Best Laid Plans

Why don't things Work Out??

Yesterday found out from my PCP that I probably started an inflammatory response in my spine from my fall.  He was aggravated that the ER docs just treated the pain and NOT the inflammation which my PCP says can cause some real damage.  Pooh!  Just what I needed more bummy sucky not what I wanted to hear news!!! My best laid plans are fully of kitty laughs at how poorly they have performed.

He gave me a bit shot of prednisone and a script for a three day "burst" of prednisone to drop the inflammation and hopefully stop the new onset incontinence and the new onset numbness.  Downside is that he said as the inflammation drops I will start to feel "new" pain.  OUCH!  And he was right!  DRAT!

My PCP also gave me enough meds to make sure I didn't keep moving yestersday.  I had 15 minutes to get home and then ZONK I was out like a light.  No time to call work, write work, or do much except sleep.  Sometime in my snoozathon I moved from the sunroom couch to the living room couch.  I finally stumbled to bed around 11 PM.  Sigh.

Got back to work today at around noon.  The pain in my teeth came alive - this is now day 2 of prednisone, one day left.  Everything hurts but it could be worse, better than broken bones by a long shot! Lots to do and not much time to do it in, so maybe I will be up to working this weekend.  If I do I may need to rescind one of the days off I took for the fall.  Big Sigh.

Am fearing I may have to have a new set of choppers in order to set my teeth to rights - not sure if they will be able to be saved - the pain is deep set into my spongy bone around my teeth - they feel like they are knocked loose - and with more pieces falling off every hour or so, am afraid the roots might be dead. I lost big chunks of tooth today, so hoping I have some teeth left by the time I see the dentist at 12:30 on Friday Ptoooey!

A Hundred Miles Per Hour

Prednisone High

I'm a fast talker.  I grew up in Northwest Missouri and I guess we all had lots to say and little time to say it in. We were all fast talkers up there, you had to compete to be heard.  I now live in Southwest Missouri and they are more southern in accent and are slower talkers with softer voices.  Being a fast talker makes you seem pushy and agressive so I have learned over the last 20 years to pace myself.

On prednisone I seem to loose all control over verbal speed.  I am talking at 100 miles per hour, super animated, and then all of a sudden I crash and burn, drained of energy until my next day's dose. 

I have a Minnie Mouse annoying voice and depending on whether my angioedema affected my vocal cords too much I either drop down to a husky Marlene Dietrich range or accelerate to Spongebob Squarepants squeakiness.  Today I was definitely Spongebob.

I have trouble sleeping anyway and prednisone makes it even worse. Had an hour and a half of sleep last night, came home a little early from work because the energy all burned out of me at around 3:30.  Wasn't able to rest but at least the lip swelling and the sinus swelling have gone down.  My ears and behind the ears are still not completely angioedema free, but hopefully tomorrow's dose of prednisone will calm it down.  I'm still itchy but its much better than it was.  The Headache is not happy today, but that is right on schedule so I am hoping my antihistamine triatholon I will be doing tonight will help with the added ouchiness.

I am very very tired tonight (second day in a row with very little sleep!) so I am hoping the antihistimines will help send me to dream land.  I'm not so nervous about having my ability to breathe stopped while I am sleeping tonight.  I have gone to bed and woken up in the morning completely covered with hives, so I am always afraid the angioedema might get worse at night also with no way to wake up and use my epipens.  I get a little wheezy and it just ratchets up the old anxiety meter that prednisone gives me anyway.    My blood sugar is running high, but not too badly high, it should drop as I drop the dosage of predinsone.  Maybe if I take the cyclosporin it won't be as bad.

Tuesday I will be flying to Arizona and staying for a few days and I desparately want this episode of hives to be almost over if not completely over.  Eating out is pure misery  when you don't know what is going to start up The Hives, and to stay alert for the clients I can't take as many antihistimines as I really need to do.  Oh well.  Hoping maybe the icky gastrocrom will have kicked in by then!

Hoping everyone has a great Labor Day Weekend!  Hope some of you are actually planning to do something fun! FUN! "F is for Friends that do stuff together, U is for You and me, N is for Anywhere and Anytime at all Down here in the Deep Blue Sea"  Spongebob wisdom for us all, although I have been a bit Planktonish this week.

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.