Words Matter

Since entering the world of chronic illness I've noticed something disturbing in the language used to talk about it. Who hasn't heard "She's battling Cancer." Or "He's fighting addiction." Like we're all soldiers who signed up for some unseen war.

This goes for diseases like Rheumatoid Arthritis, Multiple Sclerosis, Lupus and many other life-long, life-changing challenges. And don't get me started on the terms we use for adaptive equipment like "wheelchair bound."

You know what? Words matter. I'm not battling myself. I'm not even fighting. Want to hear the true definition of fighting according to Websters English Dictionary?

1) Take part in a violent struggle involving the exchange of physical blows or the use of weapons.

2) Engage in a war or battle.

3) A violent confrontation or struggle.

Ummm, yeah. See the issue?

This doesn't describe my body, my life or my attitude at being as healthy as I can be. My immune system is over-eager and is mistaking my own tissue as not belonging to me. End of story. My challenges come from my own body. I don't want to be "violent" toward my body. I don't want to "struggle" with it either. I want to have kindness, love and nurture myself. That's what it needs. That's what I need! My body and myself are the same. If I fight my own body, I'm fighting myself and that's just the opposite of helpful.

And what do we say about people who die of an illness? They "lost their fight with cancer." Seriously. I've read that and heard it said many times. To me that implies some kind of defeat. If you dig even deeper it implies that they gave up or just weren't strong enough to win. And what do we say of people in remission? "They are a survivor." That's just twisted when you really stop and think about what those words actually mean.

Battle      Brave     Survivor

War         Lost       Losing

Fight       Fighting

Struggling

Words matter, so think about how words make you feel and what words you'd rather use about your very own personal disability.

But don't take my word for it. Here's an excellent article from a brilliant woman who passed away from her cancer. You can also easily replace the word "cancer" here for many other illnesses.

Better with Bling

I'm a big believer that all things are better with some bling. 

"Meg," my new Rollator is no exception to that rule.

I went to a local craft store today and found these rhinestone stickers. I put them over her screws to make them pretty. I also found this mermaid scale pattern duck tape. 

There are some tags on her that I was told not to remove. They didn't say anything about covering them up with mermaid scales. They really need to be more specific about such rules.

I think she looks beautiful! 

I also ordered these hooks today. They're meant for strollers, but will work great for my purpose!

I realized I have 3 purses with sturdy metal side rings meant for attaching an optional arm strap. Instead I can clip them onto the front bar of Meg for when I'm out on the town. I like the purple ones a lot.

It's important to not only have the right tools that you need, but to also feel good about how they look. Like a lovely pair of glasses on a beautiful face, customizing my tools is a real mood lifter.

Back Breaking Work

My back MRI results came in very quickly. As for the MRI itself, let me just share that it was my second experience ever of having my back hurt so much that it went into spam. A 90 minute full back MRI is no joke. I used every self-soothing resource that I had in my big bag of tricks and still almost had a full panic attack (just from the pain.) I'll be avoiding those in the future as much as I can. But, the results were useful.

Always make yourself a "cheat sheet!"

My back isn't much worse than it was 17 months ago. The biggest changes were in my lumbar area. I have a fissure (that's new) and a "disk protrusion" that's hitting a nerve. That's coincidentally the most painful spot in my back. 

The results can be very hard to read, so I found "mapping it out" on a spine printout to be really useful. I'm not a doctor and always have to look up what all the words mean and turn it into English. Then it goes into my personal medical binder for future medical appointments.

The bottom line is that they found nothing that would explain my muscle weakness and muscle fatigue. That means it's likely not coming from back problems, but from something else (like RA?) 

This Wednesday I see a new neurologist, so hopefully she'll have some more insight into the mystery that is my body.

Mobility Help - Part 2

Yesterday was a big day. My husband and I went out and bought my first Rollator. I named her "MEG."

Me and Meg hanging out together yesterday.

She's a 16lb light weight, foldable Rollator. I like the fabric back better than a padded bar. The seat is also padded. You can see in the above picture that you can fold it up when walking to give you more leg room. I have long legs, so that's great! She's also plenty wide for my ample backside and very comfortable for sitting in (the main reason I got her.) 

MEG

She's VERY easy to push, so at least for now I don't think I have to worry about my arms and hands being over fatigued. I have a physical therapy appointment this Friday. I'll bring her with me to make sure I'm using her in the most ergonomic way. 

She's also a beautiful blue/grey color (like a shark) which is also where she gets her name from.

I'm VERY excited to see this new shark movie "Meg."

I ended up just buying one instead of renting. In my area renting one was about $50 a week, but buying was less than $200. If I was pretty sure I was going to need it longer than a week it seemed foolish to flush a quarter of the cost of buying on a rental. Also the ones available for rent were small and not in great shape. It was very helpful for me to go and see them in person and try them out to really know what features and size would work best for my needs. That's the down side to buying online (even though there are some really cute ones online!)

When I got her home I cleaned her off (she was a floor model and caught my eye right when I walked in the door of the medical supply store.) She was pretty, tall and had a cushy bottom... JUST LIKE ME!

My tricked out ride

She didn't come with a basket or under-storage because then the seat couldn't flip up for walking. I could have added one, but I found something even better. One of my favorite bags that's sturdy and made out of seat belts attached perfectly to the front bar. I can even still fold it flat with the bag still attached. I might try and find some thick carabiners or hooks instead of the strap, but for now it works great. 

Here's how I knew it was time to get some mobility help:

1. I would say "THANK GOD" when I would find a chair I could take a break in while out shopping. Loudly. Every... time...
2. I was avoiding stores because of their size.
3. I was waiting in the car while my husband went into a store because I was too tired and they wouldn't have anywhere for me to sit and rest if I needed it.
4. I would get anxious and upset about a place not having chairs, or when I couldn't find a chair I could sit in.
5. I would push myself to walk till I wanted to cry (then I'd cry at home or in my car.)
6. I would see a long line and cringe (or leave without buying what I came for.)
7. I was changing plans to avoid walking too long.
8. I would be happy and grateful to sit on the window sill of a shop (not that my butt fit, but it was better than nothing.) 
9. I wanted to yell at someone if they got to a public seat before I could (ummm, it's not MY seat! I have to share.)
10. I was limiting how much I could buy per shopping trip because I didn't have the stamina to make it in the store for very long without taking a break.

My new kitchen stool arrived yesterday too! My husband already put it together for me and I used it last night while we were cooking dinner. It's fantastic. I feel all ready to go now.

Fantastic kitchen helper

I'm still working out every day and trying to watch what I eat. I'm determined to help myself out as much as I can. 

So far my needs/ability looks like this:

• Around the house, small store, around the block or 1 errand - I can walk alone. 
• Really big store (like Ikea), multiple errands, standing for a long time (like in a line) - I need Meg.
• Huge store (like mall), big store after exercising or large place (like the zoo, downtown or a big park) - Meg, or I'll need mobile help like renting a scooter or wheelchair.

I am going to talk to my doctor and check with my health insurance company to see if they'll reimburse me for some of the cost of Meg (or better yet, ALL!) But even if they don't it was very worth it. 

Just the 1 store we went to after I bought her was a great experience. Before Meg I would have just sat in the car and waited for my husband while he went in alone (or pushed myself and been in pain and miserable.) But this time I went in with him and just sat down when I got tired. He kept looking and I was close by. It was great! I had zero stress too about if the line was going to be long or that they didn't have a chair. It was one of those "I didn't quite realize how bad things had gotten till I had what I really needed" moments.

Reminder to self: Don't let things go. Get the tools you need when you need them. 

Mobility Help

It has become clear to me that I'm in need of occasional mobility help. My muscle weakness/fast fatigue isn't getting any better. Any level of exertion just makes it much much worse. Even low impact activity like in a pool leaves me totally exhausted and "weak" feeling.

I used an electric cart for the first time yesterday and wondered why I waited to long to try it!

I wish every store had one.

But what device do I need? How do I choose? And will using one just make whatever's happening worse? It's important to me to choose the least invasive one so that I can still get exercise, but I also don't want my limitations to keep me home, or have me turning down invitations to be out in the world. It's a very tricky balance.

Funnily enough the most useful information I found about mobility options was through the National Multiple Sclerosis Society. It's a brochure titled "How to chose the right mobility device that's right for you." Now why they think this is only an MS thing, I have no idea. Many challenges can affect mobility and I thought they did an excellent job discussion options that were relevant to anyone, not just those with MS.

I found page 7 and on to be the most useful. I really like how the brochure breaks down each device into "What are the benefits - What are the limitations - How do I know weather this is the right device for me." Because of this helpful brochure I'm thinking of renting a "Rollator" to try for days we have more than 1 place (or 1 big place) to be.

This is a rollator. It's a walker with a seat.

Muscle weakness and fast fatigue are my main issues. I need a place to sit when I start to tire (which happens pretty fast.) Not being able to find a seat not only causes me pain, but it makes me really anxious. Last Sunday we were in a huge antique store and I swear that every chair had a "please don't sit" sign. It was like torture. When I finally did find a designated "rest area" I treated it like my home base. Yes, it significantly impacted my enjoyment of the outing. Had I brought a rollator with me I could have just sat whenever I felt the need, then kept exploring after I rested a bit.

Here's what the brochure has to say about the rollator:

How do I know whether a walker or rollator is the right mobility device for me?
A walker or rollator might be indicated for you if: 

• you can walk by yourself but feel that you need extra support for balance on both sides of your body
• you find that you are continuously holding onto the walls and furniture within your home for support
• you have good arm and hand function to move the walker or rollator forward while walking
• If you occasionally get tired and require frequent rest periods when out in the community, a rollator with a built-in seat may be a good option for you. 

It may be time to be evaluated for a more appropriate mobility device if, while using a walker or rollator, you: 

• hesitate to participate, or stop participating in the activities that you want to do in a day
• are falling or have a fear of falling
• are unable to independently walk with a walker or rollator for short distances in a reasonable time period
• are experiencing back, shoulder, arm, and/or wrist pain
• become very tired after walking short distances with a walker or rollator

That last one has me worried. My muscle fatigue might be so bad that:

1. Pushing it is too hard for my arms.
2. I'm just sitting every 20 steps or reluctant to get back up.
3. What if it hurts my hands too much or my grip isn't strong enough to push it.
4. It could be too hard on my back.

I have my upcoming medical appointments where I hope to get some answers and help. In the meantime I am finding that I'm limiting myself, my outings, what I do when and where because of mobility. I don't want to do that.

My plan is to look at renting a rollator for a month or so and see how I like it and how it goes. If it's a magical tool that is hugely useful, then I'll buy my own. If I'm unable to use it consistently or it's too tiring for me, then I'll look at trying out something else (like a scooter.) 

As far as mobility around my house I'm still golden. Hooray for a little house! The only exception I've noticed it when I'm standing for any period of time in the kitchen. My husband bought me this stool that I think will be a major help though. It also doesn't look out of place in a kitchen.

The hardest part about mobility is knowing what I need now. For how long I'll need it and will that tool keep me from using my muscles which will make my situation worse. I honestly don't care about what people think or how it will look. I just want what's healthiest and safest for me. And what will keep me out of my house and enjoying life as much as any introvert possibly can. 

The Last Time...

I've been having the feeling lately that there are many things I'm doing "for the last time." I'm torn between being at peace for this because of the pain and discomfort they cause and mourning the loss. Let me be more specific.

Last week I used a branch saw to trim back the neighbor's rosemary plant that was trying to eat our garden. It's something I've done many times before and never thought much of it. The saw is very sharp and it doesn't require much effort. But after 10 minutes I could barely open my hand back up. Yes, I had taken Ibuprofen before this. I told myself it was the last time I would even use that saw (or one like it.)

Sweet girl and her healing lovies.

Yesterday I went to the ZUMBA class at my gym. It's something I used to super enjoy and I've been trying to go slow and still do the moves. Well, both last week and this week the effort left me sore, stiff and with serious lower back pain even 24 hours later (and totally exhausted.) I think even with modification the moves are just too much for me (at least for right now.) I'm going to stick with Tai Chi or the pool.

Although neither of these activities are something I can't live without, they have one thing in common. They both felt very much like "LASTS." As in "that's the last time I'm doing ZUMBA." And that sucks.

I'm telling myself that this could be temporary and that my new rheumatologist could come across with some wonder drug that will wipe out RA (and not re-activate my TB.) But I also am aware that the opposite might be true. That this could just be a new way of being for me.

I am determined to embrace the CAN'S and move on away from the "cant's." But I also can't stop myself from wondering how many more "lasts" are in my future?

Trying to keep fit

A haiku to exercise:

workout 

red face

this sucks

Post-workout today

And yes... my tongue is doing much better!
Saltwater rinses are magical. I just had to keep up with it. 

I'm proud that I've been keeping to my goal of doing some kind of workout daily. Yesterday was physical therapy (where the PT said I gained 4% mobility in my neck! YAY!) Today was a ZUMBA class at my gym. Even doing it at a very low impact I could just manage 45minutes instead of the full hour. It's ok. It happens. I was awesome. Pitbull would be proud. 

Tomorrow is "my choice day." That means I can either go for a swim or do my Tai Chi for arthritis video. I think it will depend on my energy. If it's low I'll do the video and stay home. Feeling good = gearing up for a swim. If I'm feeling completely saucy there's an aqua aerobics class at my gym at 8AM, but that's a shot in the dark.

I'm worried that if I don't do as much as I can while I can that I'll lose what muscle I have. I can feel my stamina and strength just draining every day and it's a freaky feeling. So, I'm working hard to do what I can to keep myself going. Keep smiling, keep dancing, keep swimming and modify when I can.

A Spoonful of Hope

Spoons come and they go. They are coveted and fleeting. I never have as many as I wish I had and I struggle to use what I do have in a way that enriches myself and those I love. I ask myself all the time now "does this matter? Is it important? If I can't answer "YES!" Then I really can't afford to spend a spoon on it. Sometimes even if it is important, I just don't have any spoons left.

This weekend was very full. It was my sister-in-law's 50th birthday party and Father's Day. I knew it was going to be busy, full and stacked high with importance. I tried my best to rest up and plan my spoons as best I could. But the tricky thing about chronic illness is that spoons don't work that way. You can't stockpile them and save them for really important moments. Even though I try.

Spoons are like most things in nature. Fleeting and unpredictable. Saturday was good. I tried to not "over do it" at the party so that I'd have "plenty of spoons left for Father's Day." Forgetting that it doesn't always work that way. So Sunday came and I was wiped. Not enough spoons to celebrate it "the way I thought it should be. The way I really wanted it to be. The way I thought my husband deserved." Of course this all led to me feeling "not good enough, frustrated, upset" and even more exhausted today (despite my wonderful man literally taking me home and sticking me in pajamas after I just couldn't be out anymore.)

Despite my best efforts I let "should" take over my "can." I stubbornly refused to listen to my body till I was on the verge of tears. And when I felt like I was "ruining my husband's day" he just gently assured me that I did no such thing and that he was very glad that I told him I had to go home and couldn't be out anymore.

Nature teaches me to listen and watch. To have awe for the things I can do and patience for the things I can't do. To savor moments as they pass because (like spoons) anything worth treasuring will for sure be temporary. After all, everything is temporary. 

Even though I'm exhausted today, I'm hopeful. My doctor got me a new rheumatologist and I'm seeing him a month. This is the first time a specialist got me in to see them in less than 3 months. I'm grateful to be expedited. 

My upcoming "tour of immunology" looks like this:

This Thursday = full spine and neck MRI (it also happens to be Summer Solstice)

June 27th = new neurologist for my neuropathy

June 29th = my 3rd physical therapy appointment

July 13th = back to my primary care doctor for a check in

July 19th = first appointment with my new rheumatologist

When my physical health is compromised it's easy for my mental health to try and follow. A helpful trick is to list 3 things that I'm grateful for each day. So here's my 3 things for today:

1) My husband, his support and love. He helps me take care of myself and makes me smile.

2) My dogs. My little one always know when I need some rest and she loves joining me in bed.

3) "I Love Lucy" - one of my favorite shows. Laughter is great medicine.

(And one to grow on: That I have health insurance! Always grateful for that.)

This little piggy

When I saw the rheumatologist back in March she asked if I was having any trouble with my feet. I honestly answered "no." I think my feet must have heard me and shouted back "ALL CLEAR! BRING ON THE RA FEET!" Because literally since then I've been having problems.

How my feet look today - June 16, 2018

I've had mystery swelling, bruising, sharp pain in my right ankle and the balls of my feet hurting after walking only a few steps (metatarsalgia). The scariest of all is it looks like my toes are starting to "migrate/drift" (especially on my right foot.) 

My physical therapist approved the men's Teva sandals that I live in during the summer, so that's good. At least I know my shoes aren't to blame (or making the problem worse.) 

I messaged my doctor and sent him a picture (a new feature that I LOVE!) I'm trying to get in to a new rheumatologist sooner rather than later. I feel like my symptoms are progressing really fast. I also feel like I'm not having "flares" but more constant issues. And of course I'm exhausted all the freaking time. 

I'm trying my best to stay in the present moment and not let worries overwhelm me. It helps that we have a big family party to go to tonight. I'm looking forward to doing something fun and seeing our family. 

Life Hacks

Today I tried out some helping hand hacks that I've been reading about. I stopped by our local "dollar store" and picked up these small rubber bands and foam curlers to turn into grip aides.

I removed all the plastic and bagged them up.

Some of the blue foam I cut smaller and put in my purse. The pink ones are already a good length. I thought it would be good to have on-hand in case restaurant silverware is small and sharp (already something I've encountered.) Now they're all bagged up and ready to use.

Curious what I'm going to do with those tiny rubber bands?

I read about putting them on lids that are harder to open (like nail polish bottles.)

It really is a helpful hack! It makes them much easier to open. It was a bit tricky to get them on though. I think a lot of people may need someone to do this for them. I found it so helpful that I decided to put it on my most used "slick" cosmetics.

You can see I used quite a few on each. 

As for the foam rollers I put one on my favorite pen and toothbrush. The holes were too small for my toothbrush, so I cut it down the middle and slipped it on. It didn't work very well. I think for fatter handles it would be better to buy special arthritis grips.

Everything on rollers is WONDERFUL!

Another modification I've made is getting as many things as I can on rollers. Pushing and pulling is much easier than lifting and carrying. It's also easier on my hands. I adore my wheeling clothing hampers. I realized after my swim at the gym that a regular gym bag no longer does it for me. It's way too heavy when it's full of wet things. Enter the $29 roller bag.

Making modifications, changes and hacks has been hard actually. I keep feeling like "I don't need any of this YET!" But I noticed when I do use a tool or change things it feels so much better... than I have a little "oh" moment. I remind myself that I don't have to struggle unnecessarily. I can make changes that make things easier. 

Invisible Disabilities and Their Lessons

My son has a form of high functioning Autism. Being his mother has prepared me well for living with a chronic, systemic illness. His disability was also very invisible to most people. I learned fast to educate myself as much as I could about his disorder, his needs, his medical appointments and specialist appointments, his therapies and how to help him overcome his challenges by leaning on and building his strengths. All of those skills are completely transferable to my situation (and any chronic illness condition really.)

My son is now 24 and is a wonderful advocate for himself. Here's some things being his mom has taught me that's relevant to dealing with any chronic condition:

1. Document EVERYTHING! Keep your own records and keep copies of anything important. I have my own binder where I keep research studies that apply to my health, important test results, handouts doctors give me and referrals from my health insurance.
2. You won't know if you don't ask. I never assume that I won't be able to have something unless I ask. I got my son excellent occupational therapy when he needed it and now I'm in the process of doing the same for myself.
3. Work around your disability. There are some things that are still hard for my son like tying his shoes or riding a bike. He wears slip on shoes and loves to walk everywhere. I'm no different. Carrying heavy bags is hard for me, so I'm more and more getting big bags with wheels that I can push or pull instead of carry.
4. Be organized about your medication. A weekly pill box (the kind with the days of the week on it) is all I need right now. But in the past I've used alarms, individually labeled dose bags and other tools to remember to take my medication. My son also has a system that works for him. It's all about finding a routine that works for you and sticking with it. What works for him is a tray that he keeps his keys and wallet on next to his pills. Then before he leaves every morning he takes them.
5. If someone tells you "no" ask "why?" I don't take no for an answer and need to hear the logic behind the "no." Sometimes I can even change their mind.
6. Don't be embarrassed of your disability or shy away from advocating for yourself. My son is brave, amazing and will talk very openly about having Autism. He disclosed to his employer during the interview and got the job anyway. It was something we talked about before hand and he felt it was important to be transparent because it's such a big part of who he is. With an invisible challenge there's a pull to hide your needs and not disclose. My son inspires me to advocate for myself instead.
7. Educate yourself as much as you can. Knowing all the language about Autism (words like "stimming," PDD-NOS, DSM, comorbid...) was very important when talking to professionals who could help us. It's a shared language that made them take us seriously and quickly communicated what we needed. Now I'm doing that for myself with RA. I could say "I'm having tingling in my arms and legs" or I could say "I have stocking-glove pattern neuropathy." Both basically mean the same thing, but the second is in a language my neurologist will understand and respond to.
8. Find good friends. If someone didn't want to be his friend or wasn't interested in him, my son couldn't have cared less. He moved on till he found people who did. Subsequently he has a very large social life and some truly wonderful friends. Many have been there for him for years and years. I on the other hand tended to draw people who would just take and take from me. Over time I just didn't have the spoons for that kind of a relationship anymore and I moved on.
9. Always think the best of people. My son is incredibly kind and is always there to help other people. He's told me some amazing stories of seemingly small things he's done at work (like comforting someone whose having a bad day.) He has a gift (like his father) of seeing the good in people and brining that out in others. I tend to be much less trusting and keep more to myself. It's something I'd like to change though.
10. Give things a try. My son trusts his doctors and always at least tries what they suggest. I on the other hand sometimes feel like I know better and am hesitant to trust my doctors. I'm trying to let other medical professionals in and allow them to help me, but it doesn't come easy to me. 

My Health is My Job

I had my first physical therapy session yesterday. I tried to keep any open mind and I'd say it went well. I learned quite a bit and am glad that I went. I'm going to go back once a week at least two more times and then see how things are going. We're focusing mostly on my neck and lower back (lumbar.)

(He's recommending I see an OT for my hands)

It was helpful to me to get another point of view on my body. The physical therapist was very knowledgable and said I'm having "systemic problems." Yup... I knew that one. It also inspired me to make a commitment that while I'm not working I need to treat my health like it's my full-time job.

My plan looks like this:

1. Continue eating a lot of fresh fish, vegetables and good foods
2. Workout in some way every day (Tai Chi for Arthritis video, swim at my gym, go easy in a fitness class, walk, whatever I can do that day)
3. Get plenty of rest
4. Drink lots of water (but not right before bed!)
5. Go low carb and high fiber
6. Keep in communication with my doctor and make my needs known
7. Attend all appointments, labs, scans, tests and try to keep an open mind
8. Be kind to myself, go slow, be patient and understanding
9. Let others help me when I need it and ask for help when I need it
10. Not keep my challenges to myself

I find planning and making goals to be really helpful. It makes me feel like I'm not just idling while I wait to start my new job. I like the feeling of "proactivity." I'm also ok to constantly refine my goals and adjust them to what works and what doesn't. For example I recently ditched "juicing." I love the juice and it was a good start to my day, but I just didn't have the spoons to spend 20 minutes to make 1 glass of juice. The cleanup alone was exhausting! So I modified my plan and I now buy a green juice with no sugar already made from the store. I'm sure it's not as perfect as making it yourself, but I modified and went with what I could do.

My husband and I have fallen into a great rhythm in the kitchen with dinner time. He handles anything too cold (because my hands are super temperature sensitive) and does all the chopping. I do the main protein and carb. This also keeps us on opposite sides of our dinky kitchen and out of each other's way. It's something I really enjoy doing and it works great for both of us. 

Life is all about learning and adjusting. Letting go of what no longer works for you and learning new ways to expand on what does. These last few months have been a major time of change, but I think I'm coping with it pretty well.

O Me! O Life!

O Me! O Life!

BY WALT WHITMAN

Oh me! Oh life! of the questions of these recurring,

Of the endless trains of the faithless, of cities fill’d with the foolish,

Of myself forever reproaching myself, (for who more foolish than I, and who more faithless?)

Of eyes that vainly crave the light, of the objects mean, of the struggle ever renew’d,

Of the poor results of all, of the plodding and sordid crowds I see around me,

Of the empty and useless years of the rest, with the rest me intertwined,

The question, O me! so sad, recurring—What good amid these, O me, O life?

                                       Answer.

That you are here—that life exists and identity,

That the powerful play goes on, and you may contribute a verse.

Rheumatoid Cachexia

I think I might have found what's going on with my muscle weakness. Last night I stumbled across something I've never heard of before called "Rheumatoid Cachexia."

The Cliff's Notes version of Rheumatoid Cachexia is that it is muscle wasting in people with RA. Sadly it's most common in people newly diagnosed with RA who are also overweight (ding ding ding!)

I found this blog on RA where the author says this about her experience:

"Almost overnight, I went from lifting 50 pound bags of concrete mix or fertilizer to being unable to hold onto a glass of water." 

Her story completely mirrors what I've been going through. One day I can work in my garden and the next I can barely shampoo my hair. Funny thing is my rheumatologist told me that muscle weakness doesn't go with RA. Did I mention how much I'm looking forward to getting a new rheumatologist? I have a message in to her about all of this but my expectations are very low. About as low as my current physical stamina.

(Me being a mermaid a few years back.
Testing out my underwater camera before we went to Iceland.)

I read that the best way to fight the cachexia is through "resistance exercise" and eating a lot of fish. Checkmark on the fish increase. We've been doing that for a few weeks eating it about every other day.

(Our delicious cod fish tacos that we had for dinner last night.
I like to steam my cod in my rice cooker. It's super easy and doesn't make the house hot.)

As for the "resistance workout" part, I have my first physical therapy session tomorrow. I also still belong to a gym that has a heated pool. I need to get back in it. Swimming and aqua aerobics is fantastic for health and mobility challenges because it's easy on the joints. I can get resistance and still keep it low impact. 

I also asked my PCP if we should re-do my back images since the last ones were done 17 months ago. He agreed and that's on order. More time in the "fun tube!" (My pet name for the MRI machine.) My husband and I joke that we need to make t-shirts for the medical center that we have to go to for all our scans and testing because we're there so often. I think that would be hilarious. He said we could have the name on the front and "Let's hope it's negative!" On the back.

Humor is so important.