Tuesday, March 29, 2011

Sad Clown Kind Of Day

Wishing I Could Cheer Up

Not a good day for me.  I am overwhelmed with pelvic pain and leg pain.  I actually could see today where there might be an end to me being able to walk or drive. I am at the edge of where I cannot handle it, physically or emotionally.  The nerve pain in my feet is curling my toes and all I can do right now is hunker down and get through it.

The increase in pain medication has been good in a way and bad in others.  The background all the time pain is less, and some of the heavier duty pain has decreased - this is good!!!  I am doing more with less pain at the time I am doing it.  This is good and this is bad.  My pain stores get overloaded later and now I'm back where it is almost impossible for me to use my feet when driving.  Pushing on the brake pedal is excruciating.  The pain is up the legs and in my pelvic region and then up inside my lower abdomen.  Using the accelerator is almost as terrible.  This is bad. Sigh.

I am not sure how I will get to St. Louis next week to see Dr. House.  I guess I will just be tough and get there and somehow get back.  I wish I was wealthier because I would catch a plane there and back and at least would not have to drive four hours there and four hours back.  I may drive up one day and back another so I can rest frequently.  Hoping I don't have some kind of bizarre leg test while I am there that will make them go wonky...it would just be my luck.

I am bummed out, on the verge of tears.  I try not to break down because that doesn't help anything, and then I start the pity party, and then when it's all over everything is still the same as it was when it started.  I don't know what would become of Mom if I can't keep going, so stopping is not an alternative.  I think it is just a convergence of suckiness and sickness and pain all at once. I need to come up with some kind of innovative solution for it all....

I wonder if you can get a kick start for your legs, like on a motorcycle??  I could rev my throttle, get'em spinning and then off I would go!!!  Just like Fred Flinstone and that car he powered with his feet!  Now I'm feeling happier already.  I'll have a Yabbadabbadoo time running all the way to St. Louis!

Way Too Tired

Wacky Legs Don't Work Right

Very tired today.  I took my Mom to see her gallbladder surgeon to be released from her post surgery restrictions and for him to visualize her incisions and say they are healing fine (they were).  This only took five minutes.  We were scheduled in the morning.  I thought we will go get this done, come home, and I will whip into work.  Uh uh...was not in the cards today.

We got there ahead of time and waited and waited and waited and waited.  I was so tired I fell asleep in the waiting room.  Finally we got called back into an exam room.  Then we waited and waited and waited for the five minute exam.  The surgeon must have had emergency surgery or something that morning because he was running WAY late.  If they had just told us, go out get a snack, come back around one and he'll see you then I would not have been so aggravated, but since I was so sleepy aggravated took way too much energy.  We got out of exam room limbo around one thirty in the afternoon.  Augh!!!

Then I took Mom shopping for a bath chair.  I had been having a hard time getting Mom to take showers lately.  She has had several small strokes, and has COPD, and apparently has been having panic attacks in the shower and not telling me.  I happened to be making her bed while she took a shower last night and heard her crying and hyperventilating in the shower.  I went in and put a chair in the shower for her to sit in because she was shaking so much and helped her finish washing her hair, etc., and got her dried off with a towel.  She kept saying she couldn't breathe, but she was hyperventilating because she was panicking.  I sat and had a long long talk with her about how she needed to let me know if she was frightened by things like showers or the dark or doctors. 

She had not realized she was having anxiety attacks - she thought the shower was exhausting her and taking her breath away.  I told her that we would get a bath chair with a back and instead of having showers in a claustrophobically small corner shower, she could sit in the bathtub in the other bathroom and use the hand held shower.   I told her I would schedule which days we would do this, and I would blow dry her hair for her if she was too tired to do her hair afterwards.  I told her any steam would dissipate out in the bathroom not like in an enclosed shower stall.  Hoping this will help with the panic.

I drove Mom to the doctor, I walked into the clinic and back with her, and we strolled around Walgreens and CVS pharmacy before finding the ideal bath chair.  Then we drove home.  It was four o-clock in the afternoon by the time I got home.  No work today. Big Sigh.  Mom did like the candy aisle at Walgreens so now we have a big assortment of her favorite candies.  She is such a little lady she could eat candy all day with her regular meals and the extra calories could only help!

I am finding even my cane BLING is not helping on walking expeditions. I spent my evening on the couch in extreme pain in the pelvic area, lower back, and legs. My feet started cramping and then my legs. I ate some oranges thinking maybe I am low on potassium, but it didn't seem to help the muscle cramps, so I am guessing it's not low potassium. Sigh

I need to build some endurance so I drive to work with less pain. The increased dosage of fentanyl (25 mcg/hr) is helping with the constant pain and some of the break through pain, but it does nothing for the type of pain I had this evening (and am still having).  Maybe Dr. House will figure it out in April??  I can only hope.

Its 2 am and the pain is still bad in The Legs.  The Headache decided to try to wake up this evening also - probably due to increased walking also.  I hope Mom is not too tired or in too much pain.  She took a nap and then got up for a while and went back to bed at her usual time of 9:00.   I hope to get to work tomorrow, I have things that need fixing and people to help!   Just need to get my jump jiving legs to be still and quit hurting and wailing!!!

I am going to try to pace myself per Diana Lee's post at Somebody Heal Me "Pacing: Just Three Things".  She suggests just picking three tasks you know you can complete each day so you don't end up over tired or overwhelmed.  I think I need to draw up a list of tasks by fatigue level so it will be easier to pick!!!

PS sorry for the advertisement from YouTube if it pops up - its the official video of The Brian Setzer Orchestra perfoming Jump Jive an' Wail and I guess they need the extra income from the ads???

Friday, March 25, 2011

Getting Back to My Old Normal?

One Crisis Over, Waiting for The Next

I used to say my life was like living in a lower apartment and waiting for the next shoe to drop and my upstairs neighbor had a bigger shoe obsession than Imelda Marcos (I guess you have to be my age to understand THAT joke).  One problem gets solved, three more jump up to get in line to be next.  Big Sigh!

I haven't been blogging much this month because my Mom has been taking a lot of my attention and energy.  She had her gallbladder removed laproscopically a week ago today.  Seven huge gallstones were stuck in it AND it had adhered itself by all its edges to her liver because of adhesions from her colon resection a few years ago.  One other issue solved by the operation - her constant runny nose seems to be gone.  Wonder if gallstones can make your nose run??

Mom is 81 years old, and did not bounce back from this operation very quickly.  Her blood pressure was too low for her to receive pain medication for hours after the surgery so she and I stayed the night at the hospital.  I told the nurse at about 6:30 PM that I was uncomfortable taking her home in too much pain and so far away from the hospital.  Mom was feeling better about one or two in the morning, and I was feeling worse.  I am way past the age where I can comfortably sleep on two chairs pushed together!   The Legs and The Belly and The Headache were determined to keep me awake, in addition my back needed a right angle in the middle of it to make me fit in those chairs!  I stayed with Mom, determined to keep her oriented as to where she was and what was happening, and helping with technology like call lights and cell phones.

We made it home Friday afternoon, and it took Mom until Wednesday morning to feel close to normal again.  I finally had to make her walk walk walk to get all her innards to work again.  Even with pain medication I am sure it hurt, and I hated to do it, but things were not progressing because she just wanted to sleep and not move.  After walking and drinking lots of liquids she started feeling better.  Today she was as grumpy as could be, a sure sign of improvement.  Unfortunately she was also grumpy Saturday Sunday Monday Tuesday and Wednesday!!!  But grumpy is improving both in the frequency of the complaints and the substance of what she is complaining about, so I am glad she is grumpy.  Next week we return to see the surgeon and then on another day go to see the vascular surgeon about the aortic aneurysm.

More ill health has hit members of the family since I last wrote.  We have absolutely no luck in health related issues.  I am wishing the tide is turning and better health and more energy are coming our way!

I saw my PCP today, and he is increasing my fentanyl patch from 12 mcg/hr to 25 mcg/hr.  This is because I am still having significant pelvic, leg, lower back, and abdominal pain not to mention break through pain from The Headache.  I was asked what parts of my body are working OK, and I put my hands at my eyebrow level and said from here up I'm at 100%, everything else is toast.  Got a laugh but I really wasn't kidding!

I was able to wander into work today, and actually felt useful.  I was able to help several co-workers with some problems and work with a client on what they need to do to set up and bill for new services at their location.  Healthcare is never easy.  Something you would think is simple is extremely complicated, and something normally complicated in any other type of business is generally almost insurmountably terrible and mixed up with state and federal regulations that are unbelievable. 

Other countries do not have this hopelessly convoluted system we have developed here in order to capture cost and get reimbursement for services.  I don't think healthcare reform will ever touch this either, as there are entire industries devoted to special areas of healthcare management and reimbursement.  I guess its good that my company is very flexible - an advantage to being small, it is very nimble and able to make large changes very quickly.  It is one of the things I truly love about how they/we work!

Thinking of work, I am praying that the increased duragesic (fentanyl) dosage will allow me more pain free hours and increased functionality.  My PCP said today what I had already figured out - pain relief is not going to change the physical problems like weakness and leg cramps and foot cramps (I didn't know how far my feet could curl downwards until I started having these about a year ago - OUCH!) and inability to stand/walk for long distances or periods of times.  Big Sigh again.

I go on April 9th to see Dr. House at Washington University in St. Louis to see if there is any unknown metabolic or other bizarre lurking illness to blame for my leg problems.  I told my PCP I am not quite sure what I am going to see Dr. House for because all I can get is bad news or worse news, there is no possiblity left in my mind for good news.  Just another shoe dropping from my overhead neighbor to anticipate!

Hoping you have all had good days since I last looked.  I will try to get caught up on my reading in the next couple of days - I feel so disconnected.  I have just not had the energy or the will to do much in the last week.  Hoping for better things next week and the week after!

Wednesday, March 16, 2011

Digestive Enzymes and Mammalian Meat Allergy

I'm Ready to Curse in Kangaroo

The research crew in the allergy department at the University of Virginia were so kind to test my digestive enzymes I have prescribed for chronic pancreatitis. They were looking for "a carbohydrate present on meat called galactose-alpha-1,3-galactose, also known as alpha-gal" and they found it. All of the prescription grade FDA approved digestive enzymes are made from pork protein and apparently the manufacturers do not process the alpha-gal out of the protein when creating the enzymes. I sent the researchers the prescription brand I had LESS hives from compared to the other brands. I suspect there would be even higher levels in some of the other brands.

I have tried a couple of different brands of vegetarian digestive enzymes since finding out I had a mammalian meat allergy last fall. Unfortunately for me, the ones I have tried seem to be using some type of herb or plant that is causing hives also. Many herbal remedies contain high salicylate plant products which for a "hiver" like me spell trouble. I guess I will need to keep trying other brands - but since they all have similar reactions I fear they share a common source for the enzyme. Big sigh!

Per the University researchers there is a prescription vegetarian enzyme alternative currently in testing for FDA approval. Knowing how long that can take I guess I shouldn't worry about ever needing a prescription for those pills!

I'm sad about the results on the enzymes because using them did help my pancreatic pain. It also helped me absorb fats and the vitamins that are stored in fats, otherwise I don't digest protein or fat very well. I pray that no one else with this allergy has pancreas issues because this is not good news.

Maybe I can contact the company trialing the vegetarian enzymes for the FDA and see if there is some type of hardship exemption.

The over the counter supplements don't tell me what they are made of nor is there any regulation that insures that the dosage on the label is actually in the pills. I tried ones first that friends said were reliable. I guess I will just need to branch out.

My Mom and I will get up at the crack of dawn to get her ready for her operation day. I am worried about the results as I know she is, but am afraid we will have continued bad results if she does not have her gallbladder removed. Praying for gallbladder goodness tomorrow. She has a very experienced surgeon who took my gallbladder out a few years ago. Hoping for the best possible outcome.

Tuesday, March 15, 2011

New Health Issue "Big Sigh"

Just Another Reason to Have Pain

This week I have been really busy.  I had "deliverables" I needed to finish for work, so got those done Monday! WooHoo!  I spent today working with my Mom, getting her prepared for her presurgery interview and talk with the anesthesiologist.  We went over what was going to happen, why the nurse was going to ask questions, when she was going to have the surgery, why she needed the surgery all morning.  I had planned to go into work, but was glad I spent the time with her instead. 

Mom seemed "with it" and was able to answer the questions from the nurse and the anesthesiologist without much help from me, AND she seems to understand what is going on much better.  Whew!  I was afraid of a repeat of her last ER visit.  She was Stellar today!  Hoping that the same will be happening Thursday!

I had a couple of specialist appointments Monday besides going to work.  My endocrinology appointment went great - my blood sugar is perfect, my thyroid levels are normal, my vitamin D levels are back up, so no change is needed for a while.  WooHoo!!!   Then I had my gynecology appointment. Not so woohoo.

Since having a hysterectomy which included removal of my ovaries because of endometrial cancer, I have not taken HRT (hormone replacement therapy).  There is debate whether or not HRT increases risk of recurrent cancer or increases risk of other cancers such as breast cancer.  I preferred not to incur any extra risk since my luck stinks.  In addition to NOT taking any estrogens I also had vaginal high dose rate brachytherapy (which was misfigured and overdosed) so now I am having issues with vaginal atrophy, making pelvic exams even more painful than they have been (and I didn't think that was possible!). 

The nurse practitioner I saw this time (my regular doctor was out of office) said that my tissue is very friable (thin skinned and easy to injure) and shows signs of mucosal injury from the radiation and considerable shrinkage.  So now in addition to the nerve damage I have tissue damage.  This is not an uncommon occurrence among women, especially with postmenopausal women but I'm just tired of every time I see a doctor I seem to find out something new, something not so good.  I'm definitely whiny about the whole situation. 

The mistake in my radiation dosage has not been good to my body.  Maybe this would have happened without the errors but there is no way for me to tell. I have my external anal sphincter partially destroyed by fibrotic changes.  My bladder is shrunken, has lower capacity, and nerve damage. I have problems with fecal incontinence and urinary incontinence both due to the tissue damage and the nerve damage.  I have constant pelvic pain.  I have pain down both my legs that worsens when I stand or walk or use my legs in any fashion. I have non-stop diarrhea and fast motility so food does not digest, and I am on the brink of dehydration most days because I exude too much water through my bowels.  I have nonstop bladder infections due to structural problems and nerve issues and I am running out of antibiotics I can take because this has been ongoing for 7 years.  I have been told I will need a colostomy at some point.  I am on fentanyl pain patches, and at the current dose which allows me to work I still have many many nights where I am up all night in pain. My teeth are falling apart because I have such malabsorption problems.  I have other bizarre health issues that I can only wonder if they might have been initiated by the radiation or from the side effects.

Ah well, at least I have some measure of pain control.  This is good!!!  I am still able to work, but on a much reduced schedule.  This is good!!!  I am alive and breathing.  This is good!!!  I am still able to walk.  This is good!!!  I can still read, write and do arithmetic (after a fashion).  This is good!!!  I have my family and my pets.  This is good!!!  I can still use a computer.  This is good!!!  I have all my various Internet friends.  This is good!!! Whew!  Now I am off the whiny wagon I feel much better!

Hoping you all have pain free days ahead and no downer news.  I am praying my Mom will have a great week and a normal gall bladder operation and will be able to eat chocolate once again! I continue to pray for the poor people in Japan (my co-worker's family members are all safe although they experienced some property damage from the quake).  People locally here in Missouri are buying potassium iodide pills like they buy milk and bread before a snow storm.  Wacky!  That radiation would have to travel a long long way to get here.

Monday, March 14, 2011

March Headache and Migraine Disease Blog Carnival

Life Hacks: Tweaking Work and Life to Deal with Migraines

Great entries this month on how we live and cope with headache disorders.  Diana Lee has helped me gather the entries this month, and had a great suggestion for an addition.  Nancy Bonk has asked for a call to action from migraineurs concerning the problems we have getting taken seriously by healthcare professionals.  Please read her post Migraines, Stigma, Suicide - Stop! and give this subject serious thought.

Nancy has another great post This is How Migraines Have Tweaked My Life with some hints on how she makes it through each day with debilitating headaches.

A taste of South America spices up Betsy's migraine journey, described in La Migrana! at MigraineJourney.  Glad there are those of us who are able to have adventures in different countries!  A beautiful photo makes it look warm and sunshiney.  Sigh.

Teri Roberts at Putting Our Heads Together has some great info in Migraine Life Hacks: Dealing With Migraines. Terri has some great tips on managing migraine disease and triggers with some extra tips on using technology to leverage your day and some links to extra resources. 

While Tweaking Life for Migraines Migrainista has learned to be more flexible and innovative in dealing with migraines and their effect on her life.  Kelly at Fly with Hope has a great post about how chronic illness and migraines have changed relationships in her life.  I think we can all relate to Friendships Within and Outside of the Chronic Illness Community.

Kathy from Australia gives some great tips on how she is able to get around town using her trusty backpack!  I'm thinking I may have to invest in a sturdy backpack and a barometer myself after reading her post Sydney by Backpack and Barometer.  Gretchen at There Be Migraines Here has some great analogies in her Life Hacks post.  I will never be able to shake up a Coke again without thinking of this post and my head!

Diana Lee at Somebody Heal Me lets us know some easy tricks about looking good in her post Simplify Life with Migraines & Chronic Illness: Beauty.  Some very practical ideas and some recommended products that she has found helpful. 

More Than a Little Tweaking Required is the entry from Sue at InnerDorothy.  Sue lets us know how she manages her pain on a daily basis while still maintaining an active work life.  I love her comment "I relegate pain to a low place on my day to day priorities of living"  That's putting pain in its place!!!

I write a little about tweaking life and work environments in my post Taming Headaches.  Hope you find something useful in my entry!

This has been a great bunch of posts, and a great response to Diana Lee's blog carnival.  I found something new to me that I could use in every post.  Join Diana Lee in April for the next carnival!

Saturday, March 12, 2011

Taming Headaches

Tweaking Life and Work Environments

I have had severe headaches all my adult life.  There were years when I only had a couple of migraine episodes per year and years when I averaged three to five migraines a week.  My migraines ceased after I had a hysterectomy but the current headache condition I have (called hemicrania continua) has been with me 24/7 since 2007.  I have a few tricks or life modifications that have helped me manage my life with headaches and sometimes mitigate the pain a bit or appease The Headache before it roars into all consuming pain.

Because I am very short and I work in offices and at home on computers at desks not designed for very short people I try to make sure my work environment is ergonomically correct.  Putting stress on my arms, shoulders, neck and legs from sitting in a chair that is too high off the floor for my feet to touch or a desk surface I have to reach unnaturally for the keyboard or mouse creates an unhealthy environment for The Headache.

I use some basic guidelines when arranging my workspace. As a rule for persons without bifocal or trifocal glasses your eyes should always be straight across from the top one third of your computer monitor.  If you have bifocals or trifocals and you do NOT have to focus on the desk top and back on the screen I suggest getting single vision glasses at the strength you need to see the computer monitor.  This way you will not be tipping your head back to see with your higher strength lenses and putting strain on your neck and shoulders.  You can also have "computer bifocals" specially made for working with monitors. Instead of having a very small bifocal area ground into the lens where you have to look down through that area to use the magnification these have large bifocal areas with the line for the bifocal almost in the center of the lens.  Coated or colored lenses can help if you have light sensitive eyes.  Another quick and inexpensive fix for multi focal lens wearers is to put your computer monitor up on a large phone book or monitor riser so you can look through the bifocals without having to hold your head at an uncomfortable angle.

I avoid working in the dark with a computer or even watching television in the dark.  Even just a smidgen of low level lighting helps me avoid the high contrast issues I have with a lighted surface floating in darkness.  For some reason The Headache becomes very annoyed with extremely high contrast lighted surfaces in a dark environment.

I make sure my feet are not dangling and that I am not slumped in my chair while using a keyboard or computer.  I also make sure my hands and forearms are as close to ninety degrees from my body as possible when working at a desk surface, using a mouse, or keyboarding.  I also make sure that I keep my hands properly aligned with my keyboard and keep my wrists elevated.  In order to keep my feet from dangling I often have to have a step stool or a support for my feet because of my short stature.  Even if my chair went closer to the floor then my eyes and arms would not be correctly aligned with the computer, so supporting my feet is much more practical.  This reduces body fatigue and stress on the back and arms.

I segment tasks (even tasks like sweeping the floor or doing laundry) so I can work at headache friendly intervals.  Exercise is an enormous trigger for The Headache so I have learned that physical exertion in thirty minute segments or less is optimal.  My sister is a sweetheart and helps out occasionally so I can get household chores caught up, otherwise it just keeps piling up with me chipping away at it bit by bit.  At work I try to arrange my work in segments where I can stop and rest both my body and my eyes.

Fluorescent lighting can be an issue.  Sometimes I have had half the fluorescent bulbs removed in a room so the light is less intense.  There are covers you can purchase that will selectively filter the light in each fluorescent bulb.  There are diffusers that fit in the fluorescent fixtures that focus the light directly downward (task oriented lighting) instead of the most common ones that spread the light throughout the room.  Using incandescent lights where possible also reduces the fluorescent glare.  Coated lenses or colored glasses can help with this also.  Visors help also, creating a shadowed area in the upper area of your face.

My worst problem at work is odor.  Food odors from the break room, scented candles, hot laser printer toner, perfume or colognes used by coworkers, soaps in the bathrooms, air fresheners, and even car exhaust fumes going to or from work are big issues.  I can block out noise by using ear plugs, but nose plugs are uncomfortable and just not stylish.  I avoid the smelliest rooms but in a small office odors carry.  I guess it wouldn't be so bad if I wasn't so nauseated most of the time!  I use mentholated rubs under my nose sometimes to cover up the other odors but then unfortunately I smell like mentholated rubs.  Maybe some reader out there can give me a tip on this!  I certainly can use some!

I have been lucky in having employers who were cooperative in creating a headache friendly workspace.  Hoping that you can find a trick or two in this post that will assist you in creating a space where your head likes to stay!

Off subject, but worrying about the extended family of a coworker whose mother is from Japan. He said his mom had been trying to reach relatives in Japan to make sure they have not been hurt in the earthquake/tsunami but had been unable to get through. Praying that they are all OK and out of harms way.

Hoping everyone will be having a pain free weekend and a great week next week!

Wednesday, March 9, 2011

Preoccupied

My Role as Caretaker

I haven't blogged for several days.  It's not my own stinky health (which remains as stinky as always) that is the reason for my silence but my mother's health.

My mother has been having bouts of dizziness, nausea and vomitting going back almost to Thanksgiving.  We were pretty sure she had had another stroke at Thanksgiving, but she has also had very sharp pain in her right side.  I think she was afraid it was a recurrance of her colon cancer, so she just decided to ignore it.  Certain foods she decided she was "allergic" to because they made her sick.  I wondered what the problem could be a few weeks ago since she kept saying she was having a headache and then vomitting, but I couldn't get her to go to the emergency room or to her doctor.

Friday night I was up most of the night with her.  I was sick myself from The Belly and a flareup of pancreatitis, but hadn't eaten anything all day so I knew it was not something we both had eaten.  I tried to get her to go to the emergency room.  The pain got better, she threw up, and then finally went to sleep.  Similar story Saturday night.  Sunday she slept until 2 in the afternoon, and then said she was having difficulty seeing.  I finally convinced her to go to the emergency room.  I did not go to the closest one because it is a very small hospital with limited imaging equipment.  I took her to one she had gone to in the past that had full laboratory and imaging equipment and full time emergency room doctors.

We arrived at the ER and were quickly sent to triage.  Her blood pressure was extremely high.  She appeared dehydrated (not surprising since I could not get her to drink any liquids for two days) so the nurses immediately put in an IV start kit and drew blood for tests.  The doctor saw her within 15 minutes of our arrival, did a physical exam, ordered a bolus of IV fluids, and a gallbladder ultrasound.  My mother was extremely tender in the gallbladder region and the nausea and pain had been starting withing 20 minutes of eating.

Her blood pressure and her heart rate dropped during administration of the fluids and she said her vision improved so I am sure dehydration was causing these symptoms.  Within an hour of having the gallbladder ultrasound done her doctor came back in and said she had a couple of problems that needed to be taken care of:  her gallbladder was full of stones and showed signs of inflammation so it needed to be removed, and she had a medium sized aortic aneurysm that might need to be looked at by a surgeon.  He told us he was going to admit her and had talked to a surgeon (whom I knew to be a good general surgeon) and he would come to my mother's room and talk with her the next morning.  The doc then left the room.

My mother started getting agitated.  Her blood pressure monitor alarm started going off again.  She kept saying (like a little kid) "I want to go home to my own bed!".  The more people tried to talk to her about how serious this was the more stubborn she got, the more agitated she became, the more paranoid she was, the more hateful she spoke, and the higher her blood pressure went.  I talked with her, three different nurses talked with her, the ER doc talked with her twice.  She insisted on leaving against medical advice, but the problem I had was that I don't think she even realized what the medical advice really was!

She accused me of conspiring with the nurses to put her "in the number 2" which is the old state mental hospital number two which has been closed for about 20 years.  She said I needed to be made inpatient because I needed the surgery not her.  She said the doctor was making all the results up.  She said she never saw a doctor.  She said a doctor told her once never to have surgery ever ever again.   She insisted on leaving.

She refused to sign the AMA paperwork because they "wrote" on it, although she couldn't read what was written, understand what was written, nor could she repeat it when it was read to her.  She said I had called ahead and arranged a room because they put an IV in her when she was triaged.  AUUUUGH!!  The doctor told her she could die from these problems, but I don't know if she ever understood what he told her.  The staff was all so nice and tried to get her to stay, but she was so upset she was shaking.  They finally just witnessed that she had had all her options explained to her, and I took her home.

I was flabbergasted.  My mother had been like this when I brought her home from the hospital after her surgery for colon cancer several years ago.  She had difficulties with anesthesia and ended up in ICU for a couple of days needing assistance to breathe.  She never really reconnected with reality until after she got home a few weeks, which was about a month and a half later.  This is more common than most people know, it is called ICU pychosis. It is a temporary break with reality brought on by ill health, tons of medications, drastic interventions like ventilator machines, and a disconnect from everything you know.  My mother most certainly had a small stroke at the same time, which I believe heightened the effect.  I just never thought about her doing this again!!!

I got Mom home, where my bothers and sister were also upset because she had refused treatment.  I said I just didn't know what else to do, the only other thing would have been to leave her there and I just didn't have the heart to do it, even with her accusing me of strange things.  I hoped getting her back in a familiar environment might get her calmed down and her blood pressure better.  I found out that she had not taken her blood pressure medication for at least the last couple of days - probably due to nausea - but hadn't told anyone.  I am monitoring her pill minder now, she has never missed doses like this before.

She slept most of the next day, but agreed to go see her PCP (the same as mine) who is a very nice young doctor on Tuesday.  I told her that he could read the tests and give her a second opinion (or first opinion in her mind because she said she never saw a doctor) about whether or not surgery was necessary.  Being in familiar surroundings did help, and getting her back on schedule with her blood pressure medication also was a good help.

We went Tuesday to the PCP.  Her gallbladder ultrasound must not have been very good, as he got her in to see a surgeon today (Wednesday) and the surgeon said it has to come out.  My mother is very passive and not agitated at all about having it out now.  Next Thursday the gallbladder will hopefully go bye bye without any scary complications.  She sees a vascular surgeon at the end of the month, as apparently the gallbladder was scarier than the aneursym so needed to be taken care of first. 

My mom complained today about having to see all these doctors and all the trips (since she has to go in for preoperative testing).  I told her if she had gone into the hospital Sunday, she maybe would have been home without a gallbladder already but now we had to go about it this way.  I am hoping she will not do the mental "disconnect" again when going in for surgery and presurgery testing.  She is oriented to time and place now, so hoping she will remain this way.  Maybe they will give her something to keep her calm?   Sigh.  Concentrating on keeping her well until then.  Getting old is not fun.

Friday is the deadline for this month's blog carnival for Headaches and Migraine Disease.  I have mine three quarters written, and need to get it posted!!!  Looking forward to reading everyone's entries!

Tuesday, March 1, 2011

March Headache and Migraine Disease Blog Carnival

Helping Diana Lee Out

I am hosting the March Headache Blog Carnival, giving Diana Lee a rest from Carnival hosting duties.   After realizing the amount of spam sent to the blog carnival address, I can see how she needs a rest.  Whew!  Below a description of March's theme that I hijacked off Diana Lee's website!
The theme of the March 2011 Headache & Migraine Disease Blog Carnival will be "Life Hacks: Tweaking Work & Life to Deal with Migraines." As always, feel free to interpret this topic however you like.

Feel free to post comments or contact me directly to ask any questions you might have. Please spread the word to any migraine or headache, pain or chronic illness bloggers you know and consider posting an announcement on your own blog if you have one.

For more information about the carnival please visit the main carnival page: Headache & Migraine Disease Blog Carnival.

Entries are due by midnight (the end of the day) on Friday, March 11, 2011. The carnival will be published here at No Extended Warranty on Monday, March 14, 2011.


Thank you for your continued support of the Headache and Migraine Disease Blog Carnival!
I want to do Diana Lee justice and hopefully pay it forward for her dedication to educating the public about all aspects of migraine disease.  Looking forward to reading some real entries, however I now know of a great number of sites that will educate me to be a nurse over the internet OR get me a job as a judge OR increase my sex drive OR maybe all of the above.  WooHoo! Win win!