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"

Where's My Instruction Manual?

I wish I had an instruction manual that came with my illness. "When you start to feel so dizzy you might pass out, don't panic! It's just a migraine. Go to bed and it will pass." That kind of thing. Instead I feel like each thing my body does is new and scary and I have no idea what to expect from one moment to the next. Which in turn makes it incredibly challenging to plan my future.

Maybe the manual would say "In 5-8 years you will no longer be able to care for yourself, so prepare in advance for that mentally and financially." Or "In two years you will need assistance to bathe." That way I could plan for an ADA bathroom remodel.

Or how about "In 2 years you will require a feeding tube." So I would know to really enjoy every bit of food now. Or even "By fall 2020 your condition will be stable, expect no further deterioration of muscle use."

I wish the manual would have told me that I would only have my dream job for one year before my symptoms became too much for me to work. I also wish I would have known that I wouldn't qualify for any kind of financial help from the government because I'm married to a person with a good job. "You will be financially dependent on others due to your illness..." I wish I could have prepared for that.

The hardest thing about my chronic illness is having no idea what's around each corner. Or how long I'm doing something maybe for the last time.

This weekend I tried to change our porch light myself. Something I've done many times over in the past and I just couldn't. I asked my husband for help and of course he sweetly came out and did it. But trying and then not being able to do it was very upsetting to me. I think not knowing that something is the last time I am going to be able to do it makes the first time I can't that much harder. 

But life is just that way. For all of us. Nothing is permanent and the whole concept of permanence is an illusion. None of us ever really knows the last time we will do anything. 

That's also what makes life sweet. I must relish each moment as I'm in it rather than rush from one thing to the next. Savor each meal, each kiss, each time I can shower independently. Because I don't have a manual. I'm blindly stumbling through life just doing my best.

Scary morning choke

I was writing a long post about ways to take care of my body when I realized what I really wanted to talk about what how I scared the shit out of myself this morning.

Let me back up...

I pride myself in being able to swallow a lot of pills at once. It's stupid. I'm not into self deprecation typically, but come on. That's a stupid thing to be proud of. So I don't do it at night when my muscles are a bit weaker, but first thing in the morning is usually fine. Except for this morning. I popped all eleven pills of varying sizes into my mouth along with a lot of water. ELEVEN pills!

Well, the next thing I know one of the smaller buggers is lodged firmly in my windpipe. I feel the horrible familiar feeling and a wash of fear and panic comes over me. Lucky for me everything else went down the right way. I immediately lean over my bed and give a strong cough. It didn't come right out, instead disintegrating enough to go up my nose and out a little bit, but I could still feel some in my wind pipe. 

I think it was an Aleve pain pill because it burned like a mo-fo all through my nose and down. As soon as I'd cleared what I could out I knew I had to stop the burning. I poured myself a big glass of unsweetened soymilk and added about a tablespoon of honey to it. It felt lovely going down my burning mouth and in the back of my throat.

Next I sat naked in my hot shower on my lovely shower stool and coughed up as much as I could. I also vacillated between self flagellation about taking so many pills at once and being kind and loving to myself about how scary an experience it was.

With fear comes change...

I've resolved to take my pills 1-2 at a time like a normal human earthling should. I also want to take them in the same room as another person when I can. It was scary to know I could have choked to death in the bedroom without anyone in my house even knowing. It was a bit of a wakeup call to take my condition more seriously. With each cough in the shower I could feel my lungs getting more and more fatigued. 

I also had a lot of gratitude that I didn't die. Life is so fragile and it only takes one mistake to end it all. I've had many moments like that to be grateful for. It can be easy to see the hardships and miss sight of the blessings. I feel blessed today that I didn't die.

I can't tell!!!

One of the hardest things for me about having a chronic, progressive condition is the lack of stability and predictability. I honestly can't tell what I'll be able to do from one day to the next. I know I'm far from alone with that feeling of instability. But that's no consolation.

Sometimes I feel like I honestly can't walk at all. Sometimes I feel ok to garden for an hour (though I always pay for it later). Sometimes I think it's only a matter of time before I'm hooked up to a ventilator. Other times I feel my body has really stabilized. The constant uncertainty is stressful and hard on not just me. 

My family can only go by what they see and what I tell them. Of course I don't give them a constant play by play of my body. "Now I have a cramp in my left calf, now my lower back is spasming, now my right eye is twitching..." They aren't me so they can't possibly know. Or as much as they try, understand. It's terrifying. I feel a constant undercurrent of panic no matter how mindful I try to be. "Is this the last day I can walk? Is this the last time I'll be able to do this?" These are things I think about daily. 

If even I can't tell what's going on in my body from one day to the next how could my family? If I don't know what I need or what's helpful, how could they? I do know that it helps me to talk and share the important things going on with me. Including my fears.

I'm very lucky in that when I share with my family, they take it seriously. I still remember talking to my husband about needing a rollator. It was a very hard conversation, but needed. I ALWAYS feel heard, respected and helped by my entire family. Which when I can't tell what's going on with my body is just what I need. 

I've learned what doesn't work for me is pushing myself too hard just in case I won't be able to do something in the future. It's what I have a tendency to do and my body doesn't thank me for it. I need to take it slow and cross each bridge as I come to them.

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!

1 Week Out From Brain Surgery

My Meningioma will be removed in exactly 1 week from today. I have many feelings about this. "I don't wanna" is probably the most dominant thought right now. "You can just run away" is the second thought I have. Though neither are really feelings. The feeling behind both of those is fear. Though I can't really pinpoint what I'm afraid of? I have faith in my neurosurgeon and know how routine this is for him. I have great heath care and lot of support. Logically I even think I'll recover pretty fast. I think maybe the fear is coming from pain. Far more than death I fear pain and suffering. It's going to hurt and I'm going to suffer. There's no avoiding that fact. And that's at the heart of what makes me want to run away and go to Disneyland.

My husband and I at Disneyland last November. 
We totally drank the Koolaide

All this week I've been watching YouTube "ride throughs" of Disney rides. I found it ridiculously comforting. This was my favorite one that I found. It's the Pirates of the Caribbean Ride in Shanghai. I didn't feel bad watching it because I know I'll never go there in person, so it wasn't a spoiler.

I think there's many reasons Disney has been on my mind this week. It was a wonderful vacation we had there last November. We hadn't been in years and years and doing it without your kids is a completely different experience. We had a blast. So happy memories like that absolutely combat stress. That's one reason. Another I'm sure is escapism. Watching Disney transported me to another place that had nothing to do with work, family, brain tumors, mobility issues. You just sit and watch and let everything real slip away. That had a lot of appeal this week.

The only pain and suffering in Disney is inflicted by super cool villains with bitchen castles, swag and backup.

So I guess you could say my attitude about my brain tumor this week has been one of avoidance and indulgence. And I'm more than ok with that. During these super challenging life events I'm a fan of "whatever works." Whatever keeps me going through the day so I'm not crying is a win. Whatever gets me up in the morning to face another to-do list is victory. Whatever stops me from getting in my car and just driving away is an accomplishment. Whatever it takes. I can get through this. "I can go the distance." Hahah! I couldn't resist.

(that's a line from Disney's Hercules in case you're a Disney nube.)

Feelings About New RA Diagnosis

Today my rheumatologist called me at work to let me know that with the combination of my recent MRI on my right hand the bloodwork she’s confident in saying that I have rheumatoid arthritis and she wants me to start taking medication for it right away.

I’m going to be starting down the path of DMARDS (anti-rheumatic drugs) that “suppress the immune system.” If that sounds serious, it’s because it is. But from what I’ve read it’s much more serious to not take medical action. I’m picking up my prescription for Plaquenil (Hydroxychloroquine) tonight on my way home from work.

She also said she doesn’t think the RA is what’s causing the neuropathy and that’s likely something else entirely. She feels we caught the RA early. That’s hopeful.

After the call I stepped outside to visit some dandelions.

So now the plan is to keep the appointment with the neurologist then go back to the rheumatologist after seeing that person to check in on how the drugs are going and if the neurologist added anything or found anything new.

I’m feeling many many things.
A sense of irony that I got the call on Friday the 13^th. Relieved to finally have a diagnosis and some sense of hope with treatment. Feeling this is unfair that I have to go through something else after having Latent TB just a few short years ago. Happy to have someone trying to alleviate the pain of what I’m going through. Lucky that she got back to me and that I even have access to medical care in the first place. Angry that it feels like this trip isn’t over yet and there’s still more to find out. Grateful to have such a supportive partner who “gets me” and is there for me. Scared about the side effects with my new job. I’m feeling all of these things all at the same time.

Overall I just feel like FINALLY one piece of the puzzle plunked into place. I was hoping that would be the whole puzzle, but at least I have that one f*@&ing piece to cling to. Some of what’s going on is RA and it can be treated. Not cured, but treated. But I am scared that the treatment will be worse than the condition. Everything I’ve read tells me “no.” That “treatment isn’t optional.” But I’m not a trusting person by nature.

I still have so many questions. Will I get any side effects? How will this medication change me? Will my RA get worse even with the medication? (many people are on more than just 1 thing.) How many drugs will I end up needing to take? What if the rheumatologist is right and there’s something else going on along with the RA? What if that’s worse?

I "needed" a treat after all the stress of the day.
Yes, that is a sport sock on my cup.

Don't judge me. It works.

Want to know what my biggest fear is? My #1 biggest fear is that I've spent the last 10 years learning, working and training for a career that I won't be able to do. What if "brain fog" takes over and I can't work? What if I'm too exhausted to be able to work very much? So yes, I have fears about those things. But I also remind myself that I live in a time with wonderful assistive technology. I also have a very non-physical job. It doesn't require me to be physical at all actually. So as long as I can talk and think, I'm pretty golden. You can't say that about many careers. 

I'm also fiercely independent, tenacious, persistent and resilient. All the things you need to be to do battle with any form of chronic illness. What chance do fears have against Ninja skills like that?