Checking In With Myself

2025 Has been as difficult for me as 2020 emotionally. This time in 2020 the COVID pandemic was really serious. Things were shutting down and people were told to stay at home unless you really had to go out. Now in 2025 everything is a big scary mess politically.

Undocumented people are hiding out while ICE is on the hunt to deport them. Or worse, hold them in Guantanamo prison. Women, people of color, disabled people, LGBT people are all targets by politicians. Thousands and thousands of important government workers have lost their jobs because of the whim of mad men with power. Much needed services are being cut right and left. 

I feel anxious and depressed. I haven't been sleeping well and I feel exhausted pretty constantly.

Personally these changes are affecting me very little. Like the lock down of 2020. But since I'm a caring person and I see the impact it has on people I love (and people I don't know,) it is affecting me in a major way.

I have to remind myself of all the good things there are constantly. Like...

• My family
• My puppies
• The support group I just started for women
• My beautiful house
• My many friends
• My lovely town
• Nature
• That I can walk a block without my chair still
• Art and cultural experiences still happening
• Good TV & movies
• My soft bed to rest on any time I need it (which is often)
• Pottery

It's already very much springtime here. That also helps me focus on good things. It's a "hopeful" time in the season wheel. 

Reflecting on 2021

 

This year has come with many gains and loses for me. I lost my beloved Nana in mid-November. She was a second mother to me. Even though someone slips from the evil grasps of pain, it's still a loss. I know she's no longer suffering. But I also know I will never see her or hear her sing-song voice again. I kept some voicemails she left for me over the last few years and I'm grateful to have them. She had such an infectious laugh. One of my favorite things about my family as a whole is that we have all maintained our inner child. I can't say that for most people.

I also lost my sweet puppy girl of 16 years, Sweetie. Which I wrote about here. My son moved out of our home in an explosive way. That felt like a loss. And I felt like I finally had time to mourn my lack of ability to work. 

But my life is never just about loss. In fact every time I have a tremendous loss (like no longer being able to work), I also tend to have a huge gain (like my mother moving around the corner from me after being in England). 

So let's talk about my gains this year. 

Right up there with getting my clinicians license is my new fella Max. I worked very hard for that license. It was the climax of my education and training. Two thousand hours of working with clients, suffering through TB treatment, a total hysterectomy, a brain tumor and the start of my Mitochondrial Disease...WOW! For Max to be just as great speaks how important he is to me.

Another bright spot of my year was how much I was able to reconnect with my friends and family. My husband and I had a blast at "Friendsgiving" in November. We saw a lot of family that we missed last year. I had a life-changing heart-to-heart talk with my best friend since first grade. In short, I basked in the company of other people.

I like to think of myself as some kind of "Uber Introvert" who doesn't need the company of other people. But that's a lie I tell to protect myself from feeling rejected. Honestly I love to be around other people. And I'm doing much better at letting my limits be known.

Here are just a few things I want to remember that happened this year that were positive:

• I spent time with my Grandmother-in-law. One of my favorite people in the world.
• I had a lot of laughs with my Mama (just like last year, but it's important to savor those moments.)
• I produced some truly horrible art, but had fun doing it.
• I took some fantastic photos.
• I found new ways to do the things I love (asked for help, waited till later, worked around my disability.)
• I stopped fighting the need for rest.
• I went to the Monterey Bay Aquarium when they were practically empty. A dream come true!
• I saw the Mendocino Botanical Gardens for two days with the love of my life.
• I was finally approved for Whole Genome Sequencing along with my son and mother.
• We built our dream patio, complete with waterfall!
• I got my little room back (once my son left).
• I learned I can drink red wine again with some magical little drops that remove the sulfates. 
• I was kissed and hugged about a million times.
• I got back down to a weight that I feel ok with. Not perfect, but better.

Just looking at this list makes me feel both happy and proud. I love my life, even with its limitations. I am safe, warm, fed and very loved. I wish everyone in the world could say the same. That's my wish for 2022.

Taking Care

These are crazy times. Everything in the world is changing so fast, on every level that it's hard to keep up. People are dying in record numbers and our economy has completely crumbled. It's easy to get caught up in the tsunami of panic and fear that has brought us all to our knees. 

I'm one of the very lucky few. I feel like my town is a bubble, isolated from what the rest of the world is experiencing. It's spring and people are out on their bikes, walking their dogs, singing in the streets (while keeping safe distance from each other). I have plenty of food and fresh clean water. Everyone I love is safe and healthy. 

BUT... I also know all that can change in an instant. So everyone needs to take care. Here's what my family and I are doing.

1.  Staying inside as much as we can
2. Washing our hands constantly and thoroughly
3. Washing clothes we wear outside right away
4. Disinfecting commonly used things daily (door nobs, phone, toilet handle...)
5. Keeping our distance from others when we do go out (dog walking and food shopping only)
6. Taking vitamin C daily
7. Eating healthy foods (veggies, fruits, foods high in vitamin C and protein)
   
8. Getting lots of rest
9. Knowing the difference between allergies and CV symptoms
10. Keeping in touch with friends and family through Zoom calls, texts and e-mail
11. Not reading too much news
12. No news before sleep
13. Getting physical activity every day
14. Keeping routines like meal planning, night TV...
15. Talking openly about our feelings with each other
16. Checking in with neighbors regularly (we all come out and make noise at 7PM)
17. Helping others when we can 
18. Accepting help from others (like my mom sharing her meals with us)
19. Not living in fear
20. Being mindful and having gratitude

Laughter and play have very important roles during times of such major stress. It's vital to release that tension in fun, healthy ways. I'm trying to write and do some kind of art every day. This has been helpful for me. I'm also not wearing black intentionally and keeping my clothes bright and cheerful. This helps my mental health.

I'm praying all of us stay healthy. Stay inside. Take care of yourself!

What's Working (and what isn't)

I've been challenged with chronic illness for a while now. If you go all the way back to when I contracted Latent Tuberculosis then it has been four years (2015-2019). My mother recently asked me if the time before I struggled with health was 100% for me, what percent would I be at right now. I told her 10%. For me my 100% wasn't very long ago, in fact I can remember it like yesterday if I let myself, but file that one under "things that don't help me". Should we start there? Yes, let's...

A favorite smell to spray on my bed - that works!

What Doesn't Work:

1. Dwelling on the past. Even visiting it briefly really. Ditch that mental train to the past and stay in the present or very near future.
2. Pushing myself too hard physically. I went through an understandable phase of trying to push myself as hard as I could every day. That just led to exhaustion and me feeling much worse quickly. Plus it gives others the false impression that I'm able to do more than I really can. "Invisible illness". They can't see what it costs you to over-push. This also goes for not resting enough, not using my mobility tools and trying to have sex at the wrong time of day. Pushing gently but checking in with myself frequently is what works best for me. 
3. Comparing myself. It could be comparing myself to others, or to "normal" people, or even to what I used to be able to do. I am myself here and now and that is all I need. 
4. Fixating on symptoms. Research is good and I am the expert in my own body, but it's a fine line between research and fixation. A VERY fine line that I know I've crossed in the past. My condition is rare and to me that means I have to be diligent on research. But that research can lead to me over-reacting if I don't watch it. 
5. Living too much in the moment. Planning is very helpful for me. Making a meal menu, preparing food ahead of time (my husband does a lot of that), reviewing my week, figuring out how I'm getting to appointments and who is taking me. If I'm too much "in the moment" I won't do any of that. For right now I'm still able to and I find it useful.
6. Disconnecting from my body. It's easy for me to just go on auto and completely un plug my body from my brain. Scary easy. But then I end up doing something stupid, over-doing it or just not realizing how I'm feeling. Not good. Doing things like shaving (if I feel like it) henna coloring my hair, getting a haircut, giving myself a manicure (still can!) All of these things help me re-connect to my body which is incredibly important. 
7. Eating crap. I crave junk food and really love it, but I know it's horrible for me and makes me feel terrible. Eating anything processed is terrible for me. I honestly try to eat whole, real food as much as I can. Homemade yogurt smoothies with honey, frozen berries and flax, homemade beans, fresh fruits and vegetables, gluten free foods, etc. But it's a struggle because I'm a whore for Taco Bell. 
8. Drinking alcohol. Any kind of alcohol really will just flare my pain. Plus I already feel about 3 drinks drunk all of the time anyway. So I don't need it, but I do miss it socially. Like eating crap I know if I drink alcohol I just made myself intentionally feel worse. 
9. Giving up on the medical industry. Treating my chronic illness requires a fine balance between my medical team and complimentary interventions like vitamins, eating well and resting. I've had many times where I just scream "f*&@ this shit!" And never come back to any doctor again (like after that spinal tap by Dougie Houser.) But I also know that although understandable, it's not in my best interest. So I go again and again and again.
10. Keeping my struggles to myself. There was a time when I didn't have this blog, or tell my husband ALL of my symptoms, or let anyone know how much I was suffering. At one point my neuropathy was so bad that I was up for hours each night crying because of the pain. But still I went to school the next day (and got all A's by the way.) But keeping people out and suffering alone doesn't work for me. It leads to loneliness, depression and is a strain on my relationships. 

Noticing nature - that works!

What's Working (*Today):

1. Being around family as much as I can. Instead of pushing people away I now try to let them in with heart wide open.
2. Keeping everyone I love informed about my health. If I learn something new about my condition I try and share it. And not just with my husband, but with my son and other family too.
3. Asking for help. I used to be horrible about this, but TB made me change my ways. I now never hesitate to ask for help (although I do like to try and do things myself first.) 
4. Saying "no" even to the people I love most. I'm the only one who knows how much energy I have and what I can and can't do. So it's up to me to let people know when I simply can't do something. Especially when I need to rest. 
5. Making my health a priority. Not work, not my son, but my health. If I want to be there for others then I have to take care of myself first. This is also something that took me a long time to start doing because I get a lot out of helping other people. Heck! It's what I went to school for 10 years to do!
6. Keeping hope and an open mind. It's very easy to lose hope in my situation. Struggling with something rare, that's a moving target is a real challenge to treat. But there are hopeful clinicians out there and I'm lucky enough to have found a few. I also have a very hopeful family and that's awesome.
7. Caring for myself in every way I can. So yes I try to care for my body. Wear the right shoes for stability and support, take my medications when I need to. But I also try and take care of my mind. Connect with people I love, write a blog, read a book, fart off on Pinterest... These are all ways I take care of myself. Oooo! And I'm becoming an avid collector of soft lounge clothes. And did I mention my adorable new pink purse?
8. Savoring the moment. Not getting too far ahead or behind the time. Noticing the hummingbirds outside my window, a perfect dandelion as I roll with my dog, her sweet breath as she sleeps. All these precious moments would be easy to ignore, but by noticing them I'm keeping myself mentally well and grounded in the present. 
9. Stressing patience. I used to be a very impatient person. But when I have a three month wait till I see my neurologist again, I had to learn how to be patient. If not I'd go insane. So I learned how to breathe, relax away that tension and release those expectations. 
10. Expanding my identity. My job was a huge part of my identity. Losing that was a big blow. As I told my family the other day "I lost my job and the ability to drive in the same week". Considering I've been driving for 30 years, that was a big loss too! So the best way to help myself with that loss is to explore new identities. I used to do art so much that I considered it a big piece of my identity. I lost that when I took on "student". Same with "writer". These are two that I can re-claim. When I was working full time I couldn't garden as much. Now I can do a little and it's something I enjoy. I'm enjoying the process and it makes the loss of my other identities sting a little less. 

A nap with my girl - always works!

"Minnie" The Meningioma

I haven't posted in a while. I've been struggling to keep working as best as I can, sharing the news of the brain tumor with family and friends, juggling doctor messages and phone calls, laundry, being supportive of my son (who quit his job of 5 years the day I found out I had a brain tumor), enjoying life and distracting myself, processing my feelings and sleeping as much as humanly possible.

-GASP-

Yes, that tightness in your chest as you read that list is exactly what life has been like these past few days. But there are bright sides a-plenty!

1) The neurologists have decided I have a single tumor. I've decided to name her "Minnie." She's under 3cm big and is in my Left Temporal Lobe.

That's the green area.

2) Family has been super understanding (and of course shocked.) We're having a massive outpouring of support and specific offers of help. That has been amazing and made me feel very loved and much less worried.

3) I live in a big town with excellent health care. From the time of diagnosis to the time I'll meet with my neurosurgeon to go over a treatment plan will be less than 2 weeks. 

4) The neurosurgeon I'm seeing specialized in non-invasive surgery on that specific part of the brain.

5) My husband and son have been taking great care of me. 

6) I have the ultimate excuse for anything. Words that have left my mouth recently include "If you don't buy me that fluffy pillow I'll tell the checkout person that I have a brain tumor and you wouldn't spend $14.95 to make me happy." And of course the classic Arnold Schwarzenegger classic throwback quote "It IS a tumah." 

7) My mom sent me flowers AND a fun Halloween wreath. It's never too early for Halloween.

8) Even my dog feels bad for me.

 9) I get to sleep a lot and not feel bad about it.

10) I haven't had any seizures (a common symptom of brain tumors.)

Always look on the bright 

side of life!

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.

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. 

Good news and a bad mood

I had my gauntlet of appointments yesterday. The good news (from the Ophthalmologist) is that the Plaquenil didn't damage my eyes. I wasn't on it for very long, so I didn't think that it did. He said that my increased light sensitivity was likely an "uncommon side effect" (add that to the list) from the Plaquenil. He also said that seeing after images (like looking at a bright light, then away and you can still see it) doesn't happen in the eye, but in the brain. Apparently that's called "Palinopsia" and can be caused by some medications.

The bad news is that he found very very early signs of cataracts. It's never good when a doctor looks at something and asks a question right away. (Doctor looks in my eyes) "Have you ever been put on steroids?" SEE!? Not a good sign. 

My PCP (primary care provider) appointment later that day was short. Well, the wait wasn't short, but my time with him was. He was glad that the muscle weakness is doing a bit better. I GAVE HIM MY LIST and hearing him read my symptoms out loud was a bit helpful. But frankly he seemed overwhelmed and told me he was glad I had the neurologist appointment soon. He said he wants me to keep the appointment with the crappy rheumatologist (that I don't like) because I need to check in with one, then he'll get me a new one. Fine. Oh yeah. And I have a bladder infection.

I need to buy myself some "cranky day" flowers

I'm lucky that I didn't have anything that I super "HAD" to do today because I've been tired and cranky all day. I took a nap and just woke up even crankier. I hate it when that happens. I realized something important though. 

I have a major cycle that I go through again and again.

1. Try and help/cure myself with diet/exercise/information
2. Whatever it is gets too bad (pain, etc…) and I seek medical help.
3. Try a drug that helps at first really well, then gives me awful side effects.
4. Stop taking the drug because of side effects.
5. Go back to step 1.

I'm feeling like I'm back at step one, but resisting. Like I've said in the past... I want to trust my doctors and let them help me. I want to work WITH them to do what's best for my body. But most of the time I just don't feel that's happening. I feel I'm the one educating myself and them along the way. When I first saw my rheumatologist I told her "You need to understand the impact this has on my life. If we're talking a 1 to 10 scale I'm at a 7 for it impacting my life." Today I'd say that's an 8 going closer to 9. After all the money and time I've spent trying to get help I had thought that number would be going down... not up. I feel worse two months later than I did sitting in her examination room. 

But... I'm trying to remain hopeful. I'm doing what I can and keeping with my appointments. But today I'm cranky, a bit angry and really tired. And that's ok.

love offering of blackberries from my husband

Things that make me feel better when I'm crabby:

• Staying in my pajamas
• Taking a long shower, then changing into clean pajamas
• Telling my husband that I'm cranky and letting him be supportive/sympathetic
• Explore why I'm feeling that way
• Talk to myself like I would a fussy toddler (give myself lots of empathy)
• Know that I'll feel better at a later time (it won't last forever)
• Take a nap (sometimes it helps, sometimes not. But if I'm asleep I'm not crabby)
• Watch trashy TV
• Drink a lot of water (I laugh when my doctors recommend this. If they only knew how much I down in a day!)
• Wear my husband's deodorant (I know that sounds strange, but the smell makes me think of him and boosts my mood.)