Winny Dough Girl

Triumph Over Adversity!

Today I am dealing with the aftermath of my mammalian meat catastrophe of yesterday evening.  My brother told me this morning, yes - that WAS pork.  He didn't even think to tell me and I didn't even think to ask.   Only a teaspoonful or so of meat and about a half cup of rice and vegetables that had touched it and I had hours and hours of pain and misery.  Thanks heavens I had already been loaded up on antihistimines so it didn't get out of control!

This is what happens to me once my body decides it is going to react to something.  Each time the reaction is to smaller and smaller amounts and the reaction is more extreme.  I am hivey all over tonight with small hives, and my digestive system is still having episodes of angioedema and spikes of extreme pain.  My face and body are puffy and my nose and the insides of my ears are slightly swollen and my eyes are all scratchy.  I wish that I could just put myself through a wringer washer and squish everything out!  I feel all puffy like the Pillsbury Dough Boy, but I don't want anyone to poke me in The Belly.  It's mad enough at me right now without aggravating it further!

My blood tests came back with good news - no infection no elevated amylase or lipase, so no matter how awful The Belly is treating me it is not really out of kelter.  The nausea/vomitting are still ongoing, this is now at least five days into this.  All I ate today were some caffeinated beverages to keep going and a cup of boiled rice with some non-fat milk on it.  I will just have to be extra cautious since I gave it some delicious pork to digest and it didn't want to cooperate.

I sent some of my digestive enzymes I take for chronic pancreatitis off to the University of Virginia for analysis to make sure it is OK for me to keep taking them.   I contacted them to see if any people with the alpha-gal allergy had problems with digestive enzymes.  They are made from "porcine proteins" or in other words PORK.  The brand I was using (Panges) did not break me out in hives like another brand (Creon) did, so it may just be something in the manufacturing process and not the pork that is causing me issues, but I would rather check it out.  I ordered some vegetarian enzymes from a company another chronic pancreatitis sufferer recommended.  However, they are very expensive when you have to purchase OTC and they are not regulated by the FDA for quality or content.  There are no manufacturers of vegetarian digestive enzymes currently approved by the FDA for prescription strength therapy.  Life just gets more and more complicated.

I have an appointment on Monday to see the nurse practioner for Young Dr. Kildare the neurologist.  I guess I won't get to see kindly Dr. Welby again.  Now another level of doctoring to jump through and another neurologist I will have to endure.  Dr. Welby was such a keeper!  Maybe Dr. Kildare will be a keeper too, and the nurse practitioner.  I generally get along pretty well with NP's, just have no experience with the one at this neuro practice.  I don't hold much hope for help, as I just keep getting passed on from doctor to doctor to doctor.  This is now going onto my sixth year of having these continuing issues post radiation therapy.

I don't know if there is anything they can do for The Legs but I am willing to try almost anything.  I balk at the monitored biofeedback for "voiding" control and pelvic pain issues simply because it sounds very painful.  I am also not wanting to do physical therapy for pelvic pain, simply because when it gets going it is like this month - weeks to get it calmed down.  Before this year I could keep on motoring, buckle down and keep going, but I either just don't have the will power left or the pain tolerance I once did or the pain has just increased beyond my limits.  Maybe its all three - well, probably its all three - let's make that most certainly its all three.

The Headache is not good today but I am so pleased I was able to keep it in the bounds of non-emergency room worthy pain mostly utilizing the occipital stimulator, heat pads, and ice packs.  WooHoo!!!   This is the silver lining for my cloudy week.

I am pain medication free but I may take a Soma pill this evening without the narcotics.  I am like the walking dead in my zombified state today.  Must....get....sleep.....soon!!!  I am still plenty jiggly twitchy from yesterday so sleep will not come easily tonight.  Sigh.  But if tomorrow is as good as today and I behaving myself over the weekend I can see myself returning to work next week.  Yeah!!!

Consumed

Surrounded

No pain meds today so I am consumed with fiery nerve defining pain.  Trying to see if the nausea is from me or the medication.  So far it seems to be me.  Not having any urges or physical feelings of withdrawal so now am certain I have not achieved physical dependence on the medication yet.

Went to my PCP and met with his nurse practitioner today to see if I can get a handle on the nausea and the pain.  I don't know if I have any pain management options left as the medication I have is about the strongest you can get, although you can get higher doses.  I have gotten such different opinions on spinal stimulation I am leery about even doing the trial.  Issues like incontinence become more important if I would have an open wound for a week. 

The NP gave me a prescription for suppository anti-nausea medication (promethazine) since I am having trouble holding down oral medication.  However, with other problems I have suppositories are not a very practical solution.  She also had blood taken so she could verify whether or not I had an infection (CBC) and also took samples to test amylase and lipase levels in case The Belly and my picky pancreas are what is causing all the trouble.  She also is going to check on the results of the EMG and which doctor I should follow up with (now not only is there my PCP and Dr. Welby, but Young Dr. Kildare head of the neurology department somehow got mixed in...I can't keep up!!!  I'm running out of psuedonyms).

The Legs and the pelvic pain acted up this afternoon - I am sure it was the second there was not a drop of pain medication in my body left.  I am finding it difficult to do anything, with the pain burning along my ganglion pathways.  I am just going to try to do the best I can.  The Headache is not happy either as I think my cup of pain is currently overflowing big time.  This was one of those days when taking blood felt like being stabbed with an ice pick instead of just a little poke.  I have been cold all evening unable to get warm and I am sure this is due to the pain levels being too high.  Not really able to eat anything either, so I don't have a lot of fuel in my system to run my engines and keep me warm.

The nausea is still ever present, The Headache is pounding.  The Legs are cramping. The Belly is hurting. I am whining.  I am going to go curl up with a heating pad and see if I can rest a bit.  Afraid there won't be a lot of sleep tonight for me.  Hoping against hope if I just tough it out the pain levels will drop and I can get back to almost normal. 

I complain a lot about my lot in life, but there are people out there with much worse problems than mine, problems that aren't just painful but have a host of other difficulties too.  There are children who endure procedure after procedure not only with patience but also grace, making the best of the situation they are dealt.  I remind myself that my pain and my personal suffering is just a drop in the world's ocean of hurt, and I should be able to function better with the blessings I have. 

I think I am going to work tonight trying to disect my pain and nausea and figure out if I can use biofeedback more effectively than I currently am able.  Onward and Upward!!

Good News?? Not sure yet

Preliminary EMG Results

My PCP's office called today, and my EMG results came back as "normal".  Since Dr. Welby told me that he was sure what I didn't have, and discussed treatment for radiation induced lumbosacral plexopathy and possible cauda equina issues to boot, this is a little confusing.  Not sure if I should be happy (no bad problems found) or unhappy (no bad problems found but symptoms persist).

Did some research tonight when I was able to sit, and found that EMG results on lumbosacral plexopathies are often inconclusive or negative due to the complexity of the lumbosacral plexus and the deep tissue and bony encapsulation of some of the pelvic innervation structure.  Wondering if Dr. Welby's test was a waste of time and money.  Or is it a ray of hope?  At least I know I don't have peripheral neuropathy in my lower limbs to blame my burning buzzing feet and lack of sensation on.

My PCP's office said that my PCP needed to consult with Dr. Welby on treatment planning, so that is confusing also.  What treatment planning is needed if testing is normal (even though my pain and weakness is continuing and not normal)??  This is where practical knowledge and medicine part company.  All I know is that my pelvic pain has been terrible today - whatever is causing it!

As Danny Kaye said in the movie "The Court Jester":  The vestle with the pestle has the pellet with the poison, the chalice with the palace has the brew that is true.  Or does it?? Just remember that!!! So which is right - lumbosacral plexopathy or normal nerve functions? I think I just end up with the pellet with the poison every time!

No More Mammalian Meat

Just What I Need - Another Problem

Got a call from Dr. Calm's office (my immunologist) today and I definitely have an "alpha-gal" mammalian meat allergy.  The hamburger I ate a few weeks ago was the cause of my anaphylactic reaction.  The jury apparently is still out on the c-kit mutation test for mastocytosis.  No more mammalian meats or mammalian meat byproducts or fats allowed! 

When I had the EMG done for the radiation induced lumbosacral plexopathy (try and say that three times in a row really fast - not hardly possible) Dr. Welby commented on my occipital nerve stimulator, saying I was a really special person to have one of those, meaning he didn't see THAT too often.  I told him my theory that I am the "nexus" of weird diseases, and I really want the merry go round to stop and let me off!  Well, now I have one more weird disease!

Guess my tick bites here in southwest Missouri (not far from Arkansas) have set me up to be fatally allergic to beef, pork and other mammalian meats!  Trying to have a sense of humor about it, I started getting a list together of new things I cannot eat:

Platypus
Whale
Dolphin (well, tuna was already off the list so no accidental dolphin eating here)
Venison
Rabbit
Squirrel
Possum
Elephant
Mice
Antelope
Bison
Elk
Seal
Manatee
Sea otter
Polar Bear
Dog
Cat
Tiger
Musk Ox

Apparently I could be a cannibal, because human meat does not contain "alpha-gal" nor do the higher apes like chimpanzees and gorillas.  Ummm, baked gorilla - no thanks.  I think this about makes eating out in a restaurant impossible as I am about out of foods that cannot be cross contaminated in a kitchen.

Proteins I can still eat (deadly allergic to seafood and fish so they are off the list):

Snake
chicken
Alligator
Chicken
Turtle
Chicken..
Turkey
Chicken....
Grouse
Chicken......
Parrot
Chicken........
Lizards
Chicken...........
Quail
CHICKEN...........

I think I'm getting carried away with chicken, which is the protein I eat the most of anyway.

You know, when something is restricted from your food list you start yearning for it even when it is something (like beef and pork) that you don't really eat that often.  I also started thinking of things I eat or take that have mammal protein in them - gelatin capsules for pills, pancreatic enzymes for digestion, refried beans, tortillas, jello, lunch meat - ouch!!  Too much for The Headache to handle!

My mom was doing better by this afternoon with her dizziness.  Hoping this means the antivert is working, and it is only an inner ear problem.  She is perking up a bit, more like her regular self.  This at least seems to be going well!  Yeah!

This week has not been good for me healthwise. Monday evening I was trying to sleep and in a lot of pelvic and back and leg pain.  I drifted off and was dreaming I was screaming in pain.  I woke up and I was actually laying there screaming "EEEEEEEEEEEEE" so I guess it wasn't a dream.  I did medicate and have stayed home the last two days partly because my Mom needed help, but also because I am in an incredible amount of pain.  In addition to the pain I am extremely nauseated and I have hives in batches several places on my body.  I went without pain medication most of today and the nausea was still there so the "medication is to blame" theory bit the dust.  I fear The Belly may be riled up in addition to everything else.  This is messing with my need to do things and be at work and concentrate and I am not happy about it one bit. Pain pain go away, come again another day!!!

I think Karma is working against me for some reason, or maybe it is because the evil thought crossed my mind that I might have wanted to eat a duck billed platypus for dinner or chow down on a poor manatee.  The ghosts of all those future chickens I will be eating are going to haunt me now!

Autonomic Nervous System

Sympathy for my Not so Sympathetic Nerves

I haven't felt well this weekend, as often happens when I don't feel well I research.  Not sure what I think this accomplishes but inwardly it often gives me a feeling that I am still moving forward no matter how stalled out I am in real life.  I am always happy if I think I have discovered something that explains a symptom I didn't really understand before.  Again - this can be just my imagination working overtime, but at least I'm not sitting here stuck in the "I'm in pain" loop.

If you have never experienced the "I'm in pain" loop my brain thinks like this:

"I'm in pain"  (sad and wimpy)
"Ignore that!" (snappy and aggravated)
"My mind seems stuck in a loop!!??" (amazement at my genius)
"Duhhhh......" (drool from slack brain)
"Was I supposed to ignore something?" (looking for a brain cell to light up)
"I'm in pain" (see above)
"Ignore that!" (see above) ....ad infinitum [you get the picture]

It's like trying to bat a mosquito dive bombing your ear.  You wave at it and smack at it and its annoying as all get out but you just can't get rid of the little monster.  When I get stuck like this it becomes impossible to reboot my brain, so keeping it occupied (I have discovered scholar.google.com and http://www.quertle.com/ WooHoo!) keeps it moving forward.

My choice of research this weekend was my nervous system.  Dr. Welby thought it was very interesting that my GI specialist at Barnes/Wash U in St. Louis (Dr. Bellyfixer) was certain that my motility and other digestive issues were from nerve damage that controls the bowels.  In researching the innervation of this region of my body I found that is controlled by the autonomic nervous system, and the part that controls the bowels comes from the lumbosacral region of the spine - the part that the radiation treatment seems to have harmed.

The autonomic nervous system is made up of two to three different systems (there seems to be some disagreement about the third - whether it is a separate element or not).  The sympathetic nervous system governs intestinal peristalsis and some bladder functions.  The parasympathetic nervous system controls the sphincters, incontinence issues and non-specific abdominal pain that may be felt in the skin. The enteric nervous system works with gut motility and some reflexive digestive processes.

These systems work with each to complete the digestive process and to signal the body when things are right and when things are wrong with digestion and organs in the pelvic area.  If one gets out of synch they are all in danger of malfunctioning.  It is sort of a "push me pull me" type of relationship so if two sides decide to push instead of one push and one pull you get all sorts of problems happening. Sorta like The Belly and me!

The major nerve signalling chemical used by the autonomic systems is acetycholine.  One of the drugs which works the best for my motility problems is an older drug, Pamine (methscoplamine bromide) prescribed by Dr. Bellyfixer. One of the Dr. Dunces sneered at me in a condescending manner when I told him that this was really the only medication that had helped me so far.  I guess Dr. Bellyfixer (a department head working at one of the top ranked hospitals in the country) knew his chemistry and neural signallers better than all the local Dr. Dunces put together.  Pamine is an anticholinergic, a medication specifically formulated to inhibit acetycholine in the nervous system so I guess it stops some of the over signalling that is going on in my bowels!  Now I know why it works, and why it was prescribed. 

The autonomic system is considered part of the peripheral nervous system which is basically any nerve in your body that doesn't come directly from the brain or spine.  The other part of the peripheral nervous system is the somatic nervous system, which deals with touch, pain and movement.  The somatic part doesn't work very well for me either, but I think that type of damage is easier to diagnose due to weakness and changes in sensation and pain.

Enough nervous system anatomy for today/tonight.  My pain has decided to calm down for awhile so I'm going to try to go to sleep while I can!  WooHoo!!!  Trying to go without medication so I can jump to work tomorrow early!

Over the River and Through The Woods

Grandma's House is MY House Too!

A great stress free Thanksgiving.  My brother cooked almost all of Thanksgiving by himself.  I assisted with a couple of dishes with my Mom's help, and my sister brought over a lovely Waldorf salad.  I am thankful for my family.  My brother in law was able to stay, eat a wonderful Thanksgiving meal in our sun room, go into the living room and watch a football game with my brothers - the first time he has stayed this long since his stroke 2 years ago.  He had a great time, and we all did too!!  My sister was able to stay long enough to relax, and my Mom had a wonderful afternoon and evening, after a rough start this morning.  We had tornados going through last night, so we were all thankful that the damage passed us by!

Mom is 80 this year and woke up this morning with a scare being too dizzy to stand or walk.  She has had quite a few mini-strokes and has high blood pressure in addition to being a colon cancer survivor and having advanced COPD.   I try to be very cautious with her health, but she can be very stubborn about getting medical help.  I finally convinced her to take a Zofran she had for nausea, and then to eat a little something and her headache and the seasickness went away.  If it hadn't we would have been heading over to an emergency room to make sure she had not had another TIA.

She does not have a good sense of hunger since they removed part of her stomach when she had colon cancer surgery a couple of years ago, so I was not sure what she had eaten the day before.  My brothers were cooking in our kitchen, and I think she got so interested in the cooking she forgot to eat.  I got home late and asked her if she had eaten and she told me yes, but I think she misremembered since eating something this morning made her symptoms go away.  She felt fine the rest of the day, so watchful waiting tomorrow to make sure she still feels OK.  She definitely ate plenty today!!

I will find out the results of my EMG next week.  Dr. Welby was very nice and explained his preliminary findings to me yesterday.  I definitely do not have diabetic neuropathy.  I definitely do not have peripheral neuropathy.  I defnitely do not have a structural issue like spinal stenosis or degenerative disk disease.  I have normal nerve function in my lower nerves.  I have abnormal nerve function in my lumbosacral plexus which feeds the nerve impulses down to my lower nerves.  There seems to be a lot of mis-signaling going on in the plexus, perhaps due to fibrotic changes from pelvic radiation therapy.  He could tell I had abnormal nerve signalling going on as concerns pain location and perception.  He has treated one other person for post radiation lumbosacral plexopathy - a 70 yo man who had radiation for testicular cancer 40 some years ago and just NOW is having problems. 

He understood when I told him my digestive issues were thought to be due to nerve damage in the intestines rather than mucosal damage.  He spoke to me as if I had a functioning brain and not once did he try to pooh pooh my concerns (as the Dr. Dunces did).  He said I did not show myokemic discharges in the plexus nerves which very easily points to radiation nerve damage, but not everyone has that symptom.  He had a difficult time finding a functional nerve to test in my lumbosacral region.  He felt that perhaps I have damage in the cauda equina region also based on the symptoms I gave him.  Sigh...  Well at least they can't tell me AGAIN I have peripheral neuropahty or diabetic neuropathy. These have been finally and absolutely RULED OUT.  I guess I have that to be Thankful For!  Adding it to my list!!!  Just wondering what the final report will say, as I asked specifically what my future will look like.  Sigh again...

Hoping you all have great Thanksgivings and don't wear yourselves out too much.  Praying that you all have pain free holidays!

EMG Tomorrow

Dr. Welby At The Helm

I have an Electromyogram (EMG) of my legs scheduled at 10 AM tomorrow and Dr. Dense is NOT the neurologist.  Instead I am getting Marcus Welby, MD,  the kindly reassuring older neurologist everyone in town respects and loves, the one that never takes new patients because his roster is always full.  I wasn't expecting anything until next January or February at the pace they do things at the local neuro clinic.  My PCP must've motivated somebody - I'm totally surprised.  WooHoo!!

I didn't take any pain meds today, and won't tonight or tomorrow.  I am afraid of skewing the EMG results with medication, so I decided to hurt instead.  This certainly has been a week of doctor appointments.

I saw Dr. Calm, the immunologist, today.  He is running tests for mammalian meat allergy and the genetic mutations (c-kit mutations?) for mastocytosis.  Apparently if I have mammalian meat allergy I won't be able to eat beef or pork because of some kind of enzyme in the protein.  Well, I would rather have that than mastocytosis but I really don't want to have either, so hoping the tests come back negative!!!  No changes in the cyclosporine dosage.  I am not supposed to eat any beef or pork until I hear back from the tests.  We were going to have ham for Thanksgiving, so I think I am going to risk it and take more benedryl that day to counteract the possible mammalian meat enzyme allergy. 

Had to arrive late at work due to Dr. Calm's appointment, then leave early in the afternoon because they messed up my blood samples for the tests and I had to go and get poked again.  Apparently they took "serum" samples and they needed whole blood. Wonder what the difference is, because it comes out of my veins the same.

Very on edge this evening, suspect it is because The Legs are misbehaving. The pain will get better or it won't.  I just am having trouble sitting still - have dancing legs!  Very hard to concentrate, and little things are getting on my nerves.  I will practice my breathing this evening and my biofeedback and try to concentrate on something else!