07/20/2012: This week's version of "what more"

Last week I asked "can there really be more".  That's a stupid question, really.  There can always be more.  Until we die, there will always be more.  I just need to clarify, I really don't need anymore health crap.  I've had my fill.  I'm good.  Thank you universe.  Can we please move on?

But wait...there's more!

What else can there be?  Oh, Lori, don't ask that.  You don't really want to know.

How about this?  You ready?

Monday my husband went to see our new PCP.  The same one I love who thinks I probably have IC.  In his visit with her, conversation about me came up.  Me and my pain.  Me and my plight.

So a few weeks ago I got some odd bug bites.  Never had anything like them before.  And best we can tell is they are chigger bites.  And I was getting bit in my own bed.  Now...how in the world would chigger larvae get into a bed?  Well, see, I cuddle with my doggie as I fall asleep.  Once I'm asleep he usually escapes my clutches and heads to my feet.  He's an American Eskimo, which means he has a lot of fur.  And he has an undercoat, too.  So cuddling usually makes him hot.  He loves to cuddle as much as I do but he can't do it for long.  Luckily, I don't like to cuddle all night, either, just while falling asleep.  Anywho, see where this is going, yet?  Yep, I'm thinking doggie got the chiggers from the backyard and delivered them to my bed.  Each day I'd wake up with one new bite.  We finally changed our sheets on our designated sheet-changing day (monday) and the biting stopped.

These bites were interesting.  They'd be there for a day as a little red bump, like a mosquito bite.  And they'd be a tad itchy, too, like a mosquito bite.  Then the next day there'd be a white head.  Like a fire ant bite.  I'd pop that white head.  They'd be a little itchier.  Then the next day, another white head, only deeper this time. And never having had a chigger bite before, I didn't know what to do with that, so I decided leaving it alone was my best alternative.  I read online "cover the bite with clear nail polish" but that seemed absurd.  So I disregarded that.

Well, the first two bites I got turned into ginormous boils.  HURT.  Hot to the touch.  HURT.  Big.  Red everywhere.  Red growing bigger and bigger and further and further from the bite....HURT!

The other two bites I got, when that second white head popped up, I dug in and I got all the crap I could outta them.  And I put clear nail polish on them, too.  Those two healed and went away.  But the first two - still there, still HURTING, still hot to the touch.  On Monday they were probably at their worst yet and so when my Husby went to see our new PCP for his new patient appt, this came up.  She told him to tell me to come back.

Well, Monday was a day.  Yep, it sure was.  Aren't all days "days"?  Duh!

While Fred was seeing our new PCP, I was seeing our endocrinologist.  And he thinks I'm whacky.

Sheesh.  First doc to figure that out!  Someone give the guy a bonus!

I'm either stressed out (duh!) or I have a whacky thyroid AND pituitary gland (duh!).

Pain, in and of itself, wouldn't be stressful.  Nope.  No way.  No way I'm stressed.  Let's add in being mom to twins (beautiful job that I'll take any day!).  Now let's add in Husby has cancer.  Then let's add in endometriosis growing like a wildfire and increasing the pain that is already unbearable at best.  Then let's add in I still have to work and try to act like a functioning adult.  Yeah...no stress in my life.

Endo dude wants to medicate me now.  But, of course, as soon as he starts, that will mean I'm gonna be medicated for the rest of my life.  And he's thinking stress is the only cause of my absurdly low TSH readings.

Some of you have been following me for years.  I can't believe I've been blogging for years, but there it is.  You might (or might now) remember that before I got pregnant, I used to get TSH readings that were way below normal.  Normal is 0.4-4.0.  Sometimes 0.5-5.0.  I usually get TSH readings in the 0.16 range.  So definitely out of range.  But I've gotten them as low as 0.0002.  Like no TSH.  At all.  And yet my T3 and T4 are normal.  How?

So my thyroid behaves normally in spite of the fact that the feedback it's getting is telling it to back off.  I see a couple problems there.  Like - my pituitary gland doesn't know how to make hormones.  And my thyroid has a mind of it's own.  Scary.  We know the pituitary gland doesn't know how to make hormones right.  There's the TSH.  There's also the fact that I never have enough progesterone.  And when estrogen has been tested that's been way low, too.  I'm sure if all the rest of the hormones the pituitary gland makes were tested they'd be low, too.

But he wants to do a thyroid uptake scan to see if it's "just stress" or if there's something wrong.

Yes, doc.  I'm stressed.  We don't need a scan to answer that question.  Problem is, this problem has existed even when life has been 100% absolutely beautiful.  So me and this endocrinologist might soon be having problems.  If he wants to dismiss me as "just stressed", I'ma be mad.

So there I was at the endocrinologist's office going over how insane my health is nowadays while my Husby is talking to our PCP about how insane my health is nowadays.

I got myself booked for that thyroid uptake scan (happened on Weds) and made the follow-up.  Husby made his appt for his new patient consult since he'll now be medicated for life due to no longer having a thyroid at all.  And we left.  And Husby says "go see PCP".

I showed him right there in the parking lot what these "bites" looked like, how they'd changed since we left our house a mere 2 hours earlier.  I called PCP and managed to find an appt at 11:15.  We had drugs to pick up and an errand to run so we did that then squeezed in lunch.  Mind you, I was actually supposed to be at work.  I was going to go in "a little late" because of the endocrinologist appt but not "half a day late".  It is what it is.  We ate lunch and I ran off to the PCP.  We'd been driving separate cars as it didn't make sense for me to go home to drop Husby off to pick up those 10 miles again to get to work.  For a good chunk of that, we just left a vehicle at one spot and ran around.  But leaving lunch, we were back to our own vehicles. Husby got to me and my PCP appt as quick as he could.

PCP was beyond shocked to see me so quickly again.  I'd just met her Thurs.

I bet you really want to know where this is going.  If you're still reading, wow.  I love you.

So I drop my draws and show her "the bites".  One is on my left thigh and the other is on my right hip.  And 'oh my', she says.  They were still closed but they were obviously boils.  Having never had a boil in my life, I didn't know that, on Monday.  Because they were closed she couldn't culture them.  But, she said, if I was a carrier, I'd have a colony in my nose.  So she could culture my nose and determine "if I had it".

What's it?  You really want to know?

Staph.

As if I don't have enough going on already, now I need to deal with staph, too?

Better yet, she needs to rule out whether it's MRSA.

So she swabbed my nostrils and gave me a prescription for clindamycin and told me "pray it's not MRSA".  Followed that with "if you haven't heard from us by Friday, that means good news, but call anyway just to check".

So I go on my merry little way but I did run to the pharmacy before heading to work.  I wanted to start that clindamycin sooner rather than later as the things HURT.  And it was so late in the day, by that point, I knew I was going to be at work late late late.  Late enough the pharmacy would be closed by the time I got home.

My company used to not have sick time or PTO or anything.  If you couldn't make it to work, you just didn't.  No limit.  Just be honest and honorable.  Vacation was limited, you start at 3 weeks a year here.  Not shabby.  And there were checks in place to make sure you weren't using the unlimited sick time for vacation time like having to have a doc note if you were gone for a two days in a row.

This year, however, that got taken away. People were abusing it.  So now we earn 7 sick days a year.  And still our 3 weeks of vacation.

Because of all this crap we've been dealing with this year, I now have no vacation, sick, or personal days left.  So if I don't work 8 hours a day, I will be unpaid.  And it works in 4 hour increments.  So if I work 6, great, I'll be paid for 4 and unpaid for 4.  But it leaves me in this place that I have to adjust my schedule to do whatever it takes to get my 8.  And for Monday that meant I was here until 9pm.

That sucked!  Blue and Green basically did not see me at all on Monday.  I got them up and fed them, then Husby took them to daycare while we ran to doc appts and pharmacies.  But I did not see them before they went to bed.  Ugh.  Broke.  My.  Heart.

So, anyway, I go through Tues.  Boils are hurting like a son of a gun all danged day.  I could not move without one of them being hit or banged in some manner or another.  On my hip right where my pants sit "at my waist".  And on my thigh.  Ever try walking without letting your pant leg hit your leg?  Dang that sucked.  And that's on top of this nonstop 7-8 on a scale of 10 abdominal pain.

Ever had a boil?  Know how they hurt?  I'll take that over my abdominal pain any day.  They might hurt and they might suck but they are temporary.  You can see the problem and you can also see them improve.

So we get to Wednesday.  I head off to the hospital to do my thyroid uptake scan.  I take my radioactive pill.  I was told I'd be brought back 2 hours later to do a scan and then again 24 hours later.  So I should be able to take the pill, do the 2 hour scan, then get to work by 11.  A late day, but not as bad as Monday.

Nope.  I took the pill.  And I was told I was going to be coming back at 2pm.  I work 45 minutes away from where I live.  So driving to work after taking that pill would mean arriving at 10:30.  Leaving to make it in time for 2 means leaving at 1pm.  What's the point in that drive?  I won't get a 4 hour block of work in.  I had a vacation day scheduled for today (Friday) because of another day of incessant appts but those appts almost all got themselves canceled, so I didn't need Friday off.  So I called boss-man and said, how bout vacation today and not friday as I submitted for.  He said fine, sure.  And so it was.

In the meantime, back on Monday, Husby and I had also talked to new PCP about my level of pain.  How Stadol doesn't really work, it's just kinda the best thing so far.  I've often heard pain meds should get you back to a 2-3 on that 1-10 scale and if the particular med doesn't do that, then you should try something else.  Well, when you are walking into appts and not appearing in the ER, docs tend to not believe you're in pain.  This is what I've learned.  They are very leery of prescribing something stronger.  My ob/gyn was handling my pain initially and he's pretty funny.  Instead of saying yes or no when it became apparent stronger was warranted, he handed me off to someone else.  She, however, didn't appreciate that.  And I also don't think she understood.  So she just got mad at me.  Like yelling and screaming mad at me.  She did give me something stronger.  But when that also wasn't enough, she then wanted me to "stop everything".  Are you kidding?  I think she thought I was drug seeking and not truly in pain.

And believe me, I get it.  Docs put their necks on the line when they start prescribing controlled substances.  It's a pickle.  It's a balancing act.  I won't get to pain free and I get that.  But the road to relief has been torturous at best.  And the stress involved with that hasn't helped the pain level by any means.

New PCP heard us.  And she said "see this pain guy".

She also said "see this urogynecologist".  Instead of the urologist.  She kinda left it at see the urogyne and if you still need help then see the pain guy.  But as I thought about it Tues, I kind of realized, I need ONE person in charge of helping me with pain.  And who better to help with chronic pain than a guy that specializes in helping with chronic pain.  But that is where I am nowadays.  It's no longer acute, it's chronic and this pain is a beast in it's own right now.  Treating the endo and the possible IC and the staph infection and the thyroid issues and and and isn't going to solve all of the pain at this point.  As my PCP stated after torturous poking and prodding, there's a lot of sympathetic pain now, too.  That's beyond a urogynecologist.

So Tuesday after setting up the appt with the urogyne, I called the pain guy, too.  And they said "soonest we can see you is Aug 7".

WHAT?

That's like someone calling a shrink cause they're suicidal and the shrink says "all booked up, you'll have to wait".  That happens entirely too much.  I know pain guys are booked up, too.  But there should be a measure in place to not make new patients wait 3 weeks.

So there I was on the phone about to lose it.  Because the urogyne couldn't see me until Aug 9.  And I know the person currently "handling" my pain is not going to do anything else past today, 7/20, because she thinks I'm a druggie.  And then the lady I'm talking to says, wow.  Someone literally just canceled an appt tomorrow at 4:15.

Wow is right.  I'll take it.

Ok she says.  But you have a lot to do in the next 24 hours.  I had about 30 pages of medical history to fill out.  And I had to get medical records from every practitioner who has helped me with this problem.

And I had to do all that while working 8 hours a day.  And in pain.

I was pretty motivated.  This pain is killing me.  And I need help.  I don't want to be killed.  I want to get the pain under control and then not be so panicked about what to do about the endo, about the IC, about the thyroid, about anything else that presents.

So, yes, getting pregnant is off the table.  Husby and I both believe God and the universe are saying slow down.  But somehow, we also have faith that God and the universe do want us to have more kids.  He'll have 6 months of not being able to conceive due to being radioactive.  And that should be a good chunk of time for me getting a lot of my crap sorted out, too.

So, back to Weds.  With the new found "day off", it became medical-record-getting time.  I'd had the foresight to call my ob/gyn's office and they went ahead and printed everything for me so all I had to do was walk in and sign the release and I was done.  Going to the reproductive endocrinologist's office was interesting.  Sure enough, they accepted the form and then said "ok, we'll mail this to you within the month".  Um, no.  I'ma sit here til you give me that.

This office has been less than helpful entirely too much.  We've seen the doc twice.  I'm not asking for a danged book.

When we went into new PCP's office to get records from her, given that she is the one that recommended the pain guy in the first place, I mentioned that new PCP had indicated she'd rather have cultured the boil itself if it were open but because it wasn't open, that's why she cultured the nose.  And Tuesday night, one of the boils opened up.  Hurt like a son of a gun but also made it feel so much better.  They said, we can ask her and call you back.  I had to laugh.  Listen to me, chickee, I felt like saying.  I'm standing right here.  A nurse can swab this and we can all move on.  If I don't do this while I'm here, I won't be coming back.  I said something to that effect, but not rude like I wanted to.  And chickeedee sitting there says, well, I can schedule you for an appt in five minutes.

Seriously?

I've read reviews of this practice.  Everyone loves all the docs there.  But no one has nice things to say about the office staff.  I now have my own first hand account of why.

I made the appt for 5 minutes later and new PCP came to get me.  And she wanted to know what was going on, why she was seeing me for the third time in less than a week.  I told that story.  And she was flabbergasted.  Seriously.  They work for you!

Why do office staff in medical practices tend to be so ridiculous?  In my experiences that is far more common than not.  I just don't get it.

Anyway...

I'd filled out my 30 pages and managed to get all of my medical records on Weds.  I had every intention of walking into that appt and showing I have a real problem and I'm not getting real consistent support.

And he walked in and knew I wasn't lying.  He even explained to me what the real problem is.  For one, I'm getting inadequate drugs.  They'd be good for things like a headache/migraine, things like post-surgical healing, things like a severe sprain that is healing quickly (even if it might not feel that way).  But I'm not in any of those situations.  I have this thing that creates severe pain all by itself and it doesn't stop.  And all of the severe pain is creating more of it's own pain.  Strength is one thing my remedy needs to have to it.  But the other problem, the real problem, is that all of those inadequate drugs, which are meant for short term issues, are also not long lasting or fast acting.  So I'm constantly on this roller coaster.  Feel ok-ish for 30 minutes.  Feel like crap for 2 hours.  Feel like pure hell for 1 hour.  Finally take the next pill and start all over again.

So I'm on a patch.  Something that is already helping with the peaks and valleys.  I'm just getting started on his remedy but already I feel much better than I have in months.  I have the patch, I have one of those short term solutions for break through and/or for helping to get his remedy up to full speed.  In two weeks I'll add in an anti-depressant which has had great results in helping with pain, over the long haul.

But he's so very right.  That roller coaster...that really is/has been the worst of it.  Not the pain itself.  But the fact that every day I was up and down and up and down bunches of times.  And through a week, again, up and down.  Relief right after a prescription was filled but that relief would start to turn to stress as I'd get close to running out and would have to contend with doctors again about a refill.  And I'd be facing that uphill battle on a Thursday knowing what I had wouldn't last the weekend.  But then I'd be told "call us back when you're actually out".  Which would happen on a Saturday.  Which meant on-calls - who don't do refills - or the ER.  Panic was driving so much of what I was doing.  Panic does not, I repeat, DOES.  NOT.  help pain.  In fact, it makes it worse.

He listened.  He heard me and he heard my husband.  He poked and prodded.  Ugh.  Doesn't anyone get THAT HURTS?

haha

But he listened.  At one point my husband said, "I don't know anyone that can tolerate as much pain as she can, and I certainly don't know anyone who tolerates it so well".  The pain guy said the people that end up with chronic pain usually are the toughest when it comes to dealing with it.

Isn't that weird?

I don't know what I think about it.  I guess I don't think I have a high tolerance.  But my mom used to say the same thing.  She said as a kid things that would floor other kids I'd just say a light "ow" about.  It takes A LOT of pain before I turn to tylenol or motrin.  That's what she said.  And that's what my husband says.  But here I am going through this and I think I must be a wimp.  Cause this damned RE sits there and says "just breathe through it like labor pains".  Are you fucking nuts?  Labor pains hurt, for one, but they only last for a little while.  Comparing this to my labor pains, well, labor pains weren't much of anything.  They never got worse than my monthly cramps.  I have varying levels of cramps, some lighter, some heavier.  And labor pains were somewhere in the middle of that.  But this that I'm living with 24/7, this is worse than anything I felt in labor.  And unlike contractions, there aren't little breaks.  And it's been going on solidly for 2 months now.  And for 2 months before that, it went on solidly for 2 weeks before I'd get about a week long break.

You breathe through it, dumbass.

I don't think a doctor who has never experienced pain should be able to tell someone else how to deal with pain.  My cousin, an ob/gyn, is dealing with something like rheumatoid arthritis that is causing crazy intense pain in her hands and feet.  And she said after her experience with pain that she wants to kick herself for every time she told a patient of hers to effectively suck it up.  I'm not wishing pain on anyone.  But if you haven't been there, don't tell me how to cope.  You.  Don't.  Know.

Somehow this pain guy does.  And he listened.  And maybe the fix I have right now isn't the fix that will work longterm.  But I know he's going to help me get there.  He's not going to make me run out before we can move on or keep on.  He is going to support me in my efforts to get my life back.

In addition to the patch and the antidepressant and the break through remedy, he's also giving me a TENS unit.  I used one of those when my foot was shattered/destroyed in the Navy and I know it works wonders.  I am so ready for it but I can't pick it up until Monday.  Their guy that delivers them and teaches electrode placement based on the issues being dealt with only visits their office on Mondays...

Soo...that was Wednesday.

Member last week I said I felt like hope was lost?

I found me some hope again on Weds.  In the form of getting control back.  Amazing what can happen when you can control something.  I'm not back in control by any means.  But I feel like I'm on a road to get there, finally.

And RE is being fired now, too.  It's funny.  She had her purpose.  Pointed Husby and I to this new PCP.  But as a doc...I just don't feel like this relationship is beneficial to Husby or I.  It's about stacking her numbers and has very little to do with Husby and I as people.  I found a new RE that actually can do the techniques I would want someone to be able to do at the point that this all goes to the next surgery.  And it will.  It's not an if, it's a when.  And he should help with Husby, too, and his issues that might come up from being radioactive.

So then we get to Thurs.  I go back for my scan of my thyroid.  And...grr...thyroid behaved "normally" according to their numbers.  This is where it's funny.  You do the thyroid scan and the pill they give you - doesn't matter where you go.  Same dose.  Anywhere you go.  So you take this pill and then they use a gamma camera to see how much accumulated in the thyroid.  Then they use a gamma scanner to see where it accumulated in the thyroid.  Then you go back the next day for another camera shot.  The camera shots give percentages.  And according to NIH, anything above 25 is abnormal.  Then the question is why.  And the scanner should give a clue on that.  Cold spots or hot spots.  Check out webmd...above 25, abnormal.  Check out this site or that site...above 25, abnormal.  But hospital claims 35 is high end of normal.

I don't get that.  But it does scare me.  My percentage after 24 hours was 25.6.  So according to NIH and the rest of the American world, that's barely abnormal.  But it goes along with findings of TSH being absurdly low for the past 3 years indicating that I'm a "subclinical hyperthyroid" type of gal.  But if doc uses the hospitals range as his standard and not NIH and the rest of the world, then I'm fine.

But I'm not fine.  haha.  Yes.  It's stress.  I agree.  But this problem existed before the stress of this year occurred.  This problem existed when I was exuberantly happy and in a great place.  So I'ma have issues with endocrinologist dude next week if he says "you're fine".  I don't want to be medicated.  But I don't function right.  And I do have hyperthyroid symptoms.

So we leave hospital.  And we go to breakfast.  And as we are pulling into the parking lot, new PCP calls.  Culture came back.  It's positive for staph and it's positive for MRSA.

How's that for irony.  MRSA is very beatable, don't get me wrong.  But it has a higher fatality rate than my husband's cancer does.  But still, everyone wants to know how the cancer patient is doing.  Everyone wants to make sure he has support, that he's ok, that life is good for him.  It's amazing how many people just assume ALL of my crap is all associated with normal every day run of the mill stuff.  Endometriosis is endometrial cells growing in places they don't belong.  They can mutate as they grow in these wrong places and in their mutations can develop their own blood supplies as well as nerves.  Cancer is cells growing in places they don't belong.  They can mutate and develop their own blood supplies and nerves.  How is endometriosis not cancer?

My speculation?  Because it happens to women only.  And as much as we have grown and evolved, this is still a man's world.

Docs have answered this question for me, too.  Some docs think it should be considered a cancer.  Others say "because the cells are not abnormal, they are doing what they are supposed to, just in the wrong places."

Anyway, I think that makes a lot of this harder on both of us.  Husby feels fine.  He knows I don't.  He knows I need support, too.  But no one is offering to pray for me.  No one asks how I'm doing.  No one extends well wishes.  Everyone wants to put Husby on a prayer list.  Everyone wants to let Husby know they're there for him.  And the truth is, he feels fine.  I don't discount his cancer by any means.  I wish that I could not be distracted by all this and be 100% for him about him right now.  But this is our lot.  And we'll get through it together.  It would just be nice, to both of us, if people would understand I'm in a bad place, too.  I need support and care and prayers, too.

After this week, we do both feel like we are getting somewhere.  He got good news from the endocrinologist dude and we can't wait to meet with the oncologist.  He'll have to take his one single dose radioactive iodine pill and then be done.  A few scans and blood tests over the next few years to ensure that, but it's pretty straight forward for him.  If the endo is right, he can take that pill as soon as next week.  He just needs to get in to see the oncologist.  Everything we read through various hospital websites says he has to wait 6 weeks (from surgery) and 6 weeks without any thyroid hormones is rough.  So if he can get away with not waiting that long, that sounds wonderful to both of us.  Just put it behind us.  He will finally meet with the oncologist on Monday - and don't get me started with that crap.  He is going through MD Anderson as why not, given that it's local for us and they even have a satellite clinic in our area of Houston.  But they're pissing me off.  They sure do think they are the best in cancer care.  It's one thing to be it, but to think it...egotistical jackasses.

Don't get me started.  I wish they cared about my husband, the one with the cancer, as much as they do about their reputation and standing in the medical community.

But good news for him.  And we both feel like I'm finally starting to get a good team involved with all my crap.  I can't wait to meet the urogyne - which is still 3 weeks away.  And the RE I think I will have the best long term results with I meet in about a week.  This RE specializes in endometriosis.  And you have to send in a medical history and records of surgeries for him to review before he'll decide if he'll allow you to be a patient.  He reviewed my stuff yesterday and wanted to see me today.  Unfortunately Blue and Green's 9 month check-ups are today and I won't do this 4 hour appt without my Husby there.  But the nurse made sure I knew that he rarely wants to see people that quickly and that speaks to the level of what this disease is doing to me.  He usually has a week lead time.  And as it turns out, since I couldn't do the appt today, it'll be about a week before I see him.

Anyway.  That's this week's version of what else can be added to this growing list.  But in spite of adding a little bit more, it feels better now.  It feels like just by getting the two docs on my side, the new PCP and the new pain guy...I can do this.  My ob/gyn is still a good one to have in my corner, too.  I think the urogyne will be, too, and I think the new RE will be, too.  Just the old RE and her ridiculousness...crazy what that did to my mind.  So fired!

If you read all this, wow.  Thank you.  If you didn't.  I get it.  Either way - have a great weekend!!!