An Letter to My Grandma... Living with Grief

Since saying goodbye to Facebook, I had wondered just how far the reach of my posts will really go. And while this blog started out as support for infertility, of all the posts I have written, I hope this one reaches the most people.

This one is dedicated to my Grandma Maag. Someone who I wish I could describe in words. It wasn't until I knew I would never see her again in my earthly body that I fully appreciated how much she meant to me... and how much I feel as though I have let her down.

I was the odd duck in my family - I moved away. But, my grandma would occasionally send me these notes - just to let me know she was thinking about me.

Over the years, I collected these notes and cards. I loved seeing my grandma's handwriting. I'm grateful I have a piece of that - a piece of her - to keep forever.

I kept telling myself I wanted to write grandma a note. But, I worried she wouldn't understand. I was afraid she wouldn't know who I was. I worried it would have been a nuisance. My deepest regret now that my grandma is gone is that I never sent that note.

So here it goes - something that has been on my heart and that has been challenged to me to write a note to someone in honor of my grandma. And that person I have chosen is the very woman who has inspired me in ways yet to be seen.

Dear Grandma,

I can't believe more than a week ago we got the call here in our home to let us know God had called you home. I could sense it coming for probably a month. I know you could sense it coming, too. I so wish I could have been by your side. I know people told me your body was there, but you weren't the same grandma I remember. But I wish I would have been there so you could have felt my love along with everyone else's. Grandma...I hope you know how fiercely you were loved by us.

I still feel in a daze. Moments after I found out you were gone, I started frantically searching for my memories I know I have of you. I was able to find a couple of notes. I found a watch from our boat trip in Iowa. I can't remember what color you got, but I know we both got watches that day. I found the wallet you bought me in Italy - with a single dollar bill in it on which you wrote, "Keep Me and You'll Never Be Broke.". I never fully appreciated the life lessons you were teaching me - not to mention your sense of humor.

I feel guilty that you never got to know the little very well. But, she knew you. And in one of the goofiest of ways. You remember that thing you did at restaurants with the napkin? The three different characters? I taught that to the little years ago. And she still does it. We all still do it. And it still makes us laugh.

As I write this, I wear the ring you gave to me. I couldn't wear it for awhile because I burned the bejeezus out of my finger, but it's back on, now. I remember when I got the note from  you while I was in college asking if I would like it as a graduation gift. I was siting in an office doing my work for the residence hall I worked for.

Remember when we went to Europe and I tried to sleep in the tub because of your snoring? I think this was probably pre-CPAP. But, I would give anything to hear your snores again.

Grandma...I know you were in so much pain. And I learned you were in so much more pain than I ever realized. My heart breaks... because my body also wants to just give up a lot of days and I know I have begged God to take me.

I wish I could have been to you on this earth what your notes and letters were to me. I wish I could have helped you more.

I have so many happy memories with you - and a lot of them are random, but they're some of my favorites. Like, eating Cracklin' Oat Bran at your house. I'm pretty sure that's crappy for our bodies, but I think I'm going to get a box and have some in your memory.

I remember when you out of the blue asked me to go on a very short trip with you - a bus trip that had a stop in Peoria, so I joined you there. I wondered if it was something I should do - taking time off of work was difficult for me. But I knew even then that this would be the last chance I had to do this with you. My last trip with my LOL.

I remember after church service one Sunday you asked me if I wanted to go see Aida at the Fox. Grandma - to this day, that is one of my favorite musicals. I even purchased the soundtrack.

Going to the Muny with you inspired me to want to sing and act. I wanted to be on stage one day. And one of the letters I found was you encouraging me to pursue it.

I feel like I'm a rambling mess. I have so much on my mind and in my heart. The biggest and heaviest of which is how much I miss you and how many incredible memories I have with you.

I'm forever proud to be your favorite Raven-haired grandchild. 

I love you, Grandma. 

Kristy

"There was a little old lady who lived in a little old house..."

I asked my grandma after one of our losses how she maintained her faith after everything she endured. Losing her husband. Battling breast cancer. Losing her son. I figured if anyone would have that answer, she would. I wish I could recite exactly what she said. All I know is I was left in awe that despite it all, my grandma was telling me to continue to have faith in Him and trust His plan. I don't know that I've ever talked about that moment I had with my grandma.

Loss is a terrible thing. It sucks. It hurts. It can be paralyzing. But, it can kick us in the right direction. So here is my challenge to you, as I think my grandma has challenged me for the time I was ready to trust in His plan.

Write the note.

Audition for the show.

Make the phone call.

Pursue your calling.

Give back to your community.

Have faith with it seems like faith is the furthest possible thing.

Love fiercely.

Go on the vacation.

Take the time to have the experiences you want.

Even if you just pick one of this list... I hope you do. And I hope you share your experience with others.

Love,

K

The Never Ending Story: Living with Endo

My Endo story began OFFICIALLY in August 2015 during a diagnostic laparoscopy after about a month of chronic pain in my back and pelvis. As I was going under - a blur of doctors and nurses above me, wires everywhere, non-stop beeping noises... I remember my fearful thought that followed me the whole time I was in pain  - "What if they don't find anything? What if it's all in my head?".

Turns out not only was it NOT in my head... what they found was too complex for the surgeon and at that moment on the operating table... all I was going to get was a diagnosis and another surgery.

They found my pelvis frozen completely in place by adhesions caused by endometriosis. My ovaries were wrapped and stuck behind my uterus. Finally... and explanation for my pain. Followed by a whole host of questions as to why I didn't know about endometriosis sooner. But, that's a blog post for another day.

I had surgery again in November 2015. Four months later I was back in pain. Several ER visits, doctor appointments, and research later, we found another surgeon who was willing to take my case. This surgeon does the surgeries in two parts due to a protective coating she puts on organs to prevent scar tissue from forming. So in December 2017, I had two more surgeries - the first of which lasted 8.5 hours. My body told the same story as before - frozen pelvis, ovaries attached to the back of the uterus... but this time, the adhesions started pinching my bowels. I needed a bowel resection.

For 9 or so beautiful months... I lived in a normal world. I no longer felt like my body was attacking me constantly. I was able to make plans and keep them. I could travel without experiencing pain in my back and pelvis. I was no longer constantly aware of how my body felt. I thought I finally was as free from endometriosis as I could be thanks to an excision surgery (excision is the gold standard for treating endometriosis).

Unfortunately, this feeling didn't last forever. The return of the pain came on slowly for a couple of months. Just some random back or pelvic pain here or there. Some fatigue returning. Then, seemingly out of nowhere, the flare-ups returned.

What's a flare-up? It differs from patient to patient. For me, a flare-up feels like someone is squeezing my backbone and pelvic cavity to the point where I can barely move. When I do move, it feels like everything is being pulled - somehow, something in my pelvis feels like a tugging sensation any direction I move. This time around, I also have nausea. And lots of it. Zofran has become my best friend. I started taking B6 in the morning as a preventative measure. Doesn't matter, though. Because during a flare-up, chances are my already tired and sore body is hunched over the toilet, either full-out vomiting or dry heaving to the point my stomach muscles ache.

For a month and a half I was completely out of work because my flare-ups were lasting so long. My life felt like one, long, non-stop, stupid flare-up that wouldn't go away. I tried to push through the pain and tell myself that I'm going to have to learn to live with it. That only made things worse.

Things got so bad I seriously considered ending my life. By seriously I mean I ended up in the hospital and was admitted. The pain had gotten so bad, doctors were brushing me off, and it felt like there was absolutely no end in sight to my misery.

I was put on a nerve-blocker during my absolutely HORRENDOUS stay in the Psychiatric Unit. It seemed to help with my day-to-day pain. It didn't help at all with the flare-ups.

I pushed myself to go back to work. My doctor decided part-time was best to start. I wasn't really ready. I didn't feel like my pain was really under control enough to go back. But, I was tired of feeling like a burden to others, so I went back to work.

After a week of part-time, I pushed myself even harder and convinced myself and my doctor that I was ready to go back to full-time. I wasn't, but I didn't want my husband to worry about me losing my job, I didn't want to let down my team, and I didn't want keep inconveniencing my coworkers.

The week I went back full-time, I ended up in the ER with bad pelvic pain on my left-hand side and uncontrollable nausea. Zofran wasn't touching it. I had taken B6 that morning. I didn't think I could keep a pain pill down. Earlier in the week, I also had some pretty intense flare-ups. But, I did everything I could to power through them and fake it until I made it through the day, even though every part of my body - especially my back and pelvis - wanted to shrivel up and die.

As part of a recommendation from an excision specialist during a phone consult for a second opinion, my nerve-blocker (Lyrica) was doubled and I was put on a suppository that contains Valium and Baclofen. I had already started some physical therapy after a recommendation from one of the MANY doctors I have seen this time around.

During all of this, so far, nothing has changed except the "good" days where my baseline pain is now a 1-2 instead of a 3-4. Progress, I suppose.

Since I experienced increased flare-ups and I had yet another ER visit this go around, I was medically advised to go back to part-time at work. I know that's what my body needs. I've been told I need to take care of myself. But, when I feel like I'm letting other people down AND I'm causing extra work for others... it feels super crappy.

Not only that, I feel judgement. I feel judged. I feel like people look at me - a seemingly healthy individual - and wonder why I don't just suck it up and deal with it.

I hate that so much. If they only knew the level of pain I endure on a daily basis. If they only knew how often I've cried, how often I've missed family events, how often I have to spend my weekends doing ABSOLUTELY NOTHING in order to try to recharge for the next week AND try to avoid anything that would cause the flare-ups to happen or worsen, how I have had to choose to not go see my family that lives 3 hours away because the trip would put me into misery... maybe they wouldn't judge me so harshly. Or maybe they would.

I'm working on getting to the Mayo Clinic next. I'm so, so sick of dealing with being sick constantly. I'm tired of messing around, running in circles and getting nowhere.

Endometriosis sucks. That's all there is to it. It feels like this story truly began in Junior High/High School... when I would take 3 ibuprofen a day for days leading up to when my period started. Where I was taking 3-4 ibuprofen at a time and prayed for relief. A time when I thought my pain was "normal". In college, I had the option of not going to class on those days. And I chose that option and would sleep. Because sleep is when I wouldn't feel pain.

There is no cure for endometriosis. So for me - and women like me - this journey might never truly end. We may get some relief if we are treated properly, but sadly, many women don't get the proper care due to the lack of providers that TRULY understand the disease and how to treat it. (That is a whole different blog post for a different day - and frankly one I'd likely avoid in order to not offend any providers.).

I hope one day I won't have to live with it as much. But until then... this remains my seemingly ongoing battle for answers, relief, and treatment.

Kristy