cindylouwho: (smile)
New new new new neuro is made of win.  She read over my chart, asked me questions and had a diagnosis within 15 minutes.  She has concluded that I have <a href="http://ihs-classification.org/en/02_klassifikation/02_teil1/04.08.00_other.html">new daily persistent headache.</a>

I have been prescribed Indomethacin and will be going back for nerve blocks and biofeedback.  She is also contacting my primary to make sure I can get tapering dosages of T3 since she doesn't prescribe narcotics.  

I finally feel like someone is listening to me, and she even agreed it could have been a result of the Optifast.  FINALLY REDEMPTION!!!!!

So I feel good about this and if the nerve blocks don't work they will petition to get me botox.

And she signed off on the surgery.  WOOT!  :)

Thank you all for your positive vibes and help and everything.
cindylouwho: (tennant2)
earlier I was tired when I made this post:

I hope this clarifies it, but I am kinda stoned now so IDK if it is clear.

The neuro [he is the 3rd one I have seen] has referred me off to a 4th one.  Seriously.  And he gave me the worlds smallest prescription, so I am NOT HAPPY.

Then I had the regular dr.  Well I would have, but she was home sick, so I saw some other dr.  He at least took my word about the sinus infection and gave me antibiotics and refilled the 2 medications I needed refilling and sent me to get a blood test to see if my vitamin d level was low again.  [it was so low 6 months ago, it was barely registering]



So: basically the old neuro is not equipt for my issues now that its apparent it is a daily chronic thing.  So they need to send me to someone who can deal with that.  SO I am seeing a pain management specialist and a neuro all in one.  They are working on the referral right now for me.  He says it is common to have people go back and forth to neuro's.  He wanted to send me back to neuro of fail but he left the state.  I would have NEVER allowed it.  No way in fucking hell.

I saw a PCP, not mine, and I was bummed b/c I love my dr.  She is sweet and great but she had been taking care of her sick kids and got the tummy bug herself.  SO I was able to get antibiotics for the sinus infection, a refill on the ativan, and an adjustment of my antidepressants.  I hope that will boost my mood.  They also re-tested me for Vitamin D deficiency which I bet is low again.  I hope that the upping of the antidepressants helps me and gives me back my motication and energy, especially if they find I have the D deficiency again.  That will fix me right up again.

I'm really sleepy and stoned and oops fell over

UTTER FAIL

Feb. 2nd, 2010 12:56 pm
cindylouwho: (barrowman!)
The doctor visits were utter FAIL.  FML. 

The neuro [he is the 3rd one I have seen] has referred me off to a 4th one.  Seriously.  And he gave me the worlds smallest prescription, so I am NOT HAPPY.

Then I had the regular dr.  Well I would have, but she was home sick, so I saw some other dr.  He at least took my word about the sinus infection and gave me antibiotics and refilled the 2 medications I needed refilling and sent me to get a blood test to see if my vitamin d level was low again.  [it was so low 6 months ago, it was barely registering]

I have to go to a meeting later for my part time job.  It is a waste of time.  I've been there so long I could RUN the meeting myself.  I do get paid for being there and fed, but I'd rather just get my materials and go home.  But I was sick for the last 2 meetings so I kind of have to go, that and I need the money.  And free dinner.

And when I got home I found Rascal had pooed on the floor.  

But I had turkey bacon and chocolate biscuits for lunch so that was good.  I also foresee a nap in my future.
cindylouwho: (wilson12)
 I have been unemployed since mid June.  It took until sometime in July to get coverage.  I had medical care through the summer, ending at the end of August.  At the end of August I began to apply for Mass Health/Commonwealth Care.  My paperwork was lost TWICE and after multiple phone calls I got a letter dated 10/16 that I was eligible for Commonwealth Care, as well as a phone call.  

SO when I can FINALLY GET THROUGH TO A HUMAN BEING,and give them all of my information, they tell me I will not have coverage UNTIL DECEMBER.  DECEMBER.  So I ask what I am supposed to do between now and then, which I was told to contact Health Safety Net.  I checked their site for info and it takes FORTY-FIVE days to get approved.  That will be some time in December.  Now I can wait on my primary care doctor visit, but I can't wait to see the neuro.

I need to get a flu shot.  I still need to have meds filled.  The ativan is fine, it's only 15 dollars out of pocket.  But my antidepressant is over $200.  I can't afford that.  And I can't afford to go off of it either.  Then there are the pain pills.  I have 4 left.  I do not think he will refill anything over the phone.  Maybe I can get them to give me T3's until I have coverage to tide me over.  I don't know.  I am going to be doing a lot of begging in the mean time.  Or I am going to be in pain until December, making it pretty much impossible to hold new job down.  

Not to mention they hit you with a tax penalty here in MA if you do not have insurance.   If I am taxed I will fight it with every fiber in my body.  

Not to mention my hospital visit and the one neuro visit I will have to pay out of pocket b/c nothing is RETROACTIVE.


AUGH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Now I have started a new job but I do not know if benefits are included as it is only a 3 day position.  Also I haven't done my paperwork yet.  So this could all end up being a moot point.  Or not.  All I know is that there needs to be a change in the way health care is managed in this country.  If I were to God forbid, get in an accident right now, I'd be fucked.  There is no way I'd ever recover financially.  My parents can't help in that kind of situation.  
cindylouwho: (wilson12)
OMFG my fucking head.  I can't take it any more.

3 t3s at 7:30pm.  It is 8:30 and I want to alternately scream and puke from the pain.  Fuck this shit.
cindylouwho: (Default)
* I hate when I dream about them.  I don't even care that they are together.  I stopped caring about that 12 years ago.  Just that he is there in my dreams and I can't talk to him.  I miss you B.

* When will this headache end?  Seriously enough is enough. 

* I've also had enough of the pollen, thank you very much. 

* Not much luck on the job search front.  Not many jobs to be had.  :(
cindylouwho: (Default)
Finally got new sneakers.  Took a nice run at the gym.  They are really sweet.  They are NB 1223's and are nice and cushiony.  My roommate works for NB so I get to use her discount which saves me money.  I also get free shoes on occasion since I am a sample size shoe and she brings free stuff for me.  (Last week I got Aravon leather ankle boots)  :)

Of course last night I whined about not writing and what I did I do before I went to bed.... write. LOL.  I don't know if I will finish it or post it so.....

My head has been killing for 3 weeks now non stop.  The Vicodin helps for a little bit but doesn't get rid of it.   Another month until new doctor.  I hope I can make it that long.  

I'm watching the MLL draft with my roommate and I should be asleep.  
cindylouwho: (Default)
Neuro of fail is closing his practice down at the hospital I see him at.    I find this amusing.  Too bad I had already had my files sent to me to give to my new doctor.  Preemptive strike.  

This makes me happy.  I would have been rid of him either way,  

And on that note, I am going to TRY and go back to sleep now.
cindylouwho: (Default)
I haven't been running in almost 2 weeks. Last week I had insomnia bad and I could hardly function never mind run. This weekend I was busy, had softball, and then Monday my stomach was upset. Yesterday my head hurt and today I said fuck it and went to the ER. I hate having to spend the money, but I needed to get SOMETHING. I was not going to make a month with no meds. So I have vicodin. Not many, but hopefully enough to get by. They told me to come back in 2 days if it isn't better. LOL. It hasn't been better in 3 YEARS!!!

I really hope that this new doctor has the answers. Or can get me to the people who can. Or gives me meds that don't suck.

No job prospects as of yet. Schools here are laying off teachers, not hiring. :(

I hope to go running tomorrow. One month until the 5k. I better get on it. I know times are tight but if anyone wants to sponsor me, it would be real, real great. I promise to do something wonderful for anyone on LJ who donates, be it a fic or something. <3

My report cards are due in a week. FML.


Otherwise, life is ok. I have friends coming in for a big gathering of Red Sox fans this weekend so it should be fun and crazy!

::sigh::

May. 18th, 2009 12:21 pm
cindylouwho: (housecane)
Being home sick from work sucks. And is boring.

There is nothing on tv.

I could read.

I *should* be working on my report cards.

I called my new dr's office to see if I could get my appt. moved up. No can do. It is going to be a long month with no pain meds. If worse comes to worse I can go to the ER again, but I owe so much money already I really do not want to go there.

Ugh

May. 17th, 2009 08:07 am
cindylouwho: (cameron)
My head and hip are KILLING and I have go to play softball. (This wouldn't be an issue if I had more than 3 pills left and I could take something, but NO)  IN THE RAIN.  DO NOT WANT.  I just want to get back into bed and stay there.  I can't believe the game hasn't been canceled.  I mean srsly who wants to play in the rain???  Not me.  Not to mention the park is like 30-40 minutes from here and I am going to be annoyed if I go all the way out there and find out they canceled it then.  Ugh.
cindylouwho: (parade 2)
*Day off today, yet I was wide awake at 6:30.  :(

*Made it to the gym today, finally.  Of course I'm paying for it with a killer headache, but I got my 5K mileage in, and a good deal of it actually running.  Now if I could just do this 3-4 times/week I will be ready for the 5k in June.

*Cleaned the house today (the kitchen and bathroom mostly) and it looks so much better.  I wish people here cared as much as I do.  It's tiring to have to do it all on your own.

*There are a million things I want/need to do/buy but lack of fundage is putting a damper on it.  (want to see M v. A, get new glasses, car washed and cleaned, need book on baseball math for school, groceries, watch battery replaced ~ PAYCHECK FAIL, new clothes, shoes, etc)

*Need to find new primary care doctor for second fourth opinion.  Anyone know of any one good in the Boston area, preferably not at St. Elizabeth's?

*Maybe I should just take a nap?

cindylouwho: (parade 2)
Had appt today.  Showed neuro that March had sucked; 4 days total I didn't have a headache.  He is now calling them "treatment resistant chronic headaches."  Lovely.

So changes are to follow:
1.  Wean off nortriptaline starting today.  50 mg per day for 1 week, then 50 every other day for 1 week.
2.  In 2 weeks start Cymbalta @ 30mg, going up to 60 if tolerated well.
3. Stop Topamax.
4.  All other meds stay the same.
5.  I also didn't get cut off, but I know he wasn't pleased.  Wants me to keep t3's to 15/month at max; which is a change from the 1 a week he wanted me at.  

Unforunately the pharmacy hasn't gotten the script via fax yet and I have to wait.  I hope I don't have to wait until tomorrow. :(
cindylouwho: (Default)
Well unfortunately the Topamax experiment is over. Actually it is rather fortunate since for the past week and some days I HAVE NOT BEEN ABLE TO DO A DAMN THING! I have not been able to think clearly. I don't remember most of this week actually. Most of it went by in a fog. I actually went to bed at 5:30 pm last night I was so tired and out of it. I was hopeful that it would work, b/c it was actually alleviating my headaches. (or I was so out of it I didn't know my head hurt) So Monday I will be calling the neuro and letting him know I'd rather be in pain without meds than live my life in a fog. I was observed at work on Tuesday and I don't even remember it at all now.

Seriously. Can't. Remember.
cindylouwho: (Default)
Today was my appt. with the neuro.  It actually wasn't as bad as I was thinking it was going to be.  I didn't get "lectured" so to speak and he gave me a T3 script without me having to beg ask.  (perhaps being paged "in the middle of the night" [at 7pm] didn't make him happy.)  He did note that I had gone through like 30 this month (hello I had 2 failed spinal taps and 1 one that nearly killed me for heavens sake, you should be lucky I wasn't eating them like candy.

He confirmed my spinal tap was fine.

He seems to be getting on board that this is a chronic thing that isn't being treated by conventional means.   He even told me to stop stressing about it (well I can now that I have frigging pain killers srsly)

He did make some changes to see what happens.

AM Meds: 
B2 and Magnesium
100 mg Nortriptaline (moved from evening)
 

PM Meds:
B2 and Magnesium
Metropolol
Topomax (new addition)  [off label for weight loss w00t!]

We also discussed the possibility to weaning me off the nortrip. and changing to Cymbalta.  He wants to see how this change goes first.  He also gave me a script for Lidocaine patches and gave me a bunch of samples.  I guess  I can use them on my back too when it is killing.


So it went way better than I had expected.  I go back on my half bday to see how things go.

cindylouwho: (Default)
So as you may or may not know on Thursday I had a spinal tap.  (which btw came back fine, all the fluid and pressure tests are perfect, juts like I said they would be)  And now I am on day 4, 5? idk anymore of bedrest.  I can't sit or stand without feeling like my head is going to explode.  Right now, my head is slightly elevated so I can type, and it is teh suck.

Anyways.... so yeah I've been to the ER twice.  I was going to have a blood patch to address this headache issue, but since the LP had to be done under xray there is no way they can do the blood patch unless they do it that way..... so I have pain meds and another 2 days excused from work if need be. 

I hope this goes away soon.  I cant even do simple things like making a cup of tea without it draining me.  
cindylouwho: (Default)
So today I went to the ER.  My head was killing.  So after I go through all the normal paperwork bullshit and finally see a PA and explain the entire 3 year history and about how the neuro wasn't giving me pain meds, and how I am not a drug seeker and just want to work and do my job and so on.  SHE PAGES THE NEURO!   I was sitting there (in pain b/c no one had even given me a fucking vicodin) LOLing about the fucking ridiculousness of it all.  So he calls back and says that I need a spinal tap.  The PA comes back and I could tell she was like OMG why did I just call that douchebag (she even said he didn't even listen to her) and she is like you have a choice.  You don't have to do this.  ANd I was like well yeah I do, if he is going to take me srsly and all I better do it.

So I forgot my cell today (of course) so I use their phone to call my mom and get my roommate's # so I can have her get  my bosses number so I can call out of work for tomorrow.  So they get me situated and then the Dr comes in and explains everything and asks if I have had any meds yet and I am like NO WANT NOW,   He asks about what I have had before and I explain and he says have I had morphine.  And I was like um no.  So he gets me fentanyl and I am high as a kite in 34 seconds.  

Then they start the tap.  And try.  And try.  And try.  Three different sites.  NO FLUID.  But he is hitting nerves pretty good and I am screaming.  Finally he gives up and pages the anesthesiologist on call.  So she comes in and is all nice and fluffy and gives me a pillow to hug.  And then her boss who is like the head of anes. at Brigham and Women's comes to assist/watch.  And they try.  And try. And try.  And I scream fucking bloody murder.  And they give more fentanyl.  And they try again.  And fail.  So they say well guess not.

FAIL.

So I have to have it doen floroscopically.  And Neuro wants it done before I see him on 2/25.  So I have to do this again.  

I have a small script of T3's which is more than I had this morning.  And I free pass off work tomorrow.  I also have a headache worse than when I went in to the ER and my back is killing.  I am sure the headache is mostly since I haven't eaten since 11:25 am.  (I just ate and feel so much better)

So yeah.  Good times.
cindylouwho: (Default)
I know Cindy, STFU with your whine MOAR.  We know your head hurts.

Fuck it hurts. 

Head update

Dec. 7th, 2008 08:48 pm
cindylouwho: (Default)
I forgot to post an update to the saga that is my head. Friday I went back to the pain center and met with another doctor, since the one who will be handling my case, was not there last week. She was very nice and listened to the entire story and all of the things that have been tried and done and what works and what doesn't work (since the notes from my first visit weren't there yet). I explained that the new meds had chest pain as a side effect, and I didn't think that was something I should be taking IMO. She did agree. She also gave me a small script for T3s reminding me they do not remove the cause of the headaches. AS IF I DO NOT KNOW THAT AT THIS POINT. But they take away the pain so I can function. My next appt there is on the 19th and hopefully they will have a plan or something. I'm so tired of this. It's exhausting, not to mention expensive with all these dr. visits and prescriptions.

So hopefully I will make it to the 19th without needing all of these pills or more of them. It's been an ok weekend painwise, maybe as high as a 5 at some point, but not like last Wednesday when I wanted to drill into my skull with my drill.

Head update

Dec. 4th, 2008 07:03 pm
cindylouwho: (Default)
Today I went to the ophthalmologist. It was a fiasco. I was there for 3 hours and I had to have my eyes dilated. Then they did some tests which made me very anxious and then tried to do another and I basically said stop. I was freaking out and I had already taken 2 ativan and I was feeling like I was being pushed and pressured into this machine for my head. Not fun.

The results: There is no tumor on my optic nerve or anywhere my eyes are. Everything is fine.

This is all great, but it is just another thing checked off that is all right. I wish something would just be *wrong* so it can be fixed, so maybe they will believe me when I say I'm in pain.

I have another follow up with the pain center tomorrow. I've been calling all week and today I was like listen, I've been fucking waiting for a call back and no one has done so and I'm in pain and I want someone to listen to me. So the guy arranged for me to see another dr. there tomorrow. And they better give me pain meds b/c I am rapidly approaching the end of my secret secret secret stash.

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