10 BEST THINGS ABOUT LIVING WITH A CHRONIC ILLNESS (PART 2)

Putting together this list has actually been quite cathartic and forced me to take a moment and count my blessing.  It’s too easy to get bogged down mentally with all the negatives and hardships that come with living with CKD- chronic kidney disease. I hope this will inspire you take inventory of your life and see that even on a cloudy day there is beauty to be found… you just have to look for it!

Now to round out the 10 BEST THINGS ABOUT LIVING WITH A CHRONIC ILLNESS…

6. New view on life – I am happier now than I ever was before.  Which is a (happy) surprise.  Something always felt missing from my life when I was a teenager and while I could never quite put my finger on it getting sick changed all of that.  After the countless surgeries and some pretty big health scares – hello no kidneys, cancer, internal bleeding, etc- I now appreciate everyday. Each day I wake up is fresh start.  Even if it’s a bad and I can’t manage to get out of bed, I still have that day. It’s a chance for me take care of myself. If that means resting all day or working out, or now even writing, whatever I am able to accomplish I try to see as a win.

7. Self-Care – I’ve been forced into a situation where if I didn’t take care of myself and make my health (physical & mental) a priority I would fall apart.  I have to watch my diet, my activity level, who I spend my time with and give my limited energy to. My resources are scarce so I have to be extra careful with how I allocate them.  This has helped me eliminate negative energy from my life, and stick close to those who make me smile and provide a general sense of ease and comfort to my life.  Great trick for everyone if you ask me.fullsizeoutput_143b

8. Free time – The biggest benefit of being on dialysis, sick and unable to work is I have a lot of free time.  I don’t know that’s it’s all necessarily free since I’m actively trying to keep myself healthy and my spoons replenished.  Some days I’m able to help more around the house, get a workout in to stay feeling strong and energized. But on days when I can’t manage to leave the house I am able to binge watch my shows, or I can throw myself into a new book and make my way through my new pile of new book… I seem to buy new books faster than I can read them and that pile keeps getting bigger by the day (HI – my name is Bridget and I’m a addicted to books).

Side note: If you have any books you’d recommend- wellness, health, fictions, history- send some suggestions my way!

Just a few of the many books in my “TO READ” pile.

Having this free time has also provided me with a unique opportunity to visit friends and see their everyday life.  Normally, I would be working and just as busy and frantic as everyone else.  I’d never get the opportunity to pop up and visit a friend mid-week.  see what their daily life is like.  It’s a rare opportunity as an adult to to have the time to connect on this deeper level with long time friends who’d I’d rarely see otherwise.

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Watching my childhood friend killing the mom game.

9. Naps – Everyone knows that naps are THE best.  If you don’t realize this I don’t know that we can be friends. Haha. Being chronically ill lets me take soo many naps.  I mean – yes, I obviously wish I had the energy to go a full day without rest – but naps are awesome… so I’m not complaining.

10. Connecting with People – To round out the list I couldn’t help but including the newest benefit I have found.  Sharing my story has already allowed me to connect with people on a deeper level.  When I was dating it was always a difficult subject to navigate. Oh what do you do for work – ummmm, manage my health and dialysis.  Then we launch into my whole back story. I always try to give the cliff’s notes version since my medical history reads like a Tolstoy novel. Looooooooooong and boring (no offense to those War & Peace fans out there). But by sharing this part of me I have found people will just open up to me about what they are struggling with.  This may be the best thing because I actually get to see and hear about what others are going through. Once they see I can open up to them they do the same. We are able to really see each other and appreciate that we are not alone. We all struggle, we all battle with our demons, we all have work, family & friend issues and if we would just open up and share these with each other we would see each other for the beautiful flawed humans we are.

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10 BEST THINGS ABOUT LIVING WITH A CHRONIC ILLNESS (PART 1)

Y’all know by now that I am always searching for the silver lining of living with a chronic illness.  I know that it’s easy to focus on the negative… because they are a TON of negatives.  But, if you take a minute and really look at your experiences you will see that you may be missing out on some of the unintended beautiful moments.  Here are the top five of the

10 BEST THINGS ABOUT LIVING WITH A CHRONIC ILLNESS

  1. Handicap Parking – I mean, this should speak for itself. I get to park for FREE in metered spots with NO time limits.  It’s by far the best perk of this wretched disease. While I feel ‘normal’ some days, I have plenty of hard days when I am beyond exhausted and it’s a life saver. Not going to lie, I’ve utilized the free parking one or two (thousand) times. The only downside is the judgements of people who can’t ‘see’ my disease and assume I am abusing the privilege. But, as my therapist said, “What others think of me is none of my business”.  
  2. Healthy Diet  – In order to keep myself ‘healthy’ I’m required to monitor my diet closely and eat well, or at least the dialysis version of that.  By following the strict dialysis diet rules- LOW Potassium, LOW Sodium, LOW phosphorus, LOTS of protein, LIMIT fluid intake (FYI- diet recommendations vary from patient to patient, these happen to be best for ME! If you are on dialysis or have CKD you should talk to your dietician and follow guidelines that fit YOUR own body)-  it allows me to avoid trips to the hospital and keeps my dialysis regimen steady. This may be an overshare, but when my second transplanted kidney called it quits in 2006 I stopped producing urine, so I have to be very careful with how much liquid I consume because the only way to get it off fluid is through dialysis and taking too much fluid off at once can cause it’s own set of issues (Low blood pressure, fatigue, tachycardia- resting heart rate over 100 beats per minute, etc…).  If I want to stay feeling healthy I have to eat right, and I have said the best/worst part of the diet is not being able to eat potatoes. NO french fries for me, but you know what helps keep weight off… NO FRENCH FRIES!
  3. Limited Hair Growth – A short term benefit of the disease during college was that I stopped growing hair.  Not a great example since I was really very sick at the time. But let me tell you what, not needing to shave my armpits because the hair just STOPPED growing was a pretty awesome benefit.
  4. Strong friendships – I have grown my friendships and reached a deeper level with those I am close to because being sick, in the hospital, and not always able to ‘hang’ I am able to easily weed out the surface level friendships while strengthening the deeper ones.  What I have ended up with is a tight crew who I know love me, support me and will always be by my side when I need them.
  5. Family – One thing that will always stand out as the VERY best thing to come from this disease has been the close relationship I’ve developed with my mom. We’ve been afforded time together that most people never get.  Normally as an adult you leave home. Go off and do your own thing. For me though, as an adult I have had to stay close to home and live with my mom and step-dad for years in order to get the support I need and have someone nearby in case I fell ill at anytime. My mom has also ALWAYS been by my side in the hospital. When you have spent as many hours in hospitals as we have you learn to entertain each other and just enjoy each others company (when I’m not starving and a total nag).  I can’t talk about family without mentioning my Dad.  Once your parent has literally given you their kidney to try and save your life it creates a unique bond between you that can never be broken or duplicated.

Check back next week for the remainder of the list!

SUMMER LOVING

Where do I start…

Well, let’s just say this has been one hell of a summer.  It has been over two months since my last post and a lot has happened since then.

This has been a summer of:

LOVE…

LOSS…

HEARTBREAK…

SELF DISCOVERY…

TEARS…

LAUGHTER…

JOY…

…and finally, a renewed sense of purpose, self and strength.

The summer kicked off with me meeting a suitor, we shall call him Pierce. I fell hard and fast for Pierce.  It was a bit of a whirlwind that knocked me off my feet, my game and my track. I got so caught up in this new romance I let my priorities slip. I stopped writing, I let my personal drive fall by the wayside and threw myself into him instead. Welp…. that blew up in my face.

As it turned out, Pierce was indecisive, rude, selfish, and pretty much flat out disrespectful. You know how those men are. They come in hot-  “Love bombing” you making you feel really great about yourself. Then they slowly start exposing their true selves. You start to see those red flags, but through those rose-colored glasses, you don’t see them for what they really are. There were a lot of ups and down, back and forth, yes and no, and ultimately I ended up heartbroken.

I spent so much of my time with and focused on this person and trying to make that work that I ended up losing sight of my own priorities and goals.  I find I do that sometimes. I get swept up and with my head in the clouds I forget to keep my feet on the ground. Essentially, the whole thing blew up and I was bummed.  Really bummed. That ugly depression reared its head again. I cried countless tears. Had a handful of those days where facing the world was just too much. I couldn’t bear to get out of bed, let alone leave the house.  

Then my little love bubble burst.

As a follow up to the kidney cancer I had removed two years ago, I have a yearly abdominal CT scan done to ensure no recurrence of cancer. The results came back and I am still cancer free (CANCER FREE OVER TWO YEARS NOW!!)… but being Chronically Bridget- always having some new issue pop up-  there was another issue.

Not only was my heart figuratively broken, I learned that it was literally broken too.  The CT scan detected an abnormality in my heart. I had an echocardiogram done to learn more about it and as of publishing this I don’t know the results.  I am (not so) patiently waiting to meet with a Cardiologist a doctor who specializes in heart and vascular function. Meanwhile, I am trying to not let a million different scenarios run through my head. I don’t know much at this point and am trying to stay as calm as I can about it.

More than anything I’m frustrated.

This is just how my life has gone since being diagnosed with FSGS.  There is always some sort of issue popping up. Through the years, I have had so many random health issues I can’t even remember most of them.  I see this as just one more. Everytime I seem to be getting healthier, back on track, and feeling ‘normal’, a new concern arises.

I have spent a lot of time throughout the years crying over these things, wishing my case was simple.  Not, as the doctors like to tell me: “interesting.” They like my case because I am NOT textbook. I somehow end up with a plethora of unique ailments that keep my physicians on their toes.

Fun for the doctors… not so fun for me.  

So, now I wait.  

I wait to hear if this is a small problem.  

I wait to hear if I need new medications for this.

I wait to hear if surgery is required.

I wait to hear how this will affect my life going forward.

Always changing.  Always adapting.

We all do it.

I guess for some of us it’s a bit less life and death though.

As I wait to hear the news I am not just sitting around.  I’m not wallowing in fear and doubt. I’m not crying myself to sleep every night.  I am renewed. It’s funny how hearing something like this has a way of kicking your ass and putting life back into perspective.

A positive from this summer… besides the amazing times I had with my friends (I’ll share some of the ups from the summer in another post soon)… is that I have learned I don’t just want, but NEED to be by the beach.  Every time I was down, feeling lost or hopeless I would head to the beach, put my toes in the sand, look out at that great big ocean, and realize my issues aren’t the end of the world.  I’m not the center of the world either – don’t be shocked… but it’s true ;). I am but a measly grain of sand. One tiny, yet important piece, of the puzzle. Sitting on the beach would always center me and bring me a sense of calm, joy, and peace I don’t find elsewhere.

The time I spent this summer near the ocean helped me refocus, grow, and learn not only about the world and myself, but also re-learn to love myself and my worth as I continue to adjust my expectations, goals, and dreams.

For now that goal is to (FINALLY) move out of my parent’s place, after 3 years- and about 2.5 years longer than planned, and head south to SAN DIEGO. Return to my college stomping grounds.  Come full circle from when I first was diagnosed with FSGS and attending college in San Diego (San Diego State –  go Aztecs!)… before any of the transplants, dialysis, cancer, or heart issues.

I want to return to the place that brought my so much joy 18 years ago.  

I think I’ve been through enough.  

I think it’s time.

I’m ready to bring that piece of joy into my life.

~Bridget (BIRD)

FINDING THE LIGHT

Depression.
Anxiety.
Suicide.

These have all been in the news cycle recently due to the recent deaths of some major celebrities.

We’re having a conversation about mental health.

Finally!

My only hope is that we continue this conversation. We shouldn’t have to have it shoved in our faces to see the problem.

Depression is a very real thing that many people deal with, suffer from, and try to handle everyday. They often hide it from the world. It’s something that people feel ashamed to have. They don’t talk about it. They put a smile on their faces and suffer alone.

I know this because it’s happened to me.

After years of dealing with my invisible disease, countless people telling me “you don’t look sick”, and striving to fit this societal view of ‘normal’ I reached rock bottom at the beginning of this year.

I’ve always managed to keep a handle on these thoughts—pushing them down and looking at the bright side of life…but I reached a point when I couldn’t see the light anymore. I couldn’t get out of bed. I couldn’t breathe.

The thought of interacting with anyone, even close friends was terrifying. I pushed away my loved ones and secluded myself. I was ashamed. I was the person who handled her disease and condition so well.  I didn’t let it get me down. But I had reached a point where I lost that part of me and I didn’t want them to know I couldn’t handle it anymore.

I faked it for a looong time…then I couldn’t do it anymore.

I didn’t return phone calls. I cancelled plans when the anxiety I had about schmoozing and pretending life was okay became too much.  It felt like a huge weight was on my chest slowly suffocating me.

You know when you’re playing in the ocean.  Swimming around. Fighting the surf but always managing to make it through the waves…a little hop and you’re right over it.  You start to get a little worn out. It’s nothing you can’t handle though.

Then all of the sudden you get knocked down by a wave. You’re underwater… you can’t tell which side is up… you’re swimming… paddling… flailing.  

Then for a brief moment you are right side up and see that glimmer of light.

You start to see direction.

You work and work to get there but just can’t quite reach it.

And as wave after wave crashes down you continue to spin, catching a glimpse of light and promptly having it disappear again.

Then all of the sudden, out of the darkness a hand reaches in and pulls you out.

For me that hand was my Mom.  She never left my side. She always had that hand there for me to grab.  It just took me awhile to see it and grab on. She guided me into seeing a counselor, encouraged me seek professional help. She knew that I was in a hole and needed a pro to get me out.

She lent me her hand…did what she needed to do to show me that no matter how I felt she was there.  She was never leaving my side. She would always pull me into the light…as long I was willing to grab on.

(My Mom has always been on my side and I don’t have room to get into all she has done for me here…more on that later!)

I had plans for life that were ripped away in 2015…that big wave that knocked me over…and I’ve spent the last few years trying to rebuild them. Trying to go back to what I was. Trying to get right side up.

It wasn’t working though.  The waves kept coming and kept me underwater… drowning.

After receiving a few blows by way of unsuccessful surgeries trying to clear up an infection I had from my days on peritoneal dialysis, I was broken, I was beaten down, I had lost hope.

It had been 18 years and I was done.
I was ready to call it quits.

Peritoneal Dialysis (PD) is a form of dialysis done at home. I would use a machine that did dialysis for me while I slept. This allowed me the freedom I wanted to have. I wanted to be ‘normal’.

And for a while…I was.

I had finished my degree in Political Science and even had the opportunity to live my dream of working in the State Capitol. I tried to keep up. I tried to do what all of my able bodied friends and colleagues did.

As a spoonie (a spoonie is any individual who suffers from a chronic illness), I couldn’t. At least not all of the time.

I would end up in the hospital at least once a year. Sometimes more. I had endless doctor appointments, tests, exams, you name it. I’ve probably done it.

This always kept me back. I couldn’t be out and about all the time.

I was always exhausted.

I was always a little sad.

I’m not like everyone else. And I struggled with that fact for a long time.

I would have days of despair…thinking I couldn’t go on, thinking I couldn’t handle another day of it. These thoughts never lasted too long though. And I never made an attempt to actually end my life. But boy…I sure did think about it.

When I moved home in 2015, I started a new journey. One of recuperating, resting, and attempting to make my way back to my old life.

I had suffered from an infection in my peritoneum that forced me to stop PD and go back to clinic hemodialysis three days a week.

The doctors attempted to clear up the damage done from the infection. After multiple surgical attempts we came to a tough realization…

PD was no longer an option.

Working full time was no longer an option.

My previous life was no longer an option.

I didn’t know what to do.

I didn’t how to feel.

I couldn’t find the light.

I watched everyone in my life go about life as usual—not to say they all didn’t have their own struggles. But they were able to continue working hard, own homes, have children, and live day-to-day without the worry of how they were going to keep going. Keep fighting. Keep their independence.

It was at the end of 2017 that I slipped into depression. Hard core. Worse than it had ever been before.

I was on the phone with my girlfriend. We were discussing life and how we were both struggling.  I couldn’t stop crying though. I couldn’t control my tears. I was talking about how I couldn’t do it anymore. This was a change for me—it was the first time I said it out loud. I didn’t want to go on. I couldn’t go back and I didn’t know how to possibly move forward.

I cried every day.
I couldn’t get out of bed.
I cut myself off from the world.
I didn’t see a way out.

I had been on a mild antidepressant for years but hadn’t been in therapy. I was trying to pull myself up by my boot straps and do it alone.
But…

I couldn’t.

I was stuck.

I didn’t see anywhere to go.

I wanted it to end.

Through tears, sadness, feelings of loss and eventually support from my friends and family (when I finally allowed them back in) I made the decision to get help.

I started seeing a psychiatrist and a therapist.
I was put on new antidepressants.
I dug deep inside and somehow managed to find the strength to go on.

I’m one of the lucky ones. I didn’t let depression win. Yet, I can completely relate to those who aren’t so lucky and lose the battle.
There are moments when the thoughts are too much to bear. You’re underwater. You can have a seemingly good life… but you’re still drowning.

I knew my depression was caused by life circumstances. So I did the hard thing. The thing many people never get to do.  I changed those circumstances.

I made peace (and am now even a little excited) about moving on from my career path.

I found a new way to live.

I tried really hard to find the beauty in life.
I tried to find a reason to get out of bed EVERYDAY.

By the time the new antidepressants kicked in I had found new hobbies. New things to do with my life. New ways to make myself feel better and be more productive.

It’s one of the reasons I started this blog.
I wanted to share my story.
Hopefully make others in my situation not feel so alone.

I can’t describe how helpful it’s been for me. I’ve connected with others in my same situation.  Thank goodness for the internet and its ability connect us. I don’t know anyone else who deals with what I do. It always felt so lonely, so isolating. Friends and family try to empathize but they don’t know.  Since I’ve started to share my story so many people have reached out to me to share their stories too. For the first time in 18 years, I wasn’t alone anymore. I had people all over the world who were just like me.  

They had the same problems.  

The same thoughts.

The same fears.  

We connected in a way you only can with someone living with a chronic condition.

Living with the fact that your body is fighting you all the time.
Living with the knowledge that you aren’t the same.

You know what…all of these are ok!

We all have struggles. We all have demons. We all are fighting some battle.
It’s these thoughts that help me not feel so alone. Just because another person isn’t fighting the same battle you are it is important to remember they are fighting something. It’s just a fact of life.  

It’s freaking hard.  Adulting is hard. Being happy is hard.

I try to be kind to everyone because you never know what they are dealing with.
Something as simple as a smile can go along way. I know it does for me.

Let’s stop the stigma about mental health.

When our bodies are sick we’re fine going to the doctor and nobody judges you. You can take a sick day. You can take a step back and recover.

But when your mind is sick, it’s somehow viewed as shameful. Like you are less than. If you need to step back, rest and take care of yourself it’s not viewed with the same level of acceptance.

I want to remind you…It’s ok to be sad. It’s ok to be depressed.

If I can leave you with one thing it’s this:

If you are having a hard time, try to get help.

Try to talk to a friend and try to go to the doctor, the same way you would with a twisted ankle.

If you know someone going through a hard time reach out that hand.

Check in on them and try to help.

Sometimes it’s the littlest gestures that make all the difference in the world.

There’s no shame in it.
Everybody struggles.
And everybody should feel ok about getting help.

I did, and it changed my life.
I’m now in the best place mentally that I have been in years.
I have my feet firmly on the ground again.

I opened up. I got help. And it changed my life.
Now instead of chasing a dream…I chase joy.

~Bridget (BIRD)

THE BEAUTY OF BIRTHDAYS

It won’t surprise most of you when I say I LOVE BIRTHDAYS! Especially my own.

As a child I always appreciated birthdays. Having divorced parents, I always got TWO celebrations, cakes, parties, gifts etc… You get the point. It was always awesome and I may have gotten a little spoiled by it over the years. (Being the baby didn’t help the situation). The thing I never really understood though was WHY your birthday was so important.

#1
Singing along to Happy Birthday #1
Taking this wish thing seriously even at age 2!

It wasn’t until I was in college, and sick, that I began to understand the true meaning of a birthday and became one of those people who make a big ol’ deal out of it.

That shift occurred right before my 21st birthday.

About 6 months prior to turning 21 I learned that my FSGS had progressed to a point where I was in Stage 5 kidney failure. Pretty much this means that you are in the last stage of kidney failure, also known as End Stage Renal Disease (ESRD), your kidneys have lost nearly all their ability to do their job effectively, and eventually dialysis or a kidney transplant is needed to live.  

Once I had progressed to this point I had to drop out of school (the first time), move back home with my family and start dialysis while I waited for a kidney. I knew the quickest way to a new (to me) healthy kidney would be through familial testing to see who would be a good blood and tissue match.  

I was SUPER lucky and the first person to get tested was a match! With that, we started down the long and arduous journey through what seemed like a million tests and doctors visits to ensure my donor and I were both healthy enough to undergo the surgery.  

I did end up on dialysis, but only through the grace of God, for a short 3 months- then came transplant time. On May 13th, 2003, a short two weeks before I turned 21, I was given a new lease on life when my Dad gave me his kidney. Not only had he given me life 21+ years earlier, here he was doing it again. The surgery was a success and we both left the hospital within a week. I had complications that I later found out were due to the almost immediate recurrence of FSGS that started to affect my new kidney, but I was still able to go home.

There a few things I should mention about transplants, not just kidneys but in almost all cases:

  • Your body reacts to the new organ, tissue or whatever as being a foreign entity and naturally tries to fight it off which would lead to rejection.  
  • To keep your body from rejecting the transplant you are put on a heavy dose of immune suppressing medications so your body won’t reject it.  

With all of the anti-rejection medications I was on my body wasn’t trying to kill my new kidney, but along with that came the fact that my body could no longer fight off any kind of foreign bacteria either. The result of this being that after you are released from the hospital and return home you are pretty much stuck there for about 3 months as your body adjusts to the new organ and you slowly lower the doses of the anti-rejection medications.  

So, there I was, turning 21, a big birthday in just about everyone’s book.  

I had looked forward to this day for years.  

The day I could buy alcohol.  

It makes me laugh now… but at the time it was a HUGE deal. For me though, there was no midnight drink, there was no drink at all. If I even wanted to leave the house I had to wear a mask. But dammit I wasn’t going to let anything stand in my way. I was determined to mark the occasion somehow.

My girlfriend was in town visiting me and she helped me do just that. She drove me to the grocery store, I couldn’t drive because I was still on pain medication, to buy alcohol for the FIRST time. I didn’t care I had to wear a mask. It was MY DAY and I was going to do what I wanted.

So, we sauntered into the store, headed straight to the liquor section and picked up a four pack of Bartles & Jaymes (NO judgements okay… I was a newbie, I didn’t know any better). I walked straight up to the cashier with my B&Js in one hand and my ID (which now unlocked access to this whole new world) in the other. I handed them to the cashier and stared her straight in the eyes as she looked at the ID, looked back at me, the ID again, then rang me up.

I must have looked insane. Walking around in my mask with only my eyes peeking out trying to buy booze I wasn’t even able to drink. But, wow, did I feel proud walking out of that store with my newly, legally purchased booze.

I had just undergone the worst surgery of my life (at least at that point in life) and I wasn’t going to let something as silly as no immune system stop me from having a good time.  

That was also the first time I had ever really stopped to reflect on lucky I was to turn a year older.  

I had just stared death in the face and beat it. 

Little did I know at the time that it wouldn’t be the only birthday I couldn’t celebrate properly.

A short 8 months later I was back on dialysis, due to recurrent FSGS, and had started to wean off of the anti-rejection meds. Turns out the doctor’s weaned me off too quickly and I started to reject my kidney. As May rolled around again, I was super sick (again), had to drop out of school (again) and was back in the hospital. I ended up having to have the new kidney removed and somehow developed pancreatitis along the way.

Pancreatitis is an inflammation of the pancreas and the main treatment is fasting. As in, not only can you not eat, you can’t drink any liquids, or consume anything by mouth AT ALL.  You can’t ingest anything, because everything comes back up. It’s painful and just all around awful. I had to have a tube put up my nose, that went down my throat and into my stomach to remove everything. It was pretty much the worst thing ever.  I felt like I was choking on something 24/7, I couldn’t eat or drink and generally felt sick the whole time.

Due to the pancreatitis my hospital stay post surgery ended up lasting a few weeks. So, there I was 1 year later back in the hospital, only this time it extended through my birthday. On my big day all of the nurses were so sweet. They brought me a cupcake, sang me happy birthday, then promptly took the cupcake away.  I wasn’t allowed to eat it! Apparently birthday cupcakes count as food. Ugh! (I hoped they were like birthday/holiday calories… they don’t count.)

There I was 22, in a hospital crying in frustration from being sick, knowing my dreams had died with that kidney and super sad I couldn’t eat a cupcake. Anyone who has had to fast for an extended period of time, knows it brings out a whole new level of HANGRY! Seriously, BEWARE. You don’t want to be anywhere near them.  I definitely owed a few people apologies for being so nasty to them But, I was alive, I had made it another year, and I wasn’t giving up.

In the years that followed I learned to appreciate each birthday that rolled around more and more. I WAS ALIVE! I was kicking ass and taking names! I made it!

Since those early bad birthdays I’ve had some pretty spectacular ones and some really terrible ones too. Like when I turned 30 and all my best friends from all my walks of life came together to party in Las Vegas (one of my best ones)! Or, in 2005, when a couple of my friends came to visit me in Sacramento, we were supposed to do a boating day on the Sacramento River, but (and there usually is one), due to a nasty infection we stayed in my apartment all weekend where I was doubled over in excruciating abdominal pain and ended up in the ER by the end of it. I was admitted and spent yet another birthday at the hospital (one of the worst ones).

I’ve made up for that birthday cupcake debacle ten fold!
Just a cupcake tower for my golden birthday!

You know what.  

I made it through.

I kept fighting.   

I never gave up.

So here I am, the birthday girl, celebrating life. Celebrating my friends and family who have gotten me through each year with a smile on my face. Celebrating that I’ve come this far. Celebrating that I made it through these past 18 years and knowing that nothing can stop me now.

To all of you who hate your birthday, I implore you to rethink that and view it as a privilege.

Each day we wake up is a gift. Each breath we take gives us fuel to keep going, keep fighting, and keep believing in our ability to conquer anything.

“My belief is that it’s a privilege to get older – not everybody gets to get older” – CAMERON DIAZ

“I am of the mindset that it’s a blessing to grow old. That if your face has lines around your eyes and mouth it means you’ve laughed a lot. I pray I look older in 10 years, cause that will mean I’m alive.” – Pink

“Age is an issue of mind over matter.  If you don’t mind, it doesn’t matter” – RAMONA SINGER

~ Bridget (BIRD)

18 YEARS

My birthday is coming up. In a few short weeks I will be 36!

Not quite sure how that happened so quickly… but here we are.

As this day approaches I have been thinking about age, and all that comes with it.

I know age is just a number… you are only as old as you feel.  

It’s just that THIS specific number represents a huge milestone in my life.

I have now officially lived longer with FSGS than I have without it.

I keep asking myself…

How is it 2018 already?

How have I made it 18 years (?!?!) as an adult?

How did I get here?

Let’s set the scene: It’s 1999, I’m a senior in high school, and my biggest worry is if I can find the right shoes for my homecoming dress (hint: I did!) and one day at school I realized my ankles are swollen.

Don’t you just love those 90’s shoes?!
Love those 90’s fashion choices

I thought maybe I’d had too many Cuca’s burritos (shout out to the Redlanders who know the struggle), but the swelling continued throughout the week. I saw a doctor, who ordered a urinalysis, and diagnosed that I was having kidney issues due to loss of protein.  The next day I was referred to a Nephrologist– a doctor who specializes in kidney function.  

It all happened so fast.

At the time I had absolutely no idea what was going on.  Was it serious? Was it just a minor issue?  Could I take a few meds and feel better? I couldn’t even begin to fathom the ways that day would change my life and start me on a path I never could have anticipated.

It was in January of 2000 that I received the official diagnosis of Focal Segmental Glomerulosclerosis (FSGS).  

That day stands out in my mind for multiple reasons:

  1. It was my first time having to spend the night in a hospital (other than when I was born of course).
  2. It was a friend’s 18th birthday and she brought me lotto tickets! Not only did I win the lottery that day (literally – $10!! and figuratively– receiving a rare disease diagnosis), I also set down a road of self discovery, lots of pain, personal growth, and having to grow up faster than I would have liked, all the while coming to realize I was a much STRONGER person than I ever imagined I could be.

I was still a kid, only 17, when I received that fateful diagnosis.  I was a naive teenager. I thought I could take some medicine and I’d be better.  It didn’t even cross my mind for one moment that it would last this long… that it would be a chronic illness I’d have to deal with the rest of my life.

I had NO IDEA what I was getting into. I had never been sick before this, never broken a bone, never even had to go to the hospital. The worst physical ailment that had befallen me was getting the chickenpox, TWICE. Sometimes I look back and envy that young girl who still envisioned a bright and shiny future.  Other times I look at that girl and feel bad for her and the treacherous journey she had ahead of her with NO CLUE what was coming. When I was diagnosed, I was a little scared but just could not grasp the severity of the diagnosis.

I didn’t even cry.

It was on that day that every plan I had for my future went straight out the window, without me even realizing it.  I wanted to live away at college, study abroad, backpack through Europe, stay at hostels. I wanted to be young, wild, and free.

Life had other plans for me.  

Starting to show signs of Prednisone induced “moon face”

I was able to do the college thing for a few years, but ultimately ended up on dialysis, tied to home because of my need for extra care.  

I never got to travel, I never went to graduate school as I had always planned to, I never lived or studied abroad… or even outside of California for that matter. Although, if you are tied to home… it’s pretty freaking lucky that home is sunny, beautiful Southern California!

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UC DAVIS class of 2007 – still rocking that moon face 

Through a few transplants (I don’t have the space to get into it here… way more details on that to come in a future post!), I struggled through college but made it out the otherside… degree in hand. 

It was my own experience with the healthcare system that led me to my career in politics in my 20s. I saw how flawed the system was and how many people were hurting and not receiving the care they NEED TO LIVE because of insurance issues.  I dealt with plenty of those myself along the way. Fighting for my own care and having to play my own patient advocate inspired me to give back through public service. I wanted to help those who struggle to help themselves.

Family and this new passion led me to living in Sacramento.  

It was in California’s capital city that I discovered new passions and met amazingly smart people who were trying to change the world.  I made an entirely new group of friends who, now, are like family. There are so many experiences I ended up having in life that because of that diagnosis… and I’m grateful for every one of them.  

Sailing around Puerto Vallarta 2010

 

Thunder Valley with the Sacramento fam

Instead of being young, wild, and free I was young, tired, and home bound seemingly ALL THE TIME.  I gave up trying to imagine a life without FSGS a long time ago.  All it did was bring pain and proved, repeatedly, to be a fruitless exercise.  What was I going to do… wish it all away?  All I was doing was wishing for a life that ceased to be possible the day of my diagnosis.

My disease is now an adult.  It’s been here 18 years and has no plans on leaving anytime soon.  I learned acceptance many years ago, and I have to say, it was the best thing I’ve ever done! It allowed me to live the life I had to the fullest extent possible.

Zip lining through Puerto Vallarta

So… in honor of the big 36 for me and 18 for my FSGS, I have a few fun things planned within the next few weeks that will bring the thrills back. I will do a post on my adventures after I make it through. STAYED TUNED.  Things are about to get… lively.

For a few brief moments… I will be young… wild… and free (like a BIRD).

~ Bridget (BIRD)

SAYING YES

 

I am so grateful…

for a super supportive family,

for the roof over my head,

for clothes on my back,

for the medical care I’m able to receive…

Without all of this, I’d never have the chance to soak up every last drop of life.

Most of all though, I’m grateful for my freaking AMAZING friends.

I went through a pretty rough breakup a few months ago and wasn’t sure how I was going to get through it.

After having been through so much- physically and emotionally- I can say that, by far, this was the hardest thing I’ve done.  Through my heartbreak, I was lonely, depressed and just felt so lost. Being an adult, living in a new place, WITH your parents is already difficult to handle. Throw in trying to date and (Holy F!) it’s freaking ridiculous.

Now, throw in a constant battle with your body, due to a plethora of health issues from a chronic illness, and imagine how much harder that makes things.

When dating, everyone is trying to sell themselves.

Look at my great place…

Check out my awesome career…

Oh hey, I’m a world traveler too…

Then, there’s me.

My place… it’s beautiful… but it’s not mine.

That career… oh, you mean the one I had to walk away from?

Travel? I have been lucky in the past to travel a bit… but nowadays I’m tied to a machine three times a week. I can’t go too far or for too long.

These are some of the obstacles I face, making it exponentially harder to meet someone. Which is super fun. Or not…. ugh.

So, when I did find someone… I held on tight. I was in love. I fell hard and fast.

Then, like happens to us all, it fell apart- there were tears, self doubt, questioning what went wrong. Then, finally, acceptance… not without A LOT of help from my friends.

I was in the depths of my sorrow when, right on cue… and not surprisingly, since they’ve always been around whenever I needed them… my girlfriends all stepped up. They invited me to visit, stay with them, explore new places, and generally just have fun again and enjoy life.

I did the touristy LA thing.

I “March(ed) for Our Lives,”

I played Skee Ball at a hip downtown bar,

and, of course, consumed an insane amount of food, lovingly referred to as a ‘Bang Bang’- when you’ve finished eating at one spot, you leave, go straight to another place and eat again.

If you haven’t tried it yet. I highly recommend it.

It soothes the soul.

(PSA: I don’t recommend this as a regular activity.  Let’s just the folks at dialysis weren’t too pleased with the large weight gain that weekend. — Also, TOTALLY WORTH IT!)

Marching in downtown Los Angeles.
Cereal Killer Cheesecake from The PieHole! It’s a MUST go to spot in downtown LA.

I visited the stunningly beautiful Pacific Northwest… Bellingham, Washington- I’m looking at you. I had the opportunity to stay a few days with a long time (20+ years) friend and her ridiculously adorable kids. Seeing the unbridled excitement and vision of the world from their eyes helped bring me back. We enjoyed time in the great outdoors… not usually my vibe… but Bellingham’s nature game is strong! I got some girlfriend time in… time that is invaluable and doesn’t get to happen often enough.

Stunning Bellingham, WA

Then, most recently, one of my very best friends- recently back from traveling the world (Check out her adventures at SHE GOES GLOBAL)- came to stay for an extended visit. Having this time together has been spectacular. We’ve had those deep conversations you can only have with someone who truly gets you. Delved into the parts of our soul we haven’t shared in a while. We explored new areas. She even helped me get this blog up and running. (SHOUT OUT!!)

Acting as my biggest cheerleader she’s inspired me to open up, take back control of my narrative, and get my mojo back.

I’m returning to the Bridget I knew and loved for so many years. I had lost my way… but finally found the path again.

Now, I’m saying YES…

to adventure,

to meeting new people,

to trying new things,

to blazing a new trail,

to realizing that my life is pretty fucking amazing…

I’m grabbing life by the horns, looking it straight in the eye and saying…

I GOT THIS!

~Bridget (BIRD)