Today's Thought

I'm going public.

Eeeep.

This liddle blurp here has been private and hardly anyone has read it.  I've given the link out to a LOT of people, but only a handful (less than a handful......I could fit them on my pinkie) have actually come here and read.  That isn't why I write here, but I've had the safety net of knowing that the only people who are reading are people that I know and trust.

The public spot will be somewhere semi-safe too.  I'm not publishing an ad or anything.  I don't know that any more people will read it.  But the safety net is going away.  For some posts.  The snarky heavy-boot day posts may stay here for awhile.

I might just start with some lists....I want to write my bucket list, and I'd love to get people's input on it and see what other people have on there's.  I have a list of restaurants I want to go to!  Places to travel to and places that I want to see again.

I made a quasi-promise to myself about a month ago that I'd write at least once a week and it hasn't happened.  Maybe this will kick start it.

We'll see.  First I need to find a spot........

Hello little blog spot

It's been awhile.  I've thought about writing but sometimes, for me, thinking about doing something takes care of the need to do it.  Which is great sometimes - it gets rid of the anger or frustration, but it also doesn't confront the situation that needs to be dealt with.  And if I want to actually WRITE, it's going to be self-defeating.  So I'm here.


Today must be a productive day.  My house has spiraled out of control yet again, mostly because my body and mood are spiraling yet again.  The owner/realtor is coming by tomorrow with the inspector for the final inspection before the place sells.  It's not dirty (yes, it's dusty) but it's untidy and cluttered and there are piles of laundry that need to be folded and put away, and the floor needs to be vacuumed......I have a kitchen counter under the mail.  Things like that.  I DO feel better when it's cleaned up.  So that will be the first part of today.  Hopefully it won't take most of the day.  Well the laundry washing will but that's always a Sunday thing.


The adventure with stopping the meds, aside from the glitch when I had the spinal tap, went surprisingly well.  The topamax has held back the migraines as well as it ever has.  I've gone through the Relpax as fast as I thought I would so that isn't a surprise.  


I had the EEG and started on Zonagran after as my neurologist directed me to, and I've had some pretty nasty side-effects.  At first I didn't realize that what was happening was related to the medicine because I had a temporary crown put in a few days before I started it.  The temporary crown was plastic, and I had a plastic-y taste in my mouth and my teeth felt like they were coated in plastic for the first few days.  I'd never had one before, and the people I asked about it said that this was normal and it could last a few weeks.  WEEKS?  It was horrible but if I had to deal with it, I'd deal with it.  


After the first week it went from feeling like plastic on my teeth to feeling like a kind of waxy.... mucus and it wasn't just on my teeth but on the roof of my mouth and on my gums and tongue.  I'd brush my teeth (and tongue, gums and roof of mouth) and it would go away for awhile but would gradually build back up.  I also started to notice that all of my food had lost its taste.  I'd take one bite and it would have some flavor for the first few seconds but as I'd chew the flavor would disappear.  Everything tasted like waxy mucusy slimy nothing.  The goo kept getting building up until brushing my teeth only helped for a couple of minutes.  When I'd eat foods like bread they'd literally dissolve into mush like the goo was toxic, turning into the same slimy texture.


I found out when I saw an ENT a few months back that I have a deviated septum on both sides, and I thought that there must be something going on from this, combined with the temporary crown.  I was going in to see Obi-wan for something, and I've noticed that my big toenail on my right foot has a little yellow spot on it so I showed it to him.  Something normal!  Toenail fungus!  He gave me an Rx for it.  I told him about the problem with the goo and he thought that I might have fungus in my sinus (sounds wonderful) and said that the med for the toenails would help it too.  


I went to the dentist to have my permanent crown put in and I told them about what was going on.  They were stumped.  They said that the taste from the temporary crown usually only bothers people for a day or two, and they've never had anyone with the ....snotty little problem I've been having.  The hygenist was great and said that it would bother her more than me - she's had to work around a lot worse before.  So I got my permanent crown in and my teeth cleaned, and my mouth was STILL covered in goo.


I had a follow up with the neurologist the same day and I mentioned it to her.  She said it's a side effect of the Zonagran!  She wanted me to stick with it a bit longer.  She was concerned about my not being able to eat though (I've had no appetite for several months), and said she thought it was being caused by the Phentermine that I'm taking for the neurally mediated hypotension.  Phentermine is known as an appetite suppressant and I agreed to contact Obi-wan about cutting the dose in half.


I got back to work and called Obi-wan's assistant and let her know about what the neurologist suggested for the Phentermine.  The goo build up was insanely bad that day, and the next was worse.  I can't describe how bad it was, and I'd been woken up for two nights in a row with migraines.  The meds that I'd taken for the migraines weren't making them go away completely and they were coming back later in the day so the Zonagran wasn't working all that well.  I decided to look it up.  


The side effect that I found that kind of unsettled me was anorexia.  Odds of me having anorexia to the points of being a skeleton are slim, but I've been having a LOT of trouble eating.  (I know.....how weird is that?)  I don't remember to eat and I'm not hungry.  If I can get a yogurt in at breakfast, an apple or some nuts at lunch, then remember to have something when I get home it's a good day.  So taking a medicine that has one of the first side effects listed as anorexia, that isn't working well for me, that has ANOTHER side effect that's horrifically disgusting.....yeah.  I decided I'm not taking it.  I emailed her assistant (easiest way to get in touch with her) that I wasn't taking it and I was going back to the Topamax, and did she have any other suggestions?  My follow up with her isn't until mid-June.


Did I mention it was doctor week?  I'd seen Dr. Liptan the day after I saw the neurologist and told her about the goo and the conversation with the neurologist, and that she had said that I was having a side effect from the Zonagran.  Dr. Liptan looked it up and found "taste perversion" as a side effect.  *L*  Gotta love that one!  She leaned towards going off of the Zonagran so I do feel comfortable with my decision.  She also recommended adding some probiotics as there could be some yeast going on in the sinus as well (sounds like it's a regular party in there) and that's an easy one so I've picked those up too.


I see a different ENT on Monday as the first one I saw wants to do some pretty radical surgery that I'm not comfortable with.  I'm hoping he'll have some idea what's going on.  I haven't seen much of a difference in the snotty little situation, but I've only stopped the Zonagran for four days and I'd taken it for almost two weeks.  I don't know how long it takes to work its way out of my system, and I don't know if that's the only thing that's causing it.


Something reassuring for me is that I've been told by several doctors that there IS something going on.  It's NOT all in my head, and it's not just fibromyalgia and chronic fatigue (not that those aren't valid and more than enough for someone to deal with).  I don't know if they'll be able to pinpoint it with the testing or not.  It's not my weight and I'm not imaging things.  Finding out what's causing it all would be awesome, because then we could start treating it, if not fixing it.  At least having people, reputable people in the medical profession, believe me and support me, makes an incredible difference.  

It’s been about three weeks (I think..four?) since I got pulled off of my meds.  Not my pain meds, but all of my meds except of the ones that I take for my Neurally Mediated Hypotension and Topamax for migraine prevention. 

When I was diagnosed with fibro and CFS in August, I was taking Topamax and Indural for migraine prevention on a daily basis, and an OTC vitamin D supplement.  I had several different “as needed” Rx meds for different things such as asthma.

I also had a drawer full of mostly full bottles that had been prescribed by different doctors who had seen me over the last seven to eight years.  The bottles were full because the drugs inside hadn’t helped me.  They had made my symptoms worse, had made me fall asleep or had made me nauseas.  Some had done nothing at all.  The drawer represented hundreds of dollars.    

I had walked up and down for each of the doctors in turn, for about three to four feet.  I had followed their little pencil with my eyes.  I had watched as my knees bounced up and down when they hit it with a rubber mallet.  I had electrodes attached to my arms and legs and was shocked with electricity (yes, it hurts) and stuffed inside tubes so tight that I literally could not move a millimeter, and am now claustrophobic in enclosed spaces.

Physical therapists that I saw commented that my startle reflexes were hyper-sensitive, and some of the doctors also commented that my knee jerk reactions were exaggerated a well.  One leg was significantly weak.  I had loss of sensation in one thigh.  (This is the ONLY thing that was ever confirmed – there’s a major nerve that runs through the pelvic cavity into the thigh.  Mine is pinched.  If I lost about 30-40 pounds it would get better.  I’ve lost almost 60 pounds and the sensation hasn’t come back.  Hmmmm…)

While the doctors poked and prodded and stuffed and shocked and my body continued to twitch and spasm, I started to forget things.  I’d go to the grocery store for toilet paper and walk around for 10 minutes, knowing that I’d forgotten the reason I was there.  I lost words, single words when I was talking and people got used to filling in parts of my sentences for me, and some words for months on end.   The brain will fill in with close substitutes, but if you ask a waiter for cutlery you WILL get an odd look from him.

The constant through all of this was pain.  The muscles in the back of my thighs hurt continually.  On the infamous pain scale with 1 being no pain and 10 being you want to rip someone’s face off, the left thigh was about a 5-6 and the left was a 2-3 for about 85% of the time.  My calf muscles were both at a 4, also about 85% of the time.  My upper arms started to chime in.  My back muscles would spasm and cramp. 

There were other things as well.  My vision was blurring.  I’d had minor symptoms of irritable bowel syndrome for awhile, usually when I was upset – it had kicked in full force.  I started to have “personal earthquakes”, where I’d be walking or standing feel and it would feel like the earth had shook.  I’d loose my footing and have to catch myself from falling.  One time I DID fall while crossing the street.

The answer that I got from all of the doctors?  There was nothing wrong with me.   If I lost weight it would all be better.  They’d give me the prescriptions to treat the symptoms though.  They all agreed that the symptoms were real.

This all took place over about a six year period. I had two MRIs.  I had an EMG.   I was referred to four different neurologists.  I was told that one of them was the BEST neurologist for people with my symptoms in the Northwest.  My physical therapist notes and test results had been forwarded to him, and when I called to schedule the appointment he was booked out for two months.

I didn’t actually see him.  I sat in his empty waiting room for half an hour and asked his receptionist if she knew how much longer the wait would be, and she said that she thought he would be right there.  No one came in or out and the phones weren’t ringing…. Half an hour later I asked again and she said that his prior appointment was running behind; he was at the hospital.  I called work and told them that my appointment was running behind.  Half an hour later I asked again.  She hadn’t heard anything from the hospital but he knew he had appointments that morning.  (Appointments?  I was the only one there.)  She’d be glad to reschedule me if I couldn’t wait any longer.  He had an opening in about six weeks.  I said that I’d wait another ten minutes.  As I walked away she slid the glass partition closed, but it didn’t close completely.  I heard her talking to someone,  asking if they knew where he was….he had someone waiting in the office.  (That would be me.)  She said something about he was on the range?  A game that morning?  I went back up and told the receptionist that I was leaving.  She asked if I wanted to reschedule and I thanked her and said no.  I had had to wait for his office to review my referral before he would agree to see me, then I had to wait two months for the appointment.  I had spent an hour and a half waiting and he had apparently forgotten that he had the appointment with me.   I’d find a doctor who would at least remember to come into the office.  She asked if she could have him call me, and I declined.

I got back to work and settled in, trying not to let my head pop open from frustration.  Later that afternoon I got a call from him.  He didn’t apologize at all.  He said that he had looked at my test results, and they were all normal.  There wasn’t anything wrong with me.  He didn’t understand why I might be having any of these symptoms, and maybe I was exaggerating them.  He noticed that I was overweight, and if I lost some weight I’d probably notice that I felt better.  This was several years ago, and I hadn’t been beat down by enough doctors yet so I didn’t say what I was thinking.

About 10 days later I got an Explanation of Benefits in the mail from my insurance company for a complex office consultation.  I had worked with reviewing injury claims and bills enough to know that he had billed for a full, face-to-face, minimum time of one hour visit involving a detailed exam and diagnostic evaluation.  The charge to my insurance company was over $400.00, and my co-pay amount would be $35.00.  The length of time between when I put the EOB down and when I dialed the phone was too short to be measured.  I explained to my insurance company what had happened and that I had said that I did not want him to call me.  I also let them know that the total amount of time I had spent on the phone with him was under five minutes.  They agreed that he should not have charged for this, and that they would be contacting him.  I got three bills from them for my co-pay.  Each time I got one I called their accounting department and let them know what had happened, and why I wasn’t paying it.  Eventually the bills stopped, so they must have figured it out.

So what does this have to do with my going off of my meds?  The end result of my drawer full of useless meds and lost money is that I know have fibromyalgia.  It hasn’t been scientifically proven, but it’s theorized that long-term unresolved pain can lead directly to fibromyalgia.  The neurons go into crisis mode and start screaming for help, 24/7. 

I’ve also been diagnosed with Chronic Fatigue Syndrome.  I think that I had the seeds of this years ago.  My sister also had it.  Possibly the long-term pain also kicked this into action.

I’m keeping the meds that I’m stopping.  I don’t want to start taking them, but I’m aware and have accepted that I may start taking one or more of them again.  I’ve had one major bad day and it was a combination of many things, not just the removal of the meds alone.  I have had to take a lot of the migraine relieve medication – that’s one GOOD thing that the toxic cocktail had done that was good.  It had really effectively controlled my migraines for the first time in years. 

I have the chronic low grade headache again.  The muscles in my back are spasming up but not too badly.  My sleep is down to five hours a night.  I can think clearly again, and I’ve got some concentration back.  I feel like I’m in a better mood, and my sense of humor is also better. 

All of the symptoms that started this craziness are still here.  They have waxed and waned in severity for years, and have played tag with each other and they’re still doing this.  Some of the things that the doctors were thinking might stop, the neurological symptoms, haven’t gone away.  The hard thing is that they’re not consistent. 

The really good thing is that I DO have some doctors who are behind me now.  It was the Neurally Mediated Hypotension that drove me to the doctor who recognized that something really was wrong.  She referred me to the Neuro-Muscular doctors at OHSU, who recognized the Fibromyalgia.  They also caught some abnormalities in some blood tests and asked me to let my primary doctor know about them.  I think I hit the jackpot, and chose a great person for primary care.  He is wise enough to admit that he doesn’t know everything there is to know about medicine, and I’ve been his medical guinea pig for the last six months.  He wasn’t sure what to do with the abnormal test results so sent me to an Infectious Disease Specialist, also at OHSU.  I’m not sure why he sent me to him, but this doctor seems to like figuring out mysteries.  He’s sent me to an Ophthamologist and an Endocrinologist.  The Fibromyalgia team at OHSU recognized my Neurally Mediated Hypotension and got me the information on how to get referred so I could get the testing to confirm this diagnosis.  And my primary care person spent hours of his own time researching the condition to find out how to control it, as there really isn’t medication for it.  I also found a great doctor who specialized in Fibromyalgia.  She pointed me to an online support group, and the people there have probably been the greatest life saver of all.

I’ve got two drawers filled with medicines that I’m not using.  As soon as the next day comes to drop of old, dead medications I’m going to drop off the old drawer that never worked.  Right now I don’t have a need for any in the “fibro” drawer, except for the ones that help me to sleep.  I don’t WANT to take them though as they seem to be the ones that were making me the “foggiest”. 

I’ve got a lot of ideas bouncing around in my head.  I hear different things that people do every day that works to help them deal with their paid, and the frustration.  They handle the fuzziness inside their heads.  They manage dealing with cramping constipation at breakfast and horrible twisting, run-for-the-bathroom diarrhea at noon.  Most of them don’t want to take prescriptions.  Some of them don’t take any and a few might take too many.  Once in awhile I’m afraid that people mix them up purely because they’re not thinking clearly because of the level of pain that they’re in.  Amazing and unique ideas are being bounced off of people all the time.

No one likes being sick.

(Oh, just a side note.  For all of the doctors who said that if I lost weight everything would get better.  Three years ago I lost about 40 pounds through a medically weight loss program.  I lost it fairly quickly.  I didn't have any change in my symptoms.  Some of them got worse.  I kept the weight of for about six months.  I did gain it back, plus a bit more (stress eating).  Over the last year I've lost 60 pounds.  I lost about 35 pounds very quickly, it's never really been determined why I lost those first pounds.  Since I'm overweight, the doctors, regardless of how good they are, seem not to hear it when I tell them that I'm not DOING anything - I've lost my appetite and/or I'm eating normally and have lost the weight in a short time.  Since I wasn't hungry, I figured I might as well eat well so I've changed what I eat and how much I eat and I've lost the rest of the weight slowly since then.  I still have a way to go.  Since I've lost the 60 pounds.....no change in anything medical.  Weight really isn't the answer to every medical condition.)

     I'm not good at finding titles for these, probably because I don't really have a targeted audience.  I can see that people occasionally wander through.  There aren't any footprints in the cyberdust so I'm guessing it's someone I gave the URL to - one of my technosavy friends checked and I'm pretty well hidden from the world here.  Which I like.

     Again, I should be sleeping.  Tonight I'm using the time change as an excuse.  That, and I was up way too late last night.  I got up around 11:00, which my body and internal time clock still think is 10:00 AM, so I "should" be ready to sleep....I probably could go to sleep.  I'm not sure why something in me is fighting it.  Because I know that when I get up I have to go to work, and that work is turning into a targeted hell again?  Or is it because of something else?  Good pondering fonder, but I really don't want to ponder now, as that will really just keep me awake.

     I'm so grateful I  have my cats.  They WANT to be around me, no matter what.  I can go stand in the kitchen just to get water, and Wallace is off the couch and right at my feet.  If I'm there long enough to do dishes, and Gromit will wander in too.  If I sit on the couch for more than a couple of minutes, both of them are right next to me.  They do want attention sometimes, of course they do.  I want to pay attention to them too.  But they don't demand it when they follow me around.  Work would be better if I could take my couch and cats with me.

     April 3rd is really much to long of a wait.  Since I haven't been called I'm going with the premise that nothing is going to explode in my head.  I still don't want to wait.....I don't want another "The test is normal." answer.  Normal is good, but it means that once again, there's no idea what's going on.  Removing the meds hasn't changed the symptoms.  They were on the bottom end of the cycle when I went off of them so they're not bad right now, but they're still here.  Ah well.  Like Nancy said, whatever it is, if it's killing me, it's doing it really really slowly.

I should be sleeping.....

     I should be sleeping but it's overrated.  Or that's what I tell myself.    


     February, the shortest month.  It sure was a full month.  A visit to Dr. Bryant, whom (or who? never sure on that, I should look it up...no one uses it when they speak but it's still in writing but when is it used correctly? *ponder*) is I believe a toxicologist or infectious disease specialist.  I don't have an infectious disease, as far as I can tell, and I haven't been poisoned so I think I'm just continuing to see him because I interest him.  Which is ok, he hasn't written me off and he knows what he's doing and he's getting me to the right people.  And I can add "infectious disease specialist/toxicologist" to the list of doctors I've seen.


     The ophthamologist was a fun visit.  She probably knows a lot about eyes, and my eyes, it seems are healthy.  I'm still angry, pissed, at her in general, for her lack of respect towards me, and her attitude in general.  Cha-ching.  More money towards the doctor mill.  I can though, say that my eyes, perhaps not my VISION, are in general good health.


     The neurologist...all in all was painless.  A blood draw which is by now standard operating procedure, and another test that was....an x-ray of something?  Was that it?  Wow.  I can't remember.  The procedure, whatever it was, was at the same location as the blood test and I did them at the same time.  CT scan?  I don't think so.  I did lay on a table.  Ah well.  It will come to me, or the EOB or bill will!


     A visit to Seth to fill him in on what's going on and discuss meds.  His visits are, 9 times out of 10, quick and easy.  I think I also entertain him, or at least keep him interested medically.  That visit resulted in going off most of the meds I was on.   Yay!  To a point....I was taking them for a reason.


     Spinal tap #1 - the failure.  I want to see the chart and why they couldn't complete it.  Someone, Seth or Dr. Liptan, said something about I couldn't bend the right way?  But they never asked me to bend, even when I asked about changing position.  Anyway, that turned into the 5 day headache from hell which turned into the ER.  Which was ... interesting.  ER doctors DO show expression.  I can't say it was a fun experience or that I want to do it again, but the people there made it an OK experience.  I felt like they actually cared what was going on, and they forgave the fact that I didn't have two active brain cells to rub together.  And their individual little patient cubicles really are hermetically sealed, which was great.  Once they got that shot of wonder into me, I was able to relax without the noise and kafluffle from outside the room bothering me.  Except for that alarm that kept going off.  *L*  I thought more than once that it was from another patient, and that someone, a doctor or nurse, really needed to get in there and turn it off.  It had to be important if it was that loud...I could hear it through the hermetically sealed door!  Nope...it was my alarm; my oxygen stats had dropped too low because my breathing was too shallow from whatever they'd given me.  Heheheh...yeah.  I think that happened.... three or four times?  They had to have been glad when it wore off enough tat they could send me home.


     Then spinal tap #2.  It worked!  Yay!  They gave me some kind of IV sedation, I have no clue what it was.  It put me out enough that I don't remember most of it, probably only about 2%.  I remember the infamous, "This will sting a bit.", meaning it will sting like a mo-fo.  I remember them putting the first needle in, but not it hurting..I think I actually went into the great world of sedation between when they injected the needle and when the pain sensation hit my brain.  Perfect timing.  I do remember them saying it was going to bump as I got wheeled in and out of the CT machine, maybe three times?  Someone said that they got enough fluid as I was going back onto the gurney from the table..and I think I heard something about the fluid being clear.  This may have been wishful drug-induced hearing though, as I'm fairly certain that the people/doctors who do the procedures don't give any indication, good or bad, normal or abnormal, about any findings.


     Yesterday was another visit with Seth.  Two weeks off the meds...I've noticed it a bit but not too badly.  I think I've been too busy sleeping off the spinal taps, getting over the spinal headache/migraine/ER visit and surviving work to be able to pay attention.  The concern is the migraines, and he knows my concerns about those.  But...I'm going to taper off the topamax.  Yes, it's scary but I understand why.


     Today was Dr. Liptan.  I went through all of what I just typed out, and she acknowledged that it's been a really rough, busy month.  It has.  I got through it, no HUGE breakdowns.  I did have to cancel my ENT appointment, and I NEED to reschedule it, but only because I was in the ER that day.  It matters that someone acknowledged it, that I survived the month.  Yes, it matters because she's gone through some of this so she gets it, but it just matters.  I've got people online who have stuff going on, and I can put some posts out there.  I can talk to Linda, and a little bit to a couple people at work.  It's really nice to have that little pat on the head... kind of the gold star on the forehead for surviving the month with my sanity intact.


     Now I get to go to bed.  Tomorrow's goal....be on work on time, call and reschedule the ENT appointment, cancel the follow up eye appointment at OHSU, get a new planner/calendar (mine has disappeared/been stolen)....


     **YAWN**

     I don't think that I'm as tough as people think that I am.


     I don't know if I can have another procedure like this, and do this all over again.


     If this time there wasn't enough to work with, not enough to really even measure, and they doubted I'd get a headache, what's going to happen next time?  


     I suppose I'd better set up for the weekend in bed and hope for the best, and only get up if I have to use the bathroom.  This is when I wish I had the TV sitcom family, where the mom lived down the street or the sister right around the corner, and someone would sleep on the couch or stop by and check in.  Or that I had a friend close by that I could call who'd run right over if I needed them to.  Just run in, make a sandwich and bring it in with a glass of juice, check on the cats for me and disappear again.  


     Ah well.  Next REAL hurdle, even before I get myself through the procedure next week....getting a ride.  I'm hoping for some sedation and they said I'll need a ride (which they said for yesterday).  And I won't want to be driving home.  *sigh*

     I haven't been this frustrated and angered by the medical profession in months.  The doctor I saw today had, I think, written me off before she stepped into the room.  The words I said were discounted and my symptoms ignored.  


      She made a statement and made a reference to a condition that I don't have.  I corrected her - yes, it was a correction, I don't have Orthostatic Hypotension, I have Neurally Mediated Hypotension - she literally rolled her eyes and smirked as she responded to me.  Her  response was that she knew the difference between the two.  Part of me doesn't care if she does or not, that condition isn't in her specialty and I've had several doctors ask me about the condition because they're not too proud to admit that they don't know everything and they're willing to learn.  Part of me cares because she was using that condition to discount the symptoms that she was supposed to be seeing me about.  What really bothered me was her attitude.  The eye roll I'm sure she thought was her "inside voice", as well as the smirk.  Those things do escape sometimes, and I saw them.  They were giveaways to the attitude that she had before she came into the room.


     Her diagnosis was that the symptoms I have are.....nothing medical, and not caused by anything medical.  I've already had a neurologist see physical changes that she said weren't there.  So I'm left questioning how valid her entire exam was.  99% of me wants her diagnosis to be correct because that would mean that there's nothing wrong with me, well nothing physically wrong anyway!  Which would mean I've got another problem entirely..... The other 1% wants her diagnosis to be correct but is afraid that it isn't, because my symptoms DO exist, and I don't think they're just in my head.  I trust the neurologist who saw the physical changes.  So when I get home tomorrow, from the next test that's lined up, I'm going to start looking around for a second opinion.  Not with her colleagues though.


     My other wonder is....if I had not put on my "current medical condition" list that I have Fibro....would she have taken me seriously?  I may start leaving that off.

Ponderings

     I don't think I'm handling this as gracefully as I should (could? is there a should? hmmmm) be.  I don't want to be whinging when I'm hurting, and I'm not walking around, waila-waila-waila, I know I'm not doing that.  I have a flaw, a lack of the essential graces.  If people ask me how I'm doing, and it's a bad day, or they catch me off guard, I tell them the truth, or an altered form of the truth.


     No, I'm not walking around saying, "Oh, my hands and feet are ice cold and my toes and fingernails are purple.  When I look at my computer keyboard I can see a circle that's clear, everything around it has a fine mist film covering it.  To see things clearly I have to move my head around.  But my eye doctor said that my peripheral vision is fine, and he doesn't see any signs of pressure on my optic nerves.  Oh, my back and collar bones are killing me......"  You get the picture.  I'm not doing that.  But it's really hard to say, "Oh, I'm good!"  **insert false cheery smile here**.  So I blurt out, "Hanging in there."  or something like that, most likely with no smile at all.  Since this happens with people I know (the other people are too busy frowning at the floor and muttering as they scurry down the hall), they then lose the smile and look serious and feel obligated to ask questions that they really didn't want to ask, that I don't really want to answer.  Why can't I just smile and nod?  It isn't that they don't care...but they don't want to hear.  It's just a social norm.  And I have that blasted Luna Lovegood trait of stating the truth...most times the unfortunate truth.  It's lovable in a fictional character.  Not so much in a real-life person, who has lost their filter.


     I found out that it's incredibly painful to carry a tray across a room.  I went to a buffet-style soup & salad restaurant with a friend the other day and slid my tray along the shelf by the salad selections and filled it up, and stopped and the register to pay.  Then I went to walk to the soup and potato bar, and almost dropped the tray.  My lower back hurt so bad, and started cramping in what felt like a dozen places but was probably just one big spasm.  I didn't really have any options on what to do, so I scurried over and put it down on the tray by the soups.  I got the rest of my food, took a deep breath and picked up the tray again, hoping (silly me) that it wouldn't hurt.  I was wrong.


     Now the question I have is, have I gotten really out of shape and lost muscle tone in my lower back or is this a part of my not-so-new anymore body?  This week has been a painful body week.  A really painful week, like I'd rather be in bed with Leonard, and the kitties by my side, while I watch TV kind of painful week.  Was it just because of that?  I don't know.  I'm doing the same things I used to do.  I haven't had anyone help with any of the housework so I'm still the one that's doing it.  Really....sometimes when I think about it I want to cry, or I get irrationally angry and then some days I have no emotion at all.


     My place is getting messy again in little ways.  It needs to be dusted, everywhere.  I have odd bits that need to be put away.  My fridge NEEDS to be cleaned out and the cabinet with my Tupperware needs to be organized (not related *L*).  And there's little things.  I need to wash sheets, and I have a TON of blankets that need to be washed.  I have someone at work that needs them - I can't give him dirty blankets.  Right now I have a sink full of dishes to do.  I already did one when I got home...there were a lot that I hadn't done.


     I was thinking about biting the bullet and putting my pride away, and asking some friends about having a work party, one day...heck, one afternoon!, and getting this place whipped into place.  Then I realized I don't have anywhere to ask.  Part of me wants to cry when I realize that.  I don't feel sorry for myself, it's not a pity-party cry.  It's a frustration because if I DID have people to help, it might get DONE and since I don't have the people, it's most likely going to stay the way it is.  I'll do what I can on days that I get an energy rush so it won't get worse but with reality, it's not going to get much better.


     There isn't a lot of happy in this one.  Not even sarcasm....  Like I said, I'm not in a pity-party mood.  I'm just tired.

     And I'm back.  One of my doctors' recommended a support group for me and I've been getting support from them.  Hence the name, support group.  They meet once a month and have a secret Facebook page.  I've posted there a few times.  There are two main moderators and one quasi-moderator.  Good people.  They all have home support though, people who live with them to help out, that they can talk to about things.  Everyone has a unique set of medical conditions - we all share the fibro and most have chronic fatigue.  No one has the neurally mediate hypotension though.  Not one.  


     I asked the doctor who specializes in fibro about it, if it's common in people with fibro.  She said that it's more common in people who have fibro than in people who don't have it.  Apparently the constant pain causes changes in the central nervous system so people with fibro are more susceptible to a lot of different conditions.  Yay.  


     My regular doctor has been researching it since I called him Obi-wan back in the fall.  There's not a lot out there, even in the medical world.  A lot of the Rx meds mix with the other things I'm taking or are pretty nasty.  I've got one pair of special stockings (surprisingly comfy but way expensive); I'm getting more when I can afford them.  I get to drink a glass of salt water once a day, it helps keep the veins open which helps keep the blood pressure raised.  I'm on extended release sudafed twice a day and phentermine, they also raise blood pressure.  I SHOULD be flying around bouncing off the wall.  And I should be seeing a difference.......


     My toenails are light purple when I get up in the morning and the arch of my feet are purple.  I'm constantly cold, always and my hands are usually cold.  I have to wear gloves outside, and when I take them off most of the time my hands are still freezing to the touch and my fingernails are purple too.  I'm still dizzy most of the time, and have had some serious "episodes", scary ones.  It's not getting better.


     I'm still twitching up a storm too, and have stuff cramping, the big cramps like Charlie horses.  All the stuff that's been kind of ignored.


     I got home Friday night and faced my entire place that needs to be cleaned.  There was no way I could do anything on Friday night.  Not procrastinating.....I didn't have the energy to make dinner so I had Ritz crackers and an apple.  The fatigue is all-encompassing and unless you've had it, it can't be understood or believed.  Honestly, when I'm not in the middle of it I kind of forget how it is.  


    Saturday, I got up at noon.  The shower needed to be cleaned.  I had been at the store on Friday night, and was looking at shower cleaners.  They are so flipping expensive.  I had come across some Clorox shower cleaner and when I looked at it I thought, "I have a bottle of Clorox cleaner at home.  I remember it...it doesn't spray right, the nozzle is messed up.  I can just get an empty spray bottle and put it in there."  So I got an empty spray bottle, problem solved!     After I got up on Saturday I thought I'd tackle the shower before the energy wore out.  I poured some cleaner from the Clorox from the bottled to the empty spray bottle.  I didn't read the directions because I know how to use it.  I went into the bathroom and opened up the shower door and started spritzing away.  The cleaner was pretty goopy and it was blue, which I didn't remember but quite honestly, it's been awhile since I'd used that cleaner.  Last time I cleaned the shower I just used the Comet powder.  The spray bottle I had gotten wasn't a full-sized one so it ran out before I finished spraying the shower.  I went back to fill it up again, and after I filled it up I thought I'd close up the Clorox bottle.  I went to put the cap back on and realized it wasn't a spray cap.  And the bottle wasn't a spray bottle.  It had an odd angle to it, and the cap screwed on in a different way.....it was TOILET CLEANER.  *sigh*


     I can confirm.....Clorox toilet cleaner does a great job on showers.


     I have very little brain left when I'm tired.  That was pretty much it for the cleaning yesterday.  Today I did clothes laundry and dishes, and I'm exhausted from it.  I need to do so much more.


     I've had my first person pull back from me since I've been sick, someone who I thought was a good friend.  I hadn't seen them in quite awhile.  When I saw them my body was doing pretty danged well.  The pain level was pretty high, but I'm really good at ignoring that, or hiding that it's there.  I was having good walking days - even on my bad days I can walk, and on my good days I can go for pretty long distances, and most stairs or hills are ok.  But I had no short term memory, and was pretty flighty.  When that happens, it really bothers me and I think it probably IS annoying to other people.  I'd hoped that my friends would understand that it's not something I do on purpose though, and the same with my body.  You're right....I don't "look sick", and some days I CAN do things.  Those days are few and far between though.  Most days I live on the couch.  Anyway......I guess the mix of my mind/personality being fucked up and my body having some good days was too much.  All I can do is hope they come back.


     It's now 8:30 and I haven't eaten dinner.  I should do that......