Worried

Long Day


Over Thanksgiving my Mom, who is 80, had a dizzy spell.  We thought maybe she had just gotten too interested in everybody and everything and not eaten correctly.  Friday she had a brief spell at 5 AM, on Saturday she was better, on Sunday she had another brief episode, and this morning she was again unable to talk and very nauseated due to the dizziness.  She caught me just as I was ready to go out the door to commute to work.

I remembered to take her blood sugar in order to make sure she was not having low blood sugar.  Nope, normal.  She didn't feel better after drinking some coffee and eating something.  I gave her a choice - urgent care, emergency room, or doctor visit.  She chose emergency room, and the one closest to us.

Once there we waited and waited and waited.  There had been some ice or heavy frost that morning, and there were 4 different people there with falls.  Mom's blood pressure was pretty elevated, and she was still dizzy by the time the triage nurse got to talk to her.

The end result of the visit is that #1) Mom is having an inner ear disturbance/infection.  or #2) Mom has had a slight stroke in the vestibular area of the brain.  The doc gave a script for anti-vert in case #1 was true.  He suggested watchful waiting to make sure that #2 was not true.  He said the only treatment for that type of stroke would be blood thinners, and Mom is already on those.  If she does not improve in a couple of days we are to go to her regular doc.

I'm hiving pretty big time this evening and ready to go to sleep.  Not sure what to do about work.  I feel I need to wait until Mom wakes up and see how she is doing before I make any decisions tomorrow.  Hoping the antivert will make her less dizzy, but not confident that it will.

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!

My Cup O' Pain

It Runneth Over

We are all born with an innate ability to withstand pain.  Some of us are born with more "capacity" to withstand pain than others.  Chronic pain effects us differently than acute pain.

The question I ask myself, what "switches" me over from having pain I can tolerate and work with and deal with to having pain that makes me shake, get "shockey", unable to think?   It literally can feel like one minute I am dealing with pain just fine and the next I am past my limit.  I don't know how to plan for this, how to prevent it, or when in the midst of it I sometimes can't even think of anything but the pain.

I have decided that I have a cup, like a teacup, that holds my pain. 

If everything is going fine, I don't overdo anything, The Headache behaves, The Legs are OK, The Belly rumbles onward, I am able to sleep and rest, the pain drips into the teacup but then gets emptied every day, and I start off the next day with an empty cup ready to fill it up again.

If something happens, and I have acute pain (like The Headache) instead of dripping pain into my cup, it POURS into the cup in great gushes.  If I medicate, or get my stimulator set just right, or am able to sleep (or maybe combinations of all three) the gushing stops and the teacup holds at that level, and if I'm lucky empties.   If I can't stop the gushing, the teacup overflows and I am at the point I can't walk, talk, or think from pain.  If the teacup just holds and doesn't empty, I am still at risk of overflowing it, since now I am working with a cup that is half full, three quarters full, or to the brim instead of the nice empty cup.

If the cup doesn't get emptied, and the pain just drips onward with my normal levels of pain (instead of gushing full with acute pain) I come to a tipping point.  One more drop, and it is overfull.  Being overfull, my body doesn't seem to care if the extra drop of pain is from a too tight blood pressure cuff, a needle stick trying to start an IV, or an extra bright light boring into my brain - it just starts the same shaking, not able to think, freezing cold reaction it does when I have great gushing extreme levels of pain.  The only difference seems to be that I am not as agitated as I am when the pain comes too quickly and overflows my cup too fast.  Perhaps my body and mind has had more time to adjust?  Or the physical shock is not as great? Just not sure.

My PCP tells me that allowing my pain to stay uncontrolled puts me at risk for "overflowing my cup o' pain".  Not enough sleep puts me at risk.  Doing too much without controlling the pain puts me at risk.  He gives me plenty of medication so I CAN control my pain. He worries that I WON'T control my pain.

Here is my dilemma:  I am not afraid of addiction, but I fear not being able to "function" on the pain medication.  I am sleepy.  I don't think right.  I have poor impulse control. I have poor balance.  My nausea gets worse.  I won't drive because of these side effects.  I find it difficult to be productive because of these side effects.  I like being productive.  What to do? 

I can't function at all when my cup o' pain overflows, and I can't function well with the pain medication.  Logically I know the answer.  It is the same answer my PCP tells me.  Not functioning at all is not acceptable.  Not functioning well is not optimal, but it is better than not functioning at all.  I probably am not functioning with the pain as well as I imagine, because the "drip drip drip" into the teacup does take a toll.

I hate having to change, having to admit I am not in control, having to deal with this.  I'm a big wuss....and a complainer....and a griper.  Determining this weekend that next year will not be the same as this year.  I will take a hard look at what works, and what gains the most ability verses the least disability, and I will make permanent changes.  I am positive that I will continue to endure and there is either going to be a way to upgrade my teacup o' pain to a bucket, or a way to keep that cup empty more often.

Here are some links to more information on Chronic Pain, Chronic Pain Syndromes, and Pain Management (I hope none of them are wackydoodles - I visited all the websites but didn't research their bonafides):

American Chronic Pain Association
International Association for the Study of Pain
Alliance of State Pain Initiatives
American Fibromyalgia Syndrome Association
American Headache Society
American Pain Foundation
Chronic Pain Association of Canada
The Endometriosis Association
The Facial Pain Association
International Pelvic Pain Association
National Headache Foundation
National Pain Foundation
The Reflex Sympathetic Dystrophy Association

Next year will be better, tomorrow will be better - there is always tomorrow!  (PS I am thinking of capitalizing on the poor impulse control while on pain medication - what kind of whacky behavior can I just have fun doing and THEN blame on the medication?  Hmmmmmmm....)

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!