Where's My Instruction Manual?

I wish I had an instruction manual that came with my illness. "When you start to feel so dizzy you might pass out, don't panic! It's just a migraine. Go to bed and it will pass." That kind of thing. Instead I feel like each thing my body does is new and scary and I have no idea what to expect from one moment to the next. Which in turn makes it incredibly challenging to plan my future.

Maybe the manual would say "In 5-8 years you will no longer be able to care for yourself, so prepare in advance for that mentally and financially." Or "In two years you will need assistance to bathe." That way I could plan for an ADA bathroom remodel.

Or how about "In 2 years you will require a feeding tube." So I would know to really enjoy every bit of food now. Or even "By fall 2020 your condition will be stable, expect no further deterioration of muscle use."

I wish the manual would have told me that I would only have my dream job for one year before my symptoms became too much for me to work. I also wish I would have known that I wouldn't qualify for any kind of financial help from the government because I'm married to a person with a good job. "You will be financially dependent on others due to your illness..." I wish I could have prepared for that.

The hardest thing about my chronic illness is having no idea what's around each corner. Or how long I'm doing something maybe for the last time.

This weekend I tried to change our porch light myself. Something I've done many times over in the past and I just couldn't. I asked my husband for help and of course he sweetly came out and did it. But trying and then not being able to do it was very upsetting to me. I think not knowing that something is the last time I am going to be able to do it makes the first time I can't that much harder. 

But life is just that way. For all of us. Nothing is permanent and the whole concept of permanence is an illusion. None of us ever really knows the last time we will do anything. 

That's also what makes life sweet. I must relish each moment as I'm in it rather than rush from one thing to the next. Savor each meal, each kiss, each time I can shower independently. Because I don't have a manual. I'm blindly stumbling through life just doing my best.

Same Symptoms, Different Day

I used to keep a running list of my symptoms and share them with all of my medical providers at each appointment. This was helpful in the beginning because we had no idea what was wrong with me. When I started the quest for a diagnosis it was 2018 (2 years ago) and we were thinking it could be rheumatoid arthritis? An autoimmune disease? All I knew was I had a lot of pain that left me crying at night.

What it turned out to be was:

• Stocking glove pattern neuropathy
• Benign brain tumor
• Metabolic/Mitochondrial Myopathy

I also had a complete hysterectomy in 2015 due to major reproductive health issues.

I assumed at the time that my problems were mostly neuropathy (that I believed was caused by my Latent TB treatment the year before) and autoimmune. My symptoms were all pointing to RA being the main culprit. But then the sudden muscle weakness hit. From one day to the next I suddenly lost about 80% of my strength.

It took a very long time and many referrals to solve the riddle of my muscle weakness. The current consensus is that my mitochondrial cells (the power cells of the body) don't process energy correctly. I have 3 genetic mutations that have been identified that could be the cause. All of this is pretty new science so everyone is really just doing their "best guess." I've learned to be the expert in me.

Unfortunately either the brain surgery that I had in 2018 or my Mitochondrial Myopathy have cause me to also suffer from Vestibular Migraines. Shockingly these have been more crippling than my myopathy. So if you're keeping track it's:

• Vestibular Migraines
• Metabolic/Mitochondrial Myopathy
• Stocking glove pattern neuropathy
• Osteoarthritis (and possibly RA)

It's been about a year since I posted my symptoms. I also don't really keep track of them anymore. There's a few reasons for this. 

1) I'm tired of talking about it, looking at it and only being a "sick person."
2) My symptoms haven't really changed.
3) It's more useful to alert my healthcare team about NEW things if/when they come up.
3) New symptoms can get buried under my massive list of health issues and get overlooked by my doctors.
4) I have a great team who keeps good records of my health diagnosis, visits and concerns so it's a bit redundant at this point.

Rather than bringing in a list of symptoms with me now to an appointment, I bring specific concerns and/or questions that I have. I always take notes and I very very rarely go alone. This helps make sure I don't miss anything (as my memory can be a serious issue).

When I look at the list of my past symptoms I still have all of them. However, I also have treatment that helps me manage them. I feel positive that I will soon have treatments in place to help 100% of my symptoms be bearable.

Habits

My mother and I describe ourselves as the "Queens of lists". Every week we sit down and make a list of things we've been talking about. Usually something on a deep level or something we'd like to explore and grow in some way.

Last week we were discussing habits. Specifically things we'd like to become more of a "good" habit. Here's what I came up with:

Of course I also listen to my body. She comes first and sometimes habits fall by the wayside. Like this morning we were going to go swimming together, but my body just screamed "NOPE! No spoons for that today!" And I listened. Not something I used to be able to do at all, so I guess it is a new habit after all?

Here's me participating in some new weekly habits.

My new habits combined with my refusal to compare myself to my "old" self have resulted in something I really needed. A new routine in my life. A new way of living and being in the world. Which have resulted in this!...

Disability 6 months in

You'd think after being off of work for six months that I'd be more adjusted and used to it then I am. But I'm not. I was recently approved to take my licensure exam, which when I pass, will be the pinnacle of what I went to school for. That's IF I can pass. Even if I can't actually work in this field again it's important to me personally to achieve that goal.

My symptoms are still worsening and my muscle weakness seems to be getting a little worse. It's mostly that constant pain that's worse. I always feel like I've been stretched on a medieval torture rack. 

Then there's the bad dreams. I have a recurring dream where I'm starting off walking fine, but then the pain sets in and I can no longer walk. I'm stranded somewhere with something I'm trying to do usually on my belly crawling. It's really stressful.

I also still think about my clients and my job that I had to leave behind. I don't feel like I have a "new life" or any kind of a "new normal" at all. Especially not with the world in chaos right now and trying to keep healthy. I feel stressed, upset and just heavy. Emotionally and physically. 

So rather than moan any more here's what I'm doing right now that helps me.

Ok, so that was going to be it... followed by another list of happy helpful things. But then I realized:
1) I'm not "moaning" I'm sharing important feelings.
2) It's my blog and I can write about whatever the f*@& I feel like.
3) I have no idea where this pressure to "not complain" on my own blog is coming from, but it's worth looking into.
4) I have a right to my own feelings.
5) Why am I underplaying things that are a big deal? Trying to brush them off? For me? For others? It IS a big deal and that's ok.
6) Where the F*$% did that come from anyway?
7) Yes I am disabled. Yes it sucks. It's ok that for now there's a period at the end of that statement.
8) Everything I do hurts me. It's just a matter of how much and is it worth it. I know I'm not alone in that, but sometimes it feels like I am.
9) Being me right now is exhausting. 
10) I hope my doctor gets back to me so we can try and find something else that will help.

(I'm not in the mood for pictures today, and that's ok too.)

You Look So Pretty!

Second only to "you look so healthy" those four words also can be a bit loaded. I mean when was the last time you told a woman "You're so smart! You're so organized! I really admire you!" Not to say that we don't also compliment others outside of beauty, but come on. We all know "You look so great!" Commenting on someone's superficial appearance is the cultural go to. Even for children "You're so cute". Which is really terrible.

I had a conversation with my mother the other day about beauty standards and ableism. I feel like every way in which a person deviates from the cultural standard of "normal" you will encounter push back. This push back can come in the way of prejudice, discrimination and the world just not being made for you.

No makeup, kid clips, not fighting aging.
I think I'm still pretty.

Typical "deviations" from our current culture that will cause pushback are:

• Skin Color
• Body Size
• Signs of normal aging (wrinkles, sagging, silver hair...)
• Obvious signs of disability (wheelchair, walker, synthetic limb, deformation, oxy tank...)
• Height
• Socioeconomic status (how wealthy you are... or aren't)
• Body hair (on women)
• Body odor (on women)
• Dressing "outside the norm"
• Body modifications (face piercings, ear gaging, etc...)

And as if this exclusionary, impulsive reaction wasn't bad enough another thing I've noticed is that the more of this box's you tick, the more violent and immediate someone's reaction can be. One need look no further than the violence perpetrated against trans women of color to see that's a fact. Being tall, a person of color and transgender can easily get you killed.

So what does that mean to me, a queen size disabled person over 20? I shared with my family that I've noticed a huge difference in how people react to me and treat me depending on what mobility device I'm using, the color of my hair (natural vs colored), the clothes I'm wearing, the purse I use and if I've chosen to wear makeup that day.

Growing my hair color out.

AGAIN...

The most poorly I'm treated is with natural hair, casual clothes, no Coach bag and using a store electric cart. I honestly like to keep my cane in a store electric cart with me as an obvious signal to my disability. Being a big person there are way too many "people of Wall Mart" memes out there for my comfort. I noticed that people will not get out of my way (block me in on purpose), ignore me, not offer to help me with anything and in general tend to just look away.

Helooooo. Get the hell out of my wayyyy!!!

The best I'm treated is in full makeup, hair colored, dressed up, expensive purse and either walking on my own (something I only do in my own house these days) or using Dory, my "mega wheelchair." I believe that is because it screams "I have a legit disability!!!" Dory for sure gets me treated even better than my travel wheelchair Ariel. I'm guessing because of the size and gadgets it just "looks more disabled".

Vroooom!
Me and Dory taking off from my Mom's house.

So what would happen if I have blue hair, piercings all over, riding in a scooter, wearing rainbow yoga pants and an obscure 80's band t-shirt carrying a unicorn backpack on my back? If you add to that it is a person of color and a very large person I'm sure she'd end up a meme on someone's Instagram account, or be filmed against her will and uploaded to YouTube with some horrible comments being made. That's my guess. Because this person is too far outside of what our culture deems "normal" and they deserve to be punished for it.

Even with knowing all this to be true I still choose to push the boundaries on normalized culture. I feel it's the only way to create change for the good. For there to be love instead of hatred and prejudice. Because I am a social justice warrior and a feminist and that will never change no matter how severe my disability becomes. 

With not being able to work right now. Not being able to help people the way that I used to. Living with this core value of loving people and fighting against stigma in even the smallest way still gives me a strong sense of purpose. Something everyone needs in life.

Transitions

My new transportation cards

I don't feel like I'm "transitioning" into my life of being on disability and not working. Not at all. Instead I feel like I've been distracted from really coming to terms with anything. Part of that has been from being so busy with my mother moving to town from overseas and the other part has been caused by having such a complicated illness.

When you are healthy one day and paralyzed the next, or have a clear diagnosis or are undergoing serious treatment for a condition complete with walks and ribbons, you know what to expect. Your prognosis is clear. But even though I have something serious, it's rare enough that it's not clear at all.

I have accepted that I likely won't find a magical treatment that will put me "back to normal" (at least my normal). I've also accepted that I will probably continue to have degenerative, progressive muscle weakness. But what I'm not sure about is if that will always keep me from working?

Right now what's keeping me from working isn't my body at all, but the dizziness, fatigue and foggy headedness. Both my ENT and the neurologist think at least some of this is from migraine. The pink glasses helped and I ordered a pair of blue light blocking prescription glasses yesterday hoping that helps even more. 

My new specs - Yes, I'm a hipster

The Topamax DID NOT HELP! It made my dizziness so much worse that I had to just go to bed. It also made my headache much worse. Ugh. After three days of that BS I just stopped taking it and messaged my neurologist.

I think what will help me transition is:

• Some time to myself
• Applying for SSDI
• Talking to the new neurologist who knows more about myopathy
• Time

Chronic Illness & Relationships

Life gives us many opportunities for relationships. Acquaintances, co-workers, friends, family, pets... All touch us in some way. Chronic illness and relationships are rough.

Can't you just bring a coffee by my place every once in a while?

Once I didn't "get well soon" most of my friendships went by the wayside. If I'm really honest I would say ALL of my friendships went by the wayside. You can only cancel plans for being ill so many times before people just stop asking. And I think my friends specifically just stopped knowing what to say or do when I wasn't "cured" by whatever treatment I was trying that week.




I have a specific friend who was pretty shocked when I showed up to our coffee date in a wheelchair. And if I had the energy to sit and listen to people talk about themselves for hours then I'd still be at work. I don't blame them for dropping off. It's very hard to understand and to know what to do to help. And "let me know if I can help" isn't really help at all. It's words to make the person NOT feel helpless, useless and powerless in a situation where everyone is powerless.

My in-laws have been really fantastic. My mother and father in-law took my husband and myself to Yosemite National Park not too long ago and bent over backward to do things that would be accommodating for me. They check in on me regularly and are good listeners.

Us on an accessible trail at Yosemite in July 2019

My two sisters-in-law are also very helpful. They always understand if we need to cancel an outing or family gathering because of my health. No one takes anything personally, which is a HUGE gift.

One of my sisters-in-law visiting me right after my brain surgery. They were both there and both spent the whole day with my husband waiting. Now THAT'S LOVE!

My family is also great. My mother is looking at a house close by to me to be helpful. She now drives me anywhere I need to go, anytime. She even takes my precious dog out for walks and adventures! She feeds me, henna's my hair for me and slips my son money any time she can.

Me and my Mom. I feel very loved and supported with her.

My husband is the center of my support system and where I get the most love, understanding and help. He gets to see me at my worst and has never even blinked when I lose my cool and have a "snot" moment of hysterical crying. He rubs my feet anytime I need it, rubs my back nightly and reads me stories out loud. He works more than full time to support us and is calm, cool and patient with our 25yo son (who is temporarily back home again). My husband cooks, shops and cleans... he's an amazing man. I may have bad luck when it comes to health, but I won the karma jackpot with my marriage. 

He always has my back

My chronic illness has tried to take out my marriage many times, but it hasn't even made a dent. "Can't work, no orgasm, need to rest daily, foggy mind, can't drive..." a world of "cant's" doesn't stop our love for each other and how we always find a work around.

I know people who have had chronic illness decimate every relationship in their lives. I have much to be thankful/grateful for when it comes to the people who are really there for me every day and I feel fortunate to have them. 

When did Myopathy start?

I've always placed the start date of my muscle weakness April 26th 2018, 13 days after starting Plaquenil. My husband has felt that it was the Plaquenil that caused my Myopathy. But I had a memory the other day that places the real start date MUCH earlier than that. 

I remembered being at Disneyland in November of 2017 and feeling like I was being especially tossed around. I even told my husband that I felt "weird," like my muscles weren't holding my body in place like they should be. Upon looking back I'm wondering if that was my first sign of myopathy.

Not having a very specific diagnosis is frustrating, not having a clear cause is also frustrating, but now not even really being clear when it could have started? Yes. That's hard.

Is it just a genetic mutation that somehow got turned on? Was it the affects from my brain tumor that I'd had since at least 2015? Was it from the Latent Tuberculosis or the medication used to treat it in 2016? Is it from the Plaquenil I was put on in 2018? I may never know. 

Having a chronic illness often means endless doctors appointments, new symptoms that sprout up literally overnight and having more unanswered questions than answers. I'm slowly learning how to live in this zone of "unknown".

I may not know exactly when my muscles started breaking down, but I do know how it rules my life today. I know I can't dwell on what I used to be able to do yesterday that maybe I can't do today. And I can't focus on what I may not be able to do tomorrow. I live each day as best I can and feel grateful that I'm not in this alone. 

It's ok to struggle

This chronic illness life is such a roller coaster ride. Not just for me, but for my husband too. One moment I'll feel I've hit homeostasis and I can work with all these symptoms and challenges. Then the next something new will come along, or something will get worse and I'm tossed into a sea of frustration once again. 

A lot of the time I really do feel like two people. One healthy and able bodied and the other sick, chronically ill and immobile. More and more I feel that one healthy side of me literally dying. My husband jokingly tells me "Don't you die on me"! And I always promise to "do my best". But it does feel like a long slow death of the "healthy me".

Turning into a mermaid

To me the "healthy me" is the one who didn't need to nap every single day, who didn't have to think about the accessibility of a place before I went somewhere. Who didn't have to measure what I could do during the day in spoons (energy) and not do a lot of what I really want to because I just can't. The healthy me could eat whatever, go for a walk, hike, run, take a bath, have an orgasm and other things that I just can't do now. She's dying and it feels like a serious loss.

Sometimes that loss feels like my heart will break and I will drown in my disability. Some nights it feels like I'll just stop breathing or never be able to walk again. Sometimes I think of taking a lot of pills or drinking a lot of booze to just get the pain to stop for a little while. But I never make those choices.

Instead I choose continue to fight and swim against this tide pulling me down. I come up for air, and gasp before going down again. Sometimes I get hopeful at a doctors visit or with a new medication and I feel like I have some new floaties to help keep me above water. 

What really saves me and always has is knowing my husband is right there with me. Holding me up. Keeping my head above water so I can continue to struggle and try to learn to go along with my symptoms. Rest, recover, heal, eat well, pull back, reach out. All of these things help. But that doesn't mean they're easy. 

SHE also helps a lot. "My little nap buddy". Pulling back on work has also been useful. This week I also decided to apply for State Disability. Despite pulling back on my work week and working from home one day a week I don't want to come to a point where I wake up one day and just can't do it at all. I'm trying to be ahead of these symptoms for once and not go under the next time a big wave hits. 

All the feels

Oooooh chronic illness. You really know how to kick a girl in the butt, don't you? It has been a while since I posted because... you know... life and spoon sucking and stuff. Working 40hrs a week while struggling with my body pretty much takes 100% of my efforts daily. I'm constantly scared that I won't be able to work in the near future, but I tell myself that the only thing that would make that happen is if my voice were to be affected. Pretty much everything else I can work around. For instance, I just asked my employer for a voice to text software that will work with the programs we use.

I saw this taped to a bookshelf at a thrift store. I love little surprises like this!

I'm meeting my new neurologist this Tuesday and my husband can't come with me. I have to be a big, brave dog all on my own. I've got this! The new person is supposed to specialize in Metabolic Myopathy, so I'm hopeful. My old neurologist will also be there, so that will be helpful to have that support too.

Curious about my current symptoms? I know you are!!!

June 2019 Current Symptoms:

• STILL can't have an orgasm (that really sucks)
• Muscles shake after short burst of high intensity use
• Muscle cramps and spasms randomly everywhere
• Loss of muscle strength and energy through the day
• Feet go into tip toe frequently when seated
• Right lower eyelid spasm/twitch frequently
• Pain in arches of feet unrelated to activity
• Ptosis of both eyelids (right is worse)
• Increase in asthma sx (4 nebulizer treatments this year and 3 rounds of Prednisone)
• Occasional dry mouth
• Occasional choking
• Occasional headaches (from the COQ10?)
• Occasional constipation unrelated to food
• Occasional delay of urination (muscles won't relax)

Right now I'm on 2,800mg of COQ10 to try and help my Metabolic Myopathy (caused by a gene mutation.) Reading other people's experiences I feel fortunate to have been diagnosed so quickly. It didn't feel quick to me at the time, but for some people it takes years and years. 

Currently I'm trying to find other people with a COQ6 mutation who have Metabolic Myopathy. I've found one who I think does, but they're in India and English is a bit hard for them. I found another 5 who have very similar conditions that come super close and include COQ10 Deficiency. Of those five all are in a wheelchair at least as much as I am, if not more. Some have a breathing tube and feeding tube. That's a bit scary.

I'm glad I live in a time where I can hop online and get information and try to find other people on such a rare condition. In the meantime I have my husband and my family to share my feelings with and that's also very helpful. 

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. 

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. 

Changes I need to make

I've learned a lot about rheumatoid arthritis in the last few months. And that I'm fat. Well, already knew that I was fat. I do own a mirror. But I learned that my "excess plumpness" has an impact on my RA. I knew that the bigger I am, the more stress that's on my joints. That part I already knew. But I didn't know that it fed inflammation in other ways.
Why don't I just show you?

What I've learned that I didn't already know:
(mostly from the book Living with Rheumatoid Arthritis - no affiliation)

1. RA is chronic and systemic
2. It's caused by both having a genetic predisposition AND an environmental trigger (virus, bacterial infection, chronic infection, or other unknown microbe trigger.)
3. It's diagnosed more by ruling out other disorders than having a specific test that's accurate.
4. There does seem to be a link between TB (including Latent TB) and RA.
5. Dry mouth (and sometimes eyes) is a common symptom of RA. It's called "sicca syndrome." It's caused by inflammation of the salivary glands or tear ducts.
6. RA can cause breathing problems.
7. RA can cause you to pee a lot (especially at night) due to inflammation.
8. The joints of your vocal chords can also suffer from inflammation.
9. Cytokines are the real culprit for inflammation. They're a protein released by the immune system. They're also stored in fat cells, especially abdominal fat cells.
10. Cytokines are released when you're stressed, which is why stress can cause a flair. They're also the root cause of fatigue (that's why you feel exhausted when you're sick.)
11. Pain after sitting or when just getting up is called "gelling." 
12. Joints that shift after long periods of inflammation are called "drift." 
13. If you're in pain more than 2hrs after exercising you've over done it.
14. Irreversible damage can happen in the first 2 years of having RA. That's why it's so aggressively treated.
15. There are 5 kinds of RA treatment: NSAIDs (Nonsteroidal anti-inflammatory drugs), DMARDs (Disease-modifying antirheumatic drugs), Biologics (a subset form of DMARDs. Always injected or IV infusion), Kimase Inhibitors (taken by mouth, a type of DMARD), Corticosteroids.
16. Only DMARDs and Biologics have been proven to halt the progression of RA. Treatment with them will prevent damage to your joints.
17. It's common to gain weight when treatment is working. Inflammation speeds metabolism. As the inflammation subsides your metabolism slows. Most people think this is a side-effect from the medication. Instead it's a sign you're on the right track.
18. The more abdominal fat you have, the more inflammatory cytokines you produce (but it's also the first fat that's lost.)
19. Use coconut oil for high temperature cooking. Use olive and avocado oil for low temperature cooking.
20. Peanuts are a bean, not a nut.
21. Eat a high amount of Omega 3 fatty acids and a low amount of Omega 6.
22. A lot of RA sufferers also have a gluten intolerance (like me!)
23. Compression gloves are the best invention on the planet.
24. There's a way to modify almost anything to still be able to do it independently.
25. Walking poles are much easier on your hands & wrist than a cane or walking stick.
26. It's not hard to get a disability parking plaque in the state of California. Get your doctor to help you get one even if you don't think you'll use it. You'll be happy to have it on a flare day or when you're just out of spoons.
27. You need to protect your feet. Don't go barefoot.
28. Eating every 2 hours is best for your body.
29. If you struggle with morning "gelling" take a warm shower and do some gentle stretches when you first get up.
30. Don't try to push through something that's painful or exhausting. You'll just pay for it later. Instead stop, don't do it, or ask for help.

All of these things have had a huge impact on the way I live my life and my understanding of RA. It has been very helpful for me to learn the root causes of things so I can better arm myself to fight them and adjust to my changing needs.

My favorite breakfast.

Gluten free bread, avocado, lavender sea salt and red pepper flakes.

Peppers are good for fighting inflammation.

What you see here is just 360 calories.

The biggest change I'm trying to do right now is to change my diet, how much I eat and when I eat. I'm naturally a "feast and famine" eater. I love to go till 12 or so without eating anything, then have lunch. Then not eat again till 6 or 7. Two meals a day is perfect for me. But it's not perfect for inflammation.

Here's some foods I'm trying to eat more of:

I haven't tried the honey drink yet. 

With the exception of the honey, all of these foods are helpful for reducing inflammation, high in fiber (to make you feel full) and nutritious.

Here's a sample list of what I'm trying to eat through the day. Not all of these things, but options for each meal.

Eating every 2 hours is hard for me.

And water of course. Water, water, water, water. The tap water where we live is horrid and full of farm run-off chemicals. So we buy giant jugs of reverse osmosis filtered water. It's pretty cheap and tastes great. We even give it to our dogs.

I hope to lose about 70-80lbs. I know that's a big number and it will take me a really long time. I'm ok with that. I also know that working out every day really isn't in the cards at the moment, so I'm trying to just do what I can and watch my food. If I'm not actively gaining weight, I'm happy.