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!!!

Wylie Coyote Kind of Day

I Keep Trying

One of those days, one of those weeks.  Head hammering like an Acme Anvil dropped on it, nerves on fire but pain medication makes the head worse, so will try not to take any for awhile. I'm getting used to hurting so I just need to toughen up some.  Accomplished a lot today, but am paying for it this evening.   Not sure somedays why I even make the effort to do anything, because someway somehow it backfires, just like when Wylie Coyote tries a new surefire way to catch the Roadrunner. 

I worked late today getting my new office space somewhat in order.  They just moved my stuff in to the former occupant's desk(s) and only removed the former occupant's stuff that was ON the desk(s) or on the walls.  My stuff, a lot from the recent implementation was sorta strewn all over the place.  I cleaned out drawers nicely and neatly and put the stuff in my former office holder's new office.  I even assembled one of those wire Pendaflex file hangers for her drawers (she is out of office this week) which for me is going above and beyond the call of duty - I hate those things with a passion.  I just didn't want her to have to come back to the office and then do all that too in addition to putting things away.  She's been really good natured about the move since she works from home mostly, but she got put back in a way worse space, although it is much quieter and out of the way.  I have partially rearranged my new space so it is more conducive to how I work, and may stay late tomorrow (I guess today) to hang pictures and arrange the heaviest thing there - a big wooden desk.

I now have a good sized pile of shredding to put in the shred box, I keep everything from an implementation until about a month afterwards to double check that I have covered everything that needed done, so this can be a pretty good sized pile of paper at the end.  We start the next implementation training schedule towards the end of April.  Hoping my wacky leg nerves will be better by then.  At least there is a clear spot or two on that big desk.  I need more cabling to safely connect my PC to the LAN, right now there is cable accross the floor.  I did find enough telephone extension wiring to put the phone safely where I wanted it.

Trying to eat small meals more often at work, but keeping anything down is a struggle.  Wasn't successful yesterday, but today was a little better. Will keep working on it to see if it makes a difference.

Not much going on in my world, just trying to work.  My nephew-in-law got back from China, and promptly had to go to the hospital as he brought back some kind of Chinese bronchitis.  He thought he caught it on the 13 hour plane trip home.  No matter how completely the air is cleansed in an airplane, it is impossible to avoid exposure when people are hacking, sneezing, coughing, or vomiting in your general vicinity.   Probably next fall's flu virus just being premiered before the prevaling winds bring it over from Asia to America.  He found the people very kind and gracious, just wished he hadn't caught whatever bug it is he has.

PS - The Headache is not good this evening, so just ignore the misspellings and typos. The hands and the brain are not coordinating..

Nerve Agony & some Relief

Pudendal Pain and Sciatica

My neuropathy has been going off the scale painwise the last few days.  Went to urgent care Tuesday afternoon just to make sure I didn't have a urinary tract infection or a problem with The Belly.  Sometimes I get in so much pain everywhere it get's hard for me to determine what is happening.  When the tests for that came up negative, I then got an appointment with my PCP yesterday to see what I could do for the nerve pain.  He presecribed a medication that is in the muscle relaxant class, but seems to disconnect the nerve pain somewhat from the brain, called Soma or carisopordol. 

I am down to where it is very painful to walk, lie down, stand, sit, or drive a car.  I think its a combination of all the walking and standing I did at the client's last month, the prodding and poking at my cancer exam, and trying to clean house like a normal person (mop and vacuum).  My feet are freezing, but the pain is like fire through the bottoms of my feet.  The muscles in my right leg are all bunched up (the right side is more painful this time) and I have nerve pain right through the middle of me in the "saddle" section.  The percocet I have doesn't even touch this level of pain.

My PCP said that lack of sleep lets the pain build up because sleep lets the nerves discharge and the muscles rest.  Well, I've not been able to sleep well for months, but last night I was able to.  He said I need to just sleep for a couple of days, take the percocet and Soma and see if I can get the aggravated nerves to go back to sleep.  Not sure if I can, we are short handed at work.  Not sure if I can work, I am so in pain. Augh!

I was able to work from  home yesterday, but the problem is that sitting up very long is very very painful.  I haven't called in yet.  I feel so bad for my bosses.  I just get myself where I maybe can be really productive and something like this happens.

My PCP and I discussed my longterm prognosis with this being from radiation side effects.  Not good.  Probably more pain, more disability in my future.  However, I did sleep last night with the Soma. I am in quite a bit of pain now, thinking I should take another one (one every twelve hours is the script and it's been over 12) but will check with the office first.  I wonder if it helps headaches?  The percocet makes The Headache worse.  My PCP seems to think I have high tolerance to pain, but I feel like my pain tolerance is very low for me.  Maybe he sees more people with pain, and in comparison I'm tougher??  Or maybe he just wanted to boost my spirits.

Here is a pain scale from the Pudendal Pain website I found, it is one of the best pain scales I have found out there because it describes in detail the levels, although some migraine sufferers I know can have pain in the 9 or 10 range also.  I think I am at an 7 with the nerve pain going towards a non-functional 8.  Maybe I should take the medication, eh?

 

Comparative Pain Scale
	0	No pain. Feeling perfectly normal.
Minor Does not interfere with most activities. Able to adapt to pain psychologically and with medication or devices such as cushions.	1 Very Mild	Very light barely noticeable pain, like a mosquito bite or a poison ivy itch. Most of the time you never think about the pain.
	2 Discomforting	Minor pain, like lightly pinching the fold of skin between the thumb and first finger with the other hand, using the fingernails. Note that people react differently to this self-test.
	3 Tolerable	Very noticeable pain, like an accidental ut, a blow to the nose causing a bloody nose, or a doctor giving you an injection. The pain is not so strong that you cannot get used to it. Eventually, most of the time you don't notice the pain. You have adapted to it.
Moderate Interferes with many activities. Requires lifestyle changes but patient remains independent. Unable to adapt to pain.	4 Distressing	Strong, deep pain, like an average toothache, the initial pain from a bee sting, or minor trauma to part of the body, such as stubbing your toe real hard. So strong you notice the pain all the time and cannot completely adapt. This pain level can be simulated by pinching the fold of skin between the thumb and first finger with the other hand, using the fingernails, and squeezing real hard. Note how the simulated pain is initially piercing but becomes dull after that.
	5 Very Distressing	Strong, deep, piercing pain, such as a sprained ankle when you stand on it wrong, or mild back pain. Not only do you notice the pain all the time, you are now so preoccupied with managing it that you normal lifestyle is curtailed. Temporary personality disorders are frequent.
	6 Intense	Strong, deep, piercing pain so strong it seems to partially dominate your senses, causing you to think somewhat unclearly. At this point you begin to have trouble holding a job or maintaining normal social relationships. Comparable to a bad non-migraine headache combined with several bee stings, or a bad back pain.
Severe Unable to engage in normal activities. Patient is disabled and unable to function independently.	7 Very Intense	Same as 6 except the pain completely dominates your senses, causing you to think unclearly about half the time. At this point you are effectively disabled and frequently cannot live alone. Comparable to an average migraine headache.
	8 Utterly Horrible	Pain so intense you can no longer think clearly at all, and have often undergone severe personality change if the pain has been present for a long time. Suicide is frequently contemplated and sometimes tried. Comparable to childbirth or a real bad migraine headache.
	9 Excruciating Unbearable	Pain so intense you cannot tolerate it and demand pain killers or surgery, no matter what the side effects or risk. If this doesn't work, suicide is frequent since there is no more joy in life whatsoever. Comparable to throat cancer.
	10 Unimaginable Unspeakable	Pain so intense you will go unconscious shortly. Most people have never experienced this level of pain. Those who have suffered a severe accident, such as a crushed hand, and lost consciousness as a result of the pain and not blood loss, have experienced level 10.

Going Down In Flames

Me and My Pancreas

I now have an appointment with Dr. Gnome in St. Louis on October 16th. I talked with his nurse, and they are requesting more records from my gastroenterologist's office since they didn't include anything from my recent hospitalization, or some of the lipase tests I have had over the last nine months.

Wasn't able to work a full day today as The Belly hurt bad enough that the mild pain killer I took at work didn't touch it, so I drove home and medicated with stronger stuff. This still did not completely kill the pain but it made it tolerable. The pain seems to increase in the evening, so the second dose I took at about 9:30 just isn't doing too much. I'm hesitant to go to the doctor about this before the Dr. Gnome visit because I run the risk of hospitalization again.

My daily meal plan at this time is one meal each day of a poached egg and a piece of toast with jelly no butter and about a third of a cup of applesauce, eaten with pancreatic enzymes. Starting to feel the effects of not being able to eat, rather weak, but I have had to do this for months before so I know it is possible. Have been hydrating much more as I was instructed in the hospital but this has worsened both the diarrhea and the incontinence issues I have from the radiation therapy.

I am going next Tuesday to Washington University in St. Louis to be seen concerning the long terms effects of radiation therapy. I found information while researching this for radiation neuritis in the lower spine, and this seems to match many of my leg symptoms. The problems are not resolving, but keep getting worse and I am concerned about what the end result will be. The weakness is a big issue, since continued standing and walking make it worse, making it harder and harder to travel and to do my work when I am at a client location where I have to walk and stand a great deal. I'm hoping these physicians will have some new ideas on what I can do to make the symptoms better tolerated even if we can't make them go away.

Larry Moe And Curly

Another Doctor Dunce Day

My three kidney stones have officially "left the building" Spent about six hours yesterday in the emergency room, trying to stop vomiting. Finally got that stopped, and XRays show no more kidney stones. I had named my stones Larry Moe and Curly since they were doing a number on my plumbing. The ER doc thought having all three passing was why I was having such a problem with nausea and that the episode seemed to go on and on and on.

Phenergan had not worked to stop the nausea, so we tried Zofran (which a nurse friend of mine had recommended some months ago). It took a lot of Zofran to get The Belly to settle down, but it did the job on the second try. I go to see my regular physician for a followup tomorrow afternoon. I feel tons better today, so Yeah!!

The Headache is still hanging around but just in the background. I can pretend some days it isn't even there! I'm getting so used to the stimulator that I forget it is installed. The worst part is remembering not to jerk my neck suddenly. I'm feeling ready to be back at work full time, and will try hitting it as hard as I can this week because I have several projects to get caught up on. I was not planning on the kidney stone hiatus.

I saw my radiation oncologist [Dr. Dunce #3] for my yearly appointment. We discussed my problems from the radiation therapy from 2004..at least I discussed and he tried to tell me it was not possible. I patiently listened while he tried to blame #1 my diabetes (which started just before I was diagnosed with cancer and has been in excellent control since) #2 my hysterectomy operation #3 the arthritis in my lower spine which coincidentally is only in the pelvic radiation field. He said if I had damage from radiation I would have bled just buckets and buckets of blood. I find that hard to believe, as there are tons of peer reviewed articles that mention fibrosis as a radiation side effect, and bleeding copiously is not mentioned as a prerequisite. I have had thousands of dollars worth of tests trying to find any other cause for my problems, and so far have not been able to come up with anything.

He had not bothered to review my medical records from the last year before I saw him. I find that aggravating. I know he has many patients in active treatment, but take five minutes to glance over the information before coming into the exam room.

This was supposed by be my last appointment with him - I was to be released, but even though he swears I could not have experienced radiation damage he wants to follow me for another year. He said my MRI had evidence of a pinched nerve at S1 on my spine, and I made him read the radiologist's report for me (as I had already read it because I pull ALL tests results for my own records) from my last pelvic MRI and repeat out loud the part that said no stenosis or nerve impingement found. He acted surprised that I have been having pelvic pain and at the same time altered or lack of sensation although we have discussed it every appointment we have had as it has worsened over the years. I guess he only documents "positive" comments and ignores the rest?

I asked him what my next step should be, who should I consult and his reply was to shrug and say "I don't know." Not "let's find out - I need to research this a little longer" or "maybe you should talk to your PCP concerning this" - just "I don't know". Oooh, I felt like screaming! The Doctor Dunces are all from the "I don't know - you figure it out" school of "Ignore it and it will go away" (it being the annoying patient) Medical College. I think they also aspire to the magical thinking theory of medicine - think good thoughts and everything will magically be all better. I'd get better treatment at the Christian Science Reading Room down the road from the Onocology building. At least they take action through prayer!

He also said he would be interested in what I find out. Find out what, from whom?? If he's so interested then refer me somewhere so they will be sure to share the information with him. Otherwise if I have to do all the legwork, I'm not going to have any desire to educate my Dr. Dunce physician.

By the way, I once read there are just two types of people in the world: those who LOVE the Three Stooges and those who HATE the Three Stooges. Which side of the fence do you sit on?? I'm definitely a Stooge lover. Maybe because there is a little bit of Moe in me?

Seeing Dr. Dunce

Once More into The Fray

Had an appointment today back with my gynecologist about the pelvic pain. The gynecological oncologist, who in all his wisdom told me I absolutely could not have the problems I am having from the radiation therapy, wimped out when it came to actually telling me that yes, your problems are due to radiation therapy and referred me back to my gynecologist. This has been a four month journey in frustration that still has no resolution.

Dr. Dunce #1 sent me to Dr. Dunce #2 because Dr. Dunce #3 gave me too much radiation. Dr. Dunce #2, after stating that I could not be having problems from radiation because he Dr. Dunce #2 would never ever prescribe radiation therapy if it gave you so much touble, ordered lots of tests and then sent me to nice colorectal surgeon and nice urologist. They ordered lots of tests, and then told me my problems are due to late effects of radiation therapy. Dr. Dunce #2, who never ever told me the results of the tests he ordered (probably because the result was that I had problems from radiation therapy) referred me back to Dr. Dunce #1.

Dr. Dunce #1 says I'm a gynecologist, I don't know what to do for radiation damage. I said that Dr. Dunce #2 sent me back to you. He said "why would he do that?" I said "My question exactly, I don't have any pieces or parts that pertain to you any more." He says, Dr. Dunce #2 has experience treating these types of radiation treatment problems not me. I say "Dr. Dunce #2 doesn't want to admit that it is radiation damage, but everyone else says it is - so what do I do now? I have pelvic pain, weakness, inability to stand for long periods or walk for long periods, I have urinary and fecal incontinence. I am having to take medication daily for the pain. Who do I go see?" Dr. Dunce #1 says "See the local pain management folks" I say "They say they can't treat it unless they can inject it. There's nothing to inject" Dr. Dunce #1 says, "Maybe a spinal cord stimulator would work" I say nice urologist and nice colorectal surgeon both said radiation damage doesn't do well with stimulators because you already have leaky wiring...and I already have one in my HEAD." Dr. Dunce #1 then says "I guess you need to go to a tertiary center like Wash U in St. Louis to see what they can do. Call over there and see what they say. Maybe they are doing a study or something. These types of problems are progressive, and don't get better". No duh. Dr. Dunce #1 didn't offer a referral or department to call or anything.

No one mentions Dr. Dunce #3, who overdosed me with radiation. I guess its up to me to find my solution, just like I had to find someone somewhere who installed occipital stimulators. I'm calling Dr. Dunce #3, who I have an appoinment with in August, to see what they recommend. I expect I will be told once more, radiation therapy can't be causing these problems. Sheesh! I feel like I'm in that Abbott and Costello routine about baseball, always ending back where I began.

Who's on first? I don't know! Third Base!

On the good side, The Headache is much much better today. Hoping for a productive weekend. I have plans to go to the local tomato broker and buy some canning tomatos to supplement our crop. Then I will have fun processing and canning them!

I have a Power-Head

Can I get a Red Flashing Fresnel Top Too?

Work day today. Didn't last an entire day, but got a lot accomplished. I feel energized - can't tell if its my energizer bunny battery unit or just starting to get over the operation.

Had an appointment this AM with my colorectal specialist. Some great surprise news NOT! Same list I have gone over with other specialists. Nerve damage - check, anal sphincter non functional from radiation fibrosis - check, reduced muscle control from fibrosis and nerve damage - check, overall - no way to fix anything - check. He suggested to preserve what little nerve functionality I have to take biofeedback classes specifically for my pudendal nerve functions. This would be a several week committment from one to two times per week to once every two weeks. I will have to think on this - I am not sure if there is a benefit to it and it means having some type of sensor in sensitive areas..reminds me of the South Park episode when Cartman got an anal probe . I don't want to be used as bait for the visitors...or be under alien control. :)

I'm Sooooo Itchy

New Allergy: Surgical Tape

I have been breaking out in hives everywhere - in my ears, in my nose, everywhere every one of my many bandages is and all the skin in between. Bought some expensive hypoallergenic tape and have been replacing all my tape as I can stand to peel it off. Have three quarters of it replaced by today, and the hives are starting to back off a little. I have been taking 25 mg Benedryl every 4 hours, with 50 mg every 8 hours and the hives still kept popping up. That's a lot of Benedryl but don't think steroids are going to be an option with so many open wounds. There are huge welts everywhere the old tape was. Thank heavens I don't seem to be allergic to the new tape. I can't win for losing...***sigh***

No lifting, bending, or pushing is harder to do than I thought. I just never realized how many times I day I bend over and pick something up. If I have to do this for awhile (the surgery team said it could be up to three months) I'm gonna have to get myself a mechanical arm to pick stuff up! I can't take a bath, shower, or wash my hair until I go back next week to have the stitches taken out, and that is making me feel grungy on top of everything else. Yes, sponge baths are OK, but not the same as a hot shower or a long soak.

The neck collar was creating a ring of hives around my neck, not sure if I was having a reaction to the collar or it was just an extension of the tape problem. I covered the neck collar with a section of pantyhose and it isn't itchy anymore, so it must've been the collar itself.

The Headache seems better today, but I'm still taking some pain meds. Placebo reactions can be as powerful as real reactions, so I just may be on the downside of a headache cycle.

My face is swollen a bit. If I don't get the hives under control, by past experience I will probably get angioedema, if it hasn't already started. Then the real problems start when my vocal cords swell. Hoping to get it fixed before then. I'm very red and very bumpy and very antsy and verrrry itchy. Since I already had hives before I went to Cleveland, hard to tell if the overall hives are still from that or from the tape problem.

Worked a little yesterday, and my noggin seems to be operating better. Only took a couple of hours to interface my program with another and to do a test "print" of the results. I only program when forced to by circumstances. It's something I can do, but not something I want to do everyday. There are plenty of people who love to program, and they are the ones who should be programming, not me. I like to problem solve, but after I figure something out I'm not interested anymore, and have no desire to repeat the process over and over and over again. Just not my cup of tea.

Saw a urologist yesterday that my PCP recommended. My PCP thought I could get a sacral spine stimulator to help with my pain and continence issues from the radiation therapy. At least this doctor didn't say, oh no - radiation couldn't do that!!! He confirmed what I already knew, the radiation damage can't be fixed by medication or surgery or nerve stimulators or physical therapy. It's permanent and probably progressive. My bladder is damaged and most probably all adjacent parts are also. I am sure it was the HDR vaginal brachytherapy that did it.

I go Monday to check with my colorectal surgeon about my test results from last week. I know my external sphincter is severed and partially replaced with fibrotic tissue, not sure about the nerves. The sacral MRI I had showed facet joint degeneration in the radiation field area, but there was no nerve compression to account for the symptoms I am having. From the literature, reconstructive surgery doesn't help if the nerves to that area are damaged.

I guess I'll get the top part of me fixed, and then the rest of me will fall apart!

It's 3 AM - Hoping for a better Today!

Another Sleepless Night

It's in the middle of the night, just not able to go to sleep even with medication. My legs are malfunctioning, especially the right one, and I'm thinking if it keeps this up I will have to take yet another visit to another doctor to get some medication to short circuit the nerves. The last time it was this bad I took something called parafon forte, and it seemed to work marvelously except it made me excessively sleepy. Not something I want to take everyday for sure.

I am going to think of happier things for a little while - perhaps I can lull myself to sleep with happy thoughts. I'm picturing myself by a gurgling creek, with cool springy moss underfoot. I can feel the moisture in the air, and violets are blooming everywhere. The breeze brings the scent of fresh mown hay and newly turned earth. Tree toads are singing, and a mourning dove is calling for rain. The sun glints now and then between the heavey canopy of leaves from the surrounding trees. The pain from my legs is draining out into the wet grey clay by the side of the water and it is flowing away downstream, dissapating into the misty rapids below.

This has not been a great day for me, with the medication I have is just not up to the job. I feel like I have a "raw" nerve somewhere down in the gluteus region. When it goes off it starts a chain reaction that can go on for weeks, and I don't have time for this. Pain, Pain - go away - come again another day! I don't want to play this game anymore this week!

I have read that in rare cases radiation can remove the fatty sheath around nerves in spots (much like multiple sclerosis does). Wondering if this is what has happened to mine...sure feels like mine are misfiring in some way! The leg weakness is worse for me in summer also - I can't hardly walk across a hot parking lot - maybe it makes the nerves heat sensitive also - like an overheated computer circuit! Flakey legs instead of a flakey chip - that's the ticket!

Post Radiation Neuralgia

Pelvic Pain

I should have know yesterday was too good to last. The Headache is normal intensity today, and The Belly is feeling pretty good because it doesn't have to grind on food at the moment, but the nerves in my saddle region are on fire. I actually woke up from deep sleep whimpering and curled in a ball from the pain.

This pain is almost impossible to describe because it is inside riding right along the pelvic arch. I think it is acting up because the doctor was punching around on me the other day. The pain is mostly a background issue for me, but once in a while it flares up into pure lava flow agony. I am taking maximum trammadol today, and it's making a minimal dent. If it keeps up I may have to go get some muscle relaxers - that generally stops the leg issues.

I have found I can't stand for long since the radiation therapy five years ago, and I probably shouldn't have pranced around Wal-Mart with my shopping cart full of heavy items, and then gone home and cleaned. I did manage to finish my mopping this morning, but it isn't as complete as I wanted.

I am sure my two 13 hour driving days to Cleveland last month didn't help me with this issue, but travelling by plane is such a problem for me because of the security lines. Driving isn't too great, but I can take breaks when I need to and I use the cruise control as much as possible.

I'm just going to go lay down and curl into a ball - that removes the tension on my sciatic nerves. The physical therapist I had a few years ago said that she felt from her evaluation that I have scarring of the dura layer of my lower spine tethering the nerve roots in the sacral area from the radiation. Just one more broken bit because my warranty expired at 40, and I don't have an extended package.