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.

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.

What Happened to "Plan Kick Ass?"

Plan Kick Ass (or PKA as I call it) was way-sided by the introduction of Plaquenil. I stopped taking my supplements, except for Vitamin D (because my doctor recommended that one) and I didn't have the energy to make my own juice. I did however keep up with the new "chemical free" beauty products and gave all my old stuff away to good homes. I hate waste!

View from my bed

I think today I have the energy to make some fresh juice for my 10AM snack. It's not just making the juice that's so tiring. It's washing the produce well, making the juice and cleaning everything up and putting it away. Just like going grocery shopping in itself isn't the real spoon sucker. It's driving to the store, walking all over and putting stuff in the cart, chatting with the checker (or people you run into that you know), loading up the car, driving home, putting it all away. MAN! I'm tired just from listing what about it is tiring! Well, juicing is a lot like that. There's a lot of steps involved that all = exhaustion.

My other favorite place to be.
The living room couch (complete with cozy quilt.)

So like all things in my life I've learned to modify PKA. I got the handicapped parking plaque (and I've been so thankful that I did!) I'm asking for help when I really need it. I'm letting all the little things go that I used to feel I "HAD" to do every day. I'm savoring time with my husband and doggies. And I'm trying to be more patient.

I've been finding a lot of support in books. My latest find is "How to Live Well With Chronic Pain and Illness" by Toni Bernhard. I think I found this book by just putting "chronic illness" into the search engine at my library. Actually from home, then I request a hold on a book. That way I just have to run in and grab my hold stuff. That's another modification I've made.

Even though people are all so very different, it's helpful reading someone else's experience and what has worked for them. Toni is very frank in her book about her struggles, but does so in a very hopeful/helpful voice. I'm enjoying it and plan to read her first book "How to Be Sick" next.

Alright. It's snack time and I'm off to try juicing. Wish me luck!

Plan Kick Ass As of Now:

• Eat a little something every 2 hours.
• Rest and nap if I feel the need.
• Wear my compression gloves to bed at night.
• Continue being as chemical free at possible with products.
• Try to eat anti-inflammation foods.
• Take Vit. D & Magnesium daily (for muscle pain.)
• Go slow and save spoons.
• Drink lots of water and herbal tea.
• Be loving towards myself.

Patiently Being Impatient

I've become an expert at patiently being impatient. Patience is not one of my many (many) virtues. I've never been a patient person. However, when you're a patient, you HAVE to have patience. When my son was little there was a Sesame Street song that just nails it. It goes "You have to be patient, to be a patient..." Oh Maria, you wise a$$ woman you. 

So here I am. Patiently waiting to hear back from my Rheumatologist about a question I asked her. Patiently waiting for my May 1st appointment with my primary care doctor to explore anything I can do or take that might help while I PATIENTLY wait for my June 27th appointment with my new neurologist. See... that third one got me. I'm out of patience (and apparently can't spell "rheumatologist" to save my life.)

My BFF - the cup cozy for all cold things

And meanwhile back in pins, needles, numb, temperature sensitive, fire-ants-are-eating-me-alive land, I breathe and remind myself to be patient. 

I read this really wonderful quote yesterday from The Book of Joy. "If something can be done about the situation, what need is there for dejection? And if nothing can be done about it, what use is there for being dejected?" -Shantideva

I just adore that word "dejected." YES! I feel dejected! I feel it hard core! To my gut! To the PAIN (a little Princess Bride humor for you there.) And to force myself to instead feel hope, optimism, patience, is no simple task.

The Dalai Lama says that "As we recognize others' suffering and realize that we are not alone, our pain is lessened." I completely agree. I think that's one of the reasons I enjoy reading other people's blogs about chronic illnesses, autoimmune disease and other challenges similar to mine. It makes me feel not so alone. And when I see that someone has similar symptoms or struggles, it feels comforting AND validating.

Most of the time with doctors I feel like I'm trying to describe a world to someone who has no sight. It's just impossible. To share with others who can see what I see and feel how I feel is incredibly liberating. It gives me hope.

Spring is a time for renewal. 

I'm doing my best to join in on the growth!

The Dalai Lama also says that "The way we heal our own pain is actually by turning to the pain of others." I do notice that while I'm at work hearing of other people's deep pain, mine slips away. For that hour I can focus on comforting someone else rather than being the one who needs comfort. It is a very healing experience (hopefully for us both.) I feel very fortunate to do what I do.

I'm working on reaching out and sharing more of my experience with others. Making new friends and opening up more. For today I wish you good health and lots of love and patience.