Meal Planning Follow-Up

There were some good things and some not so good things that went down the week I did meal planning. 

I enjoyed the oatmeal that I made. The protein powder gave it a fake sweetener taste that I did not enjoy however. I don't know why they flavor them with fake stuff like that. Next time I'll just stick to walnut and almond butter as the protein source. 

The lunches were good, but I did tire of them. I confess to not eating one EVERY DAY like I had planned.

I did feel more regulated when it came time to dinner. I wasn't wolfing it down like I usually do.

I still ate high calorie foods on the weekend. Drat. 

It took a ton of time out of my weekend.

I didn't have time to do it this past weekend. We were camping (my first time ever) and I had to recuperate.

I would do it again, but I would change a few things. I would make two different dishes for lunch and alternate. Or the same dish, but a little bit different. Like one vegetarian version and one regular. 

It was helpful to just grab and eat. To not have to think about what I wanted, get overwhelmed and not eat, or eat unhealthily.

My husband said it was very helpful for him to have ready lunches as well.

Make Life Easier

Over the past two years I've learned ways to tweak my environment to save spoons. For example, opening a dresser drawer takes WAY more effort than putting something on a hook. I also have learned to not sweat the small stuff. Like taking time to turn my clothes all right side out all at once. It's easier for me to just do it one at a time as I wear things.

Here's a few modifications that have been incredibly helpful for me.

• Sit whenever I can instead of stand.
• Lean instead of free stand.
• Plan ahead.
• Think outside of the box (like my dresser is now just storage for things I don't use often like sunglasses and extra blankets).
• Work around your energy needs - if showers leave you exhausted, take them before bed instead of first thing in the morning.
• Use empty wall space as storage.
• Keep the things you use the most within easy reach and out in the open. (I love using a variety of pretty little bowls for things like hair clips, jewelry and my anti-vertigo bands.)
• Use bins instead of hanging things up.
• Use wall hooks for clothes or pajamas you wear the most.
• Using "travel size" instead of full size products.

In the kitchen I have a stool that's adjustable to sit on when cooking, but honestly my husband and mom feed me most of the time. It's not a job that I miss. When I do cook I keep it simple. That makes it healthier and saves my energy. We also meal plan weekly together, that way there's no stress around dinner time.

In the bathroom I love my shower stool and bars. I feel like everyone needs both in their shower even if they don't have any health issues. They didn't cost much and I use them every time. I also use bins, bags and hooks in the bathroom for my stuff. I've learned that "travel size" products are lighter and easier for me to use, so that's what I tend to buy. I've also cut WAY back on the number of products I use. "KISS" in the bathroom. 

Each spoon of my energy is precious and these minor tweaks add up fast for me. 

What to Bring to The Hospital

In case you haven't picked up on this... I'm a HUGE planner. I like having a plan, I like knowing the plan, I like making a plan. It helps me to feel more in control. The less I actually have control of a situation, the more important it is for me to have a plan. Ergo, having a plan for when my brain tumor is removed is enormously important to me. 

Although I'll only be in the hospital for a night or two, what to bring for that time required some deep thought (and heavy shopping.) I found this heavy canvass bag on clearance yesterday. The color is bright, so it will be hard to forget and leave somewhere. It's also machine washable, which we'll want to do to anything that was at the hospital. The straps are thick and it's easy to carry. Well, easy for my husband to carry. It also zips shut, which is super important for the hospital.

Inside my bag are some essentials. Rubber bottom super soft slippers, body lotion (that I bought at Disneyland, so it reminds me of that fun trip we took), face wipes, baby wipes (in case I can't take an actual shower), deodorant, lip balm, sore throat drops (being intubated always leaves you with a very sore throat) and mints. I also scored some slip on shoes for under $3. Easy on and easy out the door. I'll wear them to the hospital.

Not in the picture is a super soft white blanket that I treated myself to. The blankets at the hospital are very utilitarian. It's hard for me to sleep without my "blankie" so I cleverly bought one we can bleach and wash when we get back home. Last thing I want is hospital cooties!

This is my favorite "room mister" that I spray on my pillows at night. I'm tempted to bring it to the hospital with me, but common sense dictates I'll be drugged out of my mind (literally!) and couldn't care less about such things. As important as knowing what to bring is knowing what to leave. I'll hold off on the spray and save it for when I'm back home.

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.

Current Symptoms

Before each doctors appointment I make a list of my current symptoms. For a new specialist I also include a basic timeline and break the symptoms up into "chronic or occasional." I have an appointment with my primary care doctor and just finished a list for him. This time I'm including something new. A list of things that I've tried to help ease the pain and calm inflammation on my own. I'm doing this because sometimes I feel like doctors think patients aren't proactive or are just looking for a quick fix. I want to really hammer home how long I've had this, how severely it affects me and that I'm not just waiting for someone else to "fix" it for me. Also so we don't waste time talking about/suggesting things I've already tried.

Tried: (for pain & inflammation)

Plaquenil (400mg – stopped taking from side effects)

Gabapentin (stopped taking from side effects)

800mg Ibuprofen 2x a day

1,300 mg Acetaminophen 2x a day

Salonpas (topical pain patch):

            Camphor 3.1% (Topical analgesic)

            Menthol 6.0% (Topical analgesic)

            Methyl salicylate 10.0% (Topical analgesic)

CBD topical stick

Charlotte’s Webb CBD supplement (no THC)

TENS machine

Acupuncture

Supplements (Borage, magnesium B-12, E, fish oil)

Ben Gay and all the other topical ointments for arthritis & joint pain.

Light exercise/stretching

Diet changes

            (cut out gluten, sugar, dairy, etc.
            *Improvement with no gluten since 12/2017)

Current Symptoms:

·      Joint pain in feet (especially right foot, ankle and 4 smaller toes. Right ankle & toe swelling.)

·      Joint pain in both hands (especially right hand & fingers. Hands feel hot)

·      Joint pain in lower back

·      Joint pain in upper neck

·      Right shoulder pain

·      Pain in back, shoulder, hands and neck that wakes me up in the night

·      Dizziness (especially in the morning)

·      Feeling of fullness, pressure in right ear

·      Body joint gelling in the morning and after sitting

·      Frequent urination, especially at night.

·      Dry mouth, especially at night.

·      Sore throat off and on (like I feel like I’m getting sick, but I don’t)

·      Fatigue (feel exhausted most of the time, especially after activity)

·      Easy muscle fatigue in arms, legs and bottoms of feet (the front pads) from minor activity (like bathing or walking across a parking lot.)

·      Peripheral neuropathy symptoms (especially in legs, arms and lips)

·      Both hands swollen in the morning. Sleeping in compression gloves helps.

·      Pain in both knees, especially after activity (knees feel hot)

·      Cracking of joints (neck, right hand, right foot, both knees)

Have you ever had that conversation with someone? Even your doctor? "Have you tried..." "YES!!! I've tried everything!!!" That's what I'm trying to avoid.

I don't think any of my symptoms are unique. In fact I think the majority would fall into either "neuropathy" or "rheumatoid arthritis" (or as my doctor says, "rheumatoid disease.") I'm not a special snowflake in the land of symptoms. So why each neurologist and rheumatologist stammers that I'm so "A-Typical" is a big mystery to me.

I'm hoping that my appointment Thursday will bring a fresh referral to a NEW rheumatologist and suggestion for addressing the chronic inflammation (because the 800mg Ibuprofen is doing zilch.)