Falling Leaves

Falling Mood

Having a melancholy day today.   Feeling sick, feeling down.  It's raining, cool wet rain. Leaves are turning colors and falling in a turning twisting cascades. It's my favorite time of year, but I'm not feeling it. I am feeling icky instead.

Very tired tonight, not sure why. I have been having my normal non-sleeping nights with The Headache, so I am at a normal rate of sleep deprivation.  My antibiotics are helping some of my abdominal pain but my puffiness is continuing unabated.  Maybe my puffination is taking energy from somewhere else and putting it towards poofy puffy cheeks and cankley chunky feets??  I feel like the giant Stay Puft marshmallow man from Ghostbusters.

I actually napped yesterday. I never ever nap.  Yet my tiredness yesterday was the same as it is today.  I just don't know what is causing this.  The Headache has been on medium high today, but not to the "must medicate" point.  Maybe this is what is wearing me down?  I am walking through quicksand with each step forward getting harder and harder to do.  I feel very very shakey and weak.   Bleh...  Blech... Blah...

Worked from home today because I had to take a relative to a physical therapy appointment.  Will do that again Wednesday.  May have to do this the rest of the month while we try to arrange rides. I'm glad my relative is getting some help with his physical issues, seems to have a great physical therapist.  Doing something with "primitive reflexes" whatever that is, but seems to already be helping him.  Said this problem is often misdiagnosed as fibromyalgia (one of many diagnosis my relative has had).

Trying to be ready to roll into work early tomorrow for a couple of meetings/conference calls.  Just feel like I don't have the umph to fight my way out of a wet paper bag tonight, but want to be bright, cheery for work.  I love my work, I love my bosses - today just has been a hard day for whatever reason. I want to shake that blah feeling off and be my usual perky loud self tomorrow.  I even let a client get under my skin in a bad way today - which has only happened a few times in the eight years I have worked at this job.   Maybe the moon signs are wrong.

I'm a true Debbie Downer tonight.  I know in the grand scheme of things one bad day is just a blip on the screen, but right now my sonar just can't see past this blipping bad day.    Tomorrow is another day....tomorrow will surely be better!!

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!

Dreamtime in Missouri

Productive Sleep

I have started dreaming again.  I had not realized I was not dreaming until I started again.  I am sure I stopped because I did not have enough thyroid hormone.  Dreaming is one way I know I am getting restful sleep (when I actually sleep).  With hypothyroidism you may sleep for hours, yet wake and not feel rested.  T4 replacement therapy fixes this somehow.  With The Headache and hypothyroidism, I get to sleep for a couple of hours, and not feel rested.  Sigh.

I remember how tired I was when I was first diagnosed with thyroid deficiency.  I knew the thyroid medication was working because I started dreaming again. It had been a long long time since I had had a dream I remembered.  I also woke up from sleep feeling refreshed, like I had been breathing buckets of cold fresh mountain air after thyroid hormone replacement.  Restful, wonderful sleep!  I love it!  I miss it!!!

The dream I had last night stuck with me.  I was driving in the mountains in the dark next to a river that was mirroring the mountain road - going up and down hills.  I could hear the rushing water in the darkness and saw the dark blue gleam of the moon off the current.  I parked my vehicle in a warm yellow cave where the river ended, and next I knew I was flying along a road that was surrounded by tall buildings and waterfalls.  So many waterfalls - everywhere I looked there were beautiful clear blue waterfalls.  Somehow I knew the river fed the city of waterfalls.  Like the river, the sound of the waterfalls filled the air, and the water hugged hills and valleys in a way that defied gravity.  Near one glass towering building a pyramid of waterfalls was topped by a hovering revolving orb of water.  The road kept going on and on and on and the waterfalls sparkled and fizzed and burbled with new structures and new waterfalls every so many blocks. As I flew from the darkness into sunlight sparkling off dancing waters I woke up happy and relaxed.  Ahhhhh.

I started taking cyclosporine today.  I am to stay at my initial low dose for a couple of weeks, but may have to increase the dosage.    Dr. Calm gave me a prescription for it last Thursday. My face has been swollen the last couple of days from mild angioedema, hoping this will fix my fat lippitis.  I used ice last week to bring the swelling down before going to work, but that then starts issues with my facial pain from The Headache.  Wish I could disconnect an illness and put it on a back burner or maybe cure one disease before I start working on the next one.

Head Shots

How I Cope With A Chronic Headache

My unrelenting excessive painful headache started in the fall of 2007.  I started this blog in January of 2009, after experiencing more than a year of an extreme headache on a daily/hourly basis.  Yes, that is one headache.  It started in 2007.  Not a series of smaller headaches.  Not one day without a headache.  Not one hour without a headache.  Even now with much better control of my pain I still have a headache.

The Headache is only on the left side of my head (thank Heaven!) and besides the pain I have a puffy left eye, runny nose on that side, almost non-stop nausea and the only medication in the world that actually is effective to control it pretty much put my pancreas out of commission.  My understanding is once in a great while this type of headache (hemicrania continua) will go into spontaneous remission but for most sufferers it is a life long problem.  If I live 30 more years, I can look forward to 30 years of constant headache. Sigh.

Once upon a time I was a fine arts major.  Life intervened and I was forced to make a living with something practical and I didn't really do much artistic work for years.   Now that the headache has woken some unfulfilled need in me, I have found artistic expression is a great outlet for me.   I think in the pyramid of Maslow's Hierarchy of Needs I am at the bottom after once almost being at the top, so hoping art work will assist in the climb back up.  The art work that takes up most of my time lately is digitally manipulating photographs.

Coping with The Headache and other myriad ailments is difficult.  For my own amusement I photoshop pictures of my ouchy head and post them as illustrations for the fractured meanderings of my prose.  I find a perverse pleasure in cutting and pasting and layering all kinds of things onto my head in order to illustrate what The Headache is.  It is my revenge on The Headache and a way for me to find a bit of humor in the grimness of it all.  I know its strange but it seems that the process of illustration frees up some part of me that would be very very angry and sad otherwise.

I've had Japanese ceremonial drummers pounding on my head, jackhammers drilling into my skull, devils glowing in the dim embers of my brain.  I've circled my head with sayings, light bulbs, lightening, electricity, animals, and at least one clown.  I've illustrated hot spikes poking into my brain, thought bubbles popping out of my head with strange thoughts, and sometimes simply the way I look when I am tired and hurting.  I have some happy pictures, sad pictures, wacky pictures, and ugly pictures.  They all make me laugh to some extent.  This disease is absurd and I am the type of person that either laughs or cries.  I'd much rather laugh!

Everyone reacts to life's crises in different ways.  The never ending stress of  my headache disorder has taken its toll emotionally and physically.  In photographing my noggin, uploading it to my PC, and putting my bonehead through illustrated torture I hope it helps my psyche in putting the kaputz on The Headache.  Hoping everyone has some sort of similar outlet, because it serves me as an excellent relief valve for high pressure stress and pain.

Montage of Head Shots 2009-2010

The Hives Return

Itchy Itchy Itchy

The hives returned yesterday. Actually they never really leave, but they become less bothersome. Yesterday they decided to hop into high gear. Bumps everwhere my clothing touched, bumps all over my back, bumps on my face, bumps on my arms, bumps on my chest. Bumpity bump bump they were popping out everywhere. Very uncomfortable. My eyes are very scratchy too.

Taking a large assortment of antihistimines hoping to make this better, but they aren't working. The itchiness is a little less, but truthfully just thinking about the hives writing this is creating itchy spots everywhere. It feels like they are in my ears, in my nose, and my throat.

Guess I will have to call the immunologist Dr. Calm Monday. I have waited more than a week to see if the higher dose of thyroid medication would help. They were better for a few days, probably some carry over from the prednison, but have been getting worse each day. The more I itch the worse they get....

Having a hard time sitting still this evening. Antihistimines (especially the older ones like vistaril and benedryl) can cause you to move erratically. They certainly do that to me - its an uncontrollable urge to move.

Hoping everyone had a great weekend. Adios Amigos as the Cisco Kid would say! The Cisco Kid and Pancho were my favorite TV vaqueros growing up. I'll bet they never got hives even in the strong desert sun.