Sunday, January 30, 2011
My neighbor has begun the building of the Amish fence (at least that is what we are calling it). Not an Amish built fence, but a fence to keep our neighbor's Amish enterprises to a degree of ambition equal to the state of the private lane that leads to their property. Since they drive by here with lanterns on their buggies at all hours of the night, I am glad that my neighbor has left the brand new gate open tonight so there won't be any drastic buggy accidents.
Since my neighbor is a retired truck driver, he has cleverly designed the gate so it will require a trucker to turn his rig on a dime to get into the lane. I'm not sure most truckers can even make the turn without ending up in the drainage ditch on the other side of the farm road. I guess they shouldn't have kept running over his yard. The welder was here with his portable welding rig and the gate seems to be finished.
The gate is painted a low visibility blue which looks great in the daytime but is not too visible at night. I am thinking my neighbor is trying some stealth tactics against the 3 AM drivers across his yard. Again, I am glad he has left the gate open so we don't have a buggy disaster tonight. I don't know what a buggy crash would sound like but I would think there would be a lot of horse neighing.
For the last several days Amish traffic has been down. None of the Amish drivers or passengers stopped and asked what was going on, although every other neighbor and passerby did. Maybe the Amish are gathering their collective legal fees and planning on filing in court. Not sure if they have a leg to stand on if access is not restricted. Since their horses and cows have escaped several times due to their inability to keep a decent fence on THEIR property I guess trapping their livestock in the lane before they get out into traffic is not too bad. I guess we will find out as the drama unfolds. With my luck I'll get dragged into this, although the fence is on the same property line it has been for 30 years on my side. I'm sorta feeling fenced in myself. Sigh.
Took my brother to Walmart for a prescription and The Legs gave out on me. Having a bit of pain tonight. I just can't walk very far any more. The coughing from the flu is pretty bad when I move also so a double whammy of pain and lack of air! Durn those Walmart pharmacy bargains and the large emptiness of the Walmart Parking Lot. I probably should have used a handicapped spot to park but there had to be people in worse shape than I am. I am pretty sure I saw a few jazzing around in their sleek shiny electronic chairs.
I was glad though that there was no pukiness today and The Headache is better also. Glad that episode is over! Now if I can just stop coughing I will be in seventh heaven.
My brother-in-law who had a very bad stroke a couple of years ago has been told he needs to have an operation to open up the carotid artery on his non-stroke side. It has closed an additional 10% in the last three years. This is a life threatening operation for my BIL since they had difficulty getting his carotid artery sewn back together on the other side a few years ago and may have the same or worse problem with this one. I am not sure what my BIL and my sister will decide. They are going to meet with the surgeon and find out what options they have other than surgery. It may be there are no other options than just wait for the next stroke. My BIL has a hereditary condition with premature hardening of the arteries which makes these kind of issues more difficult than for the average person. I worry for them and am praying for guidance to help with this difficult decision.
Meet with my PCP tomorrow, will see if there are any steps (ha ha) for The Legs before seeing Dr. House in April. Hope you all have a great week - it looks to be cold and maybe stormy here.
Saturday, January 29, 2011
Nausea has been my companion throughout my life. I was a car sick youngster, a pukey adult. Many things can set me off: motion, odors, dizziness, migraines, headaches, pancreatitis, gastritis, allergic reactions, medications. Today was no exception.
I took pain medication last night at about 3 AM and woke up at 9 AM and promptly tossed my cookies. Since what I tossed was undigested food (I know TMI) from what I ate at approximately 7 PM the evening before I know the pain medication was not the culprit. I had actually stopped digesting what was in my stomach approximately eight hours before taking the pain medication. This is typical for me and The Headache. I did wake up with The Headache poking needles through my brain so I am guessing the pain started getting worse the evening before and I didn't notice. Sigh.
I took 50 mg of phenergan orally, and after a brief nap I tried eating some lunch. Mission accomplished, or so I thought. I waited a little while and drove into town with my brother to pick up some meds and buy some cleaning supplies. While at the checkout line at the Dollar General store I thought - oooo not good. I had the familiar world is tipping sea sick feeling. I silently willed the super slow checkout lady to hurry up. I then took three steps from the counter and said "I don't feel too well". I hyperfocused on the bright yellow bags in the turnaround bagger device. Slow checkout lady was ignoring me, but I saw in my peripheral vision all the people in the line behind me take three steps back in horror. I grabbed a yellow sack and started ralfing in it. The checkout lady noticed and speeded up. I kept throwing up in the sack and finally quit. My brother kept saying "She's had the flu, she's had the flu" - he just did not have the fortitude I do to puke and not bother to explain. I closed the bag and mumbled something like "At least I didn't puke all over the counter". My brother grabbed my puke bag from me and started grabbing bags to take to the car.
I turned to pay and then had to grab another bag and puke again. All the counter lady could do is keep saying "are you going to pay?" I guess thinking that it was a ploy to run off with valuable Dollar General cleaning supplies. I finished with my vomiting spell and calmly turned to the debit/credit card machine and swiped my card and input my pin number. I mumbled "At least I didn't puke on your floor" as she frantically grabbed my receipt and almost threw it at me.
I stumbled out into the sunlight (it was a beautiful day in the seventies here in southern Missouri) with my bag o' puke and my receipt and my brother rushed to my rescue, grabbing my bag and disposing of it somewhere, I hope in a dumpster. I managed to drive home and have spent the entire remainder of my day sick and napping on the couch. My pancreas is hurting quite a bit so The Belly might be somewhat to blame for my malaise. That's what I get for eating some take out Chinese food the day before I guess. I may have to go visit an ER if I can't get this under control. Big Sigh.
I have no shame or embarrassment about puking in public anymore. I not only vomit, I projectile vomit!
I have puked at:
Formal Christmas Parties (pass the extra garlicky garlic mashed potatoes please - BLEH!)
Right in front of a family having a picnic in their yard
In front of a highway patrolman (I was speeding a bit trying to get to a turn off in order to puke)
On the dashboard of my car (Have done this one more than once)
At my desk at work
Running down a hallway to get to the bathroom at work
At other people's desks at work (using their trashcan)
On airplanes, both in the restroom and using the bags
in airport restrooms
At client's - thank heavens hospitals have lots of restrooms!
In hotel rooms
On the interstate
In parking lots
In hospital rooms
In emergency rooms
In every room at home
At the doctor's office - Note: Don't poke me in the stomach.
At the grocery store
Of the loading dock of a pharmacy
There are probably more, but I'm a little too nauseous to remember. After all it is a thirty year legacy of persistent puking to commemorate! I sorta feel like Stan from South Park, throwing up everytime he sees Wendy, but for me it could be anything. Hoping you all have a great non-vomiting weekend.
Day 3 of going back on the neurontin has the digestive side effects taking front and center, or is that to the rear and at the bottom??? Wasn't able to get to work because I couldn't get away from the toilet long enough to go. I have a 45 minute commute with a couple of opportunities to pull off the road and find a bathroom, otherwise it is hop out by the side of the road time. Unfortunately with already having diarrhea from the radiation treatment in 2004 when I crank up the motility making food move even faster through the digestive system I become a one woman poop machine.
I can't hold anything back because the radiation has ruined my pucker power so I had to make many clothing changes today because I didn't get to the bathroom in time. I am trying to keep the liquids going but have to balance that with increased output - I get to where the more liquids I take in the faster I dehydrate.
Thinking with envy of getting a big diaper butt from disposable incontinence britches, but got to thinking - what kind of huge-mongrously large diaper pail would you have to have?? That would take even more room in the luggage if I traveled for work than my extra large bag of meds. I might try these though because they do wick moisture away from the skin. I have to watch it because the skin starts to degrade after a while if you don't keep everything clean and dry, just like a baby behind.
The Legs are a jiggling this evening, so most of my neurontin power has gone into my gut and seems to be ignoring The Legs. They don't seem to like that. I may have to take a pain pill tonight, since it is three am and all is still in turmoil. One advantage of pain medication is that it sloooooooows down the digestive system which for me is a welcome side effect. The eyes have behaved today.
My next door neighbor has been measuring, marking, and getting ready to fence the private lane. I don't think the Amish know (or maybe don't care) that my neighbor grew up here, is related to almost everyone and knows everyone else, is a reserve police officer, and his wife has worked at the hospital on the hill for about 30 years so she knows everyone too. I watched (in between bouts with the bathroom) pickup after pickup stop and visit with my neighbor as he supervised the marking of the underground gas lines, phone lines, and power lines before getting ready to dig. I am sure word is out about the fight over the semi traffic. I have noticed a slight decrease in vehicle traffic going to the Amish property but that could just be a non-related lull. In small town America this type of thing is like throwing a pebble in a pond - you don't know where the ripples will end up but you sure know something was dropped in.
Going to bed. Hoping for a better tomorrow. Will have fun watching my neighbor get to tell the story of the fence and the gate over and over again as traffic continues to stop to visit. Hope you all have a great weekend!
Friday, January 28, 2011
Woke up this morning feeling mighty fuzzyheaded. Sure now it is the neurontin that I have started up again. Trying to get ready for work this morning I experienced almost an hour of a visual scotoma that took up my entire peripheral vision fields, leaving the middle part clear until the very end. It was like a fluctuating curtain surrounding my central vision. I was not able to really see what I was doing so I just sat in the bathroom where I was showering until I was able to see again.
I was very confused afterward so I sat around for about an hour or so to see if the confusion would clear and it did not. I may be having a worsening of The Headache and just not feeling pain as my left eye was not wanting to behave either. I gave up around noon and called in and told work I would not be able to make it. I am so tired and done in I just want to give up entirely but I will recuperate this evening, brush myself off, and try again tomorrow.
I never had a visual scotoma in my life until I took Topamax. I was very droopy and tippy on Topamax and I started experiencing scintillating scotomas. They disappeared after stopping Topamax, and I associated these with the intense eye pain that Topamax induced as a nondesirable side effect. I now occassionally have an episode of scintillating or non-scintillating visual scotomas, so not sure if Topamax made a permanent change somewhere in my hardwiring or if The Headache just likes to mess with my vision to throw me off stride. I don't seem to have an increase in The Headache pain when I have these - I probably should check my blood pressure the next time (if there is a next time) this happens although I doubt if there is any physical reason for these other than The Headache.
I slept most of the day today. At least I remember what I did today!! Yeah!! I'm ready for my brain to reboot and start functioning in neurontin mode again. The Belly is not happy tonight, but I'm happy because The Legs are still - no dancing in pain for me this evening!! Yeah again!!!
I have an appointment with Dr. House at the Washington University Neuromuscular Clinic on April 7th at nine AM concerning The Legs. This is in St. Louis, a good four hour drive away, so I guess I will go up the evening before and stay at a hotel. The Great Big Corporation I worked for had a base of operations in St. Louis a few blocks further downtown so I am very comfortable finding a hotel nearby. I used to go there on a regular basis when I was a project manager for them. I could fly in and back but flights to St. Louis from Springfield Missouri are terribly expensive - I guess because business customers will pay whatever the rate may be if there is a need for the flight. I think this will be another dead end for me concerning The Legs but I promised myself last fall I will be persistant in trying to find a solution to The Legs. Washington University has a world class neurology department so hopefully if there is anything to be done Dr. House will find it.
I go to see my PCP next Monday for a followup on the neurontin, and to see how I am doing otherwise. I am glad he is a great advocate for me with other doctors. He tries different approaches if one is not working, something I have not had good success with convincing specialists to do. Just wish I didn't have to see him as often as I do. There was a day (pre cancer) when I only went to the doctor a couple of times a year to have my synthyroid dose checked. Now I go to the doctor way way way too often in my estimation. Too many systems not working right. Big sigh.
Thursday, January 27, 2011
Long day today. Very tired, tried to get myself together to go to work and just couldn't think right. I couldn't get my act together to do much, and was "drifty" (that was how it felt anyway). I fell asleep a couple of times just sitting down, and have had trouble breathing and walking although it is better today than yesterday. I don't remember calling in to work, but I also don't remember making lunch for my Mom and apparently I did that. She said I made her some soup and tuna salad sandwiches.
I am not sure if the problem today is from being sick with the flu or from restarting the neurontin. I had discontinued it last week because I was getting so dehydrated I needed to slow down my digestion a bit. I wasn't able to keep fluids in no matter how much water I drank. The neurontin makes my very fast digestion go even faster, so I hoped that not taking it would make things a little better. Couldn't really tell. I restarted it last night because I noticed I couldn't sit or lie still because I was jittery from pain.
The Headache is a bit ouchy tonight and my legs are jumping and jiving as I have tried to hold off on the neurontin. I am going to have to take it soon and just give up. I really really need to get to work but I also have to be able to drive safely and THINK!!!
The Belly threw a fit this evening. Sometimes the pancreatic pain is like having a steel tipped cowboy boot kick you right under the ribs pushing all your innards around! Not pleasant, but it did go away so I am happy.
The Legs are not happy at all. It is amazing when you are really acutely ill like I was with the flu all other aches and pains drop into the background, but as soon as you feel better they pop up again. Sigh.
Feeling insubstantial and ephemeral. I don't think I am tethered to the real world very well today. Wishing the floatiness would disappear and I can stomp my two ouchy and numb feet in the reliably stable workaday world and get on with business. It has taken me five hours to compose this little piece because I keep getting distracted as in - "oooooo looooook at the shiiiiiiiiiiiiiny liiiiiiiiiiiights, ooooooooooo shinnnnnny" then "was I doing something??" then "wow, maybe I'll go over here, but where are my glasses??" then "ooooooooo...." ad infinitum.
I'm going to take my neurontin and go to bed. I think I started some dishes in the dishwasher that need to be put up but I'm not sure. I'm afraid to look because they might be clean and shiiiiiiiiiiny....
Wednesday, January 26, 2011
My brother helped me get my new handicapped license plates and placard this week. I meant to get these before going to Michigan last week because of the airport parking lot I had to use, but the funeral messed up my timing. I already had all the paperwork ready, it just was a matter of getting everything finished.
I don't plan on using the handicapped spaces very often, but the Branson airport has a very difficult parking lot. For whatever bizarre reason the airport terminal is uphill from the parking lot, so you have to hike your luggage up a slope and then another slope to get it into the terminal. I just can't do it with The Legs as they are. Coming back on a round trip, you are downhill to your car so that is not so bad but trying to get up the slope with a load to catch a plane is almost impossible for me now. My sister said I should be glad I was able to get the plates, but instead I am sorta sad. I wish I didn't need them. I wish no one ever needed these kind of plates.
I am glad I have what health I enjoy, and I am glad my mind while foggy is basically sound. I met an old friend at my uncle's funeral. She and I are only a few weeks apart in age, and we share the same middle name. She was one of my best friends growing up, and I was friends with her older sister and her brothers. She told me that she had suffered a stroke last summer, and had moved back in with her parents. We will both be 51 this spring. Not only did she have a stroke, but lesions were found on her brain and she is now diagnosed with early onset Alzheimer's disease. Her grandmother died of this (as did mine) and her physician told her she has an inherited version. She is taking two drugs to slow down the disease process, but has been denied Medicaid (they say she should be working) and has no health insurance benefits as she is unable to work. She said the worst part for her has been losing her independence and her apartment, having to put almost all her things in storage. She is very frustrated because she has worked all her life and now when she needs help she is unable to get it.
She recognized me while I didn't recognize her at first. She is much too thin now, and her hair color is lighter - more the color of one of her younger brother's, and of course she is wearing the over 40 glasses in order to be able to see. I suppose if you squint and unfocus your eyes and ignore my grey hair I don't look that much different than I did in high school - and despite all my trials and tribulations I am definitely not too thin. I think of all my complaints about my health, and my doctors, and the tests, and work and then I think of her. I still have avenues to go down. She doesn't. And that stinks.
Tuesday, January 25, 2011
I have Amish neighbors. When I moved into the area over 23 years ago, there weren't any Amish in the area. Then some of the dairy farms brought in very hard working and dedicated Amish families to run their local dairies. Then more Amish people moved in. Then there is an Amish school. Then we started having road signs up warning about horses and buggies. Than a few years ago, a newly married Amish couple bought the farm at the end of the private lane that goes between my property and the neighbor's property. Then they moved a furniture factory there. Then another young Amish couple built a home on the property and moved in.
For the most part they are quiet neighbors. However, traffic up and down the private lane has increased from a car or two a day to a steady stream of horses and buggies, and hired vehicles and drivers with pickups and van loads of Amish. Now they have started a discount grocery down the lane with a hand letter sign with a red arrow pointing down the road. Now semi trucks come in the wee hours of the morning making deliveries to the discount grocery and we have even more traffic.
I live in a rural unzoned area. I really don't mind that the Amish want to make the most of their investment in their land. Yes, I was relieved when I heard they decided against putting a sawmill right behind us, but other than the increased traffic everything has been pretty OK until the big truck traffic started a few weeks ago.
The private lane is a one lane gravel road. Its purpose is for access to two properties behind me. It was never intended to carry semi truck traffic or two lane traffic. My next door neighbor that shares the easement is fed up. Semis have been turning into my yard and across the corner of his yard and tearing up the unprotected lawns because the turn INTO the lane is way too tight for a semi to make. My neighbor went to talk to the Amish neighbors about the semi tearing up the yard issue. Our Amish neighbors have always been pretty OK to talk to - I only see them when their horses or cows get out in my yard. They are cheerful and friendly if in a sort of distant way. My neighbor reported that he was told that he could let the Amish buy him out, or take them to court but the semi's were going to keep pulling across our yards regardless. He is not happy at all.
My neighbor is a retired truck driver and a Vietnam veteran. He is a take action kind of guy. He said for the non-violent sort the Amish are really aggressive. Who knew?? So now he is going to fence the lane to the boundary of the easement and put a gate across it. The semis can still come and go, the Amish can still come and go, the neighbors behind me can still come and go, they will just need to open and shut the gate every time.
Since I don't use the lane I don't care if it is fenced (it was when I moved here - we removed the fence because it was in bad repair) or gated. I foresee crushed fences from wide turns and lawsuits commencing, but I fear an accident on the hilly one lane road with the increase in back and forth traffic too.
I'm more of a "if you can't beat them join them" philosopher and thought maybe I should put a discount bakery, and a discount tobacco store, and a discount liquor store and a discount animal feed store and a dollar store right on the edge of my property. That way everyone who visits the Amish discount grocery store will already have spent all their discount money at MY stores! I think it would be just too much work now opening and shutting that gate. Another dream gone. Sigh.
The Amish neighbors have more than one set of roads in. I think they like the private lane by me because it is only about a half mile off the state highway. I am hoping they will rethink their road position and go for the path of least resistance - annoying the neighbors on the other side of their acreage. I think my Vietnam veteran neighbor has put his Missouri mule foot down about using his yard as a roadway.
Health wise with the flu, I am better. I am still sleeping sitting up tonight. My fever has gone down some but is still there. I can't breathe if I lie flat. I can't breath if I walk, I can't breathe even now just typing. I sound like I have one of those squeaky toy wheezers stuck down in the bottom of my crunchy crackly lungs. I have increased my fluids hoping maybe I will start coughing up my squeaky bits soon.
Sunday, January 23, 2011
Caught the flu either on the flight to Michigan or at my uncle's funeral. Have had a week that is just sorta hazy right now. Respiratory virus I am sure. My sister who had this a few weeks ago was told it was a cold, not a flu, so the flu shot doesn't cover it. Bummer.
I hate that I was stuck traveling, spewing virus everywhere I went. I would have been sick at home or at work, so the sick part doesn't matter, but I hate possibly exposing people to this. I ran high fevers Friday night after getting home, and all day Saturday, so sick I didn't want to move. Today I am still very sick, but the fever is down some and I can breathe a little better. I sincerely hope I have not given this to anyone else. I tried to be SO careful, kept cleaning my hands with sanitizer, covering my mouth but I must have been a large bag of escaping viruses on Friday coming back on the plane. Just hoping the lower respiratory part doesn't get worse that is where it seems to be stuck now. Plenty dehydrated, trying to stock up on fluids having a hard time getting them down.
At least I am at the spot in the cartoon where (after being run over by the steamroller) you come out pressed flat and pop back to three dimensions!!! Woo Hoo!
Saturday, January 15, 2011
My mother's brother died Friday morning. He had been on hospice care at home since last fall. My heart aches for his children and their families and his wife of 50 some years. My heart aches for my mother, who is the last surviving sibling of her family.
My mother came from a very large family. The oldest children in the family were enough older that they could have been my mother's parents. My mother and her younger sister Retta and her younger brother Pood were very close. Raised during the Great Depression they knew what hunger was like and sometimes went days without food or with very little food. Pood never forgot what it was like to be a hungry child. I think this is why he always had hard candy or a candy bar stashed away in some pocket ready to give to any child he might run across.
Pood (real name Ralph Allen) had a wonderful sense of humor, something all his children have in common. He could see any situation in a way that seemed funny but his comments often were thought provoking in addition to being amusing. He was a veteran of the Korean War - going into the Army just out of high school and leaving it as a sergeant. He didn't speak of the war often, but I think it was a heavy weight he carried with him all the time.
Music was a passion for Pood. He had a wonderful singing voice which his children also inherited. He has grandchildren that are passionate singers also. I think Pood knew the words to thousands of songs. He was especially fond of country music.
Pood had a nickname for everyone. Snake and Fox and Head (after Edith Head the fashion designer) were his children at home and his wife. I was Sissaroo and my younger brother was Grinder (as in tougher than a mull grinder).
Pood was a 5 year survivor of metastasized colorectal cancer before his body said no more. I hope anyone reading this starts getting screening colonoscopies at the recommended intervals/ages. Colon cancer is very curable if caught in the earliest stages. Don't put having a colonoscopy off!
My bosses were fantastic as usual since I will be taking my Mom up "home" to the funeral on Monday, the day I was supposed to be flying to Michigan. They redid my tickets so I can leave Tuesday instead! I have the new guy some literature to take with him so hopefully he will be prepared for questions.
I am hoping for a great drive up there (the town is about four hours northwest from here) and a great drive back, then I will be hopping a flight to cold cold Michigan the next day. I am very sad today; everyone who knew Pood is very sad today. My mom doesn't travel well, but she is determined to go and I am glad she feels well enough to go! As for my health problems I am just going to suck it up and go.
Thursday, January 13, 2011
Bad Day today all around. Never made it into work. Had to have a phenergan injection to stop the nausea. Finally able to keep liquids down. Hoping kidney stone #2 is now through gnawing its way through my innards. In pain from The Legs and The Belly and The Headache.
No pain meds today as I was not sure if they are increasing the head pain and nausea while decreasing others. I am hurting, but the blessing of the phenergan injection was that I slept most of the day again.
Am going to try my best to get into work tomorrow. I can't afford many of these days off. Not sure what to do. I have things that have to be done there. I was so hoping this year would be better, but so far it's not so great.
I had many more hives last night, will take some benedryl in a bit to see if I can make this crop go back to where ever hives come from. I didn't think the cyclosporin was doing anything but I might have been mistaken.
I am looking forward to getting up tomorrow and making my way to work. Hoping it will happen! Gotta get my mojo back someway this winter. Sigh.
Wednesday, January 12, 2011
Not a good day today for me. I seemed to not be able to wake up today and slept until about 5:00 in the afternoon. I think my body needed that, but now I have the erps. Living in upchuck city this evening.
Moving my head makes the nausea worse. Moving my eyes makes the nausea worse. Closing my eyes makes the nausea worse. Swallowing anything makes the nausea worse. Uck.
Not sure if the kidney stone is causing this problem, the UTI or UTI antibiotics is causing this problem, too much dietary fat causing this problem, or medication (especially pain killers) causing this problem. I am out of phenergan pills. I have suppositories I could use and I guess I could use one of my IM vials, but I hate to sacrifice one of those before my trip next week. I am having a bit of right flank pain, so thinking kidney stone #2 is on the march...sigh.
Thinking if this is still going on in the AM I will go to my PCP and get an IM injection there of phenergan. I am already slightly dehydrated and it won't take long this evening to make me really dehydrated. I am extremely dizzy and terribly fatigued STILL after all the sleep I had today.
I feel like a bobble head tonight - going to go soak my big old bobble head and see if I feel any better. Bleh.
Tuesday, January 11, 2011
I'm a person who always has a plan, a direction, course correction, a goal. These last few months I have felt lost - feeling my way down an unknown path towards an uncertain future. Trying to move forward with my life but without enough information to know if I am going forward, standing still, going backwards or maybe just taking the scenic route. I have lost my points of reference; I am afloat in a sea of possibilities and impossibilities with no way to tell the difference.
I keep putting off decisions because I keep thinking I will get my health straightened out or stable and I can make a decision then. I focus on the next thing and then the next and then the next and pretty soon I am like Hanzel and Gretel in the forest - the birds have eaten my breadcrumbs and I don't know where I am or how I got here!
I am resolving (once again!) to reconnect with my friends. I want to recenter myself around my inner needs just not my medical needs. I need to do some things just for myself for fun. I want to reevaluate what I can and cannot do. I always surprise myself because I can do more than I think sometimes, and more than is wise other times! I need to nurture the spiritual side of me. I need to stop just existing and start living again.
Work is a big concern for me. I feel so ill lately. I know I am not concentrating like I should. I hope that I am getting the two new guys/gals trained to the place if I fall by the wayside the company and my bosses (who have been so good to me) will not suffer. The company is suffering enough right now with me not able to carry my workload as I should.
I started taking dilaudid in the evenings, as small a dose as I can take and still handle the pain. The neurontin helps some of the pain, the dilaudid is helping more, but I probably should be taking it on a regular schedule rather than 1x per day. The kidney stone pain is not good, but hopefully that will "pass" soon and maybe I can drop the narcotics out of my medication regimen again.
The Headache is bad this evening possibly due to the dialudid which aggravates it. I hate having to wait until the middle of spring to see the next specialist about The Legs. This is where I lose my way. The Legs have become a major problem. sigh.
The Migraine and Headache Blog Carnival for January is published. Check it out over at Putting Our Heads Together! This month's theme is "Taking Charge in 2011", as always there are interesting and thought provoking posts to read!
I am going to go hold Mr. Squeaky (Emmett) and think happy sleepy puppy thoughts and take my meds and maybe go to sleep. Good night all!!!
Saturday, January 8, 2011
Saw my PCP Thursday morning. I had only slept about 30 minutes that night and was very nauseous. I hadn't eaten a meal in at least four days, mostly intake of fluids had kept me going. I had probably only had a few hours sleep for most of the week. He agreed that I had probably passed a kidney stone, and that I was now somewhat dehydrated. My digestive issues, now exacerbated by the neurontin, are part of the problem with managing dehydration. The more fluids I drink, the more fluid is put out by my bowels - bypassing the kidneys - and the faster I dehydrate. IV fluids will actually stay in my tissue longer than drinking fluids, even the ones like Gatorade that contain salts and electrolytes.
He ordered 25 mg of IM (intramuscular) phenergan to help manage the nausea because I was at the point I couldn't keep anything down, and I have issues with suppositories becuase of the radiation damage. Sigh. I also expressed my concern at my next trip to Michigan in a couple of weeks. Bless his heart, he put a standing order for IM phenergan at his office so all I have to do is call and go get a shot. He also got me two vials of phenergan and the filter needles, needles and syringes to use before my flights. His nurse, who is a sweetheart, told me the proper way to break off the top of the glass vials, and where to inject. Now as long as it doesn't delay me too much with the TSA agents...sigh again!
I also finally have decided to face reality and asked for the paperwork for handicapped license plates. The airport I will have to go to has a parking lot that is ALL uphill, and I just couldn't bear dragging luggage across it again. My PCP marked my application as "permanently disabled". Not sure why, but I was expecting him just to do it for a temporary basis, as in "180 days".
I have a new member of my family, a little chihuahua mix puppy named Emmett or Emmitt - have trouble reading the handwriting on his paperwork, so not sure of the spelling - I'm sure he doesn't care!
Recently in my area an animal shelter burned. This shelter accepted about 50% of the animals from the local humane society. The animals at the humane society had to be reapportioned through all the other shelters, plus a new state law had dog breeders dumping excess puppies and older breeding stock to shelters so everyone was a bit overcrowded. I decided to look for a small dog that would fit in with my dachshund. A lady I know from a discussion group and facebook has rescued several chihuahuas that were sooo cute! There seemed to be a lot of chihuahuas at the local shelters so I found one that fits with my family and with me. He is supposed to be yorkie and chihuahua mixed but he looks all chihuahua to me!
I know from experience that I will focus less on myself and my misfortunes if I have a "project" to focus on instead. Although Emmett is only two months old and weighs a tiny bit over a pound, getting him potty trained and obedience trained will be something I can work on outside of my problems. He is very calm and well socialized and seems to be very sweet natured and my mother loves him. Augie my dachshund has already offered him one of his treats which is a great sacrifice for Augie!
The neurontin side effects seem to have stabilized by now (day 10) to be mainly digestive with some dizziness. I don't think now they are going to morph into any different side effects as Dr. Kildare and my PCP both say I won't be able to tolerate a higher dose. Rats! The pain relief is far from complete and my PCP wants me to start taking Dilaudid with the neurontin at night. I haven't yet, but may tomorrow night if the pain does not get better tonight.
I called Dr. House's office (the neuromuscular specialist) to make sure Dr. Kildare's staff had sent the medical records to them, and to verify that they accepted my insurance. Pluses on both counts, but the negative is they have not made an appointment for me, and they are currently booking appointments in the March to April range. Big Sigh...
Emmett is squeaking, his way of protesting - not much of a barker, mostly a squeaky boy. A little bit whiney - just like me! I guess I'll go tend to his puppy needs (which mostly seem to be hold me, cuddle me, pet me) and rock him to sleep. Kidney stone #2 is on the move - I may try some parsley tea a reader suggested to see if I can get it to move along!!!
Thursday, January 6, 2011
Had my follow up visit with Dr. Kildare. Now that he has taken the time to read my medical records, he seems to think I am not a well person. No duh! His exact words were "You are a very ill person" and my reply was "I realize that", and I don't think I said that in a pleasant tone of voice.
He hem hawed around about small fiber neuropathy and that the test I had done there over a month ago could only detect LARGE fiber neuropathy. Instead of saying I do not have a problem because the test was negative, as it was implied at my last visit, this time he said well, after close review of my records I do seem to have some sort of problem. Huh.
Although I have "a problem" he does not know what it is or what caused it, nor does he have a treatment plan, a pain management strategy, or suggestions on possible lifestyle modifications to help me cope. He then said, well - we are just a small town - we don't have the resources of larger hospitals like Washington University/Barnes Jewish in St. Louis. "Your case is very complicated, and I'd like you to go see a specialist at Washington University." Exactly what I told them a month ago - cut to the chase and refer me somewhere else. I don't think I looked pleased. After all this was probably a $450 visit to be told I need to see another specialist, wait more time, take more tests because everything I had told them was true and now I needed to have another set of eyes look at my case. Augh!!!
He then said I seemed angry. Hmmm. I told him he was correct, I was "pissed". He said this could be a sign of depression. I said "This isn't a sign of depression. I am PISSED." He then said depression comes in many forms, and anger was one of them. I told him, "I am just a very direct person and I am pissed off! That's how people behave where I grew up. I am tired of going to doctors and not getting any answers and going to more doctors." He then tried again with the depression ploy and anger being a trait of depression. I said "This is a personality trait that goes back 52 years. When I am angry for a reason I let you know why. This is NOT depression." Has he never met a type A personality in a woman before?? Get a clue!
He then wanted to talk about my health condition and my mood, which had deteriorated by that point. I said I preferred not to talk about the impact of my health issues on my daily life. I already knew his solution would have been to refer me to somebody else, and I was getting to the huffy point. I said I needed a plan to keep on working, or to make a decision NOT to keep on working, but nothing, nada, zilch, except send me to yet another doctor. Argh!!
So my "plan" at the moment is to see Dr. Kildare every 6 months for a checkup, for what purpose I do not know. He told me that there was no cure for what ails me (whatever it may be - he seemed to think he had a diagnosis hidden back to be confirmed by the Washington University doctor). Enough said. Not really interested in contributing to his retirement fund. Right now I am only jumping through these hoops in the hope I will actually get a "real" diagnosis. Dr. Kildare has already marked "diabetic radiculopathy" off my diagnosis list - didn't even know I had gotten that one! He said he would coordinate my treatment with the Washington University specialist.
The plan for the Washington University specialist is for me to get an appointment there (which is probably going to be another month or two) and hand carry the radiology CD's of all of my CT and MRI scans to the appointment. The doctor there is a specialist in neuromuscular diseases especially autoimmune neuromuscular diseases. I have not met him yet, but I am calling him Dr. House - since he is going to have all the answers. I suppose I could have autoimmune neuropathy, I have several different autoimmune problems. I suspect it will be more money thrown down the rabbit hole never to return.
I am not sure if I have the fortitude left to go on with this charade. I told Dr. Kildare that I was at the last tiny bit of pain tolerance I had left. The pain has been difficult enough that I have had to steel myself just to put clothes on my legs and pelvic area. The neurontin is helping the pain but Dr. Kildare says I won't be able to tolerate a higher dose. I'm pretty sure that must be true because that was the only treatment level comment I got out of him in an hour. My blood pressure was still very very elevated today. Maybe they believed me about the pain because of that?? It probably was because I was pissed, rather than the pain!
I'm complaining, but at least Dr. Kildare was not overtly obnoxious like the last time where he tried to sincerely convince me that since the nerve conduction test was negative every thing was just fine. I did have to cancel my March 2011 appointment and now I have a late June 2011 appointment. I'm not sure if I am going to bother keeping it. Maybe I'll be in a better mood tomorrow.
Neurontin Day 8 600 mg at bedtime.
No sleepiness - it is 2:23 AM and I am still wired. The Headache seems to be trying to make a comeback tonight. I think the neurontin is aggravating it. The hives are not happy either, but I don't want to take any benedryl since it is so late already. I am somewhat dizzy. Not sure if its the meds, the kidney stones, or the fact that I have not eaten solid food (except for a grapefruit and I don't know if that counts as a solid) in several days. The nausea is very bad.
I am off to Michigan in a couple of weeks, and praying that my legs will hold out for one more trip. I was hoping I would have some different treatment to try before I needed to go back up North. Big sigh.
I'm going to get my heating pad all warmed up and see if I can get myself off to sleepy land. Hoping you all have great days the rest of this week. I was wishing today that I had Spanky McFarland with me to go "Pow Right in the Kisser" and give Dr. Kildare the smackdown. One more remark about anger and depression and I was ready to give Dr. Kildare a depression on his skull with my cane! But I am a civilized being and although extremely "pissed" I did not act on my thoughts physically. Besides, I value BLING too much to inflict damage on it.
Wednesday, January 5, 2011
I know today what I did not know yesterday: My terrible stomach (and I thought pancreas) spasms were due to a kidney stone making its escape from my left kidney. This explains why two syringe fulls of fentanyl at the ER yesterday morning didn't seem to do anything much for my pain..plus why my blood pressure was at 162/110!
I last passed kidney stones about a year and a half ago - there were three of them. I know from the CT scan I had yesterday that I have a kidney stone in my right kidney. Since I got rid of all my stones in 2009 this must be a new stone. I suspicion that my left kidney HAD a stone, probably a small or sandy stone, that was not detectable by CT scan.
Besides the "colicky" pain, the clue I had today was (its icky) lots of blood in my urine. I was prescribed an antibiotic yesterday by the ER doc. I was offered prescriptions for heavy duty pain killers, but I already have plenty of those on hand. I was angry at my body so just went to work after getting out of the ER and toughed out the pain. This was not easy to do, as the pain was god awfully godawful. Today I am still in pain but it goes in spells. I fear that the stone in my right kidney will decide to take a sled ride down to my bladder too.
The Headache is not happy tonight. The pain is very bad. I think my pain cup is way overfull. I am hiving everywhere and itchy. I am not sure if the hives are from the kidney stone pain (yes I sometimes hive if I am in tons of pain!) or the neurontin or the antibiotic. Itchy Itchy Itchy! I have taken benedryl so maybe it will get better soon.
Neurontin Day 6 & 7
Yesterday was Day 6 of taking neurontin and today is Day 7. I am dizzy and have a hard time setting still since taking tonight's dose. The diarrhea (a second icky thing) is much worse. I still have fairly significant leg and pelvic pain, but it has faded in comparison to the kidney stone pain!!! Guess that's a plus for the kidney stone.
This maybe TMI for most of you but I have a compromised anal sphincter from fibrotic changes from radiation. I already have chronic diarrhea and quick motility for the same reason. So neurontin seems to have increased both the number of stools and how quickly I have to hit the bathroom. Yesterday I had two "accidents" and I am up to four tonight. I simply cannot hold back the stool before I can get to the bathroom. And today I have had zero, nada, zilch to eat - just liquids because of the abdominal pain - so right now it seems to be - urge, get up walk three steps, uh oh bad news, try to get to the bathroom to clean up. I have adult diapers or as one of my friends insists - disposable briefs - and may need to break these out if this keeps up. Incontinence pads are just not sufficient. I generally regulate this by going to the bathroom on a schedule but neurontin just doesn't care!!! :(
I see Dr. Kildare tomorrow, so I guess I will see what he has to say. [Keep an open mind Winny!] It's going to be another long night! One of these nights I will have a regular night's sleep.
Monday, January 3, 2011
My hoped for dream of neurontin invoked sleep is dashed. Maybe if I get my dosage increased I will get sleepy? Last night I took benedryl to help with sleep and headache pain and hives - it's a triple whammy type of drug. Tonight I am trying to avoid extra sleep aids because I need to go to work.
The neurontin is making me bright eyed and bushy tailed. What happened to the "I can't stay awake five minutes" side effect I had when I took it in 2006? I am disappointed - my body has betrayed me again! I was counting on this so maybe I could get some really restful sleep.
I am getting pain in the region of my pancreas tonight, coming in spasms that are slowly starting to get closer together and worse and worse. I had a little twinge or two yesterday, but today its more like getting shocked by a bad electrical cord. I am taking two medications which can aggravate the pancreas - one is neurontin and the other is Januvia (for diabetes). Hoping that I haven't irritated THAT organ because it is really ouchy when it gets grouchy. Maybe it is like a bad knee, predicting bad weather. I can see me now at the old folks home "Snowstorm coming in, the pancreas is kicking a fit!"
One good thing about the neurontin, besides its ability to help with my nerve pain, is that it seems to be causing urinary retention. For most folks this would not be a desired side effect, but for me with my irradiated overactive neurogenic bladder it has been a relief!
The wacky eye problem seems to have resolved. I am still nauseous after taking neurontin but much less than I was the first two days. I am taking omeprazole (prilosec) 2x a day now, trying to get The Belly to behave better. There seems to be no further improvement in nerve pain, and I have increased my potassium intake hoping to prevent further leg cramps. I am still itchy and hivey especially since I have not taken any benedryl or vistaryl this evening. My short term memory seems to be hiding somewhere I can't remember so if I type something twice just know I am impaired!
The Belly and The Picky Pancreas are trying to accelerate the timing of the spasms and the degree of pain. I am hoping to just bear with it for awhile longer, else I will be heading to the ER to have it checked out. My PCP has instructed me to not wait for a doctor appointment if I think it is the pancreas. The spasms have gone from one every 15 minutes to one every two minutes at present. I think I will go meditate on calm pancreas vibes and pat The Belly to appease it.
Sunday, January 2, 2011
Less side effects (other than digestive issues and the wonky eyes) last night from the neurontin. I think my nerves in The Legs are on to me. They have decided to send my legs into massive muscle cramps during the night, and also my feet. I didn't realize your feet could curl downward and backward like that. It doesn't seem anatomically possible unless you are a professional contortionist with the circus but I have found out differently. OUCH!
My friend on the trach got a new speaking valve yesterday and we were all overjoyed. It is a very tiring way to speak but it is so empowering! Hopefully this will help her with some of the anxiety and fear. Think of yourself if you were in the same situation - you are dependent on others for EVERYTHING. You don't even have the strength to lift your arms AND you can't speak. What if something goes wrong when no one is in the room? Scary. Today I will go in this afternoon, but next week I will go in after work. It is hard on me because of The Legs and The Headache and The Belly, but I tell myself "BUCK UP!" thinking how hard it is on my friend when she feels too anxious and afraid. But why oh why do hospitals (and I have worked in a lot of them) always have where I want to go way way way down at the end of several loooooooong corridors??? sigh.
The Headache is grumpy this morning, probably because of the neurontin and the fact that I benedrylled up last night so the hives wouldn't gang up and I could go to sleep. It could also be that its just 3-4 days since it last decided to interfere in my life. My fingers are tingling - maybe the neurontin is deciding to work on them - I have a touch of carpel tunnel in each wrist so maybe the meds are attacking that after working on the legs. One big advantage so far - my feet feel warm. Yeah!!!
I can't be satisfied but I have to gripe - neurontin has decreased a lot of the minor pain but that just seems to have magnified the major pain. What's up with that?? Can't my brain be happy to just have less pain? I think my pain receptors are masochists.