Saturday, April 30, 2011

The Miracle of Angel Baby Kitty

What Faith Can Do

I have been thinking a bit about faith and it's place in my life.  This is not about religion but faith, faith that things will be better, faith that your heartfelt wishes can be heard and met, faith that in what seems to be a devastating and uncaring world someone cares.  One of the most powerful stories of faith in my personal experience is the story of my niece and how she got her Angel Baby Kitty.


My niece loved kittens, cats, and all things cattish.  When she was small, about 6 years old I gave her a toy stuffed cat - a very large white Persian kitty she promptly named Fluff.  She loved Fluff.  Fluff sat on her bed guarding her every night, Fluff was a pillow you could hug and tell secrets to, Fluff was a cat you could dress up that didn't squirm to get away and scratch you.

When my niece was about nine her parents separated and got divorced.  Fluff came with my sister (her mother), my niece and her sister to live with my parents and me until things settled down and the really scary things that were happening (even scary to adults) stopped and they could live safely on their own.  Fluff protected her throughout all this turmoil and fear.  Fluff listened to all the things she couldn't talk about to anyone else.  Fluff was loyal and  loved.  Fluff loved back without reservation without being mean without violence and absorbed any tears that went into her fur without complaint.  Fluff was becoming less Persian but more American shorthair each year but Fluff was full of love and never cared.

One day the first spring they stayed with us, a white female kitty showed up.  She was friendly and let my niece and her little sister hold her and pet her.  We knew she was the neighbor's barn cat, in heat, looking for a mate among our barn cats.  My niece however, had another idea.  This cat, she told us sincerely, was an angel from heaven, because she had prayed and prayed and prayed to God for a real white kitty to be her friend and this kitty was an answer to her prayers.  My sister tried to gently let her know that no, this was the neighbor lady, Dorothy's, kitten.  My niece was adamant.  She KNEW this kitty was a prayer answered in the flesh.

My sister had lost everything, all her possessions, all her photos, all their clothes, but through this all she had never lost her faith: faith in God, faith that life would be different, faith that circumstances would improve.  When Ms. neighbor kitty had her needs met and went home, what was this going to do to her little daughter?  When talking about the Angel from Heaven, my little niece's voice had wavered and tears had come to her eyes, but her mouth had been set very determined and her chin said don't mess with me!!!  How could my sister stop the disappointment we adults could all see coming?

Mother tiger mode set in.  My sister went into full campaign attack mode.  There was not much about their present life circumstances my sister could control, but she was NOT going to have her daughter disappointed about her Angel kitty.  Calls went out, family members were recruited, customers of the family business were queried - is there a spare white kitten out there somewhere?

We lived in a very rural farming community.  My graduating class in high school was less than thirty students.  How would my sister find a pure white cat in this sparsely populated area, even with the plethora of half wild, half feral barn kitties? Most of the kitties in the region were striped or spotted, not many fancy white Angel kitties around.  As luck would have it, right down the road from our family business, the niece of of a friend of our brother had a set of kittens ready to be adopted and some of those kittens were pure white.   My sister made arrangements to pick up a special white kitty.

We went down, and there was this fat cute little pure white kitten.  He was obviously well loved and well cared for.  The little girl  whose kitten he was very sad to see him go, but really loved the idea that she was giving him to another little girl.  My memory goes dim at this point, but I think my sister brought her daughters with us and my niece picked out this ornery sparkly white Angel Kitty that she was certain God had sent there to be waiting for her.

Angel Kitty was an instant hit, and soon became Angel Baby Kitty, soon shortened to Baby.  He became an enormous large lounge cat, who loved to be held and petted.  My niece never knew how hard my sister searched for the perfect white kitty, under extremely tight time frames.  This is how I think miracles happen - someone, somewhere, has faith - faith that wrongs will be righted, faith that justice will prevail, faith that Angels come down from heaven in the form of kittens to answer prayers and THEN someone somewhere has the heart and will to see that the faith is not in vain. 

What moves these persons to have faith or take action where others don't?  That is something you have to answer for yourself.  I already have MY answer, but it might not be your answer.

What happened to Fluff, the old stuffed plush toy kitty, in all this?  Did she become neglected and in the trash bin when a real life white kitty came to live with my niece?  No, this keeper of secrets, this defender against danger and darkness lived with my niece for years and years, moved with her when she got married, traveled in a luxurious shoe box across country while they moved, and waited patiently for another little girl to come along to love her and whisper to her in the dark.  My great niece, my niece's niece, inherited precious Fluff and despite Fluff's diminished fur capacity and increasing baldness she was loved even more, with a whole new generation of  hugs to hold.

I continue to have faith that things will be better, that life has joy and meaning left for me.  I may be an old Fluff, worn out and scruffy, but I have faith that someday I will find new adventures and new challenges waiting for me, and my old broken shoebox of a body won't be a worry to me anymore.

Mast Cell Madness

Another Specialist to See

Saw Dr. Calm today.  I explained the IVP situation with Dr. Pepper and Dr. Calm agreed that I should not have an IVP, that it could be life threatening.  I just had an anaphylactic reaction a few weeks ago over two pieces of cashew, and I have a pretty good crop of hives, so premedication for me is sorta like a drop of water in a desert, doesn't get much done.

Dr. Calm reordered a bunch of tests to check for mastocytosis.  He also ordered a cashew antibody test to see if I am really allergic to cashews or if that was just my body's way to say ENOUGH.  He also is sending me to a dermatologist to be checked for mastocytosis problems of the skin (maybe my big winny fat nose hive?? or the brown and red spots scattered all over my back..).  He asked why I hadn't seen one before and I said it is because there is generally a year wait for a dermatologist in this town.  A gal I work with had recurrent skin cancer and the local dermo's office told her it would be three months before she could see him since she would be a new patient.  I don't know what mojo Dr. Calm worked but I had a call from the dermo's office and have an appointment early Monday morning.  WooHoo!

Dr. Calm thinks I need to get my hiving under control, as that may be why I reacted to the cashews.  So now I am on 50 mg atarax at night (H1 blocker), 10 mg singulair (leukotriene blocker),  2 doses of Zantac per day (H2 blocker), if I can tolerate it 2 doses of Zyrtec per day (H1 blocker) plus take gastrocrom again (mast cell inhibiter).

During the cashew episode I started having a really bad reaction about 20 minutes after I ate two cashews.  I started hiving big time, I felt faint and dizzy (my blood pressure dropping), nauseated, in severe abdominal pain, and then the agioedema started in the throat and the allergic asthma.  I self treated with 50 mg benedryl and 25 mg phenergan.  I should have used the epipens, and Dr. Calm agrees with that assessment.  He says never hesitate to use the epipens, but I cringe because they certainly hurt!!!

Hoping for a productive weekend.  Hope you all are having a good weekend also!

Friday, April 29, 2011

Got My Tiara Serviced

Now Where's My Invite??

No invitation to the royal wedding even though I am absolutely positively certain (as far as I could possibly be from cadging other people's research on I have royal blood, even if it is diluted by about four or five hundred years of peasant DNA.  I've got my imaginary tiara all polished up and shiny just for the occasion,  I am very sad I was not invited but I would have had to decline anyway because I have yet another doctor appointment tomorrow.

I saw Dr. Pepper today, and good news - no UTI on the urinalysis dip stick test.  Bad news - he can't tell if I have a kidney infection even tho I am running a fever.  He decided to poke me in The Belly.  Not such a good thing for me.  Now I am having periods of great pain, spasms from my picky pancreas, and spasms from my right kidney and ureter.  I asked him not to poke but he wasn't listening or was just going to do it anyway.  I would like him to sit for hours in this kind of hurt (even with a pain patch on) just because some decided to feel his liver.  The Xray of my kidneys didn't show any stones still there, so it will take awhile for me to build some up again.  WooHoo!!!  Not so good news, he wants to an IVP next Tuesday to check the plumbing to make sure there are no obstructions and maybe see a reason for the fever.  Sometimes soft tissue problems are hard to see on CT's and Xrays (and I can't do MRI's because of my occipital stimulator implant).

I had hives when I had an IVP in the 1990's because of kidney issues (which were really because the growing cancer in my uterus was pulling down on my right kidney).  Contrast is injected in order to visualize the flow of urine.  It was the first time I had a reaction to contrast media.  Now I have anaphylactic reactions even to minute amounts of contrast media.  Dr. Pepper ordered a pre-treatment medication protocol for me (generally prednisone and benedryl) but I am not sure if I should move forward with the scheduled test.

I am about ready to chicken out of the test. The pain and swelling and breathing problems that come from having an anaphylactic reaction are very scary. The last one I had during a MRI no one was there to treat the reaction and I had to drive myself to the urgent care a couple of blocks away, while my blood pressure was dropping and my breathing got very raspy. I managed to get myself into urgent care, and walked up to the desk and whispered (because my vocal cords were swelling) that this was an emergency reaction. I am sure the beautiful outcrop of large red hives all over my face made me quite the sight. They had me back in seconds giving me epinephrine. I now carry my epipens with me even to healthcare appointments because I could have died in the time it took me to get to my car, start it, drive 2 blocks, park it and walk into the urgent care. Just reinforced my lack of faith in the competency of local medical facilities.

I see Dr. Calm my immunologist tomorrow.  I hope he can give me some guidance on the wisdom of avoiding the IVP or the efficacy of the pre-medication pack.  I am hiving a great deal still, and definitely don't want to make it worse.

My sister and I were commiserating about how hard it is to arrange appointments, work with co-pays and deductibles, and just get responsible followup care.  I feel that my health management is pretty much up to me to keep track of all of this, and I just get tired of trying. I'm thinking give me a $10.00  prescription of antibiotics and I wouldn't need a test at all.

Adding a nice pipe organ rendering of Felix Mendelssohn's Wedding March to fend off my royal wedding blues.  However, the way I am feeling I may be up in the wee hours of this morning so maybe I will watch. Hoping you all have a Royally good time tomorrow and don't get too bored with all the coverage.

Wednesday, April 27, 2011

Yodarific Day

How Wizened I Am

My boss The Big Guy nicknamed me Yoda on a conference call with a client a few weeks ago.  I guess I have become the mysterious guru who comes and goes on a whim to whip out some knowledge on the younglings every once in a while.  I certainly hope its not because I have hair growing out of my ears.  As I get older I am getting more drawn up and cane dependent every day, making me even shorter and dumpier.  I am going to have to start talking like Yoda now - croaking out a few words and then going Hmmmmmmm.  That can only make me seem wiser to uninitiated!

Went into work today just to sit in on a conference call to a new client.  They are super nice, and actually recognized my WooHoo over the phone!  Since I have a voice (unlike Yoda) that can call hogs three hollers over it is not surprising.  Hmmmmmmmmmm, yes??

The rains have been torrential here, with lakes overflowing and rivers flooding.  Here it has been ants invading the house as their outside environment floods.  I remembered a trick I picked up on PBS - flour kills ants or drives them away.  We had hundreds and hundreds of ants trailing across the house.  A judicious use of all purpose flour along their paths and ants disappeared.  Disappearing ants, good, yes??? Hmmmmmmmm.

I see Dr. Pepper my urologist tomorrow, have been sick for a week now, pretty sure it's not the flu, think it an infection left over from the last Kidney Stone. Big Sigh...any more it's harder to pry an antibiotic out of a doctor than it is getting a pain pill.  Too many antibiotic resistant infections rolling around, yes??  Hmmmmmmm. Ick.

I am stalling on the decision to try for disability.  I keep thinking I will be getting better one of these days.  I am still hoping I will get some blood test results back from Dr. House, although all I know so far is that I don't have a problem with my cryoglobulins (part of the blood affected by cold).  I think, if I just work the perfect number of hours, maybe I can just get my body working at maximum capacity.  Maybe I need more of the Force to levitate myself around....Hmmmmmmmmmm. 

At least I have found my ideal theme song to play whenever I enter a room!!!

Fatigue Time with Big Nose Winny

Hives Go Away!

My crop circle of hives/freckles on my nose is very shiney and noticable today.  I feel like the end of my nose is HUGE.  I am extremely tired, extremely sad, extremely irritated, extremely itchy, extremely ouchy.  I want to go to bed, but I can't sleep.  What's worse I forgot to fill my pain medication (duragesice patch 25 mcg/hr) before coming home and I won't be able to purchase the refills until tomorrow morning.

I will try and take some benedryl soon and see if it does double duty as a sleep inducer and as a hive reducer.  More hives are popping up as I am typing.  It's been that kind of week/month/year for me.

My pain is increasing as the medication slowly leaves my system. The Belly AND The Legs AND The Headache.  Hoping some of the other meds take part of the load.  I have too much to do tomorrow to worry about how bad I will be hurting.  Just hoping I won't have physical withdrawal.  On top of this I am running a fever and am nauseated, so feel very sick all over.  Blech!

An interesting day at work, a frustrating and upsetting day otherwise.  Hoping my spirit bounces back as I have excised as many outside irritants out of my life as I can today.  I am trying to simplify what I can and block out what I can't tolerate and get down to where I only have to worry about the basics of life.  I am hardly able to handle that!

Tuesday, April 26, 2011

National Infertility Awareness Week

More Common Than I Knew

Thank you to my friend Jeanne who posted about National Infertility Awareness Week at her blog Chronic Healing.  I linked to the organization sponsoring this event  RESOLVE, The National Infertility Association (  and I found the page about infertility myths especially enlightening. I know a couple that has struggled for years trying to have children, and know the heartbreak and sadness that has resulted.  I worry that I may have made some inadvertent comment that added to their burden.

This is a silent and sometimes stigmatizing disease that can cause heartbreak in ways I can't imagine.  Sometimes there are no quick and easy scientific answers to what is happening, and that only extends the anguish.  My favorite myth that was busted was "Infertility is NOT a disease":
Yes, it is. According to the dictionary, a disease is a “disordered or incorrectly functioning organ, part, structure, or system of the body”. Infertility in either the male or female partner is in fact directly due to some malfunction in the body, whether it be hormonal or structural.
Here is a link to the page with partnered blog submissions. I am reading as many as I can. 

I have modified my Maslow's Hierarchy of Needs photo with the symbol for this week because I think family and children have to rank pretty high on that hierarchy.  I am including a second quote from the website concerning the "hidden" emotions of infertility:
Infertility is a major life crisis for 1 in 8 couples. For these women and men fighting the disease of infertility, the infertility experience involves many hidden losses for the individuals, their loved ones and society as a whole, including:

•Loss of the pregnancy and the birth experience;
•Loss of a genetic legacy and loss of future contributing citizens to the next generation;
•Loss of the parenting experience;
•Loss of a grandparent relationship;
•Low feelings of self-worth;
•Loss of stability in family and personal relationships;
•Loss of work productivity; and
•Loss of a sense of spirituality and sense of hope for the future.

Because infertility often involves major personal life issues and decisions, it is often experienced as a private matter and is not ordinarily discussed in public forums. The personal nature of the infertility experience contributes to the failure of the public, politicians, healthcare professionals and the media to recognize infertility as a disease. This causes a lack of sound knowledge and available resources about infertility.
Hoping that society and science converge to help solve infertility issues.  I know a few people that have successfully gone through in vitro fertilization, but the cost is high, often not covered by insurance, and this does not solve the problems of all infertile couples.  Besides the inability to have children, there are other health issues that go along with being infertile.  Many gynecological cancers (such as the cancer I had - endometrial cancer) are more prevalent in nulliparous women.  Multiple miscarriages cause hormonal fluctuations that can cause brain chemical depression in addition to situational depression. Male problems with fertility can result from a variety of issues and I am sure carry their own health risks.

If you know someone who has experienced the saddness of infertility, think of them this week and spread awareness of this invisible disease.

Sunday, April 24, 2011

Buffalo Herd Skating = Happiness?

Knuckle Down Buckle Down and Do It

 My sister reminded me today of an old Roger Miller song, Can't Rollerskate in a Buffalo Herd, we used to sing and I'm thinking that's my answer. Been in the dumps lately, can't seem to climb out....maybe all I've got to do is Knuckle Down, Buckle Down, and Do It, Do It, Do It to get my happy back.

Traveled a few days last week to a new client.  Love the interaction, traveled with a great crew, but I did a dumb thing.  I forgot my cane BLING.  I left it setting on the edge of the table in the sunroom.  Legs don't fail me now I was thinking.  I could have gotten myself a new cane on the way but I thought - I will be sitting down most of the time, I won't need it.  Wrong!  It's been payback time since Thursday night.  I couldn't even safely drive to work Friday, my feet wouldn't push against the brake pedals well enough to stop.  They have been in spasms and hurting ever since.

The Legs were functional for the most part during the trip.  I was able to tip myself up on the feet and once I got tromping The Legs got with the program.  Late at night and these last few days The Legs got really upset with me.  Oh. My. God.  Wish I had an off switch.  I found some lidoderm patches I had packed in this luggage from a couple of years ago when my occipital stimulator got installed (hadn't used this particular piece of luggage for quite a while!!).  I used a couple and they helped some of the cramping in my calves, so I may ask my PCP Monday if he could prescribe these for me to try.  I'd like to exhaust all avenues before trying to increase pain medication again and I don't think pain meds will help the cramping muscle problems anyway.  Sigh.

Last weekend a friend came over and we went to Sonic and laughed and talked and had a great time during the 50% off drink special - I had a strawberry limeade - my favorite.  I needed some time to be a person instead of a caretaker for awhile and just to listen to her talk about her daughter and her grandbabies was great. Her oldest grandbaby is in high school now!!!  I remember when he was born.   Big Sigh!!

The cleaning rampage is continuing but at a slower pace.  Thank heaven!  Must have been a full moon or something to put me over the edge.  For me, when I am upset I quit eating and I want to clean everything.  If you saw me and my house, you would know I am seldom upset!!  Ha!  So maybe cleaning was a way to metaphorically clean house upstairs in my brain too.

Maybe all the cleaning and the travel has been too much exercise for The Headache.  I have had to up the voltage and change the programs in my occipital stimulator quite a few times this week.   Perhaps it is the horrid wet windy weather?  Just wish it would behave while The Legs are dancing in pain.  The Belly has been in a fix too, I think it is because I ate some "fry bread" vegetarian taco's at the client's cafeteria last week.  Delicious but way way way too much fat!!  Their chef was so kind when she found out I had a mammalian meat allergy tho.  She had actually heard of it, so woohoo!!!

I am waiting for my blood test results from Dr. House in St. Louis.  I left a message last week, but was gone most of the week so I don't know if he tried to catch me at home or not.  I am just guessing since I have not heard from them that my test results were normal.  Generally in health care they don't waste time giving you bad news, but are in no hurry at all to give you good news.

This next week I have at least 3 or 4 doctor appointments.  I see my PCP about The Legs tomorrow, and a followup on the kidney stones.  I have been running a pretty good sized fever and have been off antibiotics for about five days so suspect I still have an infection.  The nerve damage in my pelvic area is so bad I cannot tell if I have a bladder infection until I am throwing up and have terrible back pain, so it is difficult for me to know what is causing the fevers.  I see Dr. Calm (my immunologist) for a routine followup, and since The Hives have been especially vile lately I will see if he recommends anything more than I am doing.  I would like to have Dr. House's results before that appointment in case something immunological popped up.  I also see my urologist, Dr. Pepper, next week for a specialist followup for the kidney stones.   Since the stones didn't move through very well this time the ER doc I saw after the infection set in suggested I see my specialist.  Big Sigh Again.

I am waiting to hear back from Dr. House before really deciding about retiring because of disability.  I guess I am keeping some obscure hope alive that something might be wrong with The Legs that I can fix.  I want a full array of information before I try to make a life changing decision.

I will try and reach for my happiness again this week.  I feel defeated, withdrawn, overwhelmed with my own issues and with handling other people's issues in my home.  I need to strap on my roller skates and get out there with the buffaloes and go for it, no matter what the song says.  I might just succeed!!!

Sunday, April 17, 2011

The Feet Curl

The Legs Revolt

Today was one of those days when you start doing something, and later you say "I should have know what would happen!".  It started out with a few swipes to clean up a dirty doorknob, then the door looked dingy, then I fixed the fingerprints on the light switch and I noticed the wall needed to be washed, and now its 2 am I have the curtains down in the living room, the cushions stripped of their covers on the sectional couch and the covers in the dryer, and I have rehung and rearranged all the pictures on the walls, and still need to move all the furniture to vacuum underneath.

Why did I start?  I know what I do - one thing is clean and nice and everything next to it now looks dingy and in needed of sprucing up - then I can't stop!  Hours later and the room is completely topsy turvy.  I also cleaned the cabinets and walls in the pantry because I went to get some paper towels and there was a smudge on the pantry cabinet and....well, you know the story by now.

The Legs are truly pitching a fit.  My feet started cramping at about nine this evening.  Five hours later, they are still cramping.  I tried eating a banana for potassium, I tried drinking more fluids, I have my feet right now on a heating pad - nothing has helped.  I suspect the nerves in The Legs have had it - no more cooperation.  I have very little strength in my legs tonight as I made the mistake of climbing on a ladder to get the curtains down and to hang pictures up.  For some reason that just starts the pain wagon rolling.  I have had charley horses in my calves and my arches and the top of my feet now for hours.  Hoping at some point this will go away.  Hoping that point is soon!!!

With the pain patch on, I don't want to take any more pain killers.  The Jimmy Legs don't want to stay still and my feet feel like the Wicked Witch of the East's feet in the Wizard of Oz must have. They curled up and shriveled away after the ruby slippers popped up on Dorothy's feet.  Hmm, maybe some Ruby Slippers would help???  I did have some red tennis shoes, but I don't think they qualify.  Sigh.

Thursday, April 14, 2011

I Hates Kidney Stones

Rock-a-Bye Bladder

Last week, thought I was done with kidney stone #2 for 2011.  Ha!  Of course, life could not be so easy.  I was able to get to work Monday - yeah!!!  Tuesday, I had to go to my PCP's office because I was in serious trouble from KS#2.  I felt dehydrated even though I was drinking lots of liquids, and very little of the liquids was leaving my body.  Signs of a very bad UTI and probably kidney infection, most probably from KS#2 cutting its way out.  That explained that!!!  I was nauseated, dizzy, and in pain.  Stinking kidney stone!

I got my antibiotics, and got to work Wednesday. WooHoo!!! Twice in one week!!!  Oh, nooooo - KS#2 pain again in the night - no sleep so I just went back into work earlier on Thursday.  Got sicker and sicker and couldn't go to the bathroom at all.  Around 12:30 I called it quits and went to the emergency room.  I got fluids to help push whatever I needed to push out of my body.  The antibiotic seemed to be killing the bacteria they found on Tuesday, so no change needed there.  After three hours on an IV I was able to FINALLY go potty.  I wanted to dance and clap my hands and sing the big girl goes to potty song, but I held back my glee.  I did pass "debris" that was a result of KS#2's descent out of my kidney so hopefully this will be the end of that boulder.

Pain and discomfort tonight but nothing like last night.  I'm going to try to sleep despite the thunderstorm overhead.  Lightening hit my neighbor's transformer and he has no electricity, but luckily for me ours came right back on after flashing off after the lightening strike.  Hoping to make it to work tomorrow again.  

Going to a client's next week, taking a back seat while the new guy does the talking.  This is difficult for me - I'm quite the talker, but I am so glad to be training someone to do this I will gladly zip it!!!  I like traveling with the boss who will be going with us.  This is someone I admire greatly.  I worry that she is getting as burned out with all the travel and installation work as I am. It is just very hard to maintain a balance between home life and work life when you go from one intense implementation to the next. 

Thinking of bosses, the Big Guy made me cry this week because he just said he was worried about my health and had I thought about just going on disability.  He said he would be willing to work with me with whatever I decided.  I had such a bad few weeks, with The Problem at home, my Mom, and myself and KS#2 and poopy pants and stress stress stress that the kindness just overwhelmed me.  I can handle tough times much better than I can handle kindness and thoughtful consideration. 

Have I ever said I love the company I work for and my job??  That even makes me sadder to think I really can't hardly keep going onward.  I am going to get them through this next installation and reassess.  I talked it over with my PCP this week and he said it should be a no-brainer for social security disability determination but having been a federal employee years ago I understand "No-brainer" might be more description of the process than I wish.  I definitely would have bad enough luck to anger someone and make them use their "clerkly powers" against me.  Sigh.  I guess I shouldn't go buying trouble eh??

Health care is the conundrum I cannot figure out if I do decide to try for disability.  I will make enough that the Medicaid spend down (if I qualify for Medicaid) would be so high as to be useless.  I will just have to think on this.  It is one of the main reasons I have not retired yet.  Big sigh....

Sunday, April 10, 2011

The Headache that Never Stops

Hemicrania Continua: Continually Annoying

I have a headache condition called hemicrania continua.  It is with me 24/7 and has been my constant companion since December 2007.    The pain levels for this type of primary headache can vary from annoying to excruciating.  Unfortunately mine decided right away to be excruciating.  For most of us once it starts it never ever goes away, not one second of one day.  Only one medicaton has found to be really effective.  If you can't take THAT medicine there are really very few other treatments that work. 

After struggling for several years with excruciating levels of headache agony I can say that my pain is mostly under control.  Between having an experimental occipital stimulator installed, and now having to use fentanyl pain patches and neurontin for neuropathic pain, the hemicrania continua pain has receded.  It is still there, but just at a faint memory of what it can be.  Occassionally it decides to wake up and let me know it still can cause a great deal of pain.  On those days I remember what life was like before I got an occipital stimulator.  Not so good.

Although the pain has mostly gone, the physical symptoms are still occuring at the same frequency they did from the beginning.  Inability to sleep, problems with my left eye turning in and dilating, constant nerve pain on the left side of my face, constant nausea (well, I have other reasons for the nausea so that could or could not be The Headache), sensitivity to temperature, light, and sound.  The physical feeling of cold that pervades my life is a reminder that The Headache is lurking in the background twisting my brain in directions it shouldn't go.

I say the pain is under control but I can't do much physical activity or the pain still flares after about an hour of effort.  I can't take narcotic pain killers of a certain type or the pain returns.  I am constantly having to think about how much I have done, how much I have rested.  It's a major pain in the patootie.

Since having the breakdown of the stimulator controller last fall, I worry about another stoppage of my technology.  The remembrance of bad times past makes present pain free days sweeter but also put a shadow of fear into each day.  I wish I could go back to the few headache free years I had post hysterectomy.

I try to remind myself how lucky I am to have gotten into a study, to have gotten the degree of relief I have from The Headache, and to be able to continue with my life.  When I grow frustrated with the bits of The Headache that remain, I try to remember that there are people out there suffering a great deal and unable to find relief.  I wish wish wish they can find some sort of answer that helps as much as the ones I found.

Saturday, April 9, 2011

Finally - Dr. House

Crisis Management vs. Healthcare Appointment

Life here at my house has been not only hectic but in a tizzy.  I have not been blogging, and I have been staying close to home mostly because I had to help manage someone else's serious health issues and my Mom needed me close by.   She does not have the coping skills to keep up when events turn sideways quickly. Tonight I have some time to blog because while the crisis is not totally past I know everyone involved is safe and well cared for at this time.

The crisis was an hangover from the prior week, so my week got even better when kidney stone #2 of 2011 decided to pass Tuesday night. I debated about calling an ambulance. The pain (even with the fentanyl patch) was so severe I could not drive, stand or doing anything but squeak icky noises. My Mom was having enough problem coping with the other issues, I just couldn't leave her at home while I went to the ER to get help with KS#2. I rationalized that the ambulance would take 20 minutes to get to my house, the ride would take another 45 minutes, and I wouldn't get any pain relief at the hospital for at least another hour - and by then the stone might have passed. I toughed it out and finally got some liquids down my gullet to help push KS#2 down the path after about five hours of extreme spasms. Not something I would recommend if you didn't have to. Big sigh.

Wednesday I wasn't eating much of anything because of KS#2, but I had a tiny piece of some cashew brittle.  I don't eat cashews very often and never cashew brittle but thought maybe the sugar would pick me up and the protein in the cashew would actually digest.  I started having an anaphylactic reaction - joints swelling, stomach hurting awfully, hives popping out, itching itching ITCHING.  I thought - if I use the Epipen I will have to go to the emergency room, so I took two benedryls and a phenergan instead.  This did drop the swelling and some of the itching and stomach pain but I had forgotten I am wearing a fentanyl patch for pain.  I got a little scared because it did become difficult to breathe.  With anaphylaxis it is hard to tell if the problem with breathing is asthma, anaphylactic reaction, or medication problem.  I used my rescue inhaler but it didn't help much.  I think this was a drug-drug interaction between the benedryl, phenergan and fentanyl.  Too much too quickly.  I guess next time I will use an epipen.  Bigger sigh.

I had my appointment Thursday with Dr. House in St. Louis concerning The Legs and the neuropathic pain and weakness.  I had planned on taking Wednesday to drive up to St. Louis (because I fall asleep so badly when I drive it takes me at least a couple more hours to drive this than normal) spend the night, go to my doctor appointment, toodle around St. Louis some, maybe eat some really good Italian food on The Hill, go to Union Station, shop at the Dillard's outlet store - my usual St. Louis jaunt - spend the night again and drive back home Friday.  With The Problems at home taking precedence I decided to drive up and back on Thursday.  Very Big sigh.

I left at one in the morning.  The normal four and a half hour drive took me almost seven hours.  I had to keep pulling over to take a nap.  Nothing kept me awake.  Lately driving at night has gotten me very disoriented.  I seem to lose directional sense and depth perception.  Just what all the other drivers really needed to have on the road with them.  If I had only had the money I would have gotten airplane tickets to St. Louis, and then taxi'd it to Barnes Jewish for the appointment.  Ah well, I was very cautious driving and as dawn approached my vision difficulties got better.  Sigh yet again.

Fecal incontinence makes traveling a difficult problem.  Normally I won't drink very many fluids for two or three days before traveling, and don't drink very much during travel.  However passing KS#2 became a priority so I was primed full of fluids.  I took extra clothing with me, and was very glad because mid way I had an accident.  Since my external sphincter is not as functional as it should be, I just don't have pucker power.  As I explained to my colorectal specialist once the poop chute is loaded the payload delivers regardless.  I changed clothes twice before my appointment.  I was so glad I had brought the extras!!!

My appointment with Dr. House was at 9:30 am, but I got there early and was seen much earlier.  I had been to the Center for Advanced Medicine for Washington University Medical School, and Barnes Jewish Hospital before.  I saw Dr. Bellyfixer about the digestive issues I had from the radiation therapy overexposure in 2004.  He was quite helpful, and I found Dr. House and his team just as thorough and helpful.  Wash U definitely Rocks!!!

A young neurologist took my history and did a physical exam.  He did notice my permanent hive on my nose - I told him it was my Rudolph the Red Nosed Reindeer spot.  I guess it helps that I had gotten some sun, because that makes it shine more perfectly beautiful.  I warned him I already had several rare diseases, and if I got one more rare disease I might not believe it. Ha!!  I was so tired I am not sure if I made very good sense.  Good lord I had to remember who was president and do math and spell things backwards!  This is a woman who just pooped her pants twice in the last 7 hours.  I don't know if I was competent to do anything that required brain power...  When he got out the large safety pin to poke me with, I almost pooped my pants again.  Ouch! 

I had brought copies of xrays/mri's/ct scans that Young Dr. Kildare had said Dr. House would need.  Nope - didn't need any of them because I don't have a physical issue with my spine or hips.  I brought copies of Dr. Kildare's notes, nope they didn't need any of them.  They were glad that I had brought the immunology labs and some DNA testing I had done (I thought of that on my very own - take THAT Dr. Kildare!!!).  Dr. House and the young neurologist consulted with each other out in the hallway, then Dr. House came in and introduced himself.  Very nice, not like the TV Dr. House at all.  No arrogance, no immediate attempt to blame me for my problems.

Dr. House repeated part of the physical neurological exam.  Thank heavens - no current event quiz, spelling bee or math problems.  I was halfway expecting him to make them more difficult - there is a train traveling east at 40 mph etc. etc. etc.  Whew!!!  We discussed why Dr. Kildare had sent me there, and his conclusion that I had small fiber neuropathy.  We also discussed my problems with my bowels, bladder, pelvic pain, and nerve pain and that I associate the onset with my vaginal brachytherapy treatments in 2004.  Dr. House said he was going to repeat the EMG and nerve conduction tests using their techniques before he decided I had small fiber neuropathy.  If the tests were negative, then I might need to have a nerve biopsy.  He said their techniques were generally more sensitive than the ones I had in Springfield by Dr. Welby.

I got my blood test orders and the nerve test orders and was sent directly to the EMG lab.  The lady doing most of the test took her time and did much more extensive testing and also warmed up my foot saying if it was cold it could distort the test.  A doctor came in after she was done and read the results of her tests.  It showed a very subtle difference between the speed of the nerves in my arms verses the speed of the nerves in my legs. He said that he would probably say I had large fiber neuropathy, but did the needle part of the test which was normal first.  He went to discuss his findings with Dr. House.

The lab got me admitted to their services and I gave about a gallon of blood for some tests for other causes of neuropathy.  Not sure what they were but Dr. House said it would take a couple of weeks to get the results back so they may have to ship some of it off.

I went back to Dr. House's office to see if I needed a nerve biopsy.  He said that they had all concluded that I had large fiber neuropathy (which Dr. Welby had not detected).  I asked the cause and he did not say that it was diabetes, but he did say he just couldn't prove it was the radiation.  I asked him about the weakness and the pain increasing with activity and he said that was normal with this type of neuropathy.  I asked about physical therapy, would it benefit me, and he said probably not.  I asked about medication and he said I was getting what he would have recommended, but that I might double the fentanyl for more adequate pain relief.  He said I should call back in a couple of weeks if I didn't hear from them about the blood tests.  He said I might have small fiber neuropathy also but the majority of The Leg issues are from the large fiber neuropathy.  Huge sigh.

I got out at about noon, which is fantastic with everything that I did, and started home.  I got home about 6 PM and ended up going to a hospital and leaving there at about midnight because of The Problem.  By the time I got home I was so exhausted I was falling asleep standing up.  I slept very late Friday, and a lot of the day today.  Right now I am so tired I am falling asleep writing this - you probably can tell!!!  Triple huge sigh.

I go back to see Dr. House in six months.  I see Dr. Kildare in a couple of months.  I know that I have large fiber neuropathy, which is more consistent with radiation induced plexopathy but can also be from a lot of different things as it is the most common kind of neuropathy.  I also know that I do not feel cold the same in both of my feet.  One does not feel cold the same as the other.  Hoping the warm foot can teach the rest of my body how to feel warm instead of cold!!  I know there is not a lot that can be done other than what I am already doing for the pain.  Maybe a reason for the problem will come up when the blood test results are in.

The Headache behaved pretty well for all the activity.  The Legs and the pelvic pain and KS#2, not so well.  My mind is the same jumble it was before The Problem hit, and all the travel, and all the walking.  Hoping getting more rest tomorrow will help.  If this post is a little goofy, that is because I am majorly goofy tonight.  Gonna try to get some sleep.  Biggest Sigh Ever!!!

Wednesday, April 6, 2011

A Subject Dear to My Heart

The Physics of Clown Cars Explained

The scientific engineering writers over at Car And Driver have been working overtime figuring out the physics of clown cars, a subject I ponder over at odd moments.  Anything to occupy my mind right now as sucky as things are is a welcome diversion.  Now that I understand the theory behind clown car-age stuffing, perhaps my dream of running away and joining the circus is not so far from reality.  I think I need to decrease my mass somewhat to ensure I would not be crowding my fellow clowns in stuffage.

I quote from the article The Physics of: Clown Cars:
Unfortunately, and contrary  to accepted folklore, clowns need to breathe. Discomfort is to be anticipated, but General Sur­vivability demands some consideration of  physiological needs.  Moreover, the overriding concern of anyone packing clowns into a car must be that the result is Maximum Clown Hilarity. Not only must the clown car dispense clowns, it must also disgorge props such as expandable luggage, beach balls, and two-person giraffe outfits with spring-loaded necks.
Maximum Clown Hilarity - now that is what I need to seeking from life!!!  Less General Survivability but More MCH!!!

In the video clip of a modern variation of the clown car gag from the Ringling Brothers Circus, I feel that I look like Cat Women, but feel like the Flash - I think I need the big jug of energy drink he has!  And my fat feet look like his today!!! - maybe I wouldn't need much of a costume!


Friday, April 1, 2011


Ready To Trade in My Legs

My birthday was this week.  I am older, but am not getting any wiser.  I keep getting myself into the same painful spots I have already been in.  Short of quitting walking, quitting working, and quitting driving I don't know how to stop overdoing it.  Oh well....

Took my Mom to the vascular surgeon  yesterday.  Great news, her abdmonial aortic aneurysm is not at a danger point yet, and per the vascular surgeon she will need to come in every year for an ultrasound and a checkup.  He said as slowly as it is growing, she may never need surgery.  He said for aneuryisms less than 5 cm wide (hers is 4.5 cm wide) watchful waiting is the only treatment.  My mother who had been building castles of disaster in the air (a lifelong habit) was very relieved, as I was, to hear this.  WooHoo!!!  Her aneuryism is right where the abdominal aorta turns into the left and right arteries that go down the legs, so it was lower than I thought it was.

I have had a lot of pain today, but I soldiered on and got Mom to where she needed to go.  Hoping April is going to be the month this all turns around and everything is better.  The fatigue is very bad, and driving is very hard to do without pulling over every so many miles and napping.  I feel it will be a very long drive to St. Louis next week.  Sigh....

I am going to try to work tomorrow.  I have lots to do and not much time to do it in.  Arriving at work is going to depend on how much I aggravated The Legs taking Mom to the doctor.  Hoping I recover while I sleep!