Sunday, October 31, 2010

Angioedema Hurts

Ouchy and Grouchy

I forget between bouts how much angioedema can hurt.  It is deep seering down to the bone type of pain, and at the same time burning through my skin kind of pain.  It hurts to move, it hurts to sit, it hurts to type, it hurts to walk.  This is going on day four of this bout.  Hoping the pain lessens.

I have not complained but I did go home early from the client's yesterday. My boss I think realized how sick I look and went in early today but I don't have to be there for a little while yet so I could sleep in!  Yeah!!  I try very hard not to complain because it was my own choice to come when I didn't feel very well.  The pain yesterday was overwhelming and today is a teensy bit less but very bad.  I could take pain medication (I have it with me) but I will be non-functional if I do.

Ocassionally I am at the "shaking won't stop" stage of pain - was there most of yesterday, but it is coming and going today.  My legs are starting to stop swelling and my hands feel normal.  I have mild facial swelling which is not noticiable (thank heaven for small favors!!).  My red nose is still red.  sigh.   I can get my feet into a normal pair of shoes today, not my fat foot traveling shoes I have had to wear for the last couple of days.  Hoping this episode of angioedema will be gone soon!

Gonna get my stuff together and get ready for work.  Happy Halloween everyone!!!

Saturday, October 30, 2010


Halloween In Michigan

Made it to Michigan.  The people here are sooooo nice!  I'm waiting between updates on the system to do my part and check data.  This will be a fairly long couple of days while my boss pulls in and converts data and I validate and test the data and then we balance to the client's old data.  I admire my boss because she does this time and time again, and has to write custom programs to pull data from a different system and make it make sense in our system.  The IT guys from the old system and the local IT dude (who is very very good) have been up working on this most of the night.  Now it is our turn!

I have two new epipens and some emergency prednisone, which I am to take at the first sign of more hives.  Dr. Calm told me to quit taking the higher dose of cyclosporine because my blood levels were too high.  I told him I didn't think it was quite doing the job and if I had a high blood level you would think it would have done better.  He is pretty sure that the severe stomach pain I had with this episode is just another part of systemic mastocytosis.  He said he might test me for hereditary angioedema  which the ER doc suggested, but my C4 levels were normal and they generally are high with that disease.

Dr. Calm also said we could test for "beef allergy" since basically the only food I had that day was a small hamburger (at a "safe" restaurant I had eaten at before) and I didn't even eat all of that.  He said if you have a beef allergy the allergic reaction might take a few hours to show up.   I don't eat a lot of beef (I have difficulty digesting protein because of The Belly) but it is something I eat consistently each week.  From an article I found ("The Baffling Bite of Beef Allergy" apparently I live in one of the few areas in the United States where a specific tick lives, and bites from that tick can trigger an immune response to beef.  Ewwww - tick bites!!  Ewww - ticks!  If this was the cause of my hiving problems I will be happy but grossed out.

I bought some food at the grocery store here to eat because I am going to have to be very careful about eating out.  I will faithfully take my epipens with me where ever I go.  I already can't eat seafood or fish, to the point that if I eat something that was cross contaminated with fish/shellfish protein I get very bad hives.  Pork is almost impossible to digest, and nuts don't digest at all.  Beef is the last protein I have to eat, and I am praying I am not allergic to it.

I am covered with red hives and I am so tired I can't hardly go.  I feel very sick, but I'm glad I was able to get to Michigan!  I at least have that much command over my body - a small triumph but a triumph none the less. I am sure my team could have converted without me here (I have no allusions of indespensability) but it would have been harder on them, PLUS the clients were expecting me to help with the billing and collections piece of the install.  They are such nice folks I didn't want to disappoint. I am just aggravated about my body not behaving at the last minute like that - not sure what I can do about it.  I am running out of things that actually work!  I have an appointment with Dr. Calm when I get back to Missouri, so maybe I can get some answers after more testing.

Will be working tomorrow on Halloween.  I didn't bring a pirate costume, though I wish I had because I like to say "Aargh me matey" but I do have a cute sparkley pumpkin shirt to wear.  I have great hopes I will be able to help get the client started entering visits in our system as the data I have been checking off and on while I type this has all been perfect.  My boss does a fantastic job with a really hard task!!

By the way, they said "hoot" a lot here, like "don't give a hoot",  which is almost as good as saying "Aargh me matey".   They said this area is known as the thumb of Michigan. The weather is clear but nippy.  It is beautiful here and the motel we are staying at is a "hoot" too!

Friday, October 29, 2010

Winny Big Face

Epipens to The Rescue!

Today has been one of those days you have nightmares about.  You know the ones, where you have to go somewhere, but somehow you never get there and everything that can happen does.

I changed to cyclosporine to try to get better control of my hives.  I not only have hives but I can have life threatening angioedema, anaphylactic shock, and allergic asthma.  I had gone over a year without any real anaphylactic reactions, but I guess the change over in meds is not doing the trick.  The odds caught up with me in the afternoon.

I was hurrying around today. I had to vote at the courthouse because I won't be here election day. I had to take my brother to physical therapy. I needed to finish up packing my extra large suitcase (for 16 days away from home). I had to pick up my mother's medication and my thyroid medication refill. I had to get a blood test done early in the morning for Dr. Calm, the immunologist. I had to go to a Wal-Mart pharmacy in another town to get a new prescription for the altered dose of cyclosporine.  I had to coordinate the new prescription with Dr. Calm's office because they needed to see the test results before prescribing.  Somewhere in the chaos I lost my buzzer controller for The Headache. I needed to get a haircut and buy travel shampoo.  I had some laundry to finish.  I needed to be at work for a couple of hours to get ready for the trip.

When I finally got home at 4:00, I wasn't feeling too well.  My sweet sister brother and Mom helped me look for the missing buzzer controller because by now The Headache was deciding it didn't like doing all that stuff (which was not complete - I didn't have the new prescription for cyclosporine, or have my hair cut yet, or have my baggage packed, my laundry finished, or travel shampoo bought.)  I finally found the black little holder in my car UNDER the driver's seat.  Not quite sure how it got there, but today anything was possible. 

By 4:20 I had put a load of laundry in the washing machine, and sat down to see if I would feel better, because I was feeling sick at my stomach.  Pain started coming over me in waves - right in the stomach.  The pain was bad as I have had with pancreatitis.  I thought it might be pancreatitis.  I was determined to tough it out with no pain killers because it would interfere with the rest of my day, and I didn't have the time to be sick.  My sister thought I should go to the emergency room, but I told her no I think I can do this - I'll see if I can wait this pain out. My sister went home - but told me to call her if I needed a ride to the ER!

The pain continued for the 20 minutes, excruticating cramping burning boring pain.  At 4:40 my face was tingling and so were my hands.  My lips starting feeling numb, and all of a sudden my nose closed shut.  I looked in a mirror and my face was bright red and it was starting to swell.   As I went back down the hallway to the living room I started to feel faint to the point I felt I was going to fall.  I knew what this was - my blood pressure had dropped which meant my body was redistributing fluids away from my brain.  Anaphylaxis is the cause of this - blood and fluid rush to the areas with angioedema - my face, my hands and my feet.

Things started progressing rapidly.  I call my sister hoping she had made it home.  She was, and said it would take her about 15 minutes to get to my house to take me to the ER.  It would take an ambulance 20 minutes or more to get to my house so her transportion was quicker. 

After I hung up my hands turned bright red, and started swelling.  The swelling started up both arms and was halfway to the elbow.  My face was bad - puffy and BIG: big nose, big cheeks, big ears, big lips.  My big lips actually looked blue.  I felt the angioedema hit my vocal chords and then the allergic asthma wheezing started.  The stomach pain was terrible.

The wheezing got worse, so I decided to get my epipens out to see what can be done.  The advice of my Kansas City immunologist was never double guess this situation, always use the epipen - this is what they are designed for.  I carry two because of the speed and severity of my anaphylactic reactions makes one epipen insufficient.  I stuck one into my right thigh as I wheezed and wheezed, waited 10 seconds, pulled the epipen out.  Whew!  That needle was long and that needle hurt!  I  waited to see if my wheezing would go away, or the redness would disappear.  No luck, I hit my leg with epipen #2.   The shaking which was mild after epipen 1 got really strong with epipen 2 added to the mix. 

If this didn't help, it was 911 time but I really wanted to avoid that.  In my neighborhood out in the country they miss your road, they go too far, especially since Google maps has my house about a mile further down the road which is an empty pasture.  Just getting them TO your house is almost impossible even when you tell the dispatcher that they can't rely on interactive driving directions.

The wheezing subsided so the epipens had done the trick. I was glad I didn't have the added anxiety of trying to flag down an ambulance as it whizzed by the house. As my vocal chords and lungs started to get better, I took 50 mg of benedryl to hopefully calm down my hives, as they had started to pop up and the redness was extending over my entire body.  Then shaking got worse as the epinephrine spread to my extremities: good news!  The stomach pain which had been unbrearable also lessened, which to me says it was part of the reaction.  (Dr. Calm said that abdominal pain is a sign of possible systemic mastocytosis but for me the jury is still out on that diagnosis.)

At 5:00 pm my sister swung in the driveway.  I gathered my ID's, my purse, and cell phone and hopped in.  I was very nauseous, and had taken a zofran to help with the nausea but she was very kind and drove very slowly the 15 miles to the hospital.  My shakiness made it very hard to get in her van, and to get out at the emergency room.  Even driving slowly and waiting for a train at a railray crossing, we got to the ER at 5:20.  I told the clerk that I was having an allergic reaction and had already used 2 epipens.  They got me right back into a room - my sister said I was a sight - the overall red color of my face had turned into red and white stripes with my eyes looking out of big white circles.  My lips had returned to almost normal and my nose was back to where it should be breathing wise.

I tell my story to the staff as they try to get an IV kit in my veins.  They get one in first try, but it blew.  They start a second one, and it's a bit painful and leaky but it was getting something in my veins.  The ER doc came in, actually knew about mast cell disorders and thought I might have heriditary angioedema - I didn't even know there was such a beast.  Everyone marveled at my redness and where the redness was subsiding the welts.  A little different presentation from the norm I was told.  I was very very very shakey by now, and it was around 6:15.  My medical history is difficult to tell at best of times, but when your teeth are chattering it is hard to communicate pancreatic billiary sphincterotomy to someone.

The doc ordered solu-medrol, zantac, and 25 mg benedryl with IV fluids.  After about another 15 minutes these seem to be putting the stop to the hives, although I started getting a big hive right below the IV site.  Hoping like heck I'm not getting sensitive to saline flushes!! Many of the other hives fade a bit, but don't go away.   The lab tech can't get a vein for some blood tests for amylase and lipase after two tries, so she just takes a large lancet device and cuts a gash in the end of my finger and drips that into a very small tube.  First time I've had that blood collection technique used!

My sister in the meantime rushes to Wal-Mart since I will be on fluids waiting for the lab tests to get back, and Wal-Mart pharmacy (the closest pharmacy that carries cyclosporine) closes at 7:00 pm, and I HAVE to get the new prescription or I will not have enough at that dosage for 15 days.  She gets there and the pharmacists says Dr. Calm's office had called the prescription in at 2:30, BUT Dr. Calm's office called back at about 5:00 (when I was enroute to the ER) to say after reviewing my blood tests, the increase would not be needed, and I am to call them first thing in the morning.  I can't get a refill of the other script because it is not time yet for that according to my health insurer.  Augh!!!!!

In the meantime back in the ER,  I'm glad to find out my amylase and lipase are both on the low side.  This is good news because a few weeks ago my lipase was on the high side and perhaps a touch over normal.  At 7:30 the IV is stopped and the iv lines removed, and I get to go home.  My discharge nurse also has chronic hives, with a more classic presentation of clearly defined lumps on her arms.

The ER doc wanted to give me medrol pills also, but I said since I have to call Dr. Calm in the morning anyway I'll see what he says.  The ER doc also says I need to watch the hives tonight since they may rebound from the medications.  I understood, because the second day of this type of reaction is often worse than the first day.  My hives have been popping up everywhere for the last hour or so. I fear I will be having a miserable day traveling.

I am a bit worried about traveling because I don't want to have this type of reaction on a plane!  It can be dangerous for me to eat out when these hit, and I will be 15 days with eating out my main food option.  I guess I just must like living dangerously - on the edge!  I am still working on packing and laundry. I never got my hair cut OR bought shampoo.  Maybe I can find some hair care product somewhere that makes my witch hair better at the airport.  I have a layover in Atlanta - maybe I can get my haircut at the airport?

Will see what tomorrow brings.  I am so disappointed that I ended up in ER one more time!  I am also disappointed that illness has once again tried to derail me from my appointed rounds.  I definitely want to make sure I have an epipen with me at all times on this trip. 

This is an awfully wordy blow by blow account, but I think I am still pumped by all that epinephrine!!!

Thursday, October 28, 2010

Witch Hair

Just in Time for Halloween

My hair is super fine, super dry, and lately super brittle.  Today I looked in the mirror and I was sporting a full head of grey witch hair.  No need for a fright wig, I had one right there growing naturally on my head.  No amount of conditioner, shampoo, hair products would make it behave today - so I hopped off to work on my broom to scare my coworkers!!! 

Ran across this parody of Christine O'Donnell from Saturday Night Live.  I hope I have enough newts so everyone will forget what my hair looked like today!!

Getting ready for my trip to Michigan.  Woo Hoo!!!

Monday, October 25, 2010

Winny Big Nose

My Giant Hive Revives

I have a giant hive on the end of my nose..or a giant something.  The plaquenil I took for chronic hives actually made is get smaller and even fade a bit so all that was left seemed to be a crop circle of freckles.  I could handle that.

Since going off the plaquenil and starting cyclosporine The Nose has started to puff up and get ouchy.  Not sure if this is due to going off the plaquenil or just because the cyclosporine doesn't have The Hives under control yet.  There is an animal disease called swine erysipelas that makes the pig's nose sore and turn up.  Maybe if the crop circle keeps growing I will end up with a cute upturned nose instead of the droopy schnozzle I have now.

I feel like Rudolph the Red Nosed Reindeer, but I am sure my nose is not as bright and puffy and shiney as I feel it is.  I am just self conscious about it because #1) it ITCHES #2) it's PUFFY and #3) my nose is big enough already without any help from the crop circle.

I increased the cyclosporine dramatically today per Dr. Calm.  Thursday morning I go get a cyclosporine "trough" blood test done.  First a pig nose, now I'm going in for a trough.  Doesn't bode well does it??  I guess it is just a spot check to see if my kidneys and internal organs are behaving themselves.  If the cankles get worse then I'll know the cyclosporine makes your nose glow and your ankles grow!!!

My leg and pelvic pain is with me this evening, but doing better.  The Belly is not happy but The Headache is just cruisin' along.  I'm debating not feeding The Belly to make it calm down, but I get pretty shakey anymore if I skip too many meals. 

Trying to get everything in gear so I can go and do my magic at the clients.  If my nose keeps up I'll be able to my magic in the dark by the light of my nose!!!  This may start to make sleep even more difficult than it is already - but maybe it can serve as one of those itty bitty book lites and I can read in bed easily.

I guess I'm like Rudolph, and belong on the island of misfits with my bulbous red nose.  But I have to say, with my dental phobia, I'm not sure if I would team up with a [gulp] dentist!!!

Pelvic Pain Blues

Why Did I Leave BLING Behind?

My day of fun yesterday has turned into a day of pain today.  I was stupid and went walking without my cane BLING.  I thought it wouldn't hurt to just amble around without BLING's assistance.  WRONG.

Have been suffering all day and part of last night from pelvic pain.  This is a pain I can't escape and I can't make better by sitting or standing or any position.  Trying very hard not to take any pain medication as I have to work tomorrow.  We are getting way too close to this installation for me to go down now.

Working from home today most of the day.  I had emailed my files to use for some data conversion fixes last Friday and pulled them in this morning.  Takes a bit of massaging of the data for me to "create" the records that need to be there.  Then I have to load the data and verify the data. I also tried to catch  up on documentation of "incidents" that are customer related.  It's been hard to do because sitting is not pleasant at the moment.

I am a bit concerned because when I unloaded the data in the table there were spaces after data in fields that should not have spaces, and my upload definitely did not have spaces.  That means either a user added the spaces which should not have been possible or the program itself is putting in the spaces or we converted spaces.  AUGH!  I see tedium ahead figuring out what happened when.

My funometer must have filled up more than I realized yesterday as I am feeling fairly cheerful today, even with the unbearable pelvic pain issues.  I guess my doctor wasn't kidding when he said I needed to use my cane all the time.  Duh on me.  I was sorta afraid I would be like a bull in a china closet with slinging BLING around bunches of antique dishes.  That sort of accident could be costly!

Going to bed soon.  Hoping my body will behave itself tonight.  Today was not a fun day at all.  Of course, since my pain resevoir for pelvic pain is running over, all other parts of the body have been filling up their pain tanks too. Tommorrow will be much better I am positive! 

Saturday, October 23, 2010

Moving to Little Pony Land

Thrift Shopping Fun Day

Working hard this weekend to get over my fatigue and my feelings of being overwhelmed.  Took some time today to go shopping in thrift stores and antique malls and just look around.  This takes a bit of energy but I needed to have some fun.  I am completely out of fun lately - my fun meter was on empty and my sense of humor had flown away.  My annoyance meter however was on HIGH so there was a lack of balance in my mood amd in my week.

I had fun today, but my funometer is barely registering probably because all the walking made The Headache complain.  Not sure exactly how to fill it up.  I'm too tired to contemplate much fun - it sucks up too much energy!  I'm sick and tired of being sick and tired, and now it's starting to take the toll on my joie de vivre.

Thank heavens I will be out of office working with a new client for a couple of weeks!!!   Maybe I can rebuild my brick wall of resistance before I get back.  I always have fun when I travel because I work with a good group of people and our new clients have been very enthused about their computer system changeover.  Nervous but enthused!  Maybe my funometer will get refilled.

Gladness, a niece I never got to see very much is getting married in December.  She has grown up to be a very level headed young lady, with a very kind heart for all animals, a great sister, a good daughter, and a wonderful aunt.  I know she will make a wonderful wife too!

Sadness, found out from a RN friend on Facebook that people with chronic pancreatitis shouldn't take lasix, my anti-cankle pill.  The Belly is hurting just from taking it the other day, so I'm glad I know why.  I am feeling sick enough without having more complications before I travel to Michigan Friday.  I already have to carry a case of pills, I think I wouldn't be able to take it as a carry on for the plane ride if I ended up with more. :(

I desparately need to get back in my happy place. Thinking puppies and kitties and rainbows and flying horses and pink sparkly castles- My Little Pony Land!!!

Thursday, October 21, 2010

Headache Business

Can I return my head please?  This one is rotten...

The Headache decided that it needed to act up tonight.  The Headache itself is not so bad but my eye is not working so well, and the nausea is non-stop even with medication.  I am not thinking so well either - am so forgetful I have forgotten to remember what I forgot today....I think...I may be misremembering.

Went to the doc today, told that the antibiotic I am taking is fine but I should take a few more days of it.  Since I don't have proper sensation to know when I have a UTI (from radiation damage) my very nice PCP decided to leave a standing order at the local clinic so I can go and give a urine sample to know when and if I have an infection.  I appreciate that because it will save me copays when I really don't have an infection going on.

He gave me lasix, a diuretic, for the puffy problem., just a few days worth.  I am afraid to fly with such puffy feet and ankles because my feet and legs swell when flying anyway - I would have such big feet I wouldn't be able to sidle down the aisle in the airplane.  Add me flinging BLING the cane around and hitting fellow passengers and I can see me being featured on the national news for causing a disturbance.  Hoping that the feet will be in better shape by next week.

Starting some of the vitamin/mineral supplementation today.  Vitamin B-12 deficiency can go along with malabsorption issues like I have so I'm glad I'm starting this up again.  Many of the symptoms for Vitamin B-12 deficiency overlap with hypothyroidism and general anemia. I doubt if I am major league deificient but I might be just a wee bit under vitaminized.

Tuesday, October 19, 2010


A Reason For Being Tired

Dr. Calm had some preliminary blood tests done before starting me on cyclosporine.  Got the results back and I am a bit anemic.  Looked up the symptoms and they were very similar to the symptoms for hypothyroidism:  bone tired fatigue, cold extremities, mental fog, lightheadedness... the list goes on.  Being dehydrated can even make the symptoms worse, I guess because your blood volume is depleted to a certain extent.  Sounds a lot like I have been feeling, so glad its such a benign problem.

My feet are just ballooning and my face continues to feel puffy but The Hives have been breaking out all day big time, so not sure if this is the cause of the cankles.  Would like to be cankle free when flying up to Michigan in another week.  Maybe I can blame the cankles on anemia??  That would be something I could fix anyway!  If the cankles get canklier tomorrow I will call my PCP to see if there is anything I can do.  I won't have any shoes that will fit if I don't!!!

Feeling better tonight.  Maybe knowing there might be a physical reason for feeling like I've been pulling a barge over a sandbar has given me a boost.  Or maybe I'm just more cheerful earlier in the evening?? Or perhaps its the moon signs again??  Or just knowing out there in the blogaverse people notice and people care? Hard to tell.  I'll take what I can get no matter why.

I have a lot of health problems including malabsorption and chronic pancreatitis which could contribute to being a little anemic.  Will see if I can supplement with some sublingual vitamins since I don't digest most things very well.  That may be all the pick me up I need!

Hoping it is a great fall night for everyone and that you are all cankle free!!!

Monday, October 18, 2010

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!!

Sunday, October 17, 2010

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!

Sunday, October 10, 2010

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.

Tuesday, October 5, 2010

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

Sunday, October 3, 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.