Falling

2012 Not Starting Well

I haven't been posting - too sick or too hurt or too stressed or working too many hours that I shouldn't.  Members of my extended family have been ill, or have found out bad health news, or are just stressed too.  Hoping that their conditions will work out for the best, if mine worsens so be it.

I went to the A-Team (my headache specialist and the headache clinic) this month and they were as kind as always and had some more options for me to try. Every time I go in, my doctor takes the time to review my case and research to see if any new studies have been published before my appointment.  You would think all doctors do this, but in my recent experience I have found it a rarity, so I am pleased that Dr. Hannibal Smith and his team do this consistently.  He also wrote a letter for me to have with me when I do have to go to emergency rooms that gives some basic guidelines to the ER docs on how to treat my hemicrania continua during an extreme pain flair.  He also gave me some literature on HC to go with the letter.  I am hoping this will help both me and the ER docs.  There are so few hemicrania continua patients that the ER docs and nurses treat it as a migraine because that is the headache condition they see most often.

I fell really really hard last Friday down some stairs while I was mopping the floor.  Missed work, and my sister was kind enough to take me to the ER to be checked out.  My lower lip and chin are still numb from the fall - how I hit this I don't know but I broke several of my front teeth and knocked part of a filling and crumbled the side of a tooth in the back.  The docs thought I might have a mild concussion also - I threw up several times during the night while I waited to see if I should go to the ER.  I knocked ribs out of place and was able to crank those puppies back where they should be while I was still numb from hitting the floor.  I have a problem with my ribs going out dating back about 20 years to a fall on the ice.  I think once you injure yourself bad enough the old injury keeps popping up when you try new acrobatic tricks when falling.  I must be made of rubber and bounced pretty well since no bones were broken.

The pain from the fall has been really bad.  I don't seem to be bruised badly - there are a couple of spots that show bruises - but the pain seems to be coming from the pelvic region and my right hip and leg.  My incontinence issues have gotten worse yet again, perhaps from bruising the nerves?  I am going to have to start using protection at night if it doesn't clear up soon, as it is happening in my sleep since my fall.  My teeth hurt but I have a dentist appointment Friday to see what is going on there.  Maybe my major medical will cover part of the repairs - that would be a big WooHoo!!!

I see my PCP this morning to see what if anything can be done with the increased pain and incontinence.  Maybe it will calm down after a week or so.  I seem to only have the sensation of pain, and am not aware that I am having incontinent episodes.  I will just have to move forward and hope that this latest set back goes away after my body gets over the shock of the flying leap and the splatted landing.  Note to self - do not fall with a three gallon bucket full of dirty mop water again!!!  Not only did it through me off balance I had to lay there in that mess and then clean it up and finish mopping.  My feet are so numb I am not sure what made me fall - I suspect mop water sloshed out and I stepped in it.

I plan to go into work today after going to the PCP.   Not sure how I will be doing, but I need to make the effort, because it is not work's fault I am a clumsy oaf!  I also have an appointment Thursday with my urologist to see if I need to continue the intermittent catheterization.  I had a very bad UTI since starting the self-cathing but  this could have been from fecal incontinence or not being careful enough with the catheters.  Makes me cringe to think about it.

I am somewhat drugged - the pain has been horrid in my back and in my abdomen.  For some reason my liver and kidney hurts on the right side and my spleen on the left are terribly sore.  Just what I need, another part/piece deciding it doesn't like me and leading a revolt of the innards!!!  Maybe you can bruise your insides as well as the outside - maybe that's why the ER docs gave me literature on deep contusions??

I hope this post makes sense, as my mind hurts.  I'm going to have to retire from the circus and stop the acrobatic stunts while mopping.  This is the second time I have fallen at the same spot on the same stairs while mopping.  Maybe the root cause is mopping the floor.  Sounds good - I can quit mopping and won't every fall again!  When I win the lottery I can hire maid service to come in and mop and fall for me.  sigh.

IV Practice Pincushion

No Fluids For Me

Have been feeling ill all week.  Just thought it might be the new medication (cyclosporine) or quitting an old medication (plaquenil) or maybe fatigue (because I have been working some longer hours).  Started being nauseous on Wednesday, very nauseous on Thursday (to the point of quitting eating), and thowing up at work Friday and leaving early.  I tried to make it out of town but got sick again a couple of times, and decided I'd better go to urgent care.


I was able to be seen at urgent care right away, and they decided I truly am dehydrated, with orthostatic hypotension and elevated heart rate.  I told them I think I have a UTI but I can't tell because the radiation therapy messed up my nerves so the pain shows up in the wrong places or doesn't show up at all.  I also said it could be pancreatitis but it didn't feel painful enough.  The doctor ordered an IV and zofran in the IV for hydration and nausea control and some blood tests.  Then the circus started.

I am not easy anymore to "stick" for blood or IV's - and I am worse when I am dehydrated.  I know I need IV hydration BUT it is an ordeal to get a vein just to take blood for a blood test, and when they try to thread an IV it is impossible! 

The first nurse tried my right hand - I told her go for it.  She failed after partially threading an IV and blowing the vein (she was a beginner at putting in IV's so incorrectly blamed herself) and called in a second nurse.  That nurse looked over my arms.  I tell them the last time they used a pediatric IV set to start an IV.  I am ignored.  The nurse pokes my left arm and digs, no go on that vein.  Tries another vein on the left arm - gets blood enough for the blood tests (barely) and then tries to thread an IV.  Blown vein again.  Sigh.  Tries a third vein on the right arm this time, it disappears as she approaches it with a needle.  A fourth try in my right wrist that is extremely ouchy but dry hole.  Calls the parenteral nurse with the ultrasound machine.  I tell them - ultrasound techs couldn't do it last time, it was a pediatric IV set that did the trick. 

A third nurse who comes in and looks at my arms decides to get one of the pediatric nurses in to see if she can get an IV started because I am a small person with small veins.  I didn't have to tell her about the pediatric IV set.  The fourth pediatric nurse comes in, looks at my arms, said she probably could get a pediatric IV set started in my left arm BUT the parenteral nurse appears with her ultrasound machine and long long needles so the pediatric nurse does a fade while the fifth nurse tries to get an IV started. 

The fifth nurse tries three times on my left arm and twice on my right arm to get a vein to start an IV- some very deep.  As soon as she would get close to a vein it would disappear.  She got one partially started and tried to "float" it in and blew that vein.  Very interesting - she showed me the difference between veins and arteries on the ultrasound.  Very painful - at this point it is 10 unsuccessfull tries to get an IV in and over an hour of being messed with.  I told the ultrasound nurse I could have had antinausea medication and sucked down 3 liters of water by then, even if I barfed some of it back up!   She gets the hint and goes off to tell the doctor they can't get an IV started. 

I was shaking and my teeth were chattering - I think it was just too much digging around for me.  I can handle about 7 sticks and after that I get really shakey.  It is worse when I am dehydrated to begin with. Big Sigh.

The doctor comes in and says well you won't be able to get any IV fluids today even though you are dehydrated, unless I wanted them to go for the neck veins which he could order. Nope I said - had that tried before as bad as the other veins.  THEN he says - next time you are dehydrated go to the ER don't come to urgent care - they are better equipped to handle someone like you.  He said I appeared to have a UTI and he would prescribe Zofran and an antibiotic.  Boy they were really glad to see me out after that!

I now feel like I flunked Urgent Care.  Kicked out of class for being unruly. I'm in the "somebody like you" remedial course.  Poor nurses all felt bad because of my bad veins.  I felt bad because they had to try to poke my bad veins.  Not sure why my veins are bad and getting worse.  What is more, I started hiving in the arms they kept constricting with tourniquets and poking, and then my face started breaking out in long hives. My face is still swollen and I still have hives on my cheeks, but at least the Zofran has enabled me to keep liquids down and take my antibiotics.  I am more Rene Zellweger tonight than Angelie Jolie because I have puffy cheeks instead of puffy lips.

I am some better today (after a day of antibiotics) but the nausea is still pretty bad.  The Headache was not so good yesterday or today, but I think the dehydration is part of the problem.  Hoping tomorrow will be better!

Saw the A-team this week for a three month checkup on The Headache.  No new recommendations (yeah!) but Dr. Hannibal Smith suggested I see Dr. Jock Biodude again for further biofeedback training.  Told to practice my biofeedback on planes, because I reported issues flying.  I am not a nervous flyer - I spend most of my flight time sleeping.  I think the problem has more to do with carting luggage, getting through security (have to have a manual pat down because of the stimulator), and hurrying to catch a flight, and perhaps a pressurized cabin than any anxiety I might have.  I am sure Dr. Jock Biodude would say otherwise - I must have a deep seated desire to be ill and puke in a stinky airplane bathroom and biofeedback will stop it.

I guess Dr. Jock Biodude needs to make a living somehow but I am not sure if I will make an appointment with him or not.  I missed the last one because I forgot when traveling for work.  I think it was a subconscious desire not to have to sit and hear sports analogies for an hour.  I will have to check my insurance policy - I am not sure if it covers biofeedback, so its a convenient excuse for avoiding further sports talk annoyance.  Three strikes - yyyyooooouu're OUT!

The Head Doth Hurt

Me Without My Stimulator

A total unretouched unedited picture of me today.  The Headache rules. No electricity now for 24 hours.  My bosses, as always, were so nice when I called in sick today.  One even volunteered to drive me where ever I needed to go to pickup the new stimulator controller. 

Almost made me cry - well actually it did - but I'm very low at the moment.  I know its only temporary, but somehow it is like a flashback to a nightmare which was my two years prior to getting the stimulator installed.  It doesn't take much right now to tip me over the edge of tolerance.

Tonight I look like Hell.  In addition to the swelling of my left eye due to The Headache, the dilaudid I took is making The Hives more active and my entire face is swelling.  The indent around my right eye is where my face is swollen and touching my glasses.  Sorta like Mr. Peanut and his monicle!  And he carries a cane too - so maybe I'm am slowly metamorphosising [is that even a real word??] into Ms. Peanut!  Ewww - now I'm thinking Kafka and the book Metmorphosis!  Head - stop it!

The A-Team had no suggestions for pain, other than just keep medicating with dilaudid.  I'm leery to take more than one pill a day because I rebound so bad from it, but they said to take it every so many hours.  I'm thinking maybe tomorrow I will try and get an IV of solumedrol at the emergency room.  Depends on how bad it gets, but I don't think the dilaudid is going to cut it.  It reduces the pain a little bit and keeps it from going past my tolerance levels but with the puffiness going on even with antihistimines I am afraid to take a lot of it. 

My stimulator controller should be in by Fed Ex Monday, and the A-Team had no problem with me going there to get adjusted.   Yeah A-Team!  Dr. Hannibal Smith had actually done some research for St. Jude, so it was a happy coincidence for me. 

Monday can't come quick enough!  It's going to be a bad night tonight, and a very bad weekend too.  I'm definitely in Woe is Me land.  Note to self:  Suck it up, you can handle it!  Tomorrow is another day, and there is always Tara.

System Down

Missing my Electricity Fix

My stimulator controller is officially broken.  I can have the stimulator set at HIGH, which after a while causes pain from "over stimulation",or I can turn it off.  It is now off.  The Headache pain has returned in all its glory without the stimulator to fool my brain.  I'm trying to go without any medication tonight so I can go into work tomorrow.  Not sure if this will work as I'm not certain I can bear with the pain very well.

I missed work today.  I have been up and then back to drugged slumber most of the day.  I didn't even catch on to the time until a friend called and I happened to hear the phone ring.  It was almost five o'clock - where did the time go?  Strong medication is not always my friend.

My new stimulator controller won't be in Springfield until MONDAY.  That means it will be 4 days until I can get my headache back in submission.  Luckily the A-Team and Dr. Hannibal Smith are on the short list of people that St. Jude works with so the controller is going to be Fed-ex'd to them. 

I may call Dr. Smith and see if anyone there has a suggested strategy to get me through the next few days without a stimulator.  I hate to be just zonked out of my mind for four days - but if the alternative is unbearable pain, I'm going to zonk out!  I'm using antihistimines tonight to see if the pain can be controlled with out the heavy hitters, but it's like trying to put out a forest fire with a water pistol - not too effective.

Hoping everyone else has a pain free Friday and a good weekend!

Biofeedback Brain And Dr. Jock Biodude

Trying but Not Too Hopeful

Two years ago I went through two months of 3 times a week biofeedback training.  I got really good at relaxing muscles, controlling breathing, learning to use visualization to increase control over autonomic functions.  However for The Headache biofeedback really didn't work too well.  Pain levels went too high too fast - zero to 100 in the space of a few minutes at times - and I couldn't go to my happy place when I was too overwhelmed.  It did help some with keeping my breathing calm and my anxiety levels down so it was not a totally wasted effort.  This was totally "monitored" biofeedback where I was hooked up to a computer during my sessions.  I still use it when I feel overwhelmed physically.

The A-Team has psychologists on staff, and they seem to want everyone to practice biofeedback.  I had my first session last Friday, and it didn't go so well.  Number one, the office manager had spent a half hour of my time demonstrating the headicing machine which I told her would not work for me (too noisy, too big, and it seemed to be on the leaky side although it cooled and heated the recirculating water really well plus it had to be strapped to my head which bothers the supraorbital nerve pain I have), then some kind of migraine cap.  I DON'T HAVE MIGRAINES ANYMORE  I wanted to shout...I tried to explain that when I ice my head I use four (yes 4!) ice caps with ice and water in them to cover the area needed.  She did suggest I create some ice caps by sewing some covers and filling them with unpopped popcorn and keeping them in the freezer which was a useful and thoughtful suggestion (but I think she could tell I was a hard sell on the other equipment). 

After all the sales pitches I met the biofeedback dude [Dr. Jock Biodude]: he was very nice but he used sports analogies.  One of my pet peeves is when people (mostly guys) cannot discuss anything unless they use sports analogies (going for the three pointer, you have to take the first step to win a marathon, touchdown! etc. etc. etc. ad nauseum) so unbeknownst to him this prejudice made it very difficult to hear what he was saying because the sports talk interferred with my concentration.  I was in a bit of peevish mood by then.  I'm sure he could tell by my body language when he started talking about how we have convinced our bodies we are sick and that biofeedback will stop the cycle that I was not into his brand of hoo hah.

I'm not a fan of magical thinking, whether it is "I will be good and God will be good to me" or "The proper mind set will cure you" or "taking this special supplement will fix everything".  I'm a cynic by nature, an optimist by choice, and practical to the Nth degree.  After the session of biofeedback with tinkly new age music and lowered lights, my temperature dropped instead of raising.  You are expected to have a little thermometer taped to your finger to measure your temperature. Dr. Biodude said it was a sign I was not in tune with my feelings and living too much "in my head".  I'm sure he should have been able to easily see me raise my eyebrows each time a tinny sports term popped into the biofeedback reading which made it very hard not to live too much "in my head", but the drop in temperature probably came from his super cold air conditioned office where he sat with an undershirt, shirt, and tie on and I had on a thin summer weight blouse.

I told him that I am like a rabbit in a steel trap.  I will gnaw my foot off to escape the trap not idly sit by and accept the trap, feel the trap, and embrace the trap and then imagine the trap has disappeared while the hunter comes to dispatch my rabbity hide.  It's not in my nature BUT I will do the biofeedback 2x a day for the next three weeks.  I will try to embrace the moment and not live too much in my head: at least the recording he gave me doesn't have any sports terms on it so far.  I will attempt to be more open minded about it.  The other form of biofeedback training I had was much more guided and specific to me, so maybe I just prefer that method of teaching.  Don't know, but I do know I don't have a lot of patience for nonsense so I am hoping I will see some positive results.

I have been more heavily drugging myself with clonazepam to get a full nights sleep per the A-Team's plan. I am supposed to titrate up every other night until I get past the night time pain and insomnia issues. There will be a limit there I will not go past either.  I can take quite a bit of pain if the alternative is too many drugs for very little benefit.

Botox injections were mentioned, but after asking some people in my urticaria group (hives) there were no positive comments about botox for people with chronic hives like myself.  Some had bad reactions, and no one had a positive experience.  I'm going to save the Botox for  some desparate future time.  The A-Team is just going to have to get by with regular office visits, no extra sales of special equipment, and no big lots of biofeedback training fees.  They seem to be used to persons that are at the melt down point there, which is very sad for the regular new patient who has not been receiving adequate care elsewhere, but it takes quite a bit to get me to that point.  As long as I have a plan, I'm pretty well good to go.  If they keep up the sports talk, I may get to a different type of melt down point and grab someone's tongue and pull out their belly by the roots.  But maybe that's the menopause talking, eh??

Beanie and Gracie

Babysitting Bostons

I babysat my sister's Boston Terrier puppy Gracie (who is a year old this month) while she and her husband attended their grandchild's wedding.  My brother-in-law suffered a very very bad stroke a few years ago, and they seldom go out anymore, as he is hemiplegic and movement is painful on that side of his body.  This was quite an event for them to be away from home so many hours. It was a beautiful wedding, and their granddaughter was very happy they were able to attend. I was glad to babysit Gracie, she's a cutie pie pupperoni and tries to charm her way into many goodies.  She is much younger than my brother's Boston Beanie, but they play together like a couple of puppies.

There isn't much to babysitting Bostons as they tend to amuse themselves when in groups.  Most of the effort is just to keep them from running into furniture or over each other as they run and play.  Beanie was most kind as the older wiser dog, and let Gracie win most of the tug of wars.  He also graciously gave her a delicious Dingo Dog Bone to eat, which she offered to me to have a bite after it was all yucky and slobbery.  My dachshund Augie is the Dingo Dog Bone addict, and now has Beanie and Gracie hooked also!  Every once in a while they would all get tired and come and lay by me and rest.  Cute pups!

I get to visit with the A-Team and Dr. Hannibal Smith on Tuesday unless it gets rescheduled again.  First time rescheduled I had to travel, second time Dr. Smith had a conflict.  This will just be my second visit to this headache clinic, hoping I can get some new travel strategies to help me through this fall.  I'm also going to visit one of my Dr. Dunce team for cancer followup.  Hoping I won't get angry or frustrated for yet another conversation about how radiation therapy is not the cause of my leg problems, my incontinence issues, my pelvic pain issues.  I have spent money I did not have trying to prove that the radiation therapy was NOT the cause and have come up dry.  I am through considering other possible causes because it just gets my hopes up and I just don't have the strength to be disappointed one more time.

Dr. Sassypants the physiatrist wasn't much help with the legs after a promising beginning but he has definitely ruled out mechanical or arthritic conditions.  Besides getting another nerve stimulator he recommended I study chronic pain and its effect on the brain/body connection but I have gone down the psychiatric mind over body route with The Headache, and have little desire to revisit for The Legs.  I understand the issues with chronic pain creating permanent pathways in the brain, signaling pain even when the original injury has healed. I have the ability to ignore rather high levels of pain (because I compare most pain to The Headache and that's a pretty high bar), but actual physical dysfunction such as weakness and numbness are more the problem for me. I do have to admit that I feel my endurance had increased due to the physicial therapy exercises I am practicing. I hope to continue with physical therapy this fall when I have a little more time, and perhaps get with their pelvic pain specialist.

Both Dr. Sassypants and my PCP talked with me about just quitting work, but I'm not ready to give up yet not only because I can't afford to quite working, but because my employer is really great about trying to work around my limitations with me!!  If I can contribute, I will continue.  If I feel I am not able to contribute anymore then I'm not sure what I'll do.  Sigh.

Looking forward to next week, and working with our new team member at work.  I haven't had a lot of energy today, but am hoping to work with my insomnia and finish some files for a client tonight.  Sometimes it doesn't pay to fight my inability to sleep and just go with the flow and do something productive when the brain allows!