One thing that those who have never been “sick” can’t understand is the dependence on medications.

I have been on antidepressants since I was 16.  I have been on them all at one point or another.  Right now, its Zoloft.  It has been working, keeping me on even keel for the past two years.

With all that has been happening, my lack of health insurance, and lack of funds, I have been without it for the last week.

Part of me wants to be that “strong” person that my family wants me to me.  I hate being beholden to medications.  I hate the fact that I’m not “STRONG ENOUGH” to overcome my depression issues and be med free.  Every, single time I have tried to come off antidepressants, it has ended badly.  Why did I think I could succeed this time?

With my grandfather’s death and subsequent fallout over this site and my gofundme site (oh yes, Mommy and Daddy started reading this blog.  They are not pleased) I again tried to be “STRONG” and “PULL MYSELF UP BY THE BOOTSTRAPS” and white knuckle it off of Zoloft.

Yes, I know better.  But part of me wants to just try.  And it always ends badly.

So, I’m still dealing with my grief (which I haven’t really had a good cry about).  I have had stomach issues since Monday.  Muscle issues since yesterday.  Sleep is elusive, regardless of how much Benedryl I ingest. I am an irritable, irritable monster right now.  And I hate it.  It’s clear that I NEED to get back on this medication.

My concerns:  1) I haven’t seen the prescribing doctor in nearly a year.  They might not refill. 2) My PCP is also owed money.  She might not refill this med at all because she isn’t the original prescriber and because I owe her money 3) There is a waiting list to get into the local health clinic.  I  do not qualify for free care from this county (but if I moved 10 miles away, to Travis county, it would be no problem).

So, I just put the call in.  Waiting for a response.

I also haven’t heard back from my rheumatologist concerning Cellcept v. Plaquenil.

I called that office and was told that my rheumatologist wants to consult with my eye doc before making treatment decisions, which is understandable.  But he hasn’t called back yet.  It has been over a week.  I think he might actually be out of the country.

So I have that office calling the eye office back.  Jesus.  Its like a full time job where you pay someone else instead of getting paid.

It’s just a bad day today.  Rent is looming over my head.  My parents aren’t back yet from Pgh, but my mom is keeping me updated on how bad my grandma is taking it.

She has Alzheimer’s, and apparently she was sitting next to the casket at the funeral home, trying to wake up my grandpa.  She has a broken heart.

This news has done wonderful things for my mental state.

I’m sorry for another negative rant, but its really hard right now.  Its one thing to be just tired.  But to have diarrhea, nausea, muscle pain, irritability on top of the usual pain and tiredness, its unbearable.

Please, please consider donating to my gofundme site.  I never thought it would come to this, but I basically have no choice.

Thank you for reading.


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..

Help me survive this calamity!

I thought about this for awhile and finally decided (after this past week’s disaster) to open a gofundme page.

I hate the idea of asking others for help, but I’m to the point where my family is “tapped out” and I have very, very limited options where government assistance is concerned.

Apparently I have to be EXTREMELY destitute before I can be considered for medicaid.

My husband is trying valiantly to keep us afloat and afford the medication that I need, but in this economy, two, and now three jobs aren’t enough.

I may get insurance in 90 days, but I’m concerned about the whole “preexisting conditions” exclusions, and I don’t have the mental capacity to read through the Obamacare regulations.

I have been a nurse for 10 years.  I have faithfully taken care of my patients when they have needed me the most.

I now need help.

Please consider donating anything.  It would be greatly appreciated.

Click here for the link to the page.

Take your medication EXACTLY as directed

The lovely hematoma from all the blood work and IVs.  I've had it worse before, but this one is solid underneath and painful.

The lovely hematoma from all the blood work and IVs. I’ve had it worse before, but this one is solid underneath and painful.

Good Lord, this week has sucked.

As a nurse, I deemed it prudent to completely take myself off my steroids.  If you have ever taken steroids, you know this is a bad idea.

In all fairness, I was down to 2mg (from a start of 60mg) and I honestly forgot to take them while on vacation for a variety of reasons.

I was a week or two out and I figured “hey, I’m not dead yet, maybe I can white knuckle some of these withdrawal symptoms and completely be steroid free!!”

I ended up in the emergency room.  Twice.

I woke up Tuesday with muscle spasms/contraction in all my limbs, but especially in my legs.  I could not control the frequent shaking and flailing.

I couldn’t talk.  I could stutter, I could stammer.  No coherent language.

And I was out of it.  I didn’t black out, but I was pretty much unresponsive at times.

Oh and my bp was all over the map, from 150s/110s to 92/palp.

And the sever pain in my lower back was horrendous.  Apparently this was my adrenal glands SCREAMING at me.

So the EMTs were called in on Tuesday to stabilize me and haul me to the hospital.

At the hospital, one I didn’t usually frequent and who wasn’t up to date on my condition, they missed that I was probably going through steroid withdrawal.  They gave me fluid, ativan, and sent me on my way.

I saw the rheumatologist the next day who put two and two together.  Apparently I should have had a cortisol level drawn and probably should have been kept for observation.  Shit.

She put me back on my steroids, wrote out a lengthy taper schedule (down by 0.5mg every two weeks).

I woke up yesterday with similar symptoms.  They weren’t as bad as Tuesday’s nightmare, but I could feel myself slipping.

So Mommy hauled me to the hospital (the one I frequent, to which my medical records are in their computer system), and I got fluid, steroids, and compazine.

I feel like a new person.

The muscle aches are there this morning, but so far I’m able to eat, able to move, able to talk and type.

The lessons learned?

Keep an ACCURATE list of medications and conditions on the fridge for these situations.  In the beginning I had done this religiously, but since I’ve been sick for over a year, I have slacked.

Have someone who knows your situation, knows how you have been recently, and who can advocate for you.  In this case, it was my mom and my husband.  I don’t know what I would have done without them.

And go to the hospital system that is most closely up to date with your condition.  In my area, there are three hospital systems.  I have been to two.

Finally, LISTEN TO YOUR DOCTOR.  Yes, I was permitted to taper my own dose of steroids, but I didn’t realize how poorly my body would react to the withdrawal of a substance I took for over a year.

So after $3,000+ in medical bills this week alone, I’m feeling better, physically.

And I have definitely learned my lesson.


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!

Have chronic illness, will travel

I survived my whirlwind six day trip back to my hometown.


Insomnia, anxiety, fatigue, and sleeping each night with a kicking six year old has taken its toll.

I got in last night after midnight, and slept off and on until 3 this afternoon.

The flights weren’t that bad.  There aren’t any direct flights from ATX to Pgh, so travel up north is a huge ordeal.

Just the act of hauling my luggage off the baggage carousel is awful.

I try to get flights that are equal in flight time.  Usually flying to chicago or tennessee does that.  But most of the time, its one big, long flight followed by a 30 minute one.

And seeing my family this time was particularly difficult because my grandmother is sick and I am sick.

These people didn’t understand my fibro diagnosis (even though my grandfather has it).  They accused me of faking it, being lazy, and a myriad of other things.

One holiday, soon after my diagnosis, I declined to help my six other (able bodied) cousins in cleaning up after Christmas dinner.

It took so much pain and energy to even get out of bed in the morning and make the drive over there.  I was planning on not even going.  But I sucked it up.

One aunt after another, including my own mother, took turns coming up to me and insulting me. One even used a condescending voice and said “poor widdle baby can’t help because she’s in pain…awwww”.

I haven’t shared a holiday with that side of the family since.  And that was 7 years ago.

I didn’t experience anything similar this trip, however.  Although a few digs were made.

It helps that in the past seven years my mother and two of my aunts have had health issues.  Not that I’m happy about it, but they have a little bit of an idea of what my life is like.

I still get shit from my mom, I don’t think that will ever end.  But this time it wasn’t as harsh.  I’m thanking the fact that I have a more difficult and provable illness along with the fibro.

Now that I have something that can be demonstrated in my blood results, she can’t tell me its all in my head.

The recovery continues…