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!

What's On My Mind

After the heaviness of the last few posts I thought I needed a bit of balance. So here's what's on my mind today (just in case you're curious.)

1. Why isn't there a "Grub Hub" food delivery for cake? I would order a big piece of gluten free chocolate layer cake today to be delivered right to my door.
2. For the first time ever my "home care" directions from my doctor says "drink caffeine and lay on your back." Well... if I MUST! Coffee in bed it is! There is an upside to a lumbar puncture after all! Who knew?
3. Why doesn't the Disney Channel just endlessly play classic Disney movies? What a loss! I'd stream that.
4. Dogs are a lot of work.
5. Someone needs to invent a laundry hamper that's also a washer and dryer.
6. Why aren't all washing machines located in the closet? Wouldn't that make life so much easier?!
7. I think I'd like to have wings... and a tail. That'd be cool.
8. I wish I had some cake.
9. Rocks are cool. And shells. Neither require any kind of care. I like that.
10. I don't have enough jewelry.

Oceans of Tears

These last few days have been really challenging and I feel like I've cried enough to fill the whole Pacific Ocean. For starters I'm using Meg about 99% of the time I'm out of the house now. Which means people who know me, but don't know my heath challenges all scream "WHAT HAPPENED TO YOU!?" When they see me. It has been hard. Some people are placated with a simple statement of "I have a chronic illness." Or "I have an autoimmune disease." But others apparently need to know every single detail of my life and well being.

Rheumatoid disease... hell... ALL autoimmune diseases aren't known very well so if someone is genuinely interested I want to help educate them in a gentle way. But all that takes spoons. Many many many spoons.

I've also been craving a trip to the ocean. Fortunately I live only about 90 minutes from the sea. My husband, being the amazing man that he is, went out of his way Saturday to make sure I not only had a little time at the ocean, but that I got to stick my hand in it.

It wasn't easy, but he helped maneuver Meg down 3 wobbly gang planks to get me low enough to stick my whole hand in. It felt wonderful and made me so happy! I also felt like a poster girl for Rollator adventures. Go Meg!

The day that my spinal tap (lumbar puncture) was scheduled I went to Etsy and bought myself this little bracelet. I'm a huge fan of support in whatever form I can get it in. I could tell the spinal tap was going to be tough for me. I was pretty scared to get it done (apparently for good reason.) 

With chronic illness you need to be brave every single day. Some days just leaving the bed feels brave to me. And let me tell you that while I was having my spinal tap yesterday, 3 things helped me. 

1) My husband being there holding my hand. I don't know what I'd do without him. 

2) They asked me if I'd like some specific music playing... I chose ocean sounds and it was very relaxing and helpful. The seagull sound effects even snapped me out of a very hard/painful moment and almost made me laugh.

3) Looking down and reading these words on my wrist.

It was a very hard procedure with complications and unfortunately I'm also one of the 20% who get a nasty headache after. I was really hoping to skip that. Darn. I'm resting today, being brave and having kindness towards myself. And I'm leaning hard on my husband. Letting him comfort me, love me and dry my oceans of tears. I'll be stronger tomorrow. For now it's ok to just ride out the storm.

I can't forget it

My health problems never let me forgot that they're there. Every second of every day I can feel it. My hands feel stiff and swollen (even if they don't look it.) My toes on my right foot feel like they have sharp toothpicks inside them. My calves feel full of angry bees. My arms feel tired and weak. My head feels full of cotton candy, like someone wrapped a scarf around my head that I can never take off. I also feel dizzy. Like any sudden turn or movement will make me crash to the floor. And my back feels full of sharp spikes that stab me whenever I move. My mouth feels full of sandpaper and I'm always thirsty no matter how much I drink. Sometimes the back of my throat feels like fire, or like someone burned my tongue while I was sleeping. I feel all of these things, all at once, and more, all of the time.

This morning I went to my gym to do my aqua aerobics class. I love being in the water and look forward to these classes. In my excitement I did something I used to do all the time. I jumped into the deep end of the pool with water up over my head. It felt wonderful! Amazing. Like I was a mermaid. But as soon as I surfaced... "Uh oh. What did I do!?" Both ears were full of water.

That used to be no problem for me. I'd wait till I got home and thump my head a bit on a pillow and it would come right out. But with my inflammation and dizziness, that was a real issue. I tried to get it out there in the pool. Slapping my head on the water like some crazed seal. But it was no good. I spent the whole class dizzy and miserable. 

When I got home I went straight to my room to thump my head on my bed. It's a trick I learned when I was a little mermaid who spent every day, all day in the pool all summer long. It never failed me. A solid 20 minutes later I finally got it out. It was a LOT of water. 

I wish I could forget about my needs and just jump, dive and swim underwater like I used to. I wish I could have a glass of wine with a big plate of pasta. I wish I could hold a super cold glass and enjoy the coolness on my warm hands. I wish I could walk all day long at Disneyland or on vacation and not give a second thought to it.

But I can't. Not anymore. Now I have to plan, protect, prepare... I need "Meg" with me in case fatigue crashes down on me or my muscles give out. I need special insulated cups to protect my overly sensitive hands. I need to think about accessibility when making plans and going places. I need to not commit to too many things because I know it will take all of my limited energy. I need to avoid some foods because they could make my mouth ulcers worse. I can't forget that I have a chronic illness. If I try to forget, to pretend I don't, to assume that I'm just fine, then I only feel even worse. 

But I'm still lucky. Still grateful. I have many resources, lots of support and I'm a very smart person. I'm great at problem solving and working around things. I also have a lot of experience from raising a special needs child. I live in a very accessible town and even my house is super accessible. I have options, good health care and people looking out for me. I also live in a time when there are a lot of tools to help me work around my needs. And not just tools, but pretty tools! 

Yes, there are many things I can't do anymore, but life is full of constant change. There are tons of things that I CAN do and that list keeps on growing. 

Today's a Good Day!

Today is a great day!

My pain is much lower today than it has been in recent memory. I slept 7 1/2 hours through the night and I was able to garden for more than just a few minutes. 

I spent a glorious 45 minutes this morning tending to my poor neglected plants. That was the first time in about 2 months that I did some light manual labor and didn't end up with shaking muscles and exhaustion from my efforts.

Two things happened yesterday that I think helped me. The first was I messaged my neurologist about the Lyrica not really helping anymore. I've been on it for 13 days now. She got back to me right away and told me to start taking it twice a day instead of once.

The other helpful thing was a suggestion from my mother that I take a dose of Acetaminophen close to when I take my 800mg Rx Ibuprophen. She said this is commonly advised where she lives (in England) for people with severe pain.

I gave it a try and had a lot of relief. I think that's why I was able to sleep through the night. Apparently that's very common in the UK for doctors to advise taking the combo like that. 

Despite all my efforts my mouth is still sore. I can feel it in the back of my throat, roof of my mouth and back of my tongue. I have an appointment this Friday with my primary care doctor, so I'll bring it up then. In the meantime though I tried just having yogurt for lunch.

Actually it's organic, fat-free Greek yogurt mixed with a dash of cinnamon, a drop of vanilla extract and a little gloop of local honey. For someone who hates yogurt I shockingly enjoyed it! I hope there are more good days in store. 

Rescue Smoothie

I'm still having a lot of problems with my mouth. Lately I've been getting painful ulcers on my tongue, but on Friday I got a big one on the roof of my mouth. I thought my tongue was also looking a bit "thrush" like. That's telling me I could be having a yeast issue. So here comes some probiotics and yogurt to the rescue!

I bought everything I would need to start drinking a morning smoothie again and just made my first one. A smoothie is a great way have yogurt if you're like me and don't really care for the taste. It's also a great way to get fiber and general nutrition in too!

Blueberries and tart cherries are supposed to both be excellent for inflammation and RA. I always buy organic because I can have a mouth reaction to conventional berries. I'm guessing from the sprays that they use. So be careful when choosing the right produce for your own smoothie.

Here's what I put in mine:

1/2 cup tart cherry juice

1/2 cup blueberries

1/2 cup strawberries

1/2 cup Greek yogurt

1 handful of "super greens"

1tbs. Hemp Protein powder

All ready to blend

VOILA!

I think it made about 6oz.

Ok, so it tasted a bit like grass. I think next time I'll add honey. I thought the berries and juice would make it sweet enough, but nope. 

I do like this better than juicing in a juicer. I feel it's easier, faster, cheaper and less wasteful. Now hopefully the yogurt addition will help my mouth. I also gargle with salt water 2x a day and rub a bit of raw, organic coconut oil on wherever it hurts. The salt water and coconut oil are both really helpful, but it still seems to be healing too slow.

Current Symptoms - July

Back at the end of May I shared this post about how I keep a "running tab" of my current symptoms to share with all my medical providers. I've only been met with positivity when I come prepared and organized like this. That said, I do try and keep it to a 1 page sheet. That's becoming more challenging. 

I have an appointment with my primary care doctor next Friday and I'm seeing my new rheumatologist the Friday after that. And.... Huge news... My insurance referral came through yesterday for my spinal tap. That's coming up next Monday. Hopefully they'll have the results hot off the presses for my new rheumatologist! YAY! Things are starting to come together. That also gives me a full week to recover from the procedure before I start my new job. 

With these important appointments in mind I did a little tweaking to my list. Previously I had two categories on a Word document. 
1) What I've Tried 
2) Current Symptoms 

Now I broke that into three categories. 
1) What I've Tried 
2) Currently Using 
3) Current Symptoms 

All of these sections have grown since May. Here are my current symptoms:

Current Symptoms:

• Reduced overall muscle strength, especially right side of body
• General Fatigue (feel exhausted most of the time, especially after activity)
• Muscle shaking (arms & legs) after short exertion (like 15 minutes of light gardening) Stops with rest after about an hour
• Inability to have an orgasm (muscles can’t sustain contraction for period of time.)
• Joint pain in feet (especially right foot, ankle and 4 smaller toes. Right ankle & toe swelling.), in both hands (especially right hand & fingers. Hands feel hot) lower back, mid back, neck (that sometimes wakes me during the night), both knees, right hip and right shoulder pain
• Muscle spasms (thighs, calves, arms and stomach mostly)
• Dizziness (especially with movement)
• Peripheral neuropathy symptoms (especially in legs, arms and lips) numbness, tingling, feels like nerves vibrating or full of bees (currently taking Lyrica for this.)
• Both hands swollen in the morning (Sleeping in compression gloves helps.)
• Feeling of fullness, pressure in right ear (ETD)
• Painful body joint gelling in the morning and after sitting
• Forearm burn and itching (nerve itch? Ibuprofen helps)
• Increase temperature sensitivity in forearms, hands, shins & feet
• Frequent urination, especially at night (0-8 x per night. Improved temporarily with Lyrica.)
• Dry mouth, especially at night
• Ulcers on tongue & roof of mouth (Responds to salt water rinses)
• Sore throat off and on (like I feel like I’m getting sick, but I don’t)
• Cracking of joints (neck, hands, feet, back, knees)
• Occasional “brain fog” (like I have the flu)
• Toes on right foot appear to be “drifting” away from big toe & swollen
• Ankle swelling on right foot after minor activity

My jacked up feet after 15 minutes of light gardening.
My toes and right ankle puffed right up.
Yes, it hurt.

The spinal tap will hopefully help sort out which of these is being caused by the RA and which (if any) are from something else. That's why it's so important. It is possible that all of this is from RA. Or it could be comorbid with MS, ALS, or something else completely. 

My muscle weakness is still progressing. It's even affecting me sexually now, which is a huge issue. I'm hopeful that my new rheumatologist can find a drug that will help and I can regain some strength and mobility.

In the meantime, Meg will be my new "adventure buddy" and I'll just do what I can, for as long as I can.

Help While I Wait

The other day I received this text message that made me feel hopeful and excited. It meant that my spinal tap was approved and ready to be scheduled.

If there's anything I hate more than being sick, it's waiting and the unknown.

I called first thing this morning to schedule and was told that the message was sent by "mistake" and that I haven't been approved yet. In fact my insurance was saying that "The referral didn't meet criteria and the neurologist is having to re-submit." In English that means I could be in for a long wait. 

Aside from hating to wait and wanting to know 100% what's going on, I was hoping to get this all done before I start work again on the 23rd. That's less than 3 weeks. Now I have a feeling that's just not going to happen. Which means I'll likely have to deal with starting a new job while recovering from a spinal tap. Great.

Hopelessness and frustration visited me for a little bit this morning. But then like a Harry Potter patronous chasing away a dementor, I had a really helpful thought. Bob Marley's song "3 Little Birds" just literally started playing in my head. It was instantly soothing and helpful. 

Three Little Birds

Bob Marley

Don't worry about a thing
'Cause every little thing gonna be alright
Singing' don't worry about a thing
'Cause every little thing gonna be alright

Rise up this mornin'
Smiled with the risin' sun
Three little birds
Pitch by my doorstep
Singin' sweet songs
Of melodies pure and true
Saying', (this is my message to you)

Singing' don't worry 'bout a thing
'Cause every little thing gonna be alright
Singing' don't worry (don't worry) 'bout a thing
'Cause every little thing gonna be alright

Rise up this mornin'
Smiled with the risin' sun
Three little birds
Pitch by my doorstep
Singin' sweet songs
Of melodies pure and true
Sayin', this is my message to you

Singin' don't worry about a thing, worry about a thing, oh
Every little thing gonna be alright, don't worry
Singin'…

I also remembered some of my favorite RA bloggers and the excellent advice they had shared. Here's some of my top finds:

• RA Guy - Through the Looking Glass
• Ilana Jacqueline - 5 Ways You're Not "Living" With Chronic Illness
• Arthritic Chick - My New Wheelchair (the blog post I was never going to write.)
• The Mighty - 20 Gentle Date Ideas for People With Chronic Illness

These are very diverse articles in theme, but each one touched me in an incredibly helpful way. Each is encouraging and supports some central themes:

1. Your life doesn't stop because you're chronically ill. 
2. Work around what you can't do and do more of what you can.
3. Romance and love are powerful and healing. Don't stop that because of your sickness. (see number 2 instead.)
4. Don't live your life waiting. Waiting for results, appointments or other people's opinions.
5. Don't stop doing what you love just because it's harder now.
6. What you're going through is very hard. Find tools that make it easier (see number 2.)
7. Don't let other's opinions (including your doctors) define what you can and can't do. Listen to your wise body.
8. You have nothing to prove to anyone. Do what's right for you.

All of these are reminders that I still need on a fairly regular basis. I'm still very much adjusting to what comes easy for me and what is now harder. I have "gloomy days" to be sure. But I notice they don't stick around for as long as before. I also can see how this experience is encouraging me to grow in areas that are hard for me. Patience, trust, self empathy and mindfulness. 

Alone Together

Back in May I did a post where I shared a picture I had done in my journal. It encapsulated how I was feeling at the time. I said "I bet a lot of people feel like this, like they just slipped below the surface. Just dipped out of range. Other healthy people live on one level while you're just out of reach. You can come up to their level, but it's a lot of work... Then you dip down again"

I've been thinking about that picture ever since and noticed a few things.

1. I noticed that I didn't use the word "I" once. I was speaking in a generalized way about something I was personally feeling. 
2. I was feeling like it's me vs. everyone else who must be healthier than I was feeling at the time. That's a huge assumption.

Today I did another picture on the same theme. I said "In reality it's more like this... Everyone struggling with their own private challenges."

Again, I can't help but notice I didn't use the word "I." Although this little doodle might be more culturally accurate I think I drifted even further away from myself. I'm nowhere here. Just anonymous people trapped by their own challenges (despite the ladders everywhere.) 

Art is a useful language when words fail. Even though I was attempting to do a new drawing showing a more communal, mutual struggle I think it looks like I'm still feeling withdrawn and isolated. 

Noticing these things is very important for me. I feel like it means I need to connect with people more. It's not easy to do when I feel so drained being social and I don't have easy answers when people ask how I'm doing and what's going on with my health. The combination just makes me want to stay home and take a nap. But I know that's not healthy for me.

I made a new friend at aqua aerobics and we're having coffee Friday. I also e-mailed a friend this morning suggesting a few dates for lunch. But I notice I've been really struggling with my mood lately. Nothing about this is easy and I'm just doing the best that I can. I'm trying to have some kindness with myself and just ride these waves of emotion as they come.

Knowing What Helps and What Doesn't

Knowing what doesn't work for me can often be just as useful as knowing what does. As my condition progresses I've been exploring and learning what is useful, helpful and working for me. But that doesn't mean that everything I try works out. Or maybe it helps at first, but then quickly doesn't help anymore.

Baths always help

Physical therapy just became one of those "not helping anymore" tools. It was helpful at first and I learned a lot about how to sit, stretch, squat and move safely without further injuring my back. But I never quite hit it off great with my physical therapist. Today I saw his assistant (a woman) who I thought would be a better fit. But once again I found myself educating her about what RA is, what my limitations are and why 90% of the exercises she was trying to do were painful/exhausting for me. (I did the same thing with the other PT. It's a spoon suck!)

You know what? I'm better off doing my own thing. Thank you PT, but I'm good now. My last bit of helpfulness was having her check out Meg and make sure I had her adjusted correctly for my height and that I'm sitting in her the way I should be. Yup! Got the green light. Now I fail to see the need to go back. 

Support is helpful.

Something recent that HAS been helping me is getting support online. I joined a website called "My RA Team." It's a bit like Facebook for people with RA all around the world. You can post how you're doing, share a picture, ask a question and comment on other people's posts. I've found it to be educational, empowering and supportive. We're all struggling with our health, so it's very reassuring and non-judgmental. 

I think a lot of people cling to what doesn't help just because it's what someone else told them it's what they're "supposed" to be doing. I tend to always question, listen to myself and follow my instincts. If something isn't working for me then I drop it.

Another recent addition that has been helping is my Lyrica. My new neurologist (who ALSO is very helpful) put me on it last Wednesday for my neuropathy. I've now slept through the night the past 3 nights in a row. Something that hasn't happened for me in about 10 years. Sleep is always helpful.

Use Those Tools!

I wear glasses so that I can see clearly. I use a fork so I don't get food all over my hands. I use a car so I can go long distances easily. I use a helmet to protect my brain when I ride my bike. So then why is it so hard to use a mobility device?

Me & "Meg" shopping in style

I'll tell you why. STIGMA.

I tell myself that I don't care what other people think. And that's true. But there's still a small part of me that whispers "You've given up" every time I use a mobility aide. "You should be trying harder. You don't NEED this. You can do it without it. You're being lazy." These are all things a hideous little voice mutters in my head when I grab Meg, or a scooter cart. 

I'm not really sure where it came from. I'm thinking it could be the "voice of my culture." That what I'm really hearing are my projected potential thoughts of other people who see me using these devices. Add to that the fact that I'm a larger woman and I could even hear "It's because she's fat." Isn't that awful? I don't want to listen to those voices.

Here's what I want:

• To keep active and do as much as I can.
• To be a role model for others with illnesses to use the tools available to them.
• To break stereotypes and challenge the norms (like walkers are for old people.)
• To build my strength by walking as much as I can, even with my tools. (Rather than staying home and being sedentary.)

I could just stay home, feel sorry for myself and not go out at all. Or I could try to not use my tools, do a lot less and make myself feel worse in the process. There's always options. I chose to modify how much I do and how I do it to keep on being as active as possible.

I noticed an interesting added benefit. My condition isn't invisible when I'm out with Meg. She's a big shining beacon that says "HEY! There's something up with this beautiful woman and she needs a little help getting around!" 

People are nicer to me. They don't sigh loudly behind me if I'm going slow. They don't clear their throat as I'm trying to open a door. They get the door for me. They tell me to "have a nice day" and compliment my scarf. 

I was prepared for people to ask nosy questions, or to be really judgy and rude to me when I use Meg. But instead the opposite has been happening. That was a real surprise to me. People have patience and understanding around me that they never had when I didn't use mobility devices. We respond to what we can see. Makes sense, right?

I'm sure over time those annoying negative messages in my head will go away. I know it stems from my own fears of judgement that (so far) are completely unwarranted. It also comes from not being super trusting of other people. Another challenge that I'm working on.

I also learned another cool thing about using Meg. When I sit in her and wrap my arm around my husband's waist, my head hits him at a perfect, snuggly, cozy spot. It was a lovely surprising discovery. I'm sure there's more where that came from.