Intense Week

Help Me Jesus!

That's what my Nana used to always say when she'd get stressed. Well, this week was for sure a "Help Me Jesus" kind of week. 

1. It was my first week working 30 hours. Monday, Tuesday and Wednesday all 10 hour days. I DID IT! I survived. Although I slept for about 15 hours yesterday to recover. But that's ok. Point is I did it.
2. I cleared my foot MRI. Now we know there's no sign of RA damage in my hands or feet. YAY!
3. I went through 2 MRI's in one week. Today's was a brain MRI. I didn't mind though because I'm seriously ready for some answers about this muscle weakness. I hope to get some soon. (Because I'm a sucker like that and always hopeful.)
4. I have an appointment with the wheelchair sales rep. Apparently they come to your house, measure you and tell you all about your chair options. This is a whole confusing new world that I have many emotions about. Sadness, grief, excitement, happiness, relief. It's a giant emotional stew.
5. I'm in love with my new medical case manager. She's seriously the best. Like a medical fairy godmother. Now while I'm at work she's following up on things for me and cracking skulls, making things happen and forcing them to happen faster. Thank goodness!
6. My son quit his job of 5 years. That was a bit shocking and worrying. 
7. I had a epiphany to let things go that I can't control (see number 6.)
8. My muscle strength and muscle fatigue got a little worse this week.
9. I learned my job is taking everyone to Hawaii in January.
10. I went back to church.

To celebrate my 8th MRI I had my husband take this picture of me with the statue at our medical center that has become a home away from home. It was more of a joke as it was Saturday and no one was around. Again, humor is everything!

Even though I'll be getting a chair soon, I'm sure I'll still use Meg most of the time. What would I do without her? She's my BFF.

I did learn however that I can't get that beautiful turquoise "Fold and Go" chair that I had my eye on. My insurance doesn't contract with them. But I'm confident that whatever I get will be what was meant to be (and I'm sure I'll think of the perfect name when I see her.) And if I hate the color I read about some people taking their chairs into auto painters who paint it for them. Hmmmm...

Planning for the work week is KEY! This is my go-to lunch. Some gluten free seed heavy crackers, low fat Italian salami, grapes and boiled egg. My work also has snack cheese available for us to munch on, so that's a welcome addition. 

This week I was craving rice krispy treats. My husband made me some that used chocolate krispies. YUM! I enjoyed them all week. See!

Here I was enjoying it while doing paperwork. It tasted like love and kept me going through the day. 

This week I also modified my office a bit for safety. Like taping this throw rug down. Aside from needing it down for Meg and my office chair, I like my space to be the best ADA space it can be for others. I didn't want anyone to trip. Problem solved!

Going to church on Sunday was nice. I told my husband I enjoy having a dedicated time and space to sit with my thoughts and meditate. I often have helpful realizations about my life when I'm there and things I can do differently. This Sunday was no exception. 

Now I'm waiting on the brain MRI results and processing my feelings about the chair. And napping. There's never enough time for naps. 

My Hopes Are HIGH!

I got some awesome sauce news just now. (My doctor puts the "awesome" in the sauce.) 

"I received the wheelchair evaluation from physical therapy and will send you a copy in the mail. Please send me the information on the electric wheelchair and I will complete order.
Sincerely,
Your Awesome Doctor"

Ok, I might have added that signature. But it's not like I'm sharing his name with the world! Then you'll all want him and he'll be too booked to see me. I'm selfish like that. Don't like to share. Only child and all that jazz.

With any luck in a few months this little baby will be mine.

It's a "Fold and Go"

"But why this particular chair?" You may be asking. Well... The company is headed by a woman with RA who couldn't find a good electric chair to fit her needs, so she made one! Then turned it into a company. Let's start there. Also it's much lighter than other electric chairs (about 50 lbs) and folds down to fit in a regular car trunk. No van or hitch required. This baby is made for adventure! It can take inclines and bad weather like few other chairs can, especially in that price range.

I'm also not a... um... "petite" young thing and this chair is made for someone my size. YAY! Let the adventures begin!

Also in "big news this week" I ordered my first medical ID bracelet. It's something that's been in the back of my mind for a while, but my muscle weakness seemed to have taken a turn for the worse this week and that spurred me into action.

After a ton of searching I settled on this.

Pretty, but still looks like what it is. That was important to me.

Don't want to ERT to just think it's jewelry!

My job can be a bit risky. I work with a lot of different people and unpredictable situations can happen. Also I don't trust my own body right now AND I love to travel. So I thought it would be best to err on the side of caution and be prepared.

I know some people just use the Emergency ID Card on their smart phones. But honestly I don't think the ERT is going to be checking my phone while I'm laying unconscious from a bad fall or crisis. Nothing wrong with going old school when it comes to your health and treatment.

I had mine engraved with:

Muscle Weakness

Mobility Issues

RA/Asthma/PNP

ICE: husband's phone number

Did you know that ICE means "In Case of Emergency?" I saw it on a lot of medical sites and never knew what it meant. You're welcome. Also PNP means "Peripheral Neuropathy." I also had to look that up because the whole word wouldn't fit. 

Now if I tumble and conk my melon the responders will know why. Although nothing on my bracelet is life or death information like it is for some people, it's also important for anyone trying to help me to know if I'm in a situation where I can't speak for myself. 

My fingers are crossed for the wheelchair being approved with my insurance. It feels a bit like a message in a bottle that just got launched.

What Saves Me Spoons (and makes life easier!)

I've posted in the past about the things that make my day-to-day life a bit easier. But I'm always finding and trying new things, so I wanted to share my latest spoon savers.

#1) My Panasonic Wet/Dry electric shaver.

I used to use a typical razor in the shower and shave my 6'0 legs. The thought of that now just cracks me up! No way could I stand balanced in the shower and hand shave any part of me. Enter my wonderful, precious shaver. I use it dry about once or twice a week (despite my Italian heritage insisting I use it 5x a day at a minimum.) I use it while seated and as comfortable as I can be. You could however also use it with a shower chair wet in the shower. I just find for me that it works better when I'm dry (and let's face it, just showering is spoon sucking enough as it is!)

#2) Having super short "boy" hair that's my natural color.
I've had very short hair for a while now, but I keep getting it cut even shorter. The reason for that is 2 fold. 1 - My arms tire very quickly when raised up over my head (shampooing, conditioning, blow drying, styling) and having ultra short hair cuts that time WAY down. 2 - I'm growing out my color. Why? Although I love the look of dark hair (Yas Wonder Woman!) I hate the chemicals and maintenance. And again in comes the arm strength issue. I'm embracing my silver strands, but I hate the "two tone" look, so I keep getting it cut as short as I can bare. Which is pretty freaking short!

Me literally right now as I write this blog.

Yup... it's THAT short.

#3) Single serving and pre-made foods.

Yes, you pay more. And yeah... it's worth it! At least for me. I save a lot of spoons in the morning if instead of getting the gluten free bread out of the fridge, putting it in the toaster, finding a ripe avocado, cutting it up, spreading it on my toast, adding pepper flake and sea salt (because I'm fancy like that) I just open up (or even better have my husband open it for me) a small cup of my favorite yogurt. Add a banana and BINGO! Low spoon breakfast. Seriously anything I can do to save energy is worth it in the mornings. 

My favorite brand and flavor. 

If you haven't tried Icelandic yogurt, I highly recommend it!

#4) A HUGE capacity washer and dryer.

Less time back and forth = less energy used. I just bought a massive 5 cubic feet GE washer. I think my old one was 3.5? This one fits a whole basket in 1 load and was worth every penny. I wish someone would have told me that a big washer would save me energy and time. I would have traded my old one in sooner.

Mine is a GE 5-cu ft High Efficiency Washer.

You don't even have to clean the lint trap!

#5) Mobility Aides.

Although these are further down on the list they're the most important tools I have. All of them help me save major spoons, help with pain and allow me to do things I couldn't otherwise do. Hopefully soon I can add "electric wheelchair" to this list. But for now it's enough to get through my daily tasks.

Electric shopping carts

Transport wheelchair

Nordic Pole walking sticks

My #1 used tool the Rollator (with a seat)

#6) Adapting my house.

Making adaptations around my house has been fantastic. I have a small grab bar in the shower, sitting stool in the kitchen, a step stool with a handle (also in the kitchen), shampoo and soap dispensers in the bathroom and a tray for eating when we're sitting on the couch. I'm sure this list will get longer over time, but for now each of these changes has been hugely helpful. 

My cooking stool (with my old step stool)

My bathroom helpers

We Have Progress People!

At least it FEELS like progress, which is just as important. Also an important lesson, it's ok to cry in front of your providers. It lets them know in a real way how serious this is to you. Smiling and grinning through each appointment isn't always what's best, helpful or required.

Today was my appointment with my primary care doctor to be evaluated for an electric wheelchair. I came prepared (as usual) with my 1 page list of my symptoms related to "muscle weakness and fatigue" and a timeline of when it started and relevant dates (like when I started using mobility devices, etc...) I thought it was brilliant and helpful, but once again it was hardly glanced at. In my opinion this speaks more to how little time doctors have to spend with each patient rather than the quality of care they provide. 

Because I can walk more than 50 feet without any help (my max is about 200 feet right now) he feels I may not qualify for an electric chair. That's ok. I feel I have to try. The next step is to get ANOTHER assessment from a physical therapist. Oddly enough my doctor wasn't sure what that will entail, so I'll have to look it up (because Google knows everything!)

My husband went with me and was (again, as usual) SUPER helpful! Hearing him talk about how hard and scary this is and how neurology never responded to my messages made me tear up. I was glad to have him there to help advocate for me and stress that THIS IS SCARY! My doctor was very sympathetic and moved into "Super Doctor Action Mode" immediately.

He sent a message directly to Neurology for me and assigned us to a "Ambulatory Case Manager." He said they're like a patient advocate for complex cases when more than 1 specialist is involved. Sounds great to me! He urged us to be patient and hold out for my slew of appointments at the end of September. Then if those don't yield results he'll send me to a different neuro specialist. Wheeeee! More testing and appointments! But if it helps get results and answer questions it will be worth it.

I read a lot about other people battling complex RA or autoimmune problems where it takes them years and years (like 10 years) to get a diagnosis and some help. Out of everything that has happened to me over the last 3 years I'd say I'm most shocked by how rudimentary our medical system still is. It's just a lot of "wait and see, test and check, trial and error" and I really thought we were more advanced than that. 

It's easy to want to give in to frustration and anger, but I'm trying to see all the people I have helping me and looking out for me and focus instead on this feeling of being cared for that my doctor gave me today. For that I'm grateful.

My Sweet Companion

I'd like you to meet a very important person in my life. She's been with me for the last 12 years. She's seen me at my best and at my lowest. I can testify that her fur is very absorbent for tears. This is my precious dog "Sweetie." I adopted her from our local animal shelter when she was just 3 months old. Although we've had a few dogs before her, she is my first "puppy" and very much "my girl."

I'll tell Sweetie "want to go nap?" And she'll come and jump on my bed with me and stay there till I get up again. She's been the best companion I could have asked for through all of my illnesses and challenges. I don't know what I'd do without her. 

We DO have another dog. Her name is Lulu. She's a full blooded Basset Hound that we also rescued. We think we're her 5th family and she's been our girl for about 4 years now. She's very sweet and full of love too. But unlike Sweetie, she's high maintenance and needs a ton of attention. Lulu is my husband's girl just like Sweetie is mine. But of course we love them both and would do almost anything for them. They both bring a ton of joy to our lives.

When Your Legs Don't Work... Become a MERMAID!

Today I'm a mermaid

I've always loved mermaids, but since I started having my major muscle weakness and fatigue I've been even more captivated. I like to think of myself as a transformed mermaid whose human body is failing, but who can still swim just like she used to. That's a more comforting thought than a "chronically ill middle aged woman." I mean who wouldn't rather be a land-locked mermaid? Health is all about your frame of mind and your spirit.

So "Shirley" finally came and my husband and I took her out for a spin. He had the great idea of going to a local art gallery. The floors were flat and smooth and it was a big safe space to try out the transport chair for this first time. He did fantastic! Applause all around. Not one tip or bang. 

The #1 thing I noticed was that this was the first time I can remember in a very long time doing anything outside of the house that didn't leave me completely exhausted and needing a big nap. It was a strange sensation to have been all through the museum, but to NOT be totally out of spoons. So yeah, that was amazing and a huge relief.

Me & Shirley enjoying some underwater art.

You know... Cause I'm a mermaid!

So now in the back of my car I have my Nordic Poles (I don't know why I didn't name them? Maybe because I don't use them much.) Meg my Rollator and Shirley my transport wheelchair. I keep them in my car because I never know which I'll need when I'm out and I like to use the least assistive device that I can to keep my body strong. 

This Friday I'll be seeing my primary care doctor for my first official "wheelchair evaluation." I'm hoping to get an electric chair for when we're off on big adventures or on vacation. It would be better for inclines or off roading than a transport chair and it would also be something I can drive myself. I don't mind relying on my husband for smaller day-adventures, but for a longer vacation I'd need more independence. 

My wonderful doctor has also taken over my Lyrica Rx because I never did hear anything back from Neurology. That's more than a little frustrating. "Unacceptable" is the word my husband used and I have to agree. 

As much as I'm enjoying work that's also proving to be a struggle. Mornings are hard (even though I do my best to make them as easy as possible for myself) and I'm often out of spoons before I even leave the house. It's fatigue that's the hardest. The Cymbalta and Lyrica are doing a good job controlling my joint pain, gelling and neuropathy. Though I also take stretch breaks and do my best to keep as active as possible.

I'm thankful to still only be working 2 days a week because come Wednesday I need to rest most of the day. Too bad I can't just swim around all day looking for pearls like a REAL mermaid does!

Still Waiting for Help

I don't like not trusting people. I'd rather believe that everyone has the best of intentions and that people in the profession of helping others are really there to help me. But MAN doctors don't always make it easy!

I've been trying to get a hold of my neurologist for almost three weeks now. I want to increase my Lyrica dose and also let her know that I'm still having the scary muscle weakness. I've sent 4 messages to her now through our online medical chart and called. I even just asked to talk to the on-call neurologist this morning to try and get some help. But I haven't heard a peep back yet. 

At this point I'm just tired of waiting for help and am trying to go through my primary care doctor for the increased dose. My fingers are crossed that I'll hear back from him today.

I'm also still waiting on Shirley. I had really hoped I'd have her by today. Tomorrow is my husband's birthday and we're going out of town. I intentionally added a "rush" and paid extra for shipping to make sure I'd have her in time. Drat! Hopefully just going slow and using Meg will be enough to get me through the day. 

Thankfully I'm still only working 2 days a week. It has been exhausting, but I love it. I'm taking it as slow as I can and modifying my office to accomidate my needs. My office manager knows about my diagnosis and my needs and everyone has been very supportive. 

I've also been spoiling myself and letting my husband spoil me. The Cymbalta has really helped increase my energy, but now I risk doing too much. He's always reminding me to take it slow and guard my spoons. My doctor just increased my Cymbalta dose from 20mg to 30mg at my request. See neurologist! That's how it's done!

Hopefully the Lyrica will be resolved soon. In the meantime I'm still on 50mg 2x a day. My knee and feet x-rays didn't show any RA damage, so now it's onto the MRI portion of the evening (be sure to tip your waiters.) 

... And waiting on Shirley. I'll be sure to report back my thoughts on a transport chair as soon as I get her.

Next Step Tools

I've already shared that I've been struggling with muscle weakness for 4 months now. It came on suddenly about 1 month into taking Plaquenil. We don't know what caused it yet, or even what to do to help. It could have been a rare side effect from the Plaquenil or it could be unrelated and caused by something else. After endless research (and no help from my rheumatologist) the best I can figure is it's some kind of Inflammatory Myopathy. Possibly. Maybe. Could be. Or not. 

So good. You're all caught up. My muscles suddenly went out on me and my stamina sucks. Overall weaker muscles and they wear out very quickly. I'm not one to just sit at home and sob (at least not for long), so I've taught myself all there is to know about the world of adaptive mobility.

For some extra stability or medium length walks I use these Nordic Pole walking sticks. I don't use them often. But when I need them they super come in handy! Like at the beach last Friday. 

I can go about a block or 1 small store on my own power. After that I use "Meg" (my Rollator.) She's fantastic and has been a real life saver. I can go much further much longer with Meg then I would have. She keeps me out and ready for adventure. At least for about 2 more stops, or 1 medium store. Then I need to be done for the day, even with Meg. 

With lack of solutions coming from my doctors and this muscle weakness going nowhere I needed to take the next step. I don't want to be tired, even with Meg and call my adventure short. Being out and enjoying life is very important to myself AND my husband. So when even Meg isn't enough to keep an adventure girl going... I needed to look at using a chair.

I already spoke to my health insurance provider and talked about our wheelchair coverage. Now I have a "wheelchair assessment" appointment with my primary care doctor in two weeks. That's the next step to getting my own electric chair that I can use pain-free.

But in the meantime...

I'd like to introduce you to Shirley (surely actually... as in "Surely You Jest!" As in Surely you jest that I need a chair!") Humor is important. Shirley is a "Transport Chair." A transport chair is a wheelchair that always requires someone to push you in. See how she has petite 8 inch wheels? That's because I can't use hand powered chairs with my "hurty paws." A transport chair is also very light weight, can fold up for easy travel and is easier to push than a hand propelled conventional wheelchair. I'm hoping it's perfect for our adventures!

As of now I don't need it all the time. Or even half of the time. But I will feel much better having it in the back of my car just in case. You know... so the adventures can continue!

Illusive Sleep

With chronic illness comes chronic sleepless nights. For a while the Lyrica and Cymbalta were both helping me sleep. But I've noticed a pattern where the Lyrica will help for 2-3 weeks, then it's like I've adjusted to it and it doesn't help as much anymore.

The neuropathy in my legs and pain in my joints (toes, back, shoulders) keeps me up at night. I sleep with a Fitbit and although not 100% accurate I always feel it's pretty darn close. I can tell easily when I don't get enough deep sleep or REM sleep, or both.

This was last night's report:

SLEEEP! Why you no work!?

And this was about 3 weeks ago when the Lyrica was really helping:

I like how you can see the average "benchmark" range.

I pretty quickly went from hitting my sleep goals to being "atypical" even at night. Darn. Now I did just start a new job, but honestly I don't feel like that's affecting my sleep. In fact if anything I should be sleeping BETTER because I'm chronically exhausted.

On days I don't work it's less of a big deal because I can nap. But soon my 2 days a week will move up to 4 and then I'm worried. I have a message out to my neurologist asking about a dose increase, but once again it's been 4 days and I still haven't heard back. -sigh- They don't call us "patients" for nothing, right?