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!!!

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!!!

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.

Winny Big Lips

Angioedema is Not My Friend

Went to my new immunologist Dr. Calm today to see about my hive outbreak.  He has reviewed my records and thinks I may be having a flare up of mastocytosis.  I told him that I have had intestinal biopsies and a tryptase level taken and they were all negative for mastocytosis, and he said that negative tests did not rule out mastocytosis, and that there wasn't any single test that could rule out mastocytosis - symptoms said more than tests decide the diagnosis unless you showed a definite postivie test. My continued allergic reactions and growing list of medication sensitivities (apparently muscle relaxants are a known issue for persons with mast cell disorders so no wonder I had problems) hives angioedema and the abdominal cramping I get with a bad hive "flare" are all symptoms.  Headache can be a symptom and multiple chemical sensitivity problems.

I got a bunch of blood tests done (ha ha - I was prepared and drank a lot of fluids before going there!!!) No problem with the blood draw although they had me marked to use a hypodermic and butterfly instead of the standard vacutainers so I guess they keep track of people like me who have trouble with blood draws - efficient for a change!!  I am on prednisone with a taper per my request because my hives tend to double back (get worse) if I don't taper prednisone. 

I am going back on Gastrocrom, a medication you drink four times a day with water - it is supposed to decrease the number of mast cells in your digestive system.  It's not very convenient to take because you have to carry these little plastic vials of liquid with you everywhere.  The pharmacy has to special order it, but I had some from the last refill I did about a year ago that should still be good (it's light sensitive so you keep it in a box of foil wrapped packages in a dark cabinet).   Dr. Calm said that it won't help my hives (it certainly didn't do that before) but it should help some of the belly pain.  Hoorah for that!  I have to take 8 vials per day, and its sorta flat salty tasting even diluted.  Guess its no worse than Gatorade!

The hives are some better tonight after prednisone although my angioedema (swelling of the lips, under the eyes, ears, inside the ears, my vocal chords, inside the nose, and it feels a little like my tongue at the moment, plus my feet and hands off and on) is worse.  It always is worse on day two - don't know why but when the hives starting popping back this morning inspite of my medication of the night before I knew I better get to Dr. Calm to get something to stop the progression.  I worked a couple of hours, but didn't get to stay as my face had started to swell.  I tried to skedaddle before the lips became Angelie Jolie lips. 

I was a bit upset this morning, not only because prednisone kills my stomach and pancreas, but because Dr. Calm wanted me back on the Gastrocrom which is a pain in the patootie and he wants me to consider taking cyclosporin, a heavier duty immune suppressant, to get things back in control.   I know the longer the hives stay flared up the more danger I have from anaphylactic reactions, which is truly life threatening, but more medication is not what you want to hear when you already have to travel with a handbag full of medication.

I go back in a month and maybe the blood tests will be the decider for me on the clyclosporin.  My blood sugar goes too high on prednisone, my body rebounds from it so maybe this will do the trick quickly.  Dr. Calm did say I probably should only take Botox for The Headache if I have a tiny tiny test dose first maybe in the upper arm to see what happens, and it would be no guarantee that I would not an allergic reaction.  I guess Dr. Hannibal Smith is going to have to take that off my possible treatment regimens, because kind of like The Headache I try very hard not to rile The Hives.

I'm traveling next week.  Praying that I will be able to stick it together for another week.  I would love to have a full month of good health and feel back to my normal level of work.  At least now I thank heaven my very very nice bosses have a trainer, and now a medical billing/coding specialist! If I fall by the wayside like the walking wounded I am I won't be leaving them in a bad place personnel wise.  I just need to hang on for a few more months and get the new guy (who is soooo organized and willing to learn!) trained,  then some of the sleepless nights where I worry about my employer I can worry about something else!  You know, if I didn't have supportive bosses and co-workers I would be SOL (or FUBAR as we said when I worked with military veterans).  This is a great advantage of working where I do, and the awful dilemma of having landed a job I love with people I enjoy but physically difficult for me to be well enough to work productively.  FUBAR indeed.

My boss, The Big Guy, turns 60 tomorrow. In my family not a lot of people live to hit 60 so I hope he can celebrate with happiness.  I'm gonna be dancing the happy dance if I make it - only nine more years to go!  At the rate I seem to be accumulating maladies I fear its going to be a tight race to the finish line for me.

I am including some links to discussions about mastocytosis by specialists, and how it is often missed as a possible diagnosis.  Most adults who are diagnosed with mastocytosis are middle aged by the time they get a diagnosis.  Maybe it is my causitive agent for everything - The Headache, The Belly, and The Hives.  I'm afraid The Legs can't be blamed on it.  Worried about the cost of additional meds.  Sigh and sigh again.