Applying for permanent disability

I've been working on applying for permanent disability since November 2019. If you're keeping track, that's just shy of six months. 

At first their algorithm instantly denied me. Then I had 60 days to contest the denial, which I never did. I didn't contest it because I was busy trying to get copies of my chart, medical records and lab results. That took four months. I also felt determined I could do it all by myself. Hahaha!

My Mama bought me this fantastic book (we love Nolo Press) and offered to help. Again and again. Finally I agreed that it would be better to get some help with his daunting process. Especially given my memory issues and the fact that OH YEAH! She used to do this kind of legal stuff for a living when I was young. 

So after two hours on hold we were finally able to find information about making a late contest and filing all over again. Filing over the phone is the option I wish I would have gone with the first time. It's always better to talk to a real person, especially if your case is complex like mine is.

The woman on the phone was great and got me an interview for today. In 90 minutes to be exact. I authorized mom to speak on my behalf and we spent the rest of yesterday tweaking the information I have compiled and readying ourselves for today.

I'm nervous. If I had been working full time for the last 10 years I would be much less so. But I only worked for money the last year. That could be an issue. We'll see!

Wish me luck. I'm sure this will be a long process.

I Keep Trying!

Throughout my multiple challenges and conditions I've (almost) always remained hopeful. I'm hopeful that whatever newest, latest thing I'm trying will help ease at least some of my symptoms. Sometimes it does, most of the time it doesn't. Here's some of the million things I've tried, why I tried it and what the outcome was.

Keeping Hope Alive

• CoQ10 1,500mg Daily - This was the first thing I ever took that helped with my muscle myopathy. I've done a lot of tweaking to find the right dose that helped my fatigue and strength. This is the sweet spot for me. I take one 300mg pill 5 times a day through the whole day. It did take about 3 months to notice any difference.
• L-Arginine 500mg - Part of the "mito cocktail" along with CoQ10, this is commonly recommended for people with Mitochondrial Myopathy. At first this didn't do a thing for me. But a year later I tried it again and WHAM! It really helps with my dizziness and fatigue. I take it once in the morning. More than that gave me insomnia. I noticed the helpful effects immediately when I began taking it again a month ago.
• Carnitine - We called it "carnitor" in our house as a joke. It didn't help and it upset my stomach, but it can help others with a mito disease. 
• L-Citrulline 750mg - Something new I'm trying. I read in a scientific study that it was more effective than Arginine for some people with myopathy. I'm not noticing a difference yet but I'll try the whole big bottle.

• PT - Physical therapy did squat for me. In fact it was harmful and pushed me too hard. I tried it for joint and muscle pain and to try and increase my range of motion. What DID help instead was doing gentle stretching on my own, especially in the morning when I wake up.
• SLP - Speech therapy was helpful, but my symptoms had improved a bit from the Arginine by the time I got in. I have a Barium Swallow Test coming up in February and depending on those results I may go back. She also gave me some cognitive exercises to do that I found useful.
• Magnesium - I find it useful for stiff, painful muscles. I take it daily and if really bad I try and take an Epsom Salt Bath. 
• Ibuprophen 800mg - Prescribed for inflammation I get little to no relief from it so I don't take it.
• Acetaminophen 500mg - I take 2 (1,000 mg) if my muscle and joint pain gets too bad. This is very effective for me. For night pain I take Acetaminophen PM about once a month. 

• Pushing my muscles with a lot of activity - Didn't help. Did hurt. Can cause the serious medical condition called Rhabdomyolysis (and yes, I've given myself this from pushing too hard). I tried it to see if I could "push through the weakness" because I read that works for some people. Not for me though! 
• Not getting enough activity - Resting to much from fear of muscle destruction just caused an increase in my cramps and spasms (not to mention weight).
• Baclofen - This has been a life saver and greatly reduced my cramps and spasms. It's a muscle relaxer that I found on my own by doing research. It's commonly given to people with MS. Luckily my doctor agreed to let me try it. It hugely improved my quality of life!
• Lyrica - I used to wake up crying from pain at night caused by my peripheral neuropathy. I thought my only hope was Gabapentin (which DID NOT WORK and I had a bad reaction to). Then my doctor tried me on Lyrica and POOF! My neuropathic pain was gone.
• Cymbalta - I've been on this for over a year for muscle and joint pain. A side benefit is it also helps with depression. I call that a win-win-win. I did have to adjust to it. It made me very foggy headed at first. But I'm very glad I "toughed it out". My pain is unbearable without it, just like with the Lyrica. 

• Plaqenil - I was given this for rheumatoid arthritis symptoms (that I now suspect might just have been the mito myopathy in disguise). It's an autoimmune suppressor that may or may not have been one of the contributing factors of my muscle weakness suddenly coming on so severely. Needless to say, it didn't work for me. 
• Naps - It always feels like a battery recharge. My cognitive functioning and muscles typically both improve with rest. I try and get a nap in every day. 
• Blue Light Blocking Glasses - Recommended by both my new neurologist and ENT for migraines (which I shockingly, apparently have). You can get them cheap online and they have made a big difference. They reduce my headache intensity and frequency and reduce my dizziness. 
• Hepa Air Filters - I credit these to my overall pretty good health while working. I would be in a small room with a lot of people who sometimes were sick. I usually would catch things at home and not at work. Now I have one at home too!

My current plan is to see if the Migrelief was helpful or not. I try and test things when I run out of them. I've also only been taking the L-Citrulline for a few weeks now so I'm giving that a chance. No difference yet. I read last night about how BCAA (an amino acid compound) taken orally can help with muscle strength, endurance, pain and recovery. I ordered this one not mixed with other crap to try in a morning smoothie in a few weeks. 

On this journey I have learned that I have to be the expert in my health. I know my symptoms better than anyone. I also need to clearly communicate with my health team about what I need and how they can help me. I need to trust myself, but also my doctors. If something helps I keep it. If it doesn't I move on to the next thing. I haven't run out of stuff to try yet and I don't think I will anytime soon. Though swimming with dolphins is something I'd definitely skip. 

I am not affiliated with any product linked, nor did I receive any kick back for endorsement.

Good Doctors and Not So Good

I've learned a lot from having a chronic illness. Specifically about the American medical system and those who work for it. I think I had some serious rose tinted glasses when it came to doctors. Overall I'd had good health and anything wrong with me had been very straightforward. Even my years of endometriosis. But when it comes to having something that there isn't a clear test for or that requires years of multiple people guessing at what's going on with you, then that's where things get more dicy.

Doctor's don't like the word "guess" even though that's what they do with me. I have a rare condition that they "think" they know something about even though all they're really doing is guessing. It's a "best guess" but still just a guess none the less. 

I've learned that some people really suck at bedside manners. Some doctors think I'm doing a "self fulfilling prophecy" and "not trying hard enough to be well" (real quotes.) Others think they know exactly what's wrong with me and respond in frustration when I continue to be sick. Some are fantastic in person and then never respond to my messages between my three month appointment wait times. Some say they're going to give me referrals for services they think will help and then don't, or do it a month+ later (typically after I message them repeatedly). 

All of this takes a ton of time and energy. I told my husband the other day that when people ask me what I do for a living I should just say "I'm sick" because it's seriously a full time job.

Because I'm a visual person I'll show you how most of my appointments start out:

And then it can go one of two ways.

Poorly...

Or

Well...

I've only walked out of an appointment once. And let me say that it took me a very long time to even comprehend that just leaving is an option. They are there for me and if they're not helping, or worse... I can always just get up and go. No need to waste my time or theirs.

In general my encounters have been very positive. Most doctors genuinely care and are trying their best to help me. Some even admit that they don't know much about my condition and are just trying their best to help my symptoms. I seriously appreciate that.

What's Working (and what isn't)

I've been challenged with chronic illness for a while now. If you go all the way back to when I contracted Latent Tuberculosis then it has been four years (2015-2019). My mother recently asked me if the time before I struggled with health was 100% for me, what percent would I be at right now. I told her 10%. For me my 100% wasn't very long ago, in fact I can remember it like yesterday if I let myself, but file that one under "things that don't help me". Should we start there? Yes, let's...

A favorite smell to spray on my bed - that works!

What Doesn't Work:

1. Dwelling on the past. Even visiting it briefly really. Ditch that mental train to the past and stay in the present or very near future.
2. Pushing myself too hard physically. I went through an understandable phase of trying to push myself as hard as I could every day. That just led to exhaustion and me feeling much worse quickly. Plus it gives others the false impression that I'm able to do more than I really can. "Invisible illness". They can't see what it costs you to over-push. This also goes for not resting enough, not using my mobility tools and trying to have sex at the wrong time of day. Pushing gently but checking in with myself frequently is what works best for me. 
3. Comparing myself. It could be comparing myself to others, or to "normal" people, or even to what I used to be able to do. I am myself here and now and that is all I need. 
4. Fixating on symptoms. Research is good and I am the expert in my own body, but it's a fine line between research and fixation. A VERY fine line that I know I've crossed in the past. My condition is rare and to me that means I have to be diligent on research. But that research can lead to me over-reacting if I don't watch it. 
5. Living too much in the moment. Planning is very helpful for me. Making a meal menu, preparing food ahead of time (my husband does a lot of that), reviewing my week, figuring out how I'm getting to appointments and who is taking me. If I'm too much "in the moment" I won't do any of that. For right now I'm still able to and I find it useful.
6. Disconnecting from my body. It's easy for me to just go on auto and completely un plug my body from my brain. Scary easy. But then I end up doing something stupid, over-doing it or just not realizing how I'm feeling. Not good. Doing things like shaving (if I feel like it) henna coloring my hair, getting a haircut, giving myself a manicure (still can!) All of these things help me re-connect to my body which is incredibly important. 
7. Eating crap. I crave junk food and really love it, but I know it's horrible for me and makes me feel terrible. Eating anything processed is terrible for me. I honestly try to eat whole, real food as much as I can. Homemade yogurt smoothies with honey, frozen berries and flax, homemade beans, fresh fruits and vegetables, gluten free foods, etc. But it's a struggle because I'm a whore for Taco Bell. 
8. Drinking alcohol. Any kind of alcohol really will just flare my pain. Plus I already feel about 3 drinks drunk all of the time anyway. So I don't need it, but I do miss it socially. Like eating crap I know if I drink alcohol I just made myself intentionally feel worse. 
9. Giving up on the medical industry. Treating my chronic illness requires a fine balance between my medical team and complimentary interventions like vitamins, eating well and resting. I've had many times where I just scream "f*&@ this shit!" And never come back to any doctor again (like after that spinal tap by Dougie Houser.) But I also know that although understandable, it's not in my best interest. So I go again and again and again.
10. Keeping my struggles to myself. There was a time when I didn't have this blog, or tell my husband ALL of my symptoms, or let anyone know how much I was suffering. At one point my neuropathy was so bad that I was up for hours each night crying because of the pain. But still I went to school the next day (and got all A's by the way.) But keeping people out and suffering alone doesn't work for me. It leads to loneliness, depression and is a strain on my relationships. 

Noticing nature - that works!

What's Working (*Today):

1. Being around family as much as I can. Instead of pushing people away I now try to let them in with heart wide open.
2. Keeping everyone I love informed about my health. If I learn something new about my condition I try and share it. And not just with my husband, but with my son and other family too.
3. Asking for help. I used to be horrible about this, but TB made me change my ways. I now never hesitate to ask for help (although I do like to try and do things myself first.) 
4. Saying "no" even to the people I love most. I'm the only one who knows how much energy I have and what I can and can't do. So it's up to me to let people know when I simply can't do something. Especially when I need to rest. 
5. Making my health a priority. Not work, not my son, but my health. If I want to be there for others then I have to take care of myself first. This is also something that took me a long time to start doing because I get a lot out of helping other people. Heck! It's what I went to school for 10 years to do!
6. Keeping hope and an open mind. It's very easy to lose hope in my situation. Struggling with something rare, that's a moving target is a real challenge to treat. But there are hopeful clinicians out there and I'm lucky enough to have found a few. I also have a very hopeful family and that's awesome.
7. Caring for myself in every way I can. So yes I try to care for my body. Wear the right shoes for stability and support, take my medications when I need to. But I also try and take care of my mind. Connect with people I love, write a blog, read a book, fart off on Pinterest... These are all ways I take care of myself. Oooo! And I'm becoming an avid collector of soft lounge clothes. And did I mention my adorable new pink purse?
8. Savoring the moment. Not getting too far ahead or behind the time. Noticing the hummingbirds outside my window, a perfect dandelion as I roll with my dog, her sweet breath as she sleeps. All these precious moments would be easy to ignore, but by noticing them I'm keeping myself mentally well and grounded in the present. 
9. Stressing patience. I used to be a very impatient person. But when I have a three month wait till I see my neurologist again, I had to learn how to be patient. If not I'd go insane. So I learned how to breathe, relax away that tension and release those expectations. 
10. Expanding my identity. My job was a huge part of my identity. Losing that was a big blow. As I told my family the other day "I lost my job and the ability to drive in the same week". Considering I've been driving for 30 years, that was a big loss too! So the best way to help myself with that loss is to explore new identities. I used to do art so much that I considered it a big piece of my identity. I lost that when I took on "student". Same with "writer". These are two that I can re-claim. When I was working full time I couldn't garden as much. Now I can do a little and it's something I enjoy. I'm enjoying the process and it makes the loss of my other identities sting a little less. 

A nap with my girl - always works!

Not Alone

When you're battling a chronic illness it's very important to learn that you're not alone. I recently joined a Myopathy Support Group online. Many people in the world struggle just like I do with something not so cut and dry to diagnose and that has no real treatment. 

Here's a sample of what I found relatable and helpful when it comes to myopathy.

"I’m similar to you, acquired myopathy due to steroids and/or cyclosporine for another medical condition but other extras sprinkled on top to keep life interesting"

"After reading your story you have my admiration. Mine seems to be through having RA. I'm in the same situation concerning work.. still waiting for some sort of help off the medical profession."

"My doc claims mitochondrial also and put me on coq10. Now i am a bit freaked. My ins refuses to pay for dna testing. What now?"

"Lyrica is my life saver as well! No idea what I have either; many strange, wrong diagnoses. I've come to accept that I'll never know. I don't care anymore."

"I’m going through a similar situation but doctors keep passing me around. At first I had mitochondrial myopathy. Then it’s fibromyalgia. Then it’s all three. Mitochondrial myopathy, fibromyalgia and ddd with herniated discs and spine tumors with stenosis."

"I've first was diagnosed with myopathy in 2012, the doctors couldn't quite determined which kind of myopathy i have, i started going to different doctors and it really got a toll from me and i felt really down... for such an optimistic person like me being down was the worst thing i could think of, so i decided to just stop! I said to myself if i get into a sick person state of mind and let my disease define me that's a terrible situation, worse than the actual disease...so i lived my life regularly on some kind of deny, some kind of a lie i tell myself...for about 5 years... but with recent changes in my life and in my mind, now i feel strong enough to deal with anything life will throw at me, and do it with a smile on my face and thankful for the things i have in my life, not thinking about what i don't...  sooo, bottom line... this is the tip of my story... nice to meet you all, I'm taking my genetic tests hopefully really soon...if you have any tips for me regarding life style nutrition or tips in general i'd love to hear them."

"...So I'm ready to just be done. I'd like to get back to my life and as of October 6th I'll only be seeing my docs for yearly progression checks and that's just fine with me. It was just getting so daunting to try to live my life in between doctor visits so I'm just going to NOT do it anymore."

"So if your dna testing came back unrevealing, does that necessarily mean you don’t have myopathy?"

"OK I have been posting about food. And at this point in time I am taking guesses as I cant afford the DNA testing. But my doc suspects its animal proteins..."

"Hi. How does everyone cope with the leg muscle pain. Can't believe how bad it gets... The pain can cause you to question your sanity"

"After 41 years and getting a diagnosis of what was causing my muscle weakness (myopathy); my doctor told me there’s nothing he could do for me. He did explain that my body doesn’t process ATP, the final breakdown of carbohydrates into all the cells in your body. Also, I had severe exercise intolerance, no endurance or energy and extreme fatigue."

"Anybody see the Netflix show Diagnosis? First episode was a girl with Myopathy. I knew it almost immediately it was a metobolic myopathy. No dr had ever mentioned it or offered genetic testing... NOTHING. Breaks my heart people with rare disorders have to get picked for a show for help. I have had to do my own work and know more than most drs about all these disorders now. That is just sad to me. I know they can't know every disorder off the top of their heads, but she suffered for years and years... Like most of us, I suppose."

"I was originally referred to a neurologist because my gp wanted me to have a muscle biopsy. I had been having severe muscle cramping and severe leg and arm weakness...I don’t know what to do and I almost feel hopeless."

"out with family but legs feel weak have hard time walking even with sitting for a but feel like legs could give way (but some how they keep me up)"

"-it never stops going to appointments, I like my weekends, I take them seriously, September 3rd I see the surgeon to schedule muscle biopsy but my neuromuscular doctor also wants me to see a dietician, i also see 11 other doctors for other issues but I'm exhausted, you all must be exhausted, I am.."

"I've quit chasing answers. I was able to retire on disability. My wife is a teacher and works but I still have kids at home. One in college. I was chasing answers from Ohio then on to University of Michigan, a VA Hospital in Michigan, to John's Hopkins in Maryland and they sent me to a Mitochondrial Specialist at University Hospital in NY City. (there are others) 
I've been miss-diagnosed several times like some of you, ALS, MS, and then Mitochondria Myopathy. I do have Myopathy and Neuropathy confirmed from two different muscle biopsies and other test. I'm a diabetic as well. Whatever I have I quit chasing it. Too much money in medical bills. 
My family doctor and I just treat symptoms. I take coq10, vitamin D, Tramadol, magnesium etc. I've tried many creams and other remedies for muscle pain and cramps. I do feel better than I did 7 years ago but I have to pace myself and plan activities ahead of time.
I have to have my sleep and rest or I won't make it through the day.
I am exercise intolerant and very heat sensitive.
I use a cane for short walking and a scooter or power wheelchair for longer distances.
I'm just sharing so everyone knows your not alone."

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. 

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.

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.

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.