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???

Emergency Room Blues

Ready To Start Feeling Better

Went to work today.  I had been undermedicating The Legs because I wanted to be clear headed to talk to my boss about my inability to travel and my declining health and work.  I did take some "minor" pain medication this morning (trammadol) even though it makes me very very nauseous because I don't think I could have been able to take the pain of driving to work without it.

I got to work and got busy very quickly.  I trained the new guy on how to fix some things in the system, and with a few people on several projects, and spoke with the clients up in Michigan.  They are very nice people up that section of the country.  If it wasn't so durn cold I would be tempted to move there!  I made a mistake by hitting ENTER too soon and then was able to show the new guy "Look this is what happens when you aren't paying attention and this is how you fix it!"   I don't think database maintenance and pain killers are a good mix.  I suspect if I checked the information the pharmacy gives me with my meds it would be there under cautions:  "Use caution when operating machinery or when working with large groups of data".

I had a talk with my boss.  (Did I ever mention how much I love my job?  My bosses (three active and two retired) are a big part of that.) I explained about how I just am not able to travel anymore, and how I don't feel I am pulling my weight, or doing my part.  I stated that I am disappointed in myself and feel that because I cannot tell from day to day sometimes how I will be able to function I am letting the entire company down.

The Big Guy let me know that he thought that I was doing pretty well despite my misgivings.  He said that he would make sure I did not travel this year, and that it was time for the Junior Varsity team to step up to the big time with traveling.  I said I could travel if they absolutely needed me to, but that he would need to expect that I would miss work recovering from the trip after I got back.  He said, no I could stay back at the office, and just be available to them on site by phone.

I told him I could not say what the future holds with my declining health, and that I could not even say to any certainty what kind of schedule I could handle.  He said to just do what I can and that would be good enough for them, and he would let me know if it wasn't.  He said he was satisfied with my work even if I wasn't, and that I was always able to keep going at what he considered a great level of quality.  I guess I'm glad I'm not my own boss because I would be chewing my butt right now because I just feel like I'm struggling.  By the way, have I mentioned I love my job lately??  Well, I do!  And it seems like I will be keeping it for awhile longer...and I won't be traveling.  Big sigh of relief!

I guess all my worrying and doom and gloom was for naught.  I just have awful luck (as you can tell from all my health issues) so I was just certain that my ride was over at work.  I could not concieve being able to continue working at my reduced hours.  I just felt like I was not able to think and perform at the levels I am accustomed to.  I tried to lay it on the line warts and all and was told let's just take it as it comes and do my best, and that my best was generally much more than they expected.  That was so nice to hear because my morale really needed a boost.

All my coworkers were glad to see me too, even when I feel my abscences put much more pressure on them.  I don't want to work anywhere else - I want to be able to retire from here.  I was ready to do it today if my boss felt it was time. I'm glad I can hang around a little while longer  because there is always something new and challenging for me to do!

I worked seven hours today but didn't really feel well.  Driving home this evening I was still in town when I felt like I couldn't breathe.  I pulled over and tried to breathe slowly.  If felt like an asthma attack.  I had several cold induced asthma attacks in Michigan, and this felt like that also.  My PCP had thought that I may have had pneumonia with the flu a few weeks back but had gotten over it.  My chest and ribs hurt in addition to the pain I was already having with The Legs and The Belly and The Head.  I decided to go to the emergency room to make sure I didn't have pneumonia because the pain didn't seem to be decreasing.

Once you have had cancer every time you go to an emergency room they are going to run blood work and possibly x-rays.  Once you have chronic pancreatitis every time you go to an emergency room they are going to run blood work for elevated enzymes, especially if you are having abdominal/chest pain.  Giving a health history is time consuming and tiring.  I have noticed that the electronic medical records used by my in-network emergency room has eliminated some of the repetition. 

I got an IV set installed, although I did not receive an IV.  The nurse listened to me after the first dry hole and used a pediatric set in my wrist and it went in the first try!  Then she did a trick I had not seen before to get the four vials of blood for the labs ordered.  She pulled the tops off the vacutainer tubes (what they put the blood in) and took the end off the IV lock and then let the blood pour out of the unrestricted IV site.  Mine didn't really pour out but she was able to get three vials, and then used a syringe to suck the rest out for the fourth vial.  She said you need to twirl the vacutainer as you spill the blood into it since vacutainer tubes are coated with an anticoagulent on the inside.  She said she worked with babies and this is how you had to do it with them if their veins were too tiny.

I wasn in more pain than I realized. The Legs were especially bad at the jumping can't keep still stage.  My blood pressure was 168/96 when I arrived and soon climbed to 208/102.    This makes the automated blood pressure cuff monitor alarm start beeping.  It beeped for almost three hours! That caused The Headache pain to increase and the position I was on the ER bed made The Belly pain worse.  Augh!  Finally the pain overload I was experiencing started to decline and by the time I left at midnight my BP was back down to 170/86.  The doctor offered me pain medication and I told him that I had plenty of pain medication at home but it doesn't work if you don't take it.  He said maybe I should review my pain management strategy as my blood pressure was proof that not medicating was a bad idea.

The end result of a nuclear lung scan, blood tests, and a chest XRay was a diagnosis of bronchial spasms and a bronchial infection.  I came away with scripts for new inhaler medication and antibiotics.  I am sure this will help me breathe and feel more energetic.  I had a borderline high test called D-dimer which is why I had the nuclear lung scan to make certain I did not have a pulmonary embolism.

I made it home, and I did take some dilaudid in addition to my regular evening meds.  I am now tired, but in less pain.  I think I am going to bed soon.  Hope you all have a great day today!

Communication

Conversation Started

I let one of my bosses know how disappointed I am in my current ability to work and contribute.  I said I committed myself to seeing the business through the stream of installations and conversions last year, I am just very unsure how I can do that again this year.   I am not sure yet what I am going to decide, but I know that The Legs are my major obstacle right now.

I hope to talk with them next week, and see what they want to do and let them know what my limits are and if that is still acceptable for them for work.  I have thoroughly enjoyed my work with them.  I love their company, I love what I do - or rather did since I have cut back this fall.  I believe in their vision and feel that it is just going to take a little tip forward and things are going to take off even better than last year, which was a very good year for them for new business.  If my bosses think that we need to make a parting of the ways I will be sad, but they have been more than fair to me. 

I just can't in good conscious continue to be so unreliable and so illness prone as an employee.  I have ended up ill or unable to walk after the last two trips and have missed a couple of weeks of work each time.  I ended up in the hospital last summer probably as a cumulation of not taking care of The Belly properly while doing installs.  Not only do I feel bad about missing work, but it costs me money and it costs my employers money especially with insurance premiums and for lost man hours.  I hate that I have just gone from one illness to another the last few years; I had gotten a clean bill of health before I started this job nine years ago.

Incapacitated by this or that during the last seven years I have been injured financially also.  Co-pays, deductibles, out of network deductibles, travel to specialists, medication costs, missed wages have worked together to ruin whatever little credit I had.  I am lucky because my home has no mortgage, but even paying real estate taxes has been a struggle.   Not only do I have my own financial medical issues, I have my mother's also, and have been helping my brother pay for his prescriptions. 

I am terribly whiney tonight.  The lower dose of neurontin is not helping The Legs very much, and I am reluctant to keep supplementing with pain meds.   Feeling tired and woozy, think I will sign off and go to sleep!

O Tannenbaum

Ready for Christmas

My older brother helped decorate my Charlie Brown Christmas tree today. Last night in one of my sleepless tries at distraction I managed to drag it out of the garage, but I couldn't find any of my Christmas decorations. My younger brother helped us organize the garage last summer, and my malfunctioning noggin couldn't remember where we had put anything. I was lucky I had covered the tree with a big pink sheet last year so it at least was easy to find.

My mom was so pleased to have the tree up even in its sad kind of bedraggled state with no ornaments. My brother took pity and went and bought more lights and some ornaments in town and decorated it. It was transformed by the time I got home, and my mom was delighted. The biggest benefit of my procrastination is that he got all the ornaments 50% off! I guess it pays to buy your decorations close to Christmas.

I have two days off this week for Christmas Holiday. I have one day off next week for New Years, and a floating holiday I will save for later. I am sure I will end up having to use it for some sort of sick day. I haven't really had a vacation in the last six years because of my terrible luck with health issues - all my time off is used for illness. I have the best bosses in the world to have put up with me and my defective body for this long!!!  I just wish I was physically in better shape to do the job they need me to do.  Sigh.

I had a great day at work, got many things done. I have to say I'm a purdy darn good trouble shooter. Now as a fixer, I'm just not as talented so it takes a little more work for me to fix things. Some I won't even attempt - best left for the professional programmers.  The Legs are bad for an hour two each day after I get there, and the same way when I get home so I am paying a price in pain for every trip.  Being able to be productive in spite of The Legs is making me happy.

To make my day even better, I was visited by a good friend at work. I was able to talk with her a bit, and go out and visit for a minute with her husband. She has the most positive attitude of anyone I have ever met, and perseverance that surmounts any obstacle. I tell her we must be long lost cousins because her family is just about the same as mine!!! She had not seen me since I had started using my cane BLING, and somehow it hadn't really occurred to me that using a cane would be a difference that was noticeable. I guess BLING is rather shiny.  We have been friends for over 15 years but I am sure neither one of us looks a day older!

I am on a new diabetic medication, Januvia, along with metformin. I ended up going to Dr. Kid's office and seeing Dr. Kid's endocrinology physician assistant, Ms. Cheerful. We discussed my options because of my refusal to take Actos (cankle maker extraordinaire) and my chronic pancreatitis. Dr. Kid wanted me to take Byetta which has the added benefit of causing weight loss but because it works by holding food in your stomach longer this won't do for me. Ms. Cheerful agreed.

Your pancreas starts producing exocrine enzymes (lipase, protease, and amylase are three main ones) to digest things in your stomach the minute something hits your stomach and keeps on going I guess until the food gets down the digestive chain a little ways. Holding food there longer would just be an exercise in increased pain that I don't want to experience. Januvia has caused problems with pancreatitis also, so I guess I will just have to watch The Belly closely for a while and see how it goes.

I got a couple of letters from Dr. Kildare's office today.  One was rescheduling my March 2011 appointment.  Sooner?? I thought incredulously.  No way!  I was rescheduled from Thursday March 24th to Monday March 28th because Dr. Kildare is not going to be in the office on the 24th.  The other letter was from Nurse Goodguy telling me that one of my blood tests was normal (CPK).  No surprise there.  Time is ticking while I am sure Dr. Kildare and Nurse Goodguy are pondering over my extensive medical record trying to come up with a treatment plan for me and The Legs.  I give them two more weeks after this Friday.  Somehow I think they are going to miss that deadline. 

I think that time actually must flow differently at Dr. Kildare's practice.  A month for me must be like a day to them.  That's my theory of relativity for medical appointments - the closer you get to the speed of "more time to deal with you than I think my time is worth", the slower it gets to your next appointment.  From the doctor's point of view however, it is a blink of an eye and there you are again: older, grumpier, not any better, he still hasn't bothered to review your records, and he can't figure out why you aren't pleased when he can't even remember why you had an appointment and doesn't have an answer for any of your questions. At this point if the doctor is not careful you reach critical mass and explode right there in front of him.

Revolt of The Legs

Living in Quandary

Have I mentioned lately I love my job?  Even with the travel, even with the pain, even with the fatigue I love doing what I do.  It's hard to define why I love it because what I do is not set in stone, it varies from day to day, sometimes it's not easy or pleasant, and physically even though it is a desk job it is becoming difficult to do.  I enjoy everyone I work with.  My bosses are great and supportive - plus they know what they are doing and are passionate about what they do.  It's intellectually stimulating and mentally challenging. I work with healthcare administration and healthcare finance which is a field I chose to work in approximately 20 years ago. I get to work with small hospitals all across the United States many in rural areas, and advocating for rural healthcare is another passion of mine.

My sister said when I got this job over eight years ago that I had found my dream job.  She was right!  I campaigned for this job.  I could tell from my first interview with them that not only did I want to work there I HAD to work there.  It was a big change for me.  I went from mega corp to tiny corp; from tons of direct reports and fiscal responsibilities to no direct reports and no fiscal responsibilities.  I went from exasperated and aggravated to excited and engaged.

I am sad tonight, not about my job or my work, but about whether I am going to be able to continue with my job, my work.  My body is not recovering well from my last trip.  I fear increasing disability, increasing medication, increasing pain.  I am wondering, am I now really disabled?  Is there someway to absolutely know?  I have great amounts of will power and have been using it to keep going but now even that may not be enough.

I experienced a great deal of pain in Michigan, and medicated and kept going even when I shouldn't have.  Even getting in and out of cars was becomming difficult. Coming back, in addition to the adventure of the flying puke fest, I experienced a great deal of difficulty walking and standing.  Flying is always an issue because of the walking necessary, and the standing necessary, and getting on and off planes while hiking a PC and a carryon full of medication.

Last weekend was frightening as the leg malfunctioning continued to evolve.  Saturday walking was very difficult.  I felt like I was shuffling along or using my thigh muscles to scooch the legs where they needed to go.  Saturday night the pain was pretty bad.  Sunday morning I woke up with big round numb areas in the bottoms of my feet and my legs tingled all the way up to my hips.  Before Sunday, the tingling only reached about six inches above my knees.  I felt very tired.

It is now difficult to get up from a couch or a chair.  I feel my legs are very weak.  The pain increases and decreases throughout the day but I ended up going home early today because of it.  Driving is hard, sitting is hurtful, and walking is an ordeal.  My incontinence issues started increasing almost two weeks ago and have settled into a new kind of normal that is worse than it was before Michigan.

I saw my PCP today and we discussed these issues.  I could not move my left leg, my left knee, my left ankle, my left foot against resistance.  I could barely move my right leg against resistance.  My reflexes have been gone almost a year now, and I think the damage decided to take another leap forward (or perhaps that would be a leap backward??).  I am much worse than I was a couple of months ago.

My PCP wants me to get EMG testing, even though I told him that Dr. Sassypants said there really wasn't anything anyone could do. I don't have structural issues that can be fixed. He also wants me to go back to the local neurology group which I really don't want to do.  I have issues with that practice, and he really doesn't have anyone else he can refer me to.  He knows why I don't want to go back there but felt like this is urgent enough it wouldn't pay to try to get established somewhere else out of the area.

When The Headache was in its full undiagnosed horror I had a neurologist, Dr. Dense, in that group that not only did not listen to ME, but also ignored the advice of the neurology group she sent me to in St. Louis.  She refused to prescribe the only medication that works for The Headache which they had prescribed in St. Louis for a few weeks until I could get back to her. After a month without any pain relief she told me she would only prescribe the medication that worked (indomethacin - NOT a narcotic)  if I signed a paper saying I would move my care to another practice! Totally unethical. I'm not thrilled at the prospect of seeing her again.  My PCP says he will speak to the head of that department but I don't think I will have any luck getting reassigned to a different neuro.  sigh. I have absolutely no confidence that Dr. Dense will be able to help me at all.  A waste of time, money and effort that I can ill afford.

Per my PCP, I am to stay off my legs as much as needed to keep the pain at bay.  Unfortunately that would preclude walking at all.  I am to let them know if it gets any worse.  I was told that I may need a fancy schmancy rollerator walker soon, and may have to retire BLING.  I fear even that would be a stop gap measure until I am forced to full out wheelchair time.

My PCP has modern views on pain management, and wants me to keep him in the loop if I need stronger narcotics, and told me to keep taking the Soma also.  With so many people having issues getting adequate medication for pain relief, I am very grateful that my PCP understands and is willing to prescribe.  I am very sparing in my use of pain medication (although I did take some tonight) and am still working on prescriptions I filled last spring.  He would like me to take more and do it on a schedule in order to stabilize the pain, but right now I am willing to be in some pain in order to function at a higher level.

I have an appointment with Dr. Calm to discuss the cyclosporine and The Hives tomorrow.  I took blood tests for that today.  All these appointments are crammed together because I had to reschedule while in Michigan because we extended our stay.  Already tired of seeing docs!

Going to bed soon, as my pain meds and my antihistimines are making me sleepy.  Hoping that maybe The Legs will be better by next week.  Sigh again. This way I can delay making any decisions I don't want to!!

Hey, at least the cankles are better!!!  And if I have to get a rollerrator walker, I'm gonna trick it out with spinners, rear view mirrors, and a special paint job - and maybe curb feelers and some fuzzy dice, and one of those horns that plays songs!!

My Head Hurrts

But I'm going to Work Anyway

Bad night last night, bad day today. I have already worked over 40 hours this week, and I have eight hours left. Every time I try to increase my hours, increase my work load The Headache pays me back. But I'm determined to keep trying. I want my life back, unreasonable and as unlikely as it is to happen.

I have a CT of my pelvis, lower spine and abdomen scheduled for Monday morning. My PCP is sure that I have some kind of bone problem with my nerves, and since this has been going on for some time insists that I do this. He also wants to make sure I don't have metastasis in the bones. One more co-pay, one more exposure to radiation, one more time to see that I don't have cancer anymore. I'm just tired, too tired to worry any more.

Going to work in a few minutes, very bad headache today not responding to the stimulator, but am going to try to work through it. Using my benedryl phenergan mixture, but so far no help. Doesn't bode well for the weekend. Sigh.  Or probably this evening. Sigh.  Or this afternoon. Sigh.....

My left eye is piercing pain, and my thinker is not thunking correctly.  Bear trap in my brain has been tripped and has clamped on my synapses and won't let go!!  Good side effect from having The Belly pain and The Leg pain, I have lost six pounds in the last two weeks.  I am going to Woo Hoo for that!

Duty calls!  Heading down the highway!

The Headache Persists

Pain Racked Head

Since receiving the injection of decadron last weekend The Headache had faded into the background at its normal levels of pain until today.  I only worked a few hours Wednesday and Thursday but needed to be at a meeting this AM at work, so came in early and stayed for the entire day.  This evening The Headache is trying to escape again.  I have been taking percocet for The Belly pain, and perhaps that is aggravating The Headache, hard to tell at this point, or maybe the steroid is starting to wear off.

I have at least another two weeks of travel to the client, will try and rest to see if I can get it done.  So far I have accumulated over $500 in ER co-pays just trying to be well enough to keep working in the last two months.  Doesn't seem practical or logical to keep doing this - but if I don't I can't keep working.  Big Sigh..

I have a claw of pain ripping at my head - trying hard to keep the stimulator programs varied to stop the progression.  It's helping, but it's not keeping me ahead of the pain with the increased working hours and activity.

One of the symptoms of hemicrania continua is that for a lot of us the pain gets worse with exercise.  For me that can be just simply driving my car, buying groceries, sweeping the floor, or walking up and down the hallways at a client's hospital.  The longer hours I've been working coupled with more physical activity has The Headache stirred up.  I have read with envy accounts of  people who are able to increase their natural endorphins by exercise.  I hoped that the stimulator would control the pain enough that I could get back to a more active lifestyle, but it ain't happenin'. 

Tired but not able to sleep tonight.  Ready for a lovely day tomorrow and a smooth pain free brain.  I am going to go to bed with positive thoughts to populate my dreams.  I'm breaking out with small hives all over, probably from the percocet .  I guess I will have to discontinue percocet and rechallenge to make sure that is why I am hiving.  Sigh again.