It Has Been A Week

I have been close to tears about five times this week. None of these times actually produced tears, mostly because two of the times were at work, so I really kept it in, but the other times certainly could have produced tears….but nothing.

Since my brain aneurysm rupture in 2006 I noticed whatever mechanism within my brain that triggers tears, just isn’t the same. I would feel sad about something, and knew I would normally be crying over it, but the tears would not come. I’d be curious to know if any other brain aneurysm survivors have experienced the same thing. However, when those tears DO start flowing it’s difficult for me to shut them off and they completely drain my body and brain of any needed functionality.

Tonight I opened that valve and the tears are flowing. This Sunday is Mother’s Day. Normally a happy occasion for families to celebrate their moms with gifts and spend time with mother’s, granddaughters and grandmother’s. Unfortunately, for my family, it’s a sad occasion and doubly so this year. No, my mother hasn’t left us, but both my sisters have. So not only has a mother lost two daughters, but I’ve lost both my sisters and my niece and nephew have lost their mothers.

My sister Dori had a massive ruptured brain aneurysm ON Mother’s Day in 2012. My husband and I were in London, England when we found out. We cut our trip short to join my family in a two-week, hopeful vigil praying for a miracle that never happened. Technically, we had already lost her on Mother’s Day. I don’t know how my mother or my sister’s son, can ever replace that memory. I know I can’t. Because she died of a brain aneurysm, I’m also tormented by my own demons about how she was misdiagnosed and how I should have pushed her more to insist the Dr’s look closer. Having the “urgent care” president where she was treated admit in a letter, after her death, that aneurysm signs were missed, makes it even more heart wrenching.

My “Family” mailbox in my Email now only consists of my husband and my niece. No other relative emails me. In fact I didn’t even know my cousin’s husband had died because she didn’t email me and none of her brother’s or sisters did. I miss my emails from Dori and Rhonda and Mom. Since mom had to switch to a laptop from WebTV, she hasn’t been able to understand and grasp using a computer, so we no longer have that convenient form of communication. She doesn’t call me, due to the cost, but I call her two times a week. And as I sit here typing this, I am bawling and feeling horribly pain in my head, that is just short of 4-months out of open brain surgery to repair my 2nd aneurysm.

Searing pain around the side of my head that is made worse by the stress of crying…and I can’t stop. I want, and desperately need a day off of work to get some sleep and rest, but there are meetings I must attend. Why I’m asked to attend some of these meetings, when my ideas and recommendations are met with a giant eye-roll and dismissed, is something I don’t understand. Even though I was apart of developing the program that’s being discussed and am very familiar with how it works, being treated that way in front of many others (for a 2nd time) can lead to tears, but I held it together…until now. So on top of grieving again for my sister, I’m dealing with being dismissed at work and just getting there on a daily basis while I’m still recovering.

Then there is my darling niece who will have to endure her first Mother’s Day without her mom because my other sister Rhonda died just 4 months ago. My poor mother has lost two daughters and I’m all she’s got left. And even SHE is having issues right now with horrible pain in her back, which brings back many memories of my sister Dori. She had horrible back pain for months before finally having surgery a few weeks before her death and I’d talk to her on the phone as she was in that pain and knew she had been crying due to that pain.

So when I hear my 87-year old mother talk about getting to the point where the pain makes her cry, how can I NOT think about my sister. I don’t know what to do to help my mom when she’s in NY and I’m in Maine. She’s been to two doctor’s and they’ve given her patches and some meds and told her to stop lifting things. Great. That’s great advice…but do they know what is actually wrong? I doubt it.

So, that crying thing is very difficult. We’re told it’s good to cry every once in awhile to get it out of your system….they say it’s a “good cry”. Well, for me, a cry is never good. My head feels like the skin and muscles are being pulled away from my brain right now. And it won’t settle down, until I settle down. Poor Dave has tried to console me, but I don’t even know what I need. I guess a “good cry” and venting in my blog will have to suffice for now even though I know I won’t feel any better physically or mentally afterwards.

A Clean and a Cut

At the 15-week mark I got my hair cut! I wasn’t sure how having someone else comb and pull my hair would feel, but she was great and the process wasn’t too bad. My scalp is still numb and there is activity still going on with those pesky nerves, so there has been a lot of “activity” since I got home from the hair stylist.

Feels great to have a hair cut and have something better to work with. I still have the section of bangs that is sticking straight up, but the rest of the bangs have been cut around that section as it continues to grow out around the incision They surgical team at Maine Med did a great job shaving/cutting the hair prior to surgery.
My hair stylist had a lot of questions about the procedure and everything that was involved and how I felt. I never have a problem discussing it if I’m asked.

Also this week, I finally made that dentist appointment I have had to cancel twice because of the pain from my jaw muscle. I can’t say this appointment was pleasant, but I got through it. My jaw was sore afterwards and the antibiotics I have to take before each dental visit make me feel lousy too. Double whammy. And this was just a cleaning!

How Are You Doing?

I had a visit with my regular doctor last week for a check-up. It’s always good to get a reminder that I’m still early in the recovery process and that the fatigue factor could be with me for up to a year out. I mentioned my dent and how I can see and feel where the screws and pins are around the bone plate, but she was nice and said if I hadn’t pointed them out, she would’t even notice. LOL

Outwardly I look fine to other people, so they think I’m all healed and ready to go, but I will still have struggles for months to come. My cousin Rae is sending me the sweetest and most thoughtful cards, and today a co-worker who doesn’t work in my department asked how I was REALLY doing…not just the fly-by-walk in the hallway “how are you?” and that was thoughtful that he took the time to really ask.

I need to cut myself some slack on the days I’d just rather sleep and not feel guilty. I still need to do that for myself and listen to my body. I am still in recovery.

Week 12, but Who’s Counting?

Today marks week 12 of my recovery after brain aneurysm clipping surgery. It also (as of tomorrow afternoon) marks my first full week AT the office and driving back and forth to work for five days of the week. It has been tiring, not having a day off from the 60-mile, round-trip drive into the office, but it’s a start.

I’ve been grumpy and a tad sad this week for some reason. Have been thinking a lot about my sisters and missing at least having one of them to talk/email with. Then National Sibling Day snuck up on me today. Ugh. Life can be so unfair and I’m still baffled why God chooses some to continue and others to end their time here on earth. Also learned my cousin Deb’s husband passed away after a long, difficult battle with cancer. We all adored Paul. He was a very special person.

So, as spring FINALLY appears to be upon us with warmer temps and grass emerging from the soggy gray snow, I have to be thankful for what I have and not for what I have lost. I have the most adoring, gentle and caring husband, two kitties who make me smile, a loving sister-in-law, a fantastic mother and a niece and nephew who have grown into wonderful young adults as a result of how they were raised by my talented late sisters.

My recovery after surgery has been a tad slower than I was expecting, but I’m extremely thankful that I’m still able to function and do my job. I’m also thankful that I work for a company that allowed me this opportunity to protect myself and keep working. Many people aren’t so fortunate. Thank you Johnny’s!

Now, the fun stuff! My jaw is finally feeling better I think. Yawning isn’t the struggle it used to be. There is still some tightness there, but not the pain. Just might be able to make the dentist appointment now that I’ve canceled twice as a result of my jaw pain inflicted because they had to cut that muscle.

My hair where they shaved it is growing back slowly but surely. It’s odd but workable and I hope to get to my hair stylist in the next couple of weeks for a trim and color of the rest of my hair, which needs it desperately!

The fatigue factor is still hot and heavy, but I’m working on it. I found a terrific set of DVDs that have very attainable, low-impact exercise routines for flexibility, strength, and aerobics. I actually almost look forward to doing them, and that’s very odd for me! LOL

My scalp is still numb but the nerves don’t seem to be as “active” as they were and the zinger pains have eased up to some extent. However, the dent is pretty prevalent and I can now see and feel the pins under the skin on my forehead and under my hair. Other people may not notice, but I certainly do. I’m sure that’s perfectly normal for every clipping survivor and I’ll no doubt get over it.

Speaking of survivors, the Maine Brain Aneurysm Support Group was started two months ago and I have attended both meetings. It’s wonderful to meet other survivors. Unfortunately, we haven’t had much of an opportunity to share stories and converse with each other at great lengths just yet, but that will come. We’ve been trying to get a group here in Maine for many years. It is needed and I hope we can continue to be a comforting and educational resource for people who are newly diagnosed with brain aneurysms and those who are still struggling.

Let’s see…I’ve had a rupture and coiling in 2006, my husband’s niece dies of a rupture in 2008, then I have to have a stent and re-coiling in 2011, then I lose my sister to a rupture in 2012, then my 2nd aneurysm is discovered, it’s growing, and I have open brain surgery to put in a clip in 2014. As much as there are days where I don’t want to think about brain aneurysms, I’m kind of surrounded by it.

“Difficult times always create opportunities for you to experience more love in your life.”
Barbara de Angelis