My Hopes Are HIGH!

I got some awesome sauce news just now. (My doctor puts the "awesome" in the sauce.) 

"I received the wheelchair evaluation from physical therapy and will send you a copy in the mail. Please send me the information on the electric wheelchair and I will complete order.
Sincerely,
Your Awesome Doctor"

Ok, I might have added that signature. But it's not like I'm sharing his name with the world! Then you'll all want him and he'll be too booked to see me. I'm selfish like that. Don't like to share. Only child and all that jazz.

With any luck in a few months this little baby will be mine.

It's a "Fold and Go"

"But why this particular chair?" You may be asking. Well... The company is headed by a woman with RA who couldn't find a good electric chair to fit her needs, so she made one! Then turned it into a company. Let's start there. Also it's much lighter than other electric chairs (about 50 lbs) and folds down to fit in a regular car trunk. No van or hitch required. This baby is made for adventure! It can take inclines and bad weather like few other chairs can, especially in that price range.

I'm also not a... um... "petite" young thing and this chair is made for someone my size. YAY! Let the adventures begin!

Also in "big news this week" I ordered my first medical ID bracelet. It's something that's been in the back of my mind for a while, but my muscle weakness seemed to have taken a turn for the worse this week and that spurred me into action.

After a ton of searching I settled on this.

Pretty, but still looks like what it is. That was important to me.

Don't want to ERT to just think it's jewelry!

My job can be a bit risky. I work with a lot of different people and unpredictable situations can happen. Also I don't trust my own body right now AND I love to travel. So I thought it would be best to err on the side of caution and be prepared.

I know some people just use the Emergency ID Card on their smart phones. But honestly I don't think the ERT is going to be checking my phone while I'm laying unconscious from a bad fall or crisis. Nothing wrong with going old school when it comes to your health and treatment.

I had mine engraved with:

Muscle Weakness

Mobility Issues

RA/Asthma/PNP

ICE: husband's phone number

Did you know that ICE means "In Case of Emergency?" I saw it on a lot of medical sites and never knew what it meant. You're welcome. Also PNP means "Peripheral Neuropathy." I also had to look that up because the whole word wouldn't fit. 

Now if I tumble and conk my melon the responders will know why. Although nothing on my bracelet is life or death information like it is for some people, it's also important for anyone trying to help me to know if I'm in a situation where I can't speak for myself. 

My fingers are crossed for the wheelchair being approved with my insurance. It feels a bit like a message in a bottle that just got launched.

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.)