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.

Faith Helps Me

I consider myself a Christian in a very liberal meaning of the word. If you wanted specifics I would say "Methodist" (though I 100% disagree on their LGBTQIIA stance.) I believe in doing as much good as you can as often as you can for as many people as you can. I believe that each of us has a purpose and a "spark" inside us that connects us together. I believe we are all children of God and that religion is just our way of trying to make meaning of something that we can't really understand because it's just too big. Too grand. Too huge. We try to comprehend the incomprehensible. But my faith does give me strength.

 I pray for my clients every night.
It's a way for me to pass along my worry and concern for them.
To put it a cheesy way: "To let go and let God." 

I've had a lot going on this past month to make me fearful. But rather than dwell in that fear I stare it in the eye, then move on. I'm able to do this because of my faith and my belief that I have a job to do here and I'm not done yet. And my view that "everything happens for a reason" I just may not know that reason at the time.

Yesterday I was offered a job. I was unemployed for 2 days. The job pays much better than the last one and I think I'll like it more. Many people who work there are Christian too, but not everyone (and it's not a Christian organization.) I like the idea of working with people who have their own spiritual belief. I think it's helpful in the kind of work that we do to have something greater than yourself to lean on. A refuge.

I crushed it!

I celebrated my new job with this necklace from Etsy.

It's hand made by a stay at home mom (here's her shop - no affiliation.) I enjoy supporting small businesses and artists like that. It's my favorite Bible verse. I don't take the Bible literally, but this verse has always spoken to me. I say it to myself when life feels overwhelming and like too much is required of me. All I have to do in that moment is remember my 3 tasks in this life. To "...Do justice, love kindness and to walk humbly with your God." - Micah 6:8

I love the "YOUR God" that shows up in every version. It's very personal. Whatever God is to you, because it's yours. That's religion at its best. Personal and intimate.

ENOUGH Lemons Already!!!

I've always really hated that saying "When life gives you lemons make lemonade." How about "When life gives you peanuts, make peanut butter." I've been making lemonade and peanut butter all week. But yesterday a really big challenge came my way. My new job that I've been at barely a month let all the staff know that the agency is closing. They might be bought out by another agency (one I don't care for) or they may just close. I was crushed.

I hadn't even been on my RA medication for 1 week and now I have to job hunt all over again. I know I'll find something else, but it will take every spoon I have and then some. I'm also very sad to have to leave my clients, people I had just started to get to know.

As devastating as all this feels, it's helpful to remember a few important things.

1. It's ok if I don't make much money for a little bit. My husband's a hard worker with a good income. He busts his butt to support us, so that's a bit of pressure off. We won't starve and can pay our mortgage. 
2. Maybe this new job will be an even better fit?
3. The Plaquenil is helping and I'm feeling better than I was even when I was job hunting a month ago (and I'm sleeping much better, which makes a huge difference.)
4. I have love, encouragement and support of family and my husband.
5. I have some very good leads. My supervisor gave me 4 people to contact in my town about a job and I found another promising one on Indeed.com this morning.
6. I've done incredibly challenging things in the past and overcome a lot. I know I will in this case too.
7. I still gained good experience and met new people, even if I wasn't there as long as I'd hoped.
8. It sounds like I'll still have my job for about a month, so I still have a little money coming in. Not a lot, but it's better than nothing.
9. I was worried about working full time AND my body adjusting to the new medication all at the same time. Now I think I'll have a little bit more of a gap to adjust to the medication before working full time hours.
10. I have faith that everything happens for a reason. That's a comforting thought. I do believe there's a plan for all of us and that suffering comes when you try and figure it all out. Sometimes you just need to trust and be willing to do your best (while letting the rest go.) I've absolutely done my best and this situation is no reflection on me personally.

Try and have some faith and trust.

One more thing worth mentioning...

I honestly believe there's no such thing as a "horrible week" or even a "bad day." There are challenging moments and easier ones that all come and go. Even though this week as a whole felt especially challenging, it did have its bright spots.

My mom sent me this double orchid plant after I told her about my RA diagnosis.

It was a bright spot in my week.

A dear friend sent me this notebook with art that she did on the cover.

When I feel loved by those in my life and thought of it can make a world of difference. A text from my son can brighten my moments. Having coffee in the morning with my husband can start my day off right. All these things give me spoons and are so important when feeling overwhelmed by life.