Transitions

My new transportation cards

I don't feel like I'm "transitioning" into my life of being on disability and not working. Not at all. Instead I feel like I've been distracted from really coming to terms with anything. Part of that has been from being so busy with my mother moving to town from overseas and the other part has been caused by having such a complicated illness.

When you are healthy one day and paralyzed the next, or have a clear diagnosis or are undergoing serious treatment for a condition complete with walks and ribbons, you know what to expect. Your prognosis is clear. But even though I have something serious, it's rare enough that it's not clear at all.

I have accepted that I likely won't find a magical treatment that will put me "back to normal" (at least my normal). I've also accepted that I will probably continue to have degenerative, progressive muscle weakness. But what I'm not sure about is if that will always keep me from working?

Right now what's keeping me from working isn't my body at all, but the dizziness, fatigue and foggy headedness. Both my ENT and the neurologist think at least some of this is from migraine. The pink glasses helped and I ordered a pair of blue light blocking prescription glasses yesterday hoping that helps even more. 

My new specs - Yes, I'm a hipster

The Topamax DID NOT HELP! It made my dizziness so much worse that I had to just go to bed. It also made my headache much worse. Ugh. After three days of that BS I just stopped taking it and messaged my neurologist.

I think what will help me transition is:

• Some time to myself
• Applying for SSDI
• Talking to the new neurologist who knows more about myopathy
• Time

Inner Pixie

Hair battle

I have always had a battle with my hair. Even before I had any kind of illness. It has been every color of the rainbow (at least once.) Mostly I keep it pretty short or in a bob. It's very fine, straight and thin. I feel this limits me to what kind of style I can have. And don't even get me started on how many curly home perms I've had in my life.

When I turned 40 I was curious what color my hair actually was and I stopped coloring it... for a while that is. Then I would go back to dark brown or black, then grow it out again, then repeat this step over and over.

Then I had the brain tumor and no more color for me. Or so I thought. About a year later I tried organic henna and liked it. I've always been partial to red hair. So that was it! I was going to henna my hair every month or so and grow it out.

Orrrrr am I?

Honestly I kindove miss my natural hair color. And having a short pixie. It's so easy to care for (which is a really big deal to me right now) and I like the look. When I see a mature woman with a short pixie I think it's cute.

Here's what I'm sure of. I will never "box" or salon dye my hair ever again. I won't subject myself to chemicals. I like to play with my hair. It's a fun accessory that makes me happy. But I can't swear off changing it often or going back and forth on the henna or my natural color.

Post hair chop today

Never a dull moment!

A few days ago an acquaintance said to me "You must get so bored sitting around all day. What DO you DO?" Once I got over my shock and the urge to smack her I took a breath and explained. "I am disabled. I have a chronic illness. This means I am always sick. I spend a lot of my time resting and I feel too ill to get bored". Although that is true, my days are also quite busy!

Here's what I had going on just this week:

My genetic testing kit came and my mother and I did it together. It took a few hours to register, answer questions and spit in a tube (surprisingly hard!)

It's rare that a week goes by that I don't have some kind of medical appointment. I saw the ENT the other day who confirmed I'm suffering from migraines and they believe that's the cause of my dizziness and foggy headedness. Good to know! Now on to treatment.

My mother drove us a little over an hour away to meet a friend for a delicious seafood feast. I had a headache the entire day, but I didn't let it stop me from having fun! The ocean air was rejuvenating and the view of San Fransisco was breathtaking. 

I get easily impatient with my hair and hate what I call the "Soccer Mom" phase of growing out a pixie. So I gave myself some baby bangs just for fun.

After both the neurologist and the ENT said I'm suffering from migraines (vestibular and intractable) I decided to try these "anti migraine glasses". They are a rose tint and are supposed to block out particular light that can cause migraines. I didn't think that they were working, but then I took them off to shower. When I got out I could tell my headache was MUCH worse. Back on they went and I can feel my headache easing. So weird! 

I think I have a very high pain threshold and so much other physical stuff going on that it never would have occurred to me that I had migraines. 

I'm also trying to gently get back into doing a little gardening. I find it very therapeutic and it keeps me eating healthy. My mom just bought me this beautiful cedar raised bed so I can easily garden while sitting, It's the perfect amount that I can manage. I'm hoping to get some herbs and lettuces for winter going soon. 

So no. I'm not "bored". I still sleep in, rest, take naps and try to go slow. But I keep both mentally and physically as active as I can and I'm always seeking out new tools to improve my quality of life.

(I received no incentive, kickback, discount or payment for ANY of my links.) 

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!

Help is HERE!

I had three medical appointments last week, each good in their own way. The great news is that my meningioma (the benign brain tumor from last year) is all clear, no new growth and my brain bounced right back in to fill the cavity. YAYYY! At least my brain is athletic! So that's fantastic news. I also don't need another brain MRI for another year. 

Getting medical help is very exciting

My neurosurgeon recommended I do 23andMe genetic testing. He said they can be pretty thorough and may find something that we don't know about yet. So that's in the works right now.

The next bit of good news is a have a neurologist that I love. He was super compassionate, a great listener and had a lot of fantastic ideas on how to help me NOW. I told him most of my doctors get so caught up in wanting to find out what the underlying cause of my issues are that they overlook how to help me suffer less today. He was awesome and did both. 

He reviewed my chart, asked questions and went over my timeline with me. He asked about my symptoms and was upfront with what he knew and didn't know. He's an MS specialist and he wants me to see a Myopathy specialist in the same office next week just to talk genetics, but he's all about helping me now. Also many of my symptoms are similar to MS, even if the cause is different. 

The biggest takeaway for me was that he said I have Mitochondrial Myopathy (MM). He said "The two hallmark symptoms of MM are muscle weakness with any kind of exertion" (check) and "Muscle energy crash with any kind of illness" (double check). No one had ever put it to me that way before. I asked him to officially change my diagnosis in my chart and I hope he does so soon. It's helpful for me and to keep everyone on the same page. 

BUT he also had some other ideas and suggestions. First off he thinks my dizziness, foggy brain and vision problems may or may not be connected to the myopathy. He thinks it's just as likely that I'm suffering from "Intractable Migraine". He said with this type of migraine it's more likely that you'll just have my symptoms instead of the classic traditional migraine. He said it's also incredibly common to have this type of migraine after my kind of brain surgery and/or with my myopathy... but bottom line he considers it a different beast from MM. Interesting. 

Bruce wants to help too

Help take a nap that is

Before diving into a new medication for the possible migraine he recommended I try a combination of Vitamin B-2, Magnesium (800mg a day) and Feverfew. It comes in one pill (thank God!) in something called "Migrelief". So I'm giving that a go for a month till we move try a possible prescription for it. 

He also gave me a lot of referrals for services that might help my CURRENT symptoms. YAYYYY!!! I can't even tell you how amazing that was to hear. 

So here were my main takeaways and diagnosis complete with links:

• Intractable Migraine. Could be causing the dizziness and foggy headedness.
• Dysphasia. Fancy name for choking on your own spit like a big dork for no reason.
• Physical Medicine and Rehabilitation. A magical place that will help with my tools and other mobility needs.
• Mitochondrial Myopathy What the neurologist thinks is my overall diagnosis and what's going on with my muscles (due to a genetic mutation.) 
• Speech Therapy For my issues I'm having lately with talking.
• Temporal Muscle. Issues with scarring and muscle tensing from brain surgery last year.
• Therapies for Mitochondrial Disease

(I received no incentive, kickback, discount or payment for ANY of my links.) 

What I CAN Do!

When you have any kind of illness it can be easy to get sucked into thinking about what you "can't" do anymore. "Ooooo, I USED to be able to (blank) but now I CAN'T!!" This kind of thinking isn't useful in any way. In fact it's a very slippery slope that leads to serious depression. 

I had an appointment yesterday with a new neurologist that went fantastic (more on that here). But medical appointments are also always fixated on what I can't do, what's wrong with me, what's causing me distress with my body. 

So to counteract that I give you a short list of what I CAN still do that brings me a lot of joy.

Even though I can't drive anymore, I CAN use Dory (my giant wheelchair) to travel my town independently. I'm very lucky to live in an accessible town and I love zooming as fast as I can in the bike lane all on my own. I meet family or friends this way, run a quick errand or walk my dog. 

I can't cook as much as I used to, but I can use my kitchen stool to cook more simple things, especially for lunch. Here I'm making spaghetti squash with chicken sausage for my mom for lunch. And even though my husband usually makes dinner I can still help.

I don't think there will ever come a time where I'm unable to shop, even if it's just online. I can still manage shopping just fine. Shopping gives me a sense of control over my environment (getting to pick out new things) and makes me happy. I just have to be sure not splurge too often.

I can still laugh and laugh LOUD! My son says I have two laughs, Marge Simpson and an evil witch cackle. I love it. And I love to make other people laugh. Laughter is contagious and super good for you. I hope I will always be able to laugh.

This is a really big one that I don't take for granted. I can still independently dress myself top to bottom. I do little tricks to make it easier (like don't always wear a bra), but I can still get the job done and look pretty darn good.

I can also still:

• write with my hand
• use a computer
• see
• taste
• breathe
• sleep in my bed
• have sex
• read
• bathe on my own
• play with my dog
• stretch
• clean the house a little bit
• do laundry
• walk around my house unaided
  (I love having such a small house!)
• feed myself
• kiss
• hug
• do a puzzle
• paint
• talk
• keep a blog

Chronic Illness & Relationships

Life gives us many opportunities for relationships. Acquaintances, co-workers, friends, family, pets... All touch us in some way. Chronic illness and relationships are rough.

Can't you just bring a coffee by my place every once in a while?

Once I didn't "get well soon" most of my friendships went by the wayside. If I'm really honest I would say ALL of my friendships went by the wayside. You can only cancel plans for being ill so many times before people just stop asking. And I think my friends specifically just stopped knowing what to say or do when I wasn't "cured" by whatever treatment I was trying that week.




I have a specific friend who was pretty shocked when I showed up to our coffee date in a wheelchair. And if I had the energy to sit and listen to people talk about themselves for hours then I'd still be at work. I don't blame them for dropping off. It's very hard to understand and to know what to do to help. And "let me know if I can help" isn't really help at all. It's words to make the person NOT feel helpless, useless and powerless in a situation where everyone is powerless.

My in-laws have been really fantastic. My mother and father in-law took my husband and myself to Yosemite National Park not too long ago and bent over backward to do things that would be accommodating for me. They check in on me regularly and are good listeners.

Us on an accessible trail at Yosemite in July 2019

My two sisters-in-law are also very helpful. They always understand if we need to cancel an outing or family gathering because of my health. No one takes anything personally, which is a HUGE gift.

One of my sisters-in-law visiting me right after my brain surgery. They were both there and both spent the whole day with my husband waiting. Now THAT'S LOVE!

My family is also great. My mother is looking at a house close by to me to be helpful. She now drives me anywhere I need to go, anytime. She even takes my precious dog out for walks and adventures! She feeds me, henna's my hair for me and slips my son money any time she can.

Me and my Mom. I feel very loved and supported with her.

My husband is the center of my support system and where I get the most love, understanding and help. He gets to see me at my worst and has never even blinked when I lose my cool and have a "snot" moment of hysterical crying. He rubs my feet anytime I need it, rubs my back nightly and reads me stories out loud. He works more than full time to support us and is calm, cool and patient with our 25yo son (who is temporarily back home again). My husband cooks, shops and cleans... he's an amazing man. I may have bad luck when it comes to health, but I won the karma jackpot with my marriage. 

He always has my back

My chronic illness has tried to take out my marriage many times, but it hasn't even made a dent. "Can't work, no orgasm, need to rest daily, foggy mind, can't drive..." a world of "cant's" doesn't stop our love for each other and how we always find a work around.

I know people who have had chronic illness decimate every relationship in their lives. I have much to be thankful/grateful for when it comes to the people who are really there for me every day and I feel fortunate to have them. 

One Month Later

I am exactly one month into a three month "temporary break" from work (SSI). One month ago I had my last day in my beautiful office. One month later this "break" does NOT feel temporary.

I'm slowly coming to terms that my condition (currently just called "Myopathy") is progressive and degenerative. New symptoms still crop up from time to time and none of them leave once they arrive. They may get stronger or weaker, but once here they don't just set up camp, they build a condo and invite friends.

Not very long ago I could push myself to walk around our block with my dog. If I were to do that today not only would it take every spoon I have, but I think I'd fall over. The dizziness is a bit better, but I'm still very foggy headed, especially once I get tired. And that happens all the time. 

In short, I'm unable to work.

All the moods of me.

This Sunday I have another brain MRI. And on the 22nd I have a follow up with my primary care doctor who I trust completely. At that appointment I'm going to talk with him about extending my disability leave. There's no way I can go back to work as I am.

My hope for something or someone to "fix me" is waning and I feel a pull to just do what I can every day. What I have is obviously still a mystery to all medical professionals, though they've been able to rule out quite a bit. To me it just feels like everything my body went through during the TB and brain tumor left me with something "turned on" that never should have been. Or not. Who knows? All I know is I can do less this week than I could the week before and so on and so on.

I also think I need to make some small modifications to my house while I'm still able to be so mobile. Planning ahead is never a bad thing.