I can’t really put into words how having an unruptured brain aneurysm has impacted me, but I can share this blog that I wrote as a coping mechanism throughout the hardest parts of my journey. Maybe someone will read it and know they are not alone.
Sep 4th, 2013
Aneurysm. You ever have that gut feeling and you just don’t want to believe it? You ever watch your Dr. to see if he looks at you a little differently? Mine did. I saw it, Bryan didn’t. My Dr. spent a little too long doing my neuro exam, well longer than he did the first time I saw him. Yep, I scheduled my first neuro exam on the first day of the school year. Really, I couldn’t have done this in the summer? I heard what no one wants to hear, “I’m not sure what it is, lets do more tests.” So off to the MRI machine I went. Who knew how claustrophobic I was. Back to Dr. appointment #2 to get the results. Nothing like 3 Dr’s appointments within the first 6 days of school. After all the weird, long looks I wanted to scream “get to the point!” Tell me how much my life is about to change. Don’t show me my MRI that looks totally normal, show me my MRA that doesn’t.
I’m no Dr. but I took enough gross anatomy and neuro-anatomy to know what my brain is supposed to look like. The brain he was showing me didn’t look like that. Aneurysm, yes I have an aneurysm. Give me the facts and let me move on. The facts weren’t fun…. another Dr……. no working out……. a month of waiting.
Not me, I need a plan. I FB’d my sister’s boyfriend to make sure he would be there to support her, I told our dear friend Molly making sure she would be there for Bryan. No, I didn’t purposely not tell Tracy, she just has her own stuff to deal with right now. I met with our lovely neighbor Michelle knowing she and Tim would take care of Bryan and Hayden. Done, everyone had a support in place to get through this. Me, I had Bryan, who knows I won’t be talking about this for a looooong time.
I told my boss then had to, nope, needed to get back to work. Don’t think about it, just work. Not thinking might equal not being true. Not telling my parents might mean it isn’t happening.
Sept 6th 2013
I sucked it up, made the most difficult phone call to my parents. I did it while driving knowing I couldn’t cry. I did it in the carpool lane knowing I only had a few minutes before Hayden got in the car. There’s no way he’s going to know anytime soon. I practiced on my best friend Ken. I cried for the first time, texting it-doesn’t bother me, FBing it-doesn’t bother me. Saying it out loud really sucks.
I have an aneurysm. Please be strong, don’t cry, don’t worry, don’t interrupt, let me get this out.
That’s pretty much how my conversation went. Oh and I won’t know anything else for another month…….beep…beep. The Dr’s calling and there’s a cancellation and I can go to CU on Tuesday. I’m relieved to get in so fast but wonder do you really have a cancellation or did you look at my MRA and think “Oh boy lets get her in fast.”
I have my support system and don’t want to, cant tell anyone else, but I know my friends at work are really wondering why I’m sneaking in and out of the office all the time.
Tuesday cant get here soon enough.
September 10th, 2013
I’m a planner. I know my options when I walk into my new Dr at CU. I walked out in shock, my planning sucked.
Yes I have options, a less invasive approach that only has 10-15 years of research behind it, meaning we’re not sure what will happen to me when I’m 50. Or a more invasive approach with a better prognosis. Of course it’s a no brainer. Terrifying but a no brainer. Again, I need facts. I got pictures, sketches, descriptions, facts. I’m not going to cry, not going to cry, I won’t cry. My mantra the entire hour I was there. Bryan and I and a whole lot of old people in the office. They’re not crying, I won’t either. The Dr talked and I watched his hands, He drew and I watched his hands. He described and I continued to watch. Were they dirty? Did they shake? He’s about to break apart my skull and touch my brain but not with dirty shaky hands.
Choices, verbally I heard then, emotionally there wasn’t any. I’m a mom, a wife, a sister, a daughter, a friend, more invasive was they only option. My Dr told us not to make a quick decision, go home and think. My thinking was done. I’m having brain surgery.
The ride home was quiet. My face hurt from holding back the tears. The only word I said to Bryan was “terrified.” Suddenly “I have an aneurysm,” was so much easier to say. “I’m having brain surgery,” sounds terminal.
Plan, plan, plan. When was I going to do this? Who was covering me at work? Could I possibly do it and have no one know? Christmas shopping for the family. Birthday shopping for Hayden? The list goes on and on.
Bryan and I knew we only had one option, surgery.
I need a CTscan. Really, I’m not done with tests? CTscan will let the Dr make a surgery plan. It’s a long story but I need you to think “left side, left side, they need to enter my skull from the left side.”
September 14th, 2013
Girls night dinner. I have the best girl friends. We have dinner every month and laugh and laugh. Not this month, I dreaded it. I know I needed to tell them….. I didn’t want to ruin the night.
I have an aneurysm. I’m so tired of saying it. Last week I went and got a massage. Worthless, please don’t touch my neck, please don’t touch my head. What if it popped? Stupid I know but there will be no more massages for me until this things is gone.
Tell your friends, go to Bill Cosby with Bryan. That’s all I was thinking. I’ve noticed I’ve become a little selfish lately. I’ll tell you what you need to know but no more, no less. Don’t ask questions I don’t want to talk. It’s all about me and I want to deal with this my way.
Who know if that’s the right way or wrong way but it’s the way I’m dealing with it.
Facts, just give me the facts, I don’t want feelings with this.
September 16th, 2013
I’m so tired but sleep is not an option. I’m asymptomatic so I know it’s not the stupid aneurysm, just the stress.
I’m missing my favorite friends wedding in Ireland. I’ve wanted to go for years. She was in my wedding and I want to be there for her. NOPE, stupid aneurysm.
We’re supposed to stay in a fantastic house in Ireland with Michael, Christine and their 2 beautiful girls. NOPE, stupid aneurysm.
We’re supposed to celebrate Halloween in Ireland with the Singers. NOPE, stupid aneurysm.
It won’t win, I won’t let it.
Left side, left side, left side. Tomorrow is my CTscan, no food, no water, no nothing until 12pm. Stupid aneurysm, you won’t win.
I’ve been making lists for weeks. I plan. My phone is constantly beeping with reminders. I plan. My thoughts are written on notes all over, tonight I’m putting them all in one place.
I plan, I write, I plan, I write.
I call my Dr’s secretary, we’re on a first name basis now! I’m a planner. Surgery Monday November 25th. I text everyone who needs to know. They know me, I text so I won’t cry. Saying it out loud is just too real. There will be no count down. Life will go on. I need it to.
There’s a fine line between needing to tell people but not wanting anyone to know until closer to the surgery. No pity looks for me.
IT WILL NOT WIN.
October 4th, 2013
This time last week I was starving waiting for my CTA scan. I thought I had gotten a little used to being the girl with the aneurysm but boy did they all look at me a little weird. I guess they don’t see too many people walking around completely asymptomatic. There’s not a whole lot of eye contact as nurses are double checking your name, DOB and reason for scan………… that is until you say aneurysm & then you get the double look like they really need to make sure that’s what you said.
the scan was quick, uncomfortable but quick. Now the waiting game begins. I can’t decide if I want November 25 to come fast or slow.
October 14th, 2013
#$@#*$#@ First quarter!!!!!!
All I kept thinking was get through first quarter, don’t stress, just get through first quarter. November 25 isn’t until 1/2 way through 2nd quarter.
F@@@ing first quarter is over.
Once I knew Ireland was out of the question I blew some money and booked tickets to CA to go to Disney. Me, the frugal one spent $ I didn’t have instead of saving for surgery. We have a 4 day weekend so it’s perfect timing. Hayden has no idea. We’re just going to wake him up on Thursday and get on a plane!!! I hope he’s as excited as I hope he will be.
Yes Mum, I checked with my Dr and I can fly!
Now that first quarter is over reality is setting in. I’m trying to stay positive but the reality is weighing me down. I will get through this, I have to, right??????
I’ve still told few people but now that I only have a month left of school I know I need to tell others.
1. Hayden’s teacher- I need her to offer some extra TLC, it will be a tough month for him
2. My co-workers- I know some won’t notice I’m gone, others will. Part of me wants to send an email but who wants to read that? Who wants to reply to those emails? Not me. Who wants to stand up in a staff meeting and make this announcement? Not me. No tears, just the facts, that’s all I need to say, right?
3. My students parents- ugh, the list of people who need to know just keeps getting bigger.
My lists just keep getting longer, plan, plan, plan, that’s the only way I can keep some kind of control.
Hayden needs a haircut, I need to figure out hockey carpool, I need to buy his birthday present, ahhh, our guest bathroom has no floor and my Mum is coming to stay, I need to book Lucy in the kennel, will Mabel still be alive in November, who will watch her.
Lists, plan, lists, plan, making me stress, relieves my stress, makes me stress, relieves my stress.
I wonder how long I can pretend 11/25 is far away.
F***ing 2nd quarter…….please, don’t start.
October 25th, 2013
This date next month a Dr. will be touching my brain, weird.
It’s getting harder and harder to keep it together each day. I’m so very tired trying to hold it all in. Disneyland was wonderful. Hayden had no idea. It was a great surprise. I admit I did have tears as we first walked in, would this be our last family vacation? I try not to think like that but sometimes it gets the best of me. Still it was great, I needed it so very much.
It’s now officially 2nd quarter……time to start telling people. We had Hayden’s p/t conference on Tuesday and I thought I was totally prepared to talk about it, nope. No chance. Bry did it for me. Maybe he could follow me around the next few weeks and tell people for me! Bry got a little teary telling the teacher, that kicked in for me. This is way serious, Bry’s not a crier.
I’ve been waiting to talk to a co-worker to ask her to take our family pictures, again, not trying to be morbid I just want to make sure we have a good one. Who know what my head will look like after. I totally broke down, thank goodness for great co-workers. She told me she already knew, boy am I amazed how well she kept that secret. She knows friends of moms. I’m starting to think my secret may not be so much a secret after all.
The girls at work have no idea how much they help me through each and everyday. They know exactly when to ask questions and when not to. On Monday I’ll tell the SLP department. I’m considering it my practice run because the week after I have to tell the rest of my staff. I’m practicing in my head everyday and it sounds great but I know I’ll cry like a baby when I really have to do it. I know the girls will be there…….crying with me.
Let the countdown begin……….
October 28th, 2013
Ireland, I should be in Ireland today. I just saw pictures of my friends together and it made me so jealous. I REALLY wanted to go. I know people don’t understand how I managed to go to Disney but can’t go to Ireland.
Keeping up my positive attitude is getting harder and harder. “The” day is getting closer and people keep asking how they can help, I still keep saying, “I don’t know.” I can’t even think about it. Today I sent an email to leadership team, sat in my office and cried praying no once would come in. This afternoon I told the SLP department, cried like a baby but I did it.
My biggest fear is coming true, the more people that know the more I have to talk about it. My days of pretending seem to be long gone.
My back and neck are soooooooo tense, a massage would be great but I’m still terrified “it” will pop, I know, I know, that’s stupid but I still can’t get a massage.
Still stuck between wanting the time to go fast and the time to go slow. I want it OVER.
I lay awake all night last night wondering how I was going to tell Hayden. How do you even begin? I got out of bed early and went to the gym to spin. I know Bryan thinks I got up early…… little does he know I never slept to being with.
People keep telling me not to worry about taking time off work, that’s waaaaaaay easier to say than do. There’s still planning, scheduling, meetings, ahhhh. How do you not worry about that?
Last week in combat class I imagined beating the crap out of my aneurysm. Boy did it feel good, until the next day when I could barely move my arms! Today I squished it over and over with my bike in spin class, tomorrow I’m planning on drowning it swimming laps in the pool. It will not win! Remember my boss said “you’re too strong and stubborn to not get through this.”
So tired, so very very tired.
October 31st, 2013
Hayden’s asked twice now when we’re decorating for Halloween……I thought I already had. He’s so used to us going all out decorating, now I feel like an ass. He doesn’t even have a stupid pumpkin, do you know how hard it is to find a pumpkin the night before Halloween? I know there’s a lot going on but I feel bad that I’m screwing it up for Hayden.
Stupid *%^&@$ aneurysm.
If there’s anything I’m learning from this it’s who my friends truly are, life lesson I wasn’t expecting.
November 4th, 2013
*$#+ you November!
Today was the first day I almost lost it. 11days left of work, 5 IEP meetings, countless data to take and a whole lot of stress.
I think I can, I think I can, I think I can.
I wonder if anyone noticed I just wanted to hide in my office all day??????
November 7th, 2013
The cat’s out of the bag, there’s no turning back now. Everyone at my school knows. I’m not sure how other people perceived it but I felt like I did a pretty good job telling everyone. Yes, there were tears but no where near as many as I thought I’d cry.
Staff knows, sub plans written, materials gathered, IEPs done (ok, not all of them but I can hope!)
Now, I’m done, wish it was tomorrow so I could get this over with.
November 19th, 2013
I hung in there during my weigh-in, during my temperature, during my blood pressure…….waited for the nurse to leave and completely broke down. Cry, then pull it together before the next nurse comes in.
I’m so impressed with my surgical team. The NP answered all my questions before I even pulled out my list, yes, I had a list. I thought I’d be more nervous, more stressed, more anything after this appointment but I actually feel at peace.
Not that I’m not terrified of what’s to come on Monday but I understand it all and feel like it’s the best option for me. As my NP said, this is not an option, you have to deal with it and just get it done. Not that she minimalized it but hearing her say they do these surgeries multiple times a week makes me feel better.
My lists are getting shorter and I actually feel like I’ll get through this.
November 20th, 2013
I sucked it up and told Hayden tonight……… of course I didn’t, Bryan did!
He took it like I thought he would, ok Mom, can I watch TV now? I know it won’t really hit him until Monday. It won’t hit any of us until Monday.
I’ve been selfish going through this and forgot how much this is affecting Bryan. If you have any prayers left, he could really use them.
November 21st, 2013
It’s over, I made it. I was quite surprised that I hung in there so long today. Granted now that I look back there were a few kids I forgot to see, maybe it was the fact that I hid in my office all day. I didn’t cry until 3:34!!!!!
It was a very schizophrenic next few minutes. I was terrified as I closed my office door that I wasn’t ever coming back. Pissed as I got in my car that this #$%*ing anuersym is screwing up my life. Then calm as I realized I need to suck it up, put on my big girl panties and just deal with it.
The next 3 days will be tough, I no longer have work to distract me. I’ll bake for Thanksgiving tomorrow. Get laundry done so Bryan won’t have to worry about it. Wrap the million presents I bought for Hayden to have at the hospital. Yep, I’m spoiling him rotten and don’t feel bad about it at all.
I think I’m just going to hunker down get in my little cacoon and wait. Wait and wait and wait. I’m even skipping working out. I’ve cried during my last few work outs anyway. I’m sure the people at the gym think i’m losing it!
November 24th, 2013
Planned to go out & eat my last big meal but my stomach is so filled with nerves I don’t think there’s any room. Not sure I can hang on to my kick ass attitude much longer.
Our bags are packed & just staring at me. I packed so much food for Bry & Hayden for the hotel you think they’ll be gone for weeks! I’ve wrapped all Hayden’s hotel presents. I bought them as much for Bry as I did for Hayden. Yep, I even wrote when to give him each one. I wanted to space them all out so Hayden always had something new to distract him. Hopefully that will give Bry some peace.
December 5th, 2013
It’s been 10days since surgery and what a rollercoaster it has been. I slept straight through all 3 days I was at CU. Next thing I knew I was home, what a looooong weekend that was. I honestly wondered if I had made the right decision getting the surgery done, I thought I’d never recover. Not very patient I know. I set small goals for myself to make it through each day. First goal, drink water and eat. Sounds silly, but that was a huge goal I had to over come. Next goal get out of bed and sit up, harder than I ever thought it should be.
I’m learning I’m not a good patient. I thought a few weeks at home recovering doing nothing but watching TV sounded great, nope, it sucks. My mind is so ready to move on, my body not so much. I’m still amazed that I had brain surgery and can feel this good so fast but apparently I still need to relax and recover.
Too much time on my hands gives me too much time to think. My emotions are a roller coaster, happy, relieved, frustrated, angry, sad, excited, ahhhhh. I think I was kidding myself that once my anuerysm was gone I could move on with life.
Oh life lessons!!!!!!!!
January 19th, 2014
I just walked, ok strolled, on the treadmill at the gym, by myself for 20min and my brain did not explode. Irrational fear #101 since my surgery: exercising by myself will for sure result in an exploding brain!!!!!!! I kicked it’s butt today. So proud, so surprised how much energy that simple little stroll took, but still so proud. Glad I got over that fear but so very surprised that I’ve lost so much physically that I realized I have a loooooong way to recover.
I went back to work this week. Over Xmas break I truly thought I’d be applying for a leave from work. I didn’t think I’d be able to go back. But I did and while it was unbelievably exhausting I did it. Ok, I’ll admit I didn’t do the required 30min before and after (sorry Gorman!), I did make it through each day.
Today I wore hair in a pony tail out in public for the first time. It may sound silly but I have little hair to cover my scar. It doesn’t bother me but I don’t want others to be grossed out by it. I know you can’t really see it when my hair is down but it’s out there for the world to see when my hair is pulled back. I’ve never spent so much time working on a pony tail in my life!!!!! Ok, I did ask some teachers at Bennett if it looked weird (according to Hayden it does!). They assured me it was ok.
Who knew such little things would become such huge accomplishments!!!!
February 18th, 2014
A few weeks ago I met with my dear friend Mary. I believe I started the conversation with “what the hell is wrong with me.” One survivor to another we spoke for hours, exactly what I needed. You see, no one told me that even though surgery was a success I’d leave the hospital as a new me. Honestly, some days I like her, some days she pisses me off and a lot of days I miss the old me. There’s not one that’s better than the other, they’re just different and it was not something I expected.
I focused so much on the surgery success I NEVER considered the recovery. I thought the pain would go away and I’d be ok, who knew there’d be so many other side effects. Yes, I know I had someone in my brain and I should have expected side effects. Logically it makes sense but I truly was not ready for all this recovery includes.
I’ve recovered from other surgeries in the past, recovered from broken bones but this is something truly different. Unless I sit with my eyes closed there is absolutely no part of my day that is down time for my brain. Believe it or not even watching TV is taxing.
Don’t get me wrong, I am soooooo grateful that my surgery was a success. Now I need to learn to like this new me and all she includes, the good, the bad and the not so fun.
March 14th, 2014
I don’t ask for help easily. I rarely admit I can’t do something. About a month ago, after many conversations with Bryan, we decided working full time was no longer an option for me. Many tears and lots of frustration later I met with benefits to get the appropriate paperwork.
Two weeks ago I drove the long drive back to CU Hospital (I hope I never have to go again.). Bryan was out of town, Hayden came with me. Really how hard could it be for someone to look at my scar, talk about my symptoms and sign my papers?????????? My first red flag should have been my check in. I specifically scheduled with a certain staff member yet I was told at check in I was seeing my least favorite staff member. Second red flag was the random nurse who stopped in to ask if I still had staples in my head. REALLY, my surgery was 3 months ago!!! I’m pretty sure if they were still in there we’d have some serious problems.
Then my least favorite staff member walked in. I explained all I had to say then asked her to sign my leave papers. Her repsonse……….. these symptoms are unrelated to your surgery!
I’m sorry did you just say my short-term memory and nausea-inducing, debilitating pain has nothing to do with my surgery? I’m pretty sure you sliced open and pulled back my scalp, cut out a piece of my skull, put some metal mesh in one of the largest arteries in my brain, screwed my skull back together then sewed up my scalp and you think my pain has nothing to do with this?!?!?!?!?!?!?!!?
I believe she used the word “shady” if she signed my leave papers saying these symptoms were related. I had a few choice words of my own. But I was polite, asked for some pain pills and tried to go on my merry way. Oh wait- those pain pills, well, they will make you lethargic, extremely tired, dizzy and a little unsteady so try them at night then work your way up to taking them during the day (if you can handle the side effects!). Take them when Bryan is home in case you have any other reactions. Great, so I’m already doubled over in pain each day, have a hard time remembering which meetings to go to, take naps as soon as I get home and now I get to experience all these new side effects on the off chance my pain will go away.
So you’re telling me I may actually have a second brain diagnosis that’s causing these symptoms. Yep, I think you should go back to your original neurologist. Hayden and I said our goodbyes then walked out, or maybe we just walked out!!!!!!
I’m a pretty trusting person when it comes to doctors and medical staff. I don’t question their recommendations. I do what they say. NOT this time. Second opinion here I come!!!!!
March 28th, 2014
Two out of three doctors think I’m tougher than I actually am. Seriously, who knew it was so hard to find a doctor to approve a medical leave?!?!?!?!? After an ugly trip to the ER on Sunday night and many more days throwing up all the pain meds they gave me, I was finally able to have a Dr believe that having me to continue to work was not the best for anyone involved. Having me sit at home all day stressing is not the best either so we comprised on 2 days a week.
Apparently I’ve hit a plateau in my recovery. For about a month I seriously thought it was something I was doing to make things worse. I was fine in January, well as fine as you can be after brain surgery! February was ok but March kicked my butt. I was in constant pain and it was only getting worse. No matter what I did I couldn’t manage the pain. After many doctors visits and many pain meds we were finally able to have everything explained to us.
In January I never had any pain because I had no feeling in my head. My skull was still so numb. As I’ve begun to regain feeling. I mean drop to the floor, throw up, scream pain. Not fun. The good news is we now know it wasn’t anything I did. The bad news is the meds to treat it are kicking my butt. You know when you need an anti-nausea pill just to take a pain pill it’s going to be a rough day. You also know when you have to take a pain pill to deal with the pain until your anti-seizure pill kicks in it’s going to be a rough few weeks. I’m not usually a pill person but right now they’re my only answer and I’m REALLY hoping they work.
Pain- you won’t win
Negative attitude- you won’t win (ok sometimes you do)
April 10th, 2014
I wonder if the instructors at the gym ever wonder why I cry in class? Last week was my first official week of leave. I thought I’d be excited but I’m pretty sure I cried everyday and if I wasn’t crying I was sleeping. Tuesday morning I drove carpool then headed to the gym and sat in the parking lot and cried. As much I need this leave it also means I have to admit that there’s something wrong. I can’t live in my oblivion any more. I need to face the facts that it’s ok to admit I’m not myself and I need time to recover. I HATE it. I made it through the surgery and just want to move one. Apparently it takes a little more time than that. Crap.
This week I set a goal to get over my irrational fear of working out. Going to the gym used to be my biggest stress reliever, now it’s my biggest fear. I don’t care how many doctors tell me I can work out and not drop dead, I’m pretty sure they’re wrong. So I looked at the gym schedule, chose my instructors carefully and proceeded to work out. Ok, not at the intensity I used to, but I did go in the studio, move my body, sweat and finished each class. Oh and I cried. Cried because I was proud that I was there and cried because I was so pissed that this was even an issue. Hopefully people in the class thought it was just sweat, you know, dripping from my eyes?!?!?!?!?
I’m not the type of person who asks why me. I try to just accept things and move on. Lately I have all this extra time on my hands and I’m struggling not to ask “why us?”
Looks like I need something to fill my time. Napping sounds great right about now.
July 23rd, 2014
Gratitude with frustration, that’s how a women in my support group described surviving a brain aneurysm. She’s so right on, I couldn’t have described it any better.
This was my summer of doing things out of my comfort zone. You know, kayaking in the ocean when I’m deeply afraid of sharks, running outside when I’m terrified of dropping dead (or just running in general!). As much as Hayden told me we needed help and to turn around, we survived the 3hr kayaking trip. As much as I cry when I’m running outside, I’ve survived every run. I cry because I’m so glad I’m alive to be able to run and I cry because I’m so pissed that I even have to think about that (if you ever see me running outside just pretend those tears streaming down my face is just sweat!!). See……. frustrational gratitude.
I thought by my 8th month of recovery my medical team would be getting smaller, nope, it’s getting bigger. I’ve added a dentist, an acupuncturist and a Dr. that only deals with pain recovery. No one tells you the pain could last for this long. No one tells you how chronic pain can completely turn your life upside down. No one tells you how debilitating pain can be. They’re just all so happy you survived the “big” stuff. I get it, I did make it past all the “big” stuff but that doesn’t mean my recovery has been a blast, in fact it’s sucked. You talk to the many people on my medical team and they look at you like you’re crazy. Really, lady, you’re complaining about this chronic pain when you should be grateful you survived at all. And then I bring up the dreaded weight gain topic. Yep, I do. Then they really think I’m ungrateful. You might gain a few pounds, I’ve never had a patient gain weight on this medication, my patients have gained up to 40lbs…….. these are all my Dr’s talking about my medication weight gain. Put me in the last category, the weight is piling on. My neurologist keeps telling me to try walking. I want to slap him every time he says that. Pretty sure the hours I spend at the gym are better than the walking he’s suggesting.
I know what you’re going to say, in the big scheme of things weight gain is the least of my worries, at least I survived. Blah, blah, blah is all I have to say to that. Yesterday I met with a new Dr and cried in his office when he told me to increase my medication (yes this means an inevitable increase in weight.). When you struggle everyday with everything else it would be nice to at least feel good about yourself. I know, I know, feeling good about yourself comes from the inside, blah, blah. It doesn’t help when I get dressed every morning and nothing fits. I’m pretty sure my boss won’t be too happy about me wearing running shorts to work everyday. Frustrational gratitude again.
This is what I told my new Dr, “what I hear you saying is I need to increase my medication and then go on a shopping spree so I’ll actually have clothes to wear, that’s what your prescribing?” I think he thought I was nuts. He also told me that’s what his wife would do, so in a way he’s actually saying yes!
Frustrational gratitude is the name of this game I have to play. Maybe by the end it will be gratitude with very little frustration????????????
September 3rd, 2014
These last few weeks I’ve been quietly riding an emotional roller coaster I lovingly and frustratingly call “Remember.” Just like the good times, trauma has a tendency of making you remember dates/times of obstacles you’ve had to over come. That’s been the last few days for me:
“This time last year I had my first Dr. appt.”
“This time last year I had my first neurology appointment.”
“This time last year I had my first MRI.”
Yes, all those “obstacles” happened within the first 2 weeks of school last year. Tomorrow (9/4) will be the big one.
“September 4th last year our world was turned upside down when we were diagnosed with a stupid aneurysm.”
I say “we” because this diagnosis impacted the whole family, not just me.
There have been a lot of quiet tears these last few weeks as I’ve struggled to get through this. There’s been a lot of anger because in my head (no pun intended) I thought this would be over and done with by this time. I thought we’d be able to move on as a family.
Bryan still deals with my crazy emotions and Hayden still worries and constantly asks if I’m ok.
You know me and planning. I’ve thought long and hard about tomorrow. Will I wake up and be proud of all I’ve accomplished and go to work OR will I wake up and decide to stay in bed all day?????
The one thing I’ve learned in all this is that there are some things I just can’t plan for. I have no idea how I’ll feel. What I do know is at some point in my day there will be a HUGE Starbucks in my hand!!!!!
November 22, 2014
I’ve had a love-hate relationship with my neurologist for the last 15months. Love because he was the one that found my aneurysm and hate because he found an aneurysm. I love that he found it and saved my life and the same time I hate him for being the one who turned my life upside down.
June 12, 2015
Apparently going to work and pretending my medical trauma never happened is not a healthy way to go through life. In fact I’ve been told it made thins worse. I used to sit in IEP meetings and feel like I could really relate to parents based on my experience with Hayden. Now I can sit in those meetings and relate to the kids too! In May I finally sucked it up and admitted there are parts of my job that I can’t do as well as I could before surgery. I’m super type A and don’t like to admit I struggle with anything so this was a huge step for me. I sat through 4.5hrs of neuro-cognitive testing to see exactly what was wrong. I administer or watch the OT and psych administer these same tests almost daily in my office so I know them well enough to know I struggled on a lot of questions. It’s agonizing to know you don’t know the answer to the questions that you hear all the time. After testing I went out for a much needed glass of wine with 3 of my best friends, you know the ones who covered my butt all year!
Apparently the results of the testing showed that my “faking” my way through the year wasn’t so great and I didn’t fake my way through it as well as I thought I had. The testing showed I need OT and a counselor. If you know anything about me I HATE talking about my feelings. HATE IT. This blog is as close as I get. Talking about it makes it real and honestly I just want to move on and forget about it.
This week I have appointments for occupational therapy, 2 different physical therapists, a counselor and a neurologist. Obviously not dealing with my trauma for over a year has backfired and now I need to deal with it with multiple professionals.
I’m so scared to take the entire year off next year. It’s a huge financial sacrifice. It’s so easy to say your health is more important until you have bills to pay. I really don’t know what I’ll do with my time off, well except for going from appointment to appointment!
August 3rd, 2015
Everything about recovery is a contradiction. I’ve spent my whole summer at Dr.’s appts and therapy appts. I’m talking 5-6 appts a week. In order to recover and feel better you have to go through EXHAUSTING therapy sessions. I wish recovery were relaxing and sleeping! Don’t get me wrong I did plenty of that at my parents house but here at home I live at appts.
People ask me if I’m excited to take the year off. NO. There’s no excitement. There’s frustration that I even need this time to recover. There’s guilt over the financial stress I’m putting on my family. There’s scared about the possibility that I won’t ever fully recover. People can tell me all they want that getting healthy is more important than salaries and health insurance. Easy for them to say because they’re not going through it.
I went to the gym today for the first time since February. Nine months ago I ran a 1/2marathon. Today I barely made it though a yoga class. In February I hit rock bottom. I mean physically, mentally and emotionally. Work was getting harder and I had less strategies and energy to cope. My body was exhausted from medication change after medication change. Anti-seizure meds are hell on your body. Trying to work while dealing with medication side effects and medication changes is not fun. It took everything I had to make it through the school year. Home life was in crisis mode. House cleaning to a side seat. So did cooking. Eating out and ordering in was my favorite option. Not the best choice as a mum raising a child who struggles with his weight. Homework?!?!?!?! That chore was passed to our nanny. Thank goodness for her!
Going to the gym was the last thing on my mind. Today I made it though a yoga class. Proud that I got my butt back to the gym, mad that I even had to stop going. See contradiction after contradiction.
Now I have an entire school year off. Reality is hitting home now that everyone is getting ready to go back. Much to the dismay of my neuro-pyschologist I have no plans for the year. I’m supposed to make plans so I don’t sit around and do nothing. Actually that sounds pretty darn good right now!!!!!!!!!!!!!!
November 25th, 2015
On this morning 2 years ago we were making the long quiet drive down to Denver for surgery. So many thoughts were going through my head, most of which I tried to shut off. It’s been a long 2 years. Looking back, the surgery was the easy part, recovery has been so much harder than we planned on. Chronic pain, extreme exhaustion, weight gain, monthly medication changes, trips to the ER, dizziness, the list goes on. We decided I would not go back to my job this school year. I truly thought as soon as everyone else went back to school my symptoms would stop and I would immediately feel better. Nope. I struggled all first quarter feeling frustrated that I wasn’t getting better. After 4mths we found out my medical leave wasn’t approved. Apparently I’m in pain but not chronic or severe enough for it to be covered under insurance. I wish they lived in my head some days then tell me my pain wasn’t intense or chronic enough.
March 19th, 2022
It’s been 8 years since my surgery and life has never been the same. The rollercoaster continues, just not as dramatic as it used to be. I’ve learned so many lessons but mostly about perspective and positivity. I’ve learned that just because someone hasn’t gone through what I’ve gone through doesn’t mean their journey hasn’t be tough. I’ve also learned that you can find something positive in every situation. Even the teeny tiniest piece of positivity makes all the difference.