Grieving when chronically ill

This week just gets better and better.

I have been ordered by my father to take down the gofundme site.  I’m 31, not 13.

Because of his anger surrounding this issue, he will not help me with plane tickets to attend my grandfather’s funeral.

My grandfather died suddenly yesterday.  Woke up with chest pain, made it to the ER.  A “triple A” — abdominal aortic aneurysm.  7 cm.

An aneurysm is a weakening of the blood vessel.  Ones in the aorta are particularly dangerous because of the high pressure the heart exerts to get the oxygenated blood to the rest of the body.

My grandfather’s burst early last afternoon.  They attempted emergency surgery, but it was no use.

He was 86, but a relatively healthy 86.  He was still walking the mall everyday.  He still golfed.  He was the main caregiver to my grandma who has severe Alzheimer’s disease.

I’m beyond upset.  Especially since my parents decided to share most of this information with me via text messages because of their anger toward me.

I got text messages like “they are massaging his heart right now”.  I would call for more details, and be yelled at.

They at least had the decency to call me and say “he’s gone” and then hang up on me.

This does not bode well for my health.  I spent most of last night and a good part of this morning crying.  Mainly for my daughter and my grandma.  

Sunshine was very close to him, despite the distance.

Not only am I grieving, but I was told that I’m a disappointment to my parents when I asked why they couldn’t financially help me with plane tickets.  

I know they can afford it.  Its just the principle of the thing for them.

How dare I look for support elsewhere?  They are ashamed of me.  I can’t “pick myself up by my bootstraps” and beat this thing.  I am not productive.  I need help from others just to survive.  I’m a failure.

It just sears me to the core that I will not be able to properly grieve with the rest of my family.  Have I had issues with them in the past?  Yes.  Have I forgiven most of them?  Maybe.

But the one thing in common is that we shared the love of my grandpa.  No matter what else was going on, the craziness of a dysfunctional family, he was always the constant.  He was the patriarch, the final word in all matters.  

He was fair, fiercely loyal to his family.  Loving, caring, funny.  His love for my grandma knows no bounds.  Their 64th wedding anniversary would be this coming Saturday.  

His goal was to keep her at home for the rest of her days.  To keep her out of a nursing facility.  He modified the house to suit her changing needs.  He found caregivers to come in and take care of her during the day.  He will be sorely, sorely missed.

All this grief comes on a very happy day for me.  It’s my first wedding anniversary.  

I know that wallowing too far down the sorrow hole will not be good for me.  I have talked to some of my friends who just listened to my sobs and my anger. That helps tremendously.  And my husband is always amazing.

I am taking the kids swimming today.  I’m going to enjoy this beautiful day and treasure the time with my kids and husband.

Not sure where this event will leave the relationship with my parents.  But right now, it is torn.  

Here is the “gofundme” site that has incurred my parent’s wrath:

Any amount of donation is greatly appreciated.  It keeps the lights on.  It keeps me from being evicted.  It keeps me in medication that keeps me from going blind.

Thank you for reading..


Quick update and women’s issues

Saw the eye doctor this week.  The insides of my eyes look “foggy” and I’m seeing more lights flashing.  But not more floaters.  I have difficulty with text again, had to turn up the font size on my phone and Kindle.

But my eyes aren’t getting worse, per se.  Apparently the cataracts as a result of the steroid eye injections are causing cataracts to form.  Fantastic.

My liver numbers haven’t changed.  

I see the rheumatologist this week to discuss the plan now that I can’t take methotrexate.  The good news is that I can’t take methotrexate.

Another thing they don’t tell you when you take steroids or methotrexate is that women will have increased issues with their menstrual cycle.

I know many women go on birth control when they are on these meds, but I can’t tolerate hormonal birth control methods anymore, and I once had an IUD imbedded in my uterus.  I’m not looking to repeat that adventure.  

We use other methods.  But maybe the BC would help the menstrual issues.

Apparently, when on these meds, the flow is heavier and cramps are worse.  Way worse.  Also I am completely worn out, way more than when I wasn’t on these meds.  My poor husband.

And my cycle is very unpredictable.  I’ve been a week early to a week late.  Fun times.

So today isn’t fantastic, but at least my liver isn’t worse and the inflammation hasn’t increased in my eyes.  

Yay for small victories!

Who needs a kidney? Or a liver?

The severe pain shuddering throughout my left back and abdomen might be a kidney stone.

My liver enzymes are highly elevated.

And I’m going out of town next week.


Ok.  I finally made it to the primary care doctor’s office last Friday.  She thinks the pain in my left mid/lower back could be a kidney stone, based on the pain location and the fact that I have microscopic blood in my urine.  She wanted to do a sonogram right then and there, but since I have NO INSURANCE, there is no way I can afford it.  At all.

She gave me muscle relaxers to see if it was fibro pain.  

It helped, somewhat, but the pain is still present, just not as sharp.

I’m currently waiting on her call back with the next step.

I have my liver enzymes check every few months due to the methotrexate.  Last month they were slightly elevated.  This month they are VERY elevated.

I’m not turning yellow or anything, but it is concerning.  The doc told me to hold the methotrexate this week and try to get in to see her ASAP.

Well, the next available appointment is June 19.  

Waiting on that call back to find out what I should do and if I should even travel next week.

Good news?  The pressures are down in both eyes.  Being compliant with painful eye drops definitely improves the situation.


Oh!! The insanity!!

Hi!  I’m M.  I turned 30 this year.  I can’t believe it.  I have no idea how I got here.  Where did my 20s go??  Who is this little girl and why is she calling me Mommy??  This year has been a whirlwind.  When I was 12 or 13 I would look in the mirror and try to imagine what I would look like at 18.  At 18 I would do the same at 21.  I never pictured 30.  Ever.

So yesterday was my half birthday.  Meaning halfway to my next birthday.  Almost 31.  Its still not sinking in.  I guess that’s why I’m blogging.  There are so many themes to my life, so many issues I want to just get out of my system.

I’m currently unable to work.  I’ve had this undercurrent of illness to my life, since I was a teenager, and again it has flared up.  Right now my life is uncertain due to my health condition and I have plenty of time to sit here and think…think…think.  Can you tell I’m a mom?  That was from “Blue’s Clues”.

Despite what is going on, I am very happy with my family, my husband, my daughter, where I live.  I was born in Austin and raised in Pittsburgh.  I left a bad marriage three years ago and moved back to Texas.  I married a longtime friend in June.  Our love story is worth it’s own post at a later date and time.  I have not been back to Pittsburgh in three years.  I have my own reasons and I’ll probably blog about that too.  I am just so amazed how different our country is from region to region.

I am a nurse.  Nine years now.  Most recently in hospice.  That plays into my spiritual beliefs.  I don’t go to church, I was raised Catholic and I  no longer believe in that doctrine.  I’ve tried different churches when I moved here.  No dice.  I can’t go to churches that openly condemn other people just because they are different.  So the search continues.

Since I’ve been more ill than usual I have been reading constantly.  I fear for the life of my Kindle, because it is getting obese and being forced to work late nights and long hours.  I am always interested in a good story.  So I will blog about my favorite books, what I’m currently reading, etc.

And finally, I can’t ignore what I was trying to ignore.  I was trying SO HARD to ignore this years presidential election.  Really I was.  My parents are extremely RED.  I mean, my mother listens to Rush.  I used to drink the kool aid too.  I have yet to register to vote in Texas, but I plan to soon, and I will register as an independent.  I don’t particularly like either candidate, and at this point in time, I’m considering writing in my cat, Punkin, for President and my daughter’s stuffed cat Minnie, for veep.  I do have very strong feelings regarding women’s rights, sexual assault, immigration, healthcare, foreign policy.  I know my history.  I know the constitution.  Sometimes I would like to keep my head buried in the sand, but it took that idiot Akin in Missouri to get me really pissed, as a nurse and a woman, and realize that we are letting men and politicians have a say about a body part that they do not possess.  INSANITY!!!