Journal

Journal entry by BreAnn Ahara

Happy Mother’s Day to all of you out there pushing through and showing up. Motherhood ain’t for the faint of heart. I’ve been blessed by my own beautiful mother as a steadfast and resilient role model AND mama. Thanks Mom for always showing up and loving me through good times and bad. I promise to take care of you when you’re old 😉😍
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Journal entry by BreAnn Ahara

Sorry for the lack of updates but it’s really just more of the same. I wish I had a great update-but I still don’t. Still sick, still being diagnosed with stuff, still fighting to find the right medications, still trying to decide if surgery is necessary again.... basically still OVER IT. I read through my updates from 2018 and I could pretty much cut and paste a lot of it- which is so incredibly frustrating and disheartening. While I’ve had some improvements, in a way-we’ve started all over in California finding the right doctors and waiting for insurance to approve things. My mindset is strong and I’m trying hard everyday alongside my team mates... but I’ve just become more private and introspective as I continue to fight and try to heal in whatever way I can. Thank you again for caring for me, and reading this update. I love and welcome in-person visits, but I’m not great on the phone or on social media currently...so forgive my absence for now 🤟🏻❤️🌻 

Journal entry by BreAnn Ahara

From Rikio:

Bre has let me know that many of you have inquired as to how I’m dealing with this. That is kind and considerate of you all and I feel I should give you the latest, and answer as honestly as I can. 

 

On the health front it’s been brutal. She has been diagnosed with Rheumatoid Arthritis and Dystonia amongst others and additionally gets to deal with continuos testing and whatever else in-between. Basically, the doctors have given us the over-simplified analogy that her body has been run in the red for so long that her figurative engine looks to have blown. It’s  been difficult. This is what I know so far.

 

I feel like a frog in a pot. Finally realizing things are critical. Unsure of how it got this far and flailing to jump. I’ve watched it go from a state of discomfort, to complete immobility at times. I’ve watch her bite down on her lip and push through what she deemed necessary for family to an existence that requires her to bear down (literally and figuratively) just to stay relevant, and alive, unlike a ghost wandering around mourning what she used to be like. Or feel like. Or look like. Or sound like. 

 

She’s said there’s something excessively cruel about her diagnosis. One that includes her  joints feeling like they’re stuck and on fire teaming up with another that causes her to move uncontrolled and to exhaustion. Regardless of what it will cost her body later. She’s right. We’ve watched it play out. Over and over for quite awhile now. And generally that’s what she mourns the least. 

 

The far greater loss has been to watch Bre struggle with the neurological and cognitive symptoms. Its heartbreaking. It’s one thing to be stopped in your tracks, your trajectory changed and deal with your life looking different than what “it should be.” Analyzing all of that from a damaged vessel is one thing, but taking away even the ability to analyze is another thing completely. She took pride in solving problems. Many mothers do. That ability is constantly being chipped away. Numbers, schedules, and even problem solving at its rawest (“does she need to eat?”) can now cause anxiety and overwhelm. She still tries though. Tries to problem solve while managing limited resources. I’ve learned that to be a steadfast hereditary trait of the women in her family (well, a lot of women I guess, but particularly our pack of resilient bitches I’ve had the privilege to be around and absolutely LOVE and admire). They still try to move forward. However dire the circumstances and despite the cost to themselves or how little they are working with. 

 

I’ve watched her look at numbers our whole life. Prospective, historical, appreciated, depreciated. It’s a language I’ve been allowed to remain blissfully illiterate in. It was a great luxury. As long as they weren’t grossly misrepresented on a pay stub all was good. I had a wizard at home. An accountant that would translate that into food, electricity, water, clothes for the girls, food for the animals, etc. It’s how we made any and all forward progress as a family. She was responsible for that. Sure,  I showed up, but left in my hands it would have all culminated in an ungodly amount of Del Taco or Jack In The Box and the girls being absolute barn cats. They still kind of are but they are ours. And the base she laid then was crucial to them being as resilient and loving as they have (also) proven to be. 

 

As mentioned above, we've been fortunate to have an army of support from our family and friends as well. It’s not lost on us the sacrifice our people and their families have made to keep this machine running. People from throughout our life’s paths and histories have crossed vast distances and shared energy and love in all forms. And although we may have shifted away from others we’ve learned it’s sometimes necessary, a blessing. Both the love and support and the bitterness of learning to overcome life when it’s extremely non linear. Bre’s still trying to be grateful for that. Even when she’s pissed. Or I am, or we are, or the girls are. Even when it’s difficult to communicate it to you or I in a way that doesn’t make her face hurt and symptoms worse.

 

Always managing resources. Only they tend to be of an extremely limited mental and physical currency. She scratches, stumbles, claws and does her best to make her numbers work for the day. Still trying to let me sleep in the morning. Even if she ends up crawling to the bathroom after falling. Crying quietly and in the dark so I don’t wake up. I’ve woken up to it more than I’d like to say. That’s who I married. Who she’s been the whole time. While I was off doing God knows what. I swear, she composed jazz. While still trying to improve her situation. However. Trying to will it. Through pain, her limitations, desperation, depression, degeneration, realistic expectations, anxiety, whatever. As long as I have known her, it’s been her nature. While herding cats. Myself included. 

 

As far as I go, I really just try to manage. Calendars, cars, kids, school, teachers, pinche “jogathons,” medications, dosages, phone calls, texts, appointments, doctors, insurance, mail, food, and making sure the girls don’t look like absolute trash pandas. That’s my life. It’s a lot. I suck at it a lot of the time and failing is always painful. And I have fucking help. Ive been fortunate to learn that starting and ending work at x and y then shutting off is the definition of decadence. It’s comfort and I did it for years. Years. With three kids. 

 

I remember being on patrol training with the Sheriffs department (aka non existent to anything at home) while she was dealing with what we didn’t know was part of this declining health avalanche. She still did laundry, meals, pets, bills and dreamed forward for us. While trying to be as healthy as possible. She was also in an accelerated Bachelors program. While simultaneously testing out of additional college courses every week. For reals. Oh, and she was also working. 

 

I was going in at whenever o’ clock and coming home to sleep and assume a good enough job was done throughout the day or night to keep our little savages off of poles for the next decade. And even then she tried to keep the house quiet so I could sleep. She put in her work during the early year. For sure.

 

If I’m honest, now it’s just my turn. It’s just the way it is......how it has to be, for awhile so we can be “equally yoked.” For me to look in the mirror and be ok. It’s what is honorable, what is just and a gift I have to learn how to unwrap. But it’s still a gift. She’s still a gift. That’s how I feel. 

 

We have things in the pipeline and I’m sorry if I’ve turned to vapor in all this. I promise I’m not. Know I’m filled with gratitude and managing as best as I can. Some days are better than others.

 

Stay up, 

 

Rikio.

Journal entry by Megan Rankin

Well, the tremors that got me admitted to the hospital last month weren’t just “stress induced” tremors as the doctors were hoping. After 6 weeks of no symptom improvement, today I was diagnosed with Dystonia. And if I’m totally honest, I’m pretty heartbroken.
For the last six weeks I’ve been struggling with symptoms like tremors, facial tics, muscle weakness/rigidity/spasms/involuntary contractions and the inability to walk unassisted. 
As you can imagine, these new symptoms are embarrassing and unsettling. I struggle to be in public and around people, as stress is a big trigger for me. I know it’s uncomfortable to watch me shake and I can feel people staring, which pushes me into isolation even more. I had just adjusted to being in a wheelchair- and now these new symptoms make me feel like a big spotlight is on me as I cruise around- shaking and grimacing uncontrollably. I’m embarrassed for my kids (despite them insisting they’re not) and I hate that this has now been handed to them on top of me being newly disabled.
I’m trying to keep the perspective that this is just one of the many hurdles I will overcome, but right now I’m devastated. I was really ready for this diagnostic chapter to be over and I want my life back. This new diagnosis feels like a step in the wrong direction. I want to actually get better, not add to my list of diagnoses and medications. 
The methotrexate (my RA medication) is doing its thing and helping with my rheumatoid symptoms- however it’s hard to celebrate when my neurological symptoms are so uncontrolled.
My doctors have me on meds trying to control the tremors and are adding even more until I can see the next specialist in October. And of course this new Dystonia specialist is not covered by my insurance. Because that would actually be helpful. 

Rikio is still off and taking care of me, as I can’t be alone. During a bad dystonic episode, I can fall, choke and struggle to breathe- they’re terrifying. We are still waiting on insurance to provide a home aid for me...but for now it’s all on Rikio- and a rotation of my parents and whatever caring friend that comes to stay with us for the week.
And while we’re being honest, Rikio’s position with his company was eliminated during his leave of absence. We weren’t shocked, and it’s probably for the best. But until he finds something else, we are incredibly grateful for the multiple fundraisers that have made this painful transition financially possible for us. 

On another note, I’ve had to pull away from social media. I’m admittedly having a hard time accepting this new reality, and watching the highlight reel of everyone else’s life is too much for me, for now. Thank you for those that have continued to private message me, visit and send care packages to us. It means so much that others still check in, even though I’ve been fairly antisocial. 
Again, thank you for your continued support of me and our family. It really does mean the world to us.
Bre 

Journal entry by BreAnn Ahara

There are few that understand the conflicting feelings of joy, relief and grief that come along with FINALLY receiving a diagnosis.

It’s been a week since I rolled out of my new rheumatologist’s office with my diagnosis of Rheumatoid Arthritis. Even though they’ve suspected it for months, having them definitively diagnose me, felt like a huge weight was lifted off of my shoulders. We can now turn the page on this never-ending diagnostic chapter and move on to treatment.

Now that we know WHAT we’re fighting, the doctors have suggested a more aggressive treatment plan. And to be honest, the new larger dose of methotrexate is kinda kicking my ass. Within an hour of taking it I crawled into bed, and that’s where I stayed for about 36 hours. Miserable. I was warned that it might cause me to flare, and they were right. The scary part is that next week’s dose is even higher. It’s daunting to think of going through this, every week, indefinitely. So I try not to 😅 But I’m committed to stay the course and give this medication a real chance.

Journal entry by BreAnn Ahara

This was shared on our GoFundMe as well, so sorry for if you're seeing this twice:) 

After 8 months of pure agony, 5 hospital stays, 50 pounds lost and dozens of expert medical opinions.... as of this morning, I finally have an OFFICIAL diagnosis: Seropositive Rheumatoid Arthritis/Disease. 


I know it’s hard to understand how a disease with “arthritis” in the name can be so disabling, but it’s a devastating and insidious disease that causes systemic inflammation throughout the whole body. Most people notice it in their hands first and it slowly spreads. But for me, it knocked me down like a fucking avalanche-putting me in a wheelchair within 6 weeks of symptom onset. 
Because of the systemic nature of the disease, it can affect the heart, lungs, skin... pretty much every part of the body. While this diagnosis is one of many I've received, they believe this is the main driver behind everything else going on. The doctors feel confident that this is the reason for my massive weight loss, and I’ve been cleared of all the cancers that they were looking for.

It may seem odd to be so damn excited about a diagnosis of a disease that’s incurable, chronic and disfiguring... but now I know definitively, what I’m fighting. We now can treat the actual disease instead of just guessing and managing symptoms. Plus having an actual diagnosis makes getting things approved through insurance sooo much easier. 

To say I feel relieved and validated is an understatement. I’ve known in my heart for months, that this was going to be my diagnosis. Unfortunately it took the medical community a little longer to come to that conclusion. Today they also decided to up my methotrexate. We are incredibly hopeful that I can eventually regain some of my mobility.

Thank you again for your continued support!! 
Also, for local Orange County peeps, tonight is our fundraiser at Newport Rib Company...we hope to see you there:) 
Bre

Journal entry by BreAnn Ahara

So, it’s been a rough few days over here. Depression/grief/devastation...whatever you want to call it, has a way of knocking me down when I least expect it. I thought I was growing to accept my new reality. I thought I had surrendered to the new me...but when that reality includes a bedridden and miserable person, I find that I’m just not able to accept it. Or her.

I know I’m supposed to be surrendering and accepting where I am TODAY, but it feels impossible. Because the truth of the matter is, I simply DON’T want this new life that’s been handed to me. Not one bit. I want my mobility and my health back, and no amount of positive thinking will change that fact.

I try to present to the world a happy, positive person who’s rolling with the punches. And on some days I am that person. However those closest to me know, that this disease has brought me to my knees, both literally and figuratively. I feel broken, raw and vulnerable in a way I’ve never experienced before. And that’s just the truth of the matter.

As usual, the one silver lining in all of this, is that I know I’m not facing this alone. I have an amazing counselor who’s helping me through this transition, loving friends and an incredibly supportive family who loves and accepts me right where I am. I no longer can pretend that I’m fine, and even if I could, I don’t think they’d let me.

Insert awkward transition here...

In other news, I’m about to take my third (weekly) dose of methotrexate and I’ve been mostly side effect free thus far. This is very encouraging, despite not seeing any symptom improvement YET.

The girls have pretty much had a cold since school started 2 weeks ago, but my hippie concoction of herbs and vitamins has kept me virus free for now.

A recent big win for us, is that insurance has gotten home health services approved and rolling. That means I now have occupational and physical therapy as well as nursing staff that COME TO ME every week. That makes my life so much easier, since leaving the house is exhausting, excruciating and complicated.

One of the last things we are waiting on insurance to approve is a full time caregiver. That needs to happen before Rikio can consider going back to work. My stomach hurts just typing that paragraph.

Thank you for caring enough to read this update, I know these aren’t the most feel good reads, and I appreciate those that are tuning in and reaching out. It means the world to me.


Bre

Journal entry by BreAnn Ahara

The ebb and flow of this disease is exhausting. After a couple of encouraging days of feeling slightly better, I found myself having the slightest bit of hope again...Only to wake up this morning stiff as a board and feeling like someone beat me with a bat in my sleep.


Yesterday I felt well enough to help the girls with their hair before school. I could get out of my chair to rub their backs before bed and kiss them good night (for the first time in weeks). Only to wake up so stiff that Riko had to dress ME and do MY hair this morning. It feels cruel to be able to do these things some days, and not others. But at the same time it makes me actually enjoy tasks, like brushing their hair-something that was a chore I resented before.


I hate that it took me getting this sick, to appreciate motherhood and these girls. But I also remember the treadmill of life that I was on before. Of course I didn’t want to brush their hair. I was exhausted and overwhelmed with my career and my roles as a wife and mother. But when someone turns that treadmill off, and forces you to sit down...you just see things from a completely different perspective.


So while today is back to being shitty, I’m forced to appreciate the fact that I got those two days with them and hope for more. As you can tell, I’m trying to be positive but the reality is-it just really sucks.




I know that finding the right combination of medication is going to take some time. But man, this waiting period just feels painfully long.

Journal entry by BreAnn Ahara

Yesterday was a big day for everyone in the Ahara household. The girls went back to school, and I finally started treatment for my autoimmune diseases! After our follow up appointment yesterday, the doctor and I agreed it was finally time to start a disease-modifying anti-rheumatic drug (DMARD). For months I had been weary of taking any of these meds, because it’s technically chemotherapy in a low dose pill form (that you just take indefinitely). It’s shocking for many to hear that they treat autoimmune patients with chemotherapy...But it’s surprisingly common. When the immune system goes haywire and continues to attack itself (like mine has) the solution is just to shut the whole thing down and hope for the best.


For obvious reasons I was scared of entering this new immune-compromised world. I have three, elementary-aged daughters who bring home every virus known to man...and then sneeze it right into my face. But after an excruciating 6 months, I’m ready to jump on whatever bandwagon that promises me pain relief and the stoppage of anymore joint destruction.


So last night, I took my first weekly dose of methotrexate. They say I should see a difference in a month. My hopes and prayers are that I don’t experience any of the more common side effects (hair loss, digestive distress-I need more of that like I need a hole in the head) and that I don’t succumb to every virus that comes my way.


I’m hopeful for this new treatment and would appreciate only positive messages/stories about it. I know the dangers of these drugs and have tried the holistic approach for some time with no relief. All of my doctors have told me that this is too severe of a case to treat with nutrition alone and I’m choosing to believe them for now.


Thank you AGAIN for your continued support. Rikio and I are both, so humbled by the outpouring of love and generosity to our whole family.


***Please note: our fundraiser is with GoFundMe, not CaringBridge.

Journal entry by Megan Rankin

"I don't even know what to post anymore.  Social media used to be a place where I commiserated about the 'struggles' of motherhood and life.  But as I fell deeper down this medical rabbit hole,  my focus, struggles and perspective has shifted dramatically. I struggle with the simplest tasks now:  walking, eating, sitting up, and am in constant pain.  But I'm still a mom.  And I'm still struggling with motherhood, as I'm now home with my girls - BUT I'm not the mom they knew...  and the transition home yesterday was tough to say the least.  

So this is me finally opening up and this is what I'm sharing now.  Thank you (always) for your ongoing love and support, this is not a journey that can be done alone."

-BreAnn

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BreAnn’s Story

Site created on July 24, 2018

NOTE: Donating to Caring Bridge in honor of Bre goes to the CaringBridge.org website and NOT BreAnn. 
Donating to her GoFundMe page (https://www.gofundme.com/BreAnnAhara) goes directly to Bre and her family.

Hi everyone and thank you for visiting.  As Bre's friends and family, we are SO GRATEFUL that you are taking part in her journey.  Bre's entire life as she knew it has changed in a matter of months.  It has been agonizing to watch her go through the torture of this much pain and disappointment, with still no answers from doctors or signs of healing in sight.  She went from a typical, healthy 30-something mother of 3 and business owner, to being chronically ill, in tremendous pain and basically incapacitated.  

I've had several people act surprised that she's as ill as she is, considering the "cute pictures of her" they see online.  Please don't let these images fool you.  There have been a couple of days a month - A COUPLE - here and there where she's been able to somewhat get herself out of bed and put on lipstick to feel human again and show up outside of her home (with help) and into the world around her.  These moments have been few and far between, and she's often needed to rest in bed for days afterward just to recover from attempting to walk around.  Lately, she hasn't even been able to get out of bed unassisted.  Lately her world has been closing in on her even more and leaving her bedridden and alone.  It's torturous for me (her friend) to have to write that truth down, but I think it's important that we share this harsh truth with all of you so you're aware of how desperate the situation truly is.  WE NEED TO GET HER BETTER!
-Megan

Here's a recent note from Bre:

"The consensus is that I’m suffering from a severe onset of “autoimmune disease of unknown etiology”. I’m in the middle of getting to the bottom of which autoimmune diseases specifically, (but they strongly suspect Rheumatoid Arthritis, among multiple others). I’m in constant, debilitating pain, my joints have seemingly turned to cement and almost every system in my body has been negatively affected. I have a team of Hematologists, Rheumatologists, Gastroenterologists, Urologists, Gynecologists, Functional Medicine Doctors, Nutritionists, and now pain management specialists, to help me. But all of them want extensive testing done and it’s expensive. My treatment options are also expensive, and some that I want to try aren’t covered by insurance. I’ve reached a new level of desperation and am willing to try just about anything to regain my mobility and get my life back. While we have hope that I can get better, most of my diagnosis’s are chronic, incurable and disfiguring. So while we pray for a miracle, I’m realistic about what my future may hold. 

In addition to losing my mobility, I feel as if I’ve lost my identity. I was the doer, the donater and helper, the volunteer. Not the one that NEEDED the help. However I’ve shut down my appraisal business, that I worked so hard to build, losing half of our income while my health costs have doubled our expenses. 
My loving husband is now my full time caregiver, helping to dress, shower and do basically everything else I definitely don’t want his help with. My children have lost the mother they knew and have lovingly accepted this new modified version (who is struggling to accept this new modified version herself). We are trying desperately to make the best of it, but we’re now admittedly overwhelmed and life just feels unfair.

In all of this, we have been lovingly surrounded by family and friends. My parents have dedicated their time and energy in retirement to care for me and my family- in the ways that I just can’t anymore. My dad drives 3 hours, each way, (almost every week) to come and help us with the kids and to drive me to appointments. My mom (and her amazing assistant, my sister) have become my caseworkers and spend their time on the phone battling the insurance company and banging down doctors doors, trying to get me the care and services that I need.
My best friend has basically kept me afloat emotionally for the last 6 months and begged me to let her finally raise us some money. I could go on for pages on the kind and loving people that have stepped into our lives when we desperately needed it most.
But for now, all I will say is thank you. 
Thank you in advance for the abundant support, prayers and well wishes. We are so incredibly humbled and grateful."

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