What is a "disability" anyway?

I consider myself to still be disabled. Many people would see me at the gym, or scrubbing down my kitchen counters and disagree. So why do I claim the word "disabled." What does that term mean to me?

To me any disability is something that gets in the way of your baseline functioning. That baseline is different for each person in the world. Only you know what it is. 

People with insomnia are disabled. If your depression makes you late for work, you have a disability. It's not just someone using a piece of durable medical equipment. A wheelchair, cane or walker. It's not someone with a missing limb or using sign language to communicate. And most of the time it's something you can't see. Like Autism or Mitochondrial Disease.

Yup. Still disabled.

I am disabled. I suffer from horrible chronic pain even now. A few times a week it makes sleep challenging for me. I take a slew of medications to try and keep at a level of pain that I can tolerate. I struggle with nerve damage on the side of my face where I had my brain surgery. It hurts when it is even touched. Often it hurts when it's not being touched. The Botox I take for my migraines helps it incredibly. Botox is a huge tool to keep the pain, dizziness, auras, pressure and other issues from my craniotomy at bay. But even so I have "breakthrough symptoms." Especially if the weather changes or I travel to even a slightly different elevation.

My migraine symptoms often make my head very fuzzy. My constant body pain doesn't help either. This impacts my memory. I often forget what I was saying, especially if someone interrupts me. Remembering names is a nightmare. I wish the world wore name tags.

You can't see any of these things. I don't go around screaming or crying when I'm in pain. The metal plates on my skull are on the inside (thank goodness.) I smile and get on with my life. If it gets too bad, I'll go to bed and try to sleep till the extra medication kicks in. I'm working hard to feed my body right, get rest and build muscle. That is a full time job for me right now and I'm unapologetic about it.

So yes I can walk, laugh, use gym equipment and stay awake through the day (most of the time). I am still a disabled woman and likely will be my entire life. My symptoms are just managed (most of the time) with a lot of hard work and great medical care.

Facing Down Fear

I have signed up to take my license exam. It's the final step to becoming a fully fledged Marriage and Family Therapist. This is what I've worked so hard for over the last 10+ years. It's a very big deal and what was supposed to be the climax of my academic career. But it doesn't feel like that now.

It has been 11 months since I left my job because of my many chronic conditions. In the end it was the unrelenting migraines that were just too much for me to work through. This was my dream. To get my license and to help people and I'm still convinced I can do that in some capacity in the future. It won't look how I expected, but when does life ever work out how we plan?

Millions of people around the world have had their future plans completely derailed by Covid. Just because my cause is different doesn't make my situation any more special. Life is nothing if not unpredictable.

It has been very hard for me to study. Every question reminds me of my past work with clients and what I had to give up. I know that will fade the more that I study. I have five months before my test to work through my feelings and learn the questions. I've accomplished much harder tasks in the past.

I can almost hear the Helen Reddy song that my Mother would sing when I was little. It's very fitting to my situation. I don't always feel this way, but the strength of such mantras are helpful.

..."Oh yes, I am wise
But it's wisdom born of pain
Yes, I've paid the price
But look how much I gained
If I have to, I can do anything
I am strong
(Strong)
I am invincible
(Invincible)
I am woman"

Another Big Decision Made

I've been having increased dizziness and headaches. Over the last three months they have been getting stronger and the dizziness more debilitating. My original work plan was to go down to just two days a week doing telehealth from my home. This Tuesday was supposed to be my last day in my office. Little did I know when I left that morning that it would be my last day period (at least for a while). 

I really thought I could manage to still work two 10hr days a week and just recover the rest of the time. But as anyone with chronic health conditions knows, sometimes our bodies have other plans. It was at about 10AM that I realized this "new plan" wasn't going to work. I felt exhausted, was dizzy and had a headache so bad that I couldn't focus on what I was doing. 

I also realized that I had been trying to "keep it together" for my clients, but really cancelling them as much as I had to with little to no warning and rescheduling was likely harder on them (and our support staff) than just taking a three month disability leave.

So I pulled the trigger. I went home, cried my eyes out from frustration, guilt, anger and just not feeling good. My husband come home from work mid-day to comfort me (that was after I called him from my office bawling my eyes out over having to go home). After that I notified everyone important at my agency that I had to immediately go on a three month disability leave. I got a few "get well soon" responses, but most of it was just radio silence.

Silence is a horrible feeling to be greeted with when I tried as hard as I could to just keep pushing and to help as many people as possible. Pushing myself was what I did all day every day that I worked (sometimes even at home). But I just can't push myself anymore. My body has had the final say and it's "NOPE!"

Now what's next?
Applying for State Disability has taken a lot of spoons. It's very confusing and I don't know what I'd have done without help from a disabled friend of mine. My student loans have also been frozen because I can't work right now. So that's two big things off my plate. 

I'm doing small productive things, but mostly resting. And of course attending the never ending medical appointments. I have one Monday with my PCP to talk about the dizziness. He gave me Scopolamine transdermal patches to try, but they did nothing. I picked up some Dimenhydrinate (Dramamine) 50mg today and will try taking 100mg tomorrow to see if it helps at all. 

I'm still processing this big change too. No more office. No more helping clients (right now). No more early work days. No more dressing up. It feels like it did when I got my first rollator or wheelchair. A big step into disability. 

What's New?

It must be December because suddenly I'm super busy. Trying to juggle my RA symptoms, viruses that keep sneaking up on me, still recovering from brain surgery and testing my ongoing muscle weakness issues. Oh yeah... AND I just started working full time. This past week I moved up for 30 hours to 40. But I'm happy to report that it went really great!

I found this pinecone on a walk around my office complex. 

Isn't nature amazing?

I love my job and feel blessed to be able to do what I do. This week went very fast and didn't feel like that much of a shift. Of course it helps when you have a supportive partner like I do. He did all the shopping, cooking and cleaning up this week. All I had to do was come home, eat and sleep. I'm always grateful for his support.

I've also been sleeping world's better recently. Much deeper with longer REM stages. I think the brain tumor was screwing with my sleep and I didn't even know it. And a good night's sleep can help like no other medicine.

Aside from all the love, support and great sleep I'm trying to be careful with my eating. My husband and I encourage each other to get protein in the morning. I also pack a lunch to eat healthy even at work. I never forget the snacks! My favorite is a hard boiled egg. It keeps me feeling full and gives me energy.

I did a little art project the other day using paper plates. One side is the "Me" that everyone sees. Happy, healthy, smiling. The other side is the "Me" that is much harder to spot and only my husband really sees. That's chronic illness, pain, sickness, exhaustion, sadness, frustration and all my symptoms.

I showed it to my husband and he said it made him sad. I understand. It's hard having two sides with you all of the time. Every time someone tells me "YOU LOOK SO GREAT! YOU LOOK SO HEALTHY!" I actually flinch. Because I know that they're only seeing what I present and none of the struggle and suffering. It's not all of me. Not even the most important part. It's just the mask I put on every day. Do you ever wish people could see what your chronic illness really looks like? The toll it really takes on your health, both physically and mentally? I know I do.

Intense Week

Help Me Jesus!

That's what my Nana used to always say when she'd get stressed. Well, this week was for sure a "Help Me Jesus" kind of week. 

1. It was my first week working 30 hours. Monday, Tuesday and Wednesday all 10 hour days. I DID IT! I survived. Although I slept for about 15 hours yesterday to recover. But that's ok. Point is I did it.
2. I cleared my foot MRI. Now we know there's no sign of RA damage in my hands or feet. YAY!
3. I went through 2 MRI's in one week. Today's was a brain MRI. I didn't mind though because I'm seriously ready for some answers about this muscle weakness. I hope to get some soon. (Because I'm a sucker like that and always hopeful.)
4. I have an appointment with the wheelchair sales rep. Apparently they come to your house, measure you and tell you all about your chair options. This is a whole confusing new world that I have many emotions about. Sadness, grief, excitement, happiness, relief. It's a giant emotional stew.
5. I'm in love with my new medical case manager. She's seriously the best. Like a medical fairy godmother. Now while I'm at work she's following up on things for me and cracking skulls, making things happen and forcing them to happen faster. Thank goodness!
6. My son quit his job of 5 years. That was a bit shocking and worrying. 
7. I had a epiphany to let things go that I can't control (see number 6.)
8. My muscle strength and muscle fatigue got a little worse this week.
9. I learned my job is taking everyone to Hawaii in January.
10. I went back to church.

To celebrate my 8th MRI I had my husband take this picture of me with the statue at our medical center that has become a home away from home. It was more of a joke as it was Saturday and no one was around. Again, humor is everything!

Even though I'll be getting a chair soon, I'm sure I'll still use Meg most of the time. What would I do without her? She's my BFF.

I did learn however that I can't get that beautiful turquoise "Fold and Go" chair that I had my eye on. My insurance doesn't contract with them. But I'm confident that whatever I get will be what was meant to be (and I'm sure I'll think of the perfect name when I see her.) And if I hate the color I read about some people taking their chairs into auto painters who paint it for them. Hmmmm...

Planning for the work week is KEY! This is my go-to lunch. Some gluten free seed heavy crackers, low fat Italian salami, grapes and boiled egg. My work also has snack cheese available for us to munch on, so that's a welcome addition. 

This week I was craving rice krispy treats. My husband made me some that used chocolate krispies. YUM! I enjoyed them all week. See!

Here I was enjoying it while doing paperwork. It tasted like love and kept me going through the day. 

This week I also modified my office a bit for safety. Like taping this throw rug down. Aside from needing it down for Meg and my office chair, I like my space to be the best ADA space it can be for others. I didn't want anyone to trip. Problem solved!

Going to church on Sunday was nice. I told my husband I enjoy having a dedicated time and space to sit with my thoughts and meditate. I often have helpful realizations about my life when I'm there and things I can do differently. This Sunday was no exception. 

Now I'm waiting on the brain MRI results and processing my feelings about the chair. And napping. There's never enough time for naps. 

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!

New Phase

Starting Monday I'll be entering a new phase of my life. "WORKING WOMAN!" I've been in school for the last 10 years preparing for my chosen career. Monday is my first day at my new job and also the first time in about 24 years that I'll be working full time. Thankfully they're starting me off part time at just two 10 hour days a week. But 10 hours is a very loooooong time. I love what I do and I'm sure the time will fly by. But I'm also very worried about my body being able to play "keep up" with my mind. 

Along with starting a new job I'm also still adjusting to my new medications. I'm currently taking 50mg of Lyrica twice a day. I'm on day four of Cymbalta and take 25mg at night before bed. My doctor added the Cymbalta after I talked to him about feeling so stressed out all the time. Now I have a good reason for feeling emotional right now, but I also welcome a bit of a break. I need to focus on my new job and adjust to life a bit without bursting into tears daily. He thinks the Cymbalta will help. AND it also happens to be good for nerve pain and RA pain, so that's a win-win in my book.

So far my biggest side effects have been feeling dizzy, feeling a bit foggy headed and not being very hungry. That last one is a bonus for me as I'm trying to lose weight anyway. The first two suck, especially for driving. Luckily for me my husband has been driving us since my pain and muscle weakness got so bad. But that's yet another thing to add to his already full plate.

I met with my new Rheumatologist two days ago. He's ordered more tests, but said he had some ideas. I'll go back in two weeks. More waiting, more testing... but I do feel like things are progressing and I'm getting more help. Also that the medications I'm currently on are really working to fight back both joint pain AND neuropathy. I'm so thankful to FINALLY be on something that helps!

August will bring with it a new phase in my life. That of working hard (and actually getting PAID!), hopefully some health answers and also treatment that helps. No more struggling to just help myself or "waiting." Waiting for my career to start, waiting for medication that works, waiting for a specialist to see me. Instead it's a time for "doing" and that excites me!

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.

Knowing What Helps and What Doesn't

Knowing what doesn't work for me can often be just as useful as knowing what does. As my condition progresses I've been exploring and learning what is useful, helpful and working for me. But that doesn't mean that everything I try works out. Or maybe it helps at first, but then quickly doesn't help anymore.

Baths always help

Physical therapy just became one of those "not helping anymore" tools. It was helpful at first and I learned a lot about how to sit, stretch, squat and move safely without further injuring my back. But I never quite hit it off great with my physical therapist. Today I saw his assistant (a woman) who I thought would be a better fit. But once again I found myself educating her about what RA is, what my limitations are and why 90% of the exercises she was trying to do were painful/exhausting for me. (I did the same thing with the other PT. It's a spoon suck!)

You know what? I'm better off doing my own thing. Thank you PT, but I'm good now. My last bit of helpfulness was having her check out Meg and make sure I had her adjusted correctly for my height and that I'm sitting in her the way I should be. Yup! Got the green light. Now I fail to see the need to go back. 

Support is helpful.

Something recent that HAS been helping me is getting support online. I joined a website called "My RA Team." It's a bit like Facebook for people with RA all around the world. You can post how you're doing, share a picture, ask a question and comment on other people's posts. I've found it to be educational, empowering and supportive. We're all struggling with our health, so it's very reassuring and non-judgmental. 

I think a lot of people cling to what doesn't help just because it's what someone else told them it's what they're "supposed" to be doing. I tend to always question, listen to myself and follow my instincts. If something isn't working for me then I drop it.

Another recent addition that has been helping is my Lyrica. My new neurologist (who ALSO is very helpful) put me on it last Wednesday for my neuropathy. I've now slept through the night the past 3 nights in a row. Something that hasn't happened for me in about 10 years. Sleep is always helpful.

My Lucky Day!

A picture can be misleading. Despite that evil grin on Jack Skellington's face, today really was my lucky day. Why? I'm glad you asked!

One reason is that today (well, yesterday) was the first day at my new job that wasn't just training. It was me... doing what I love... and it felt wonderful. I'm very happy at my new place of work and I think it will fit me wonderfully. I feel fortunate to have found such a great place. The hard-earned next step in my career. Also, working and keeping busy takes my mind of more stressful and painful things. I feel a lot better when I'm busy. 

Another reason was I treated myself to a little bauble. Etsy is one of my favorite places to shop. I love supporting small businesses and artists. And I feel VERY lucky that I have the means to do so. 

Beautiful little jade sharks

Yes. I love sharks. Call me a hipster, but I loved sharks WAY before "Shark Week" was such a big thing. I find them beautiful and terrifying. Just like life, right?

It was also my lucky day because after my REAL work day I got to come home to a family dinner. The crock pot is a fantastic invention. We had delicious chili that my husband claimed was my "best chili yet." Enjoying a comforting meal with the two people I love more than anything on this planet left me all warm and tingly all over (and no. That wasn't just the neuropathy.) 

So yeah, my key snapped in the lock. And no I haven't gotten my MRI results back. And yes, it looks like I'm on another very long wait list for a new neurologist (that's IF they even get back to me, but I'm sure I'll have to chase them down every few weeks.) But I also have a family who loves me. A job that appreciates me, a warm house full of love to come home to every day and resources to indulge in. So YES! I am very lucky, fortunate, blessed, favored, charmed... And I'll try my best to see that every day.

Totally unrelated 

My new favorite dessert.
GF bread with french butter and wildflower honey.
Actually it is related because it looks like a "liquid luck" potion from Harry Potter to me.