Is it or isn't it?

Back in April of last year I was diagnosed with Rheumatoid Arthritis (RA). But recently I've started doubting that diagnosis. I think the symptoms of RA mirrored what could have really been Metabolic Myopathy.

Symptoms of RA include:

• Fatigue
• Pain
• Swelling
• Redness
• Joint Stiffness (especially in the morning or when getting up after sitting a long time)
• Joint Warmth
• Loss of range of motion
• Both sides of the body usually affected the same
• Anemia

The symptoms of the type of Metabolic Myopathy that I have (Primary Coenzyme Q10 Deficiency):

• Fatigue
• Weakness
• Muscle spasms (dystonia)
• Poor muscle tone
• Progressive muscle stiffness
• Abnormal eye movements
• Some other serious stuff I don't have like seizures and kidney failure

What led my Rheumatologist to think I had RA was an abnormal MRI on my right hand (some water retention and swelling) and some abnormal labs. But now I'm wondering if that also couldn't have been MM? 

My muscles have been hugely affected lately by the bronchitis I came down with. Something that my Neurologist said could happen. Last night my hands hurt so much it woke me up multiple times. My hands hurting is one of the first symptoms of RA that I had. But when I thought about it I'm not sure it was a joint pain hurt. It felt more like it could be the muscles in my hands.

The same thing happens to the bottoms of my feet. It can feel like I've been walking all day over rocks and in reality I hardly walked at all. It's very strange. Another major symptom for me is my peripheral neuropathy. As far as I can tell MM can cause that. RA does not. I always assumed it was a side effect from my TB treatment, but now I'm not so sure. Of course I could just also have both (gag).

I'll have to talk to my doctors about all this and see what they think. I'll be curious of the hand and foot pain get better when I'm 100% no longer buggy. 

December Symptoms

I noticed it has been a very long time since I shared my symptoms here. Not since July to be exact. 

July, 2018 Symptoms Blog Post

May, 2018 Symptoms Blog Post

I also noticed that back in July I talk about using Meg, my rollator. She's become like another limb for me. It's really hard to imagine it has only been 5-6 months that I've been using her. Now I consider "only using Meg" to be a very good day. Anything more than a 1 store stop and I need more than just Meg.

So here's what I'm currently struggling with: 

•   Instability when walking in both legs. 


•   Gradual muscle fatigue when standing and walking in both legs.

•   After apx 420 steps extreme leg muscle fatigue. 


•   After apx 420 steps thigh muscles start shaking with muscle fatigue. 


•   After apx 420 steps legs muscles feel strained and mildly painful as if they had major exertion (like ran a marathon.) 


•   After apx 420 steps face and body break out in cold sweat (takes hours to recover from the feeling of major muscle exertion.) 


•   Frequent muscle cramps, twitches and spasms: arms, legs, arch of feet on the bottom, torso, right eye. 


•   Bottom of feet feel sore like I ran a marathon. Deep muscle ache. Especially in the morning and at night. 


•   Not able to sexually climax since muscle issues started. Muscles fatigue too quickly, even with pillows 
and support. 


•   Minor muscle weakness in right hand when compared to left. 


•   Arms fatigue (again, feel strained as if they had major exertion) when: brushing teeth, shampooing hair, cutting food, cooking, pushing a broom, minor activities like shopping. 


•   All muscles start off at normal strength, but fatigue with use much faster than typical. 


•   Constant back, neck and right shoulder pain. 


•   Constant stocking glove pattern neuropathy managed with Lyrica. Began 2015 post Latent TB Treatment. 


Treatment/Modifications: Rollator, transport wheelchair, electric wheelchair, reduction in house chores, rest in between activities, major reduction in physical activities, use electric scooter shopping carts, hot water bottle for back and neck, Ibuprophen PRN, warm showers, muscle rubs daily, not lifting more than 20lbs, home modifications like safety bars, cooking stool, etc. 


I also keep a running list of my testing flags and medical issues in the hopes it will help. I bring this list with me to every single doctors appointment that I have. Honestly, the doctors barely glance at it. They say something like "Well aren't you prepared" and then just put it down on the counter and proceed to ask questions that are answered on this sheet. -sigh-

I did have a bit of good news this week though. My neurologist messaged me to say that he feels my latest lab tests are matching his suspicion that I have Metabolic Myopathy and that's the source of my muscle weakness. I hope he's right and at my January 9th appointment we can begin some treatment. 2018 Has been a challenging year. 

The Current Plan

I haven't been talking about RA much lately. The Cymbalta I've been on has really cut down my joint pain (and helped my mood to boot!) My symptoms had seriously decreased till the last few days. For me stress = flare. Fortunately this time it's a small one. I know what to do. Wear my compression gloves and take my foot off the gas of productivity and rest rest rest. That's the plan for today.

My Rheumatologist isn't treating my RA until neurology is done with me and I think that's going to be a while. He's not sure if my sudden muscle weakness and muscle fatigue is connected at all to my autoimmune system, or if it's something neurological. So this means I'm in some kind of strange limbo with my neurology team running endless tests to try and find a cause. So far, nada. Although they did find my brain tumor, so I feel a bit rude nagging them.

Here's where I'm at so far in all this "chronic illness" health mess that is now my life:

• Next Tuesday - My first full brain MRI post-tumor removal
• Next Thursday - My first electric wheelchair is coming
• Monday November 5th - My first day back at work
• Wednesday November 7th - My 2nd follow up with my neurosurgeon (my husband also leaves for a 3 day business trip. SADNESS!!!)
• Wednesday November 14th - The long awaited EMG on my muscles with neurology
• Wednesday November 21st - I meet with the head of neurology in hopes he has some new ideas

Did you catch that I also work? And apparently I'm supposed to do that AND all these appointments every... single... week... Can you read my frustration between the lines?

Honestly I wanted to quit after the EMG and be done with neurology. But my husband made a very good point. He said "This isn't a wrong order at Carl's Jr that you just shrug and take anyway. It's a major health problem and we need to do everything we can to get to the bottom of it." He's totally right (of course.) I'm just exhausted with all this and I don't know how long I'm supposed to keep on going with these endless tests and appointments? 

When you struggle with chronic illness, any illness, it's impossible not to have it just take over your life. My life has changed completely from what is was even just 9 months ago. I have to constantly gage my energy, spoons and ability and that alone is exhausting. Add my job and then, you know, important relationships and I'm spread very thin. As Bilbo Baggins said in the Fellowship of the Rings "I'm tired Gandalf, like butter scraped over too much bread." Word Bilbo. All the feels!

"Don't Over Do It!"

I told my husband yesterday that I have 2 modes, High and off. This is very true. I either try to be out in the garden working up a sweat, cleaning my house, doing loads and loads of laundry, or I'm asleep. I've been enjoying naps daily since my surgery. I mean, I've always enjoyed naps, but these are NAPS. Usually about 3 hours long. And believe it or not I sleep just fine at night after napping for 3 hours. My body evidently requires lots of rest right now. However I'm not great at always listening to what my body wants.

I'm ready for my hair to grow back.

I'm not super patient!

On the up-side, my garden is looking fantastic! My muscles are still a big problem, but I find that as long as I don't walk much and lean on my gardening tools a lot, I can get quite a bit done! That's a big improvement over what I was able to do before. Although, I was also working long days before so I'm not sure how long I can sustain this level of HGTV domesticity. I'll just enjoy it while I can.

I'm a sucker for a wattle fence.

I really am trying to nurture myself too. I read recently about how taking a collagen supplement can help people with RA. It is said to reduce joint pain (and also is good for your skin, hair and nails.) So today is day 3 of me trying that out. 

It's very... ahhh... thick and foamy. Let's just say I drink it fast. So far I'm mixing it with chocolate milk which I think is as good as it's going to get. I'll let you know if I see any results. I'm also taking 500mg of Biotin to help my hair grow fast. And eating a lot of eggs. I've never taken Biotin before, but I know it's supposed to be helpful for your hair, skin and nails too. All things I can use while healing up all my scars from the brain surgery. 

In the meantime, I'm trying to find my balance and listen more gently and closely to my body and what it needs. All I can do it try.

Homeostasis - The New "Normal"

The first two days at my new job went great. My employer saw me use my rollator "Meg" and gently asked if I "Had an accident, or if this is a long term need." I disclosed that I have an autoimmune disease and right now it's a tool that I need. He followed up by asking if there's any accommodations or modifications that I would need to better to do my job. I told him not that I knew of, but I'd let him know if something comes up. 

Fortunately my job is very "cerebral" and sedentary. So I honestly don't think my muscle weakness, muscle fatigue and joint pain will be an issue. And I meant it when I said I'd let him know if that changes. Speaking up for myself is a new skill that I've quickly mastered. 

Thumbs up and ready for work!

I have a large, beautiful office that is very comfortable as well as a full support staff to help me in my work. So far there are a few things I need to work around. Like my chair will need more back support, but I can bring pillows in to fix that. Luckily Meg fits in and out of my office and the doors are pretty easy to open. 

My new office

My job also required much less typing and paperwork than I had expected. My hands are pretty excited about that. The hours still concern me, but I love what I do and that helps. For now my schedule is Monday and Tuesday from 8AM to 6:30PM. A long day, but I can do it. Long term that will turn into Monday through Thursday the same hours. MUCH longer week, but again, I'm feeling confident.

I'm hoping that my new rheumatologist can come up with something that helps my muscle fatigue and weakness. I didn't use Meg once I was settled in at work and instead walked the long hall to my office and back. I won't do that again.

The Lyrica and Cymbalta are both proving to be hugely helpful. The Cymbalta definitely helped to stabilize my mood and both are helping with the neuropathy and back pain. I'm so grateful to finally be on something that's giving me some relief!

Oceans of Tears

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

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

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

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

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

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

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

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

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

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

Current Symptoms - July

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

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

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

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

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

Current Symptoms:

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

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

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

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

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

Help While I Wait

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

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

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

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

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

Three Little Birds

Bob Marley

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

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

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

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

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

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

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

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

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

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

Alone Together

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

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

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

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

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

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

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

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

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?