Friday, July 12, 2013

My 'rrhag-cation

That title is supposed to sound like "rage" by the way.

Also, I should mention right up front, this post probably will have TMI (too much info) and deals with female issues so if you don't want to read this, back out now!

I really have debated about posting about this subject but since it has such an impact on my life and with others suffering from this, I feel it's important that maybe someone might learn about it.

Where to start.

Have you ever been trapped in your room or apartment for 3-5 days or sometimes more, where you literally have to watch the clock - have an alarm set for every hour - sometimes every 50 minutes, 24 hours a day - for days at a stretch?

You can't go anywhere unless it is a true dire emergency.

And this happens randomly - not every 3-4 weeks - nope. At least not for me. I am not that lucky. It chooses when it decides to take place. Sometimes it's every 3-4 weeks, sometimes it is every 5- weeks, sometimes I go 2 months without anything. But when it does hit, I am stuck.

My life revolves between the bedroom and the restroom. Every 50 minutes to an hour - for a solid 3-4 days at a stretch, sometimes longer. And that is during it's peak. The entire "rrhag-cation" (a spin-off from stay-cation a.k.a. vacation where you stay at home), can last up to a week to 10 days.

I have menorrhagia.

The worst kind of period a woman can have.

Now, before anyone starts thinking now wait a minute, there are all sorts of treatment options available for people with problems like this - yes, that's true. There are. For those who can have them.

I can't.

Let me back up to the beginning.

Heavy menstrual cycles run in the family. For me, it was usually an o.k. 1st day, a heavy 2nd day, then tapering off fairly quickly and then back to normal. The timing of them would slowly rotate each month (not on oral birth control) but it would rarely impact my life.

Then I turned 45.

Came down with severe pneumonia.
Had a pulmonary embolism = P.E. (blood clot in my veins) that made my heart go cuckoo.
Got to have CHF (congestive heart failure) and a 2 week vacation in the hospital.

Oh did I mention that the form of pneumonia I had - most people who were hospitalized from it died that year - I survived - Thank God! But that's another story.

Where was I?

Oh yeah, the P.E. + CHF.

Well, thanks to that P.E., I am now stuck on a lifetime's supply of Warfarin - blood thinning medicine. Which means no form of birth control - because birth control causes clotting of the blood. And that is the last thing I need. I won the last round with a rogue blood clot - I don't want to take that chance ever again.

Long story short - my periods decided to go bonkers. Whenever I get my period, I get to change every 50-60 minutes. 24 hours a day. 3 to 4 days in a row. I change more often than Superman does in the phone booth! I use the maximum size protection there is on the market (Tampax Ultras) and at $8.99 a box for 36 - and I usually use 2.5 -3 boxes a month - not including the cost of t.p., well you do the math. Expensive.

Yes, I've been to my doctors about it. There was a chance that maybe I could have a thing called Mirena put it (a form of birth control) - it is the only form of birth control approved to help slow down heavy periods. Whoo hoo! or so I thought.

Then I had testing done. Ultrasounds of various kinds.

Seems I was blessed with an extra thick lining in a certain place. Most women are 5 millimeters - mine - 20 millimeters!

So it comes down to needing surgery. I can have a D&C which is rather temporary. I could have a hysterectomy - which I really do not want to do. Or I could have an endometrial ablation (a magic wand / fan contraption put where the sun don't shine normally - then the heat is turned on and oh does one get one heck of a sunburn!) -

It is the last option I guess I want to go for - it is done on an outpatient basis but with my heart issues - they want me to have it done in the hospital. I happen to have severe allergies and asthma and am rather allergic to shellfish so all that makes having general anesthesia fun and games - the procedure can be done with a local anesthesia - which I am hoping I can have.

Which would be fine except for a few other wee problems.

Like not having medical insurance. It's next to impossible to hold down a full-time job where you randomly have to be off work for 3-5 days ever month or so. I don't know of any employer who would allow that. And I refuse to take a job under false pretenses - if I could even find a job that has medical benefits - to only work there a few days and then - whoops! I need surgery and a week off?


So I've tried to get financial assistance - that is a joke. I could get a 40% discount on a $10K-for-the-surgery-room-only-not-including-doctor's-fees procedure. I've tried to get temporary disability so I can have help getting the procedure done so I can get back to work normally. But they don't consider it a temporary disability. Even with back-up documentation from my doctors stating it keeps me from working properly.

(yes, I do work part-time when I can - but having a bad back and being over-qualified for a lot of the part-time jobs out there makes it even more of a pain - and true temp jobs are a rarity around here)


You spend 3-5 days trapped at home contending with this condition. Not to mention the anemia. And being a heart patient on top of this. I won't even start in about the emotional and hormonal toll it can take at times.

You can't sit in a chair or lounge on the couch - not for very long anyways - because the extra pressure of your body-weight makes it worse.

It is utterly debilitating.

And it effects (or is that affects - I never could keep those 2 straight) every aspect of my life. Not to mention how it impacts my family.

Well, I finally found one place that I might be able to get some help but I have to turn the paperwork in to slowly start the process.

If you want to read more about menorrhagia, here is a link to the Mayo Clinic's web site about it.

I'd write some more but my hour is up.


sharine said...

Sounds awful:(

Winnie said...

Ugh, I am so sorry you have to deal with this. Mine was nuts the last few years, and a lot of the same sympthoms. Now I am 47 and "done" but have the flashes and night sweats..ugh. Being a woman isn't easy!