my new folding, light weight, electric wheelchair) performed really well. Compared to "Dory"  she has a response delay to her controls and is a lot smaller (but that makes sense to cut the weight.) She has a lot of power and even managed to go over some wet grass today. I'm thrilled to have her and couldn't have done anything I did without her help. She's already becoming an extension of me. 

But isn't a picture worth a thousand words? My smile should tell you how happy I felt with my new independence and "assisted stamina." 

Pictures from a Christmas Light event in our town last night.

I went about 3 miles around town in her today. 

Homeostasis - The New "Normal"

The first two days at my new job went great. My employer saw me use my rollator "Meg" and gently asked if I "Had an accident, or if this is a long term need." I disclosed that I have an autoimmune disease and right now it's a tool that I need. He followed up by asking if there's any accommodations or modifications that I would need to better to do my job. I told him not that I knew of, but I'd let him know if something comes up. 

Fortunately my job is very "cerebral" and sedentary. So I honestly don't think my muscle weakness, muscle fatigue and joint pain will be an issue. And I meant it when I said I'd let him know if that changes. Speaking up for myself is a new skill that I've quickly mastered. 

Thumbs up and ready for work!

I have a large, beautiful office that is very comfortable as well as a full support staff to help me in my work. So far there are a few things I need to work around. Like my chair will need more back support, but I can bring pillows in to fix that. Luckily Meg fits in and out of my office and the doors are pretty easy to open. 

My new office

My job also required much less typing and paperwork than I had expected. My hands are pretty excited about that. The hours still concern me, but I love what I do and that helps. For now my schedule is Monday and Tuesday from 8AM to 6:30PM. A long day, but I can do it. Long term that will turn into Monday through Thursday the same hours. MUCH longer week, but again, I'm feeling confident.

I'm hoping that my new rheumatologist can come up with something that helps my muscle fatigue and weakness. I didn't use Meg once I was settled in at work and instead walked the long hall to my office and back. I won't do that again.

The Lyrica and Cymbalta are both proving to be hugely helpful. The Cymbalta definitely helped to stabilize my mood and both are helping with the neuropathy and back pain. I'm so grateful to finally be on something that's giving me some relief!

New Phase

Starting Monday I'll be entering a new phase of my life. "WORKING WOMAN!" I've been in school for the last 10 years preparing for my chosen career. Monday is my first day at my new job and also the first time in about 24 years that I'll be working full time. Thankfully they're starting me off part time at just two 10 hour days a week. But 10 hours is a very loooooong time. I love what I do and I'm sure the time will fly by. But I'm also very worried about my body being able to play "keep up" with my mind. 

Along with starting a new job I'm also still adjusting to my new medications. I'm currently taking 50mg of Lyrica twice a day. I'm on day four of Cymbalta and take 25mg at night before bed. My doctor added the Cymbalta after I talked to him about feeling so stressed out all the time. Now I have a good reason for feeling emotional right now, but I also welcome a bit of a break. I need to focus on my new job and adjust to life a bit without bursting into tears daily. He thinks the Cymbalta will help. AND it also happens to be good for nerve pain and RA pain, so that's a win-win in my book.

So far my biggest side effects have been feeling dizzy, feeling a bit foggy headed and not being very hungry. That last one is a bonus for me as I'm trying to lose weight anyway. The first two suck, especially for driving. Luckily for me my husband has been driving us since my pain and muscle weakness got so bad. But that's yet another thing to add to his already full plate.

I met with my new Rheumatologist two days ago. He's ordered more tests, but said he had some ideas. I'll go back in two weeks. More waiting, more testing... but I do feel like things are progressing and I'm getting more help. Also that the medications I'm currently on are really working to fight back both joint pain AND neuropathy. I'm so thankful to FINALLY be on something that helps!

August will bring with it a new phase in my life. That of working hard (and actually getting PAID!), hopefully some health answers and also treatment that helps. No more struggling to just help myself or "waiting." Waiting for my career to start, waiting for medication that works, waiting for a specialist to see me. Instead it's a time for "doing" and that excites me!

I'm Tired

I'M TIRED!!!

Not just as in "I need a nap" (but I think that I do.) I'm tired of all of it. I'm tired of looking up my symptoms online trying frantically to find some kind of answer for what's happening and why. "Progressive neuropathy, hand weakness, post INH treatment" is a common one. I look up peer reviewed journals, personal blogs, National Health Institute information. And trust me, I'm no hypochondriac. Quite the opposite. I "fake well" all the time. 

I do these things because knowing the name of your enemy is important. Why do you think names were always such a big magical deal in the stories we heard as children? If you know the name of your enemy, what it's after, what the plan is, then you can form your own plan and attack. To have no idea what it is that's happening to you, what's attacking you, is like fighting against mist. You just end up tired. 

Although I'm trying everything I can think of to help myself I'm still fighting against mist. I keep hoping for that one article or study that will suddenly bring it all into focus. But more and more I have to ask myself what I'm going to do if that doesn't happen?

I recently started a new job. It's a career that I've worked very hard for and it feels amazing to finally be here, earning money doing what I love. I'm lucky to be in a situation where I had the opportunity and means to figure out what my passion was and then chase that dream till it was mine. But I'm also a bit scared.

I'm scared that my body won't be "on board" with me working 40 hours a week. That I'll be too exhausted for anything other than work every day. That my weekends will be 100% recovery time. I'm worried "the mist" will try and take over what I love to do. 

I'm fortunate that I have a very flexible job and I'm in charge of my own schedule. That gives me a lot of options not open to many people in similar situations. But that fear in the back of my mind says "What if it just keeps getting worse? What if I just keep on declining and there's no magic 'thing' that puts me back together again?" 

My husband is fantastic (as I already shared) and doesn't hesitate to pick up the slack. He's also wonderful at reminding me of all the tools at my disposal. Like "speech to text" on my iPad if typing gets too hard. Or that I can just go to bed after work if I need to. We meal plan and shop together. I love to garden (when I can) and he's taken over almost all of the weeding duties for me. So it's very helpful having him to remind me of my options, hold my "paw" and tell me what a big brave fighter I am and that I can do anything I put my mind to. Even working 40 hours a week. Even (hopefully) finding some answers soon.

And now I wait for my new neurologist to call me to schedule an appointment and the results of my hand MRI. Waiting also makes me tired.