Day 2 Duragesic

I'm So Dizzy

Did not go to work today - tried driving but my coordination was not good.  I did not feel right driving 45 miles when I was having a hard time driving just down the road.  Then I slept for several hours, waking up with The Headache hurting quite a bit this evening.

I am quite nauseous.  I am not vomitting which is a plus, but wondering if it is the duragesic building up in my system.  I tried taking phenergan and a couple of tylenol and changing the programs on my occipital stimulator to help with the nausea and The Headache.  The Legs and the pelvic pain is a little better under control which is a plus, but kinda hard this evening to think about eating anything.  Glad the pills are staying down!

The shortness of breath is gone, so I guess my PCP was correct - it was from the systemic issues that come from being in severe pain.  Just not sure how I am ever going to be able to balance The Headache against pain relief for nerve pain and stomach pain.  Wishing life was just a tad bit less complicated.

I will try again tomorrow to get around and get myself to work.  Hoping this calms down tonight, the nausea is a little better since taking the phenergan but The Headache is not cooperating.  I'm ready for this merrygoround to stop and I can get on with my life.

My Emesis Center Is On Overload

Seasick to the Max

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.

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!!

My Belly The Prickly Pear Patch

Ouch!
Not writing much this week. Went to the emergency room Wednesday in bad belly pain. Wasn't bad enough to keep, they just dosed me with pain pills, antibiotics for a kidney infection, and threw me back home. The next two days were even worse, but I didn't want to go through the ordeal of another ER visit.

Every old person in creation had gotten out on the first nice day since we had subzero temps, and then broke something, busted something, tore something, or pierced something. Belly pain doesn't rank high when trauma cases keep rolling in. I guess it's like journalism, if it bleeds it leads.

I had not had a drastic injury so I did not mind waiting my turn, but when you are in extreme discomfort and can't hold down anything in your stomach, public waiting rooms are not the best. I have this aversion to vomiting in public toilets, and hospital waiting room toilets even more. I don't want my face anywhere near that thing! Ewwwwww!

I increased my pain medication to the maximum I have prescribed to take, but it was woefully inadequate. I'm afraid it was the type of pain that needed to be relieved by something really heavy duty, which I don't have in my arsenal of medications. I went to the ER at 10 am and didn't get out of the ER until mid evening.

I have a doctor's appointment with my regular PCP this morning (as it is already 2 AM) to discuss the ER visit and to review my pain levels and pain management strategy. Not sure what I will do, I felt I had the kidney infection because I dehydrate myself when The Belly pain gets too high and I can't keep anything down. I don't know if covering up The Belly pain will help with the nausea. I already take anti-nausea medication to both cope with the nausea from The Belly and to help with The Headache, not sure how much more anti-nausea medication I can take. Maybe I need to change brands of enzymes...there is one called Ultrace (I think) that people swear by.

The pancreatitis attack gave me a godawful headache. Not a migraine, not The Headache getting worse, just an all over the head noggin knocking headache. I think it must be because your body chemisty gets out of whack when your digestion acts up. Since this is the third attack (although the mildest) in six months, I am starting to recognize the headache pain that goes with it.

My belly is painful, I feel like I have eaten a bunch of prickly pear cacti and they are trying to burrow their way out. I did have a cup of tomato noodle goodness tonight, as my dear Mom sacrificed her last quart of home canned tomatoes for me. I'm paying for it - trying to distract myself from the ouchiness by doing stuff - I've mopped the floor (middle of the night but hey it needed to be done), folded clothes, scrubbed some countertops, and tried to blog. I've not been the greatest at any of it, but it is occupying my time until The Belly decides it's time to sleep.

I didn't get to work the last part of last week. I was so proud Tuesday because I had a full day at work! Then BOOM sick as a dog, like the Titanic sinking fast in unfriendly waters. I am determined to reclaim my life from this iceberg field of illness. I think if I didn't love my work so much I would just give up. It was very tempting to think about it Thursday and Friday, which were just lost days. But I'm getting myself together and tomorrow, I'm going full tilt hitting it again. One of these days I am going to win.

Yabba Dabba Doo!

I have Fred Flinstone Feet

I feel some better today with a day of antibiotics under my belt, even if the urologist insists I don't have an infection. My feet however are swelling and getting worse. I have lost my ankles today, and now have feet like Fred Flintstone - a fat leg going down to a foot with no ankle!

The CT scan done in the ER the other day shows some swelling of my kidneys. If I don't have an infection, did I pass another kidney stone?? The tests show me slightly anemic with an elevated white blood cell count with protein, blood, and white blood cells in the urine. Not sure what that indicates - looks like an infection to me but I guess I'm not a urologist. I ran a fever last night and this morning, and the urologist's nurse said I should get with my PCP (which I already had done). I'm thinking that this specialist is one that I can just write off. He is more interested in doing costly procedures than actually following me for real issues. His nurse said he considers blood in the urine normal. Well, its not normal for me! I guess if the ankles keep getting bigger I may have to see somebody again.

Still pretty nauseated, am going to medicate again and go to bed pretty soon. I've had some rice and canned chicken for supper, and it did not sit well with me. However my lipase levels were close to the upper range of normal from the ER labs, so that is a good thing. The pain is better today, again probably from the antibiotics I am taking for a non-existent infection.

The Headache is not cooperating tonight. It may be the cause of the nausea rather than The Belly??

At the ER the other night I met a lady who was patiently waiting to be seen to receive a shot of NuBain. Every time I am tempted to start feeling sorry for myself, God seems to give me a reality check by reminding me in someway there are persons with worse problems.

This lady had had migraines since the age of 3. She took almost daily injections of DHE to control her migraines, and she also had a healed head injury, a destructive rheumatic condition, and intercranial pressure that could not be drained. She said she had just moved to town from a little town about 30 miles from where I live, and appreciated being able to go to an emergency room, even when they made the headache patients wait and wait and wait.

I told her that in general protocol at this ER, headaches rank lower than trauma or flu or heart attacks and strokes because they are pretty sure you aren't going to keel over and die. She said she was having to go to the ER every so many days for the NuBain. The headache clinic in town isn't open in the evenings or weekends, and they wouldn't prescribe a rescue medication for her other than the DHE.

We both decided that ER's should have a migraine waiting room - dark and quiet, away from crying babies and TV's blaring and people talking and odors. I'm not sure why they don't - every time I am at an ER there is someone there with a migraine. The hours it takes to be seen seem like an eternity in that environment. They are building a new emergency section at the hospital, maybe I will make a case to the administrators and medical directors to see if they could do this. I think there needs to be a migraine waiting room in every ER.

Bilious Emesis

Erpiness Abounds

Managed to avoid going to the ER for The Headache, despite its continued obstinance and persistance the last few days. However, yesterday I started throwing up and couldn't stop. Ended up in the ER dehydrated and with The Belly having fits. Had to wait hours to be seen as the swine flu epidemic is ongoing here and the waiting room was full of sick children. One of the nurses told me there were only a few ER rooms that were being reserved for non-flu patients, so waiting was necessary. I don't think I will catch H1N1 since I am pretty sure I had it in May.

I couldn't tell what was going on with The Belly. Could it be the pancreas? Could it be another UTI? Could it be something else entirely? I had taken 2 doses of phenergan to try to stop the nausea and vomiting, but it didn't help. The projectile vomiting also made The Belly start humping and jumping with pain. I also had mid and low back pain.

The ER doc was very kind and gave me an IV and also a big IV injection of zofran and fentanyl. The pain was bad enought the fentanyl didn't really help it much, but it did let me drift off to sleep while I got hydrated. The nurse came back and told me that I had a bad UTI, and he gave me a script to have filled. I have lots of allergies that were documented and never thought to check the script - it was for Septra a brand name I did not recognize. I got home between 1 and 2 in the morning. When I got up in the morning I looked up Septra and found it contained sulfa, a no-no drug for me. That's why I double check everything...

I then called my urologist to see if they could prescribe a better medication. All I got was voice mail, so I called my personal physician and at least got to talk to a nurse. They didn't know what the doc would do as far as prescribing a better antibiotic. I stopped by the ER on my way to work to let them know that a mistake had been made, and got a script for macrobid to replace the one for Septra. I then went to work.

The urologists office called and said I didn't have a UTI per their opinion because I had no nitrites in my urine so not to take any antibiotics until they cultured the sample. I didn't bother to explain to them that I generally have enterococcus infections, a gram positive bacteria that doesn't create nitrites. I have been down this route with doctors before.

When I got home, ready to drop off the macrobid for filling, the pharmacy said my PCP had called in an antibiotic, so I paid for it and am taking it. The nausea is going down some this evening but the pain at the level of my kidneys is still pretty bad - it could be a UTI or it could be pancreatitis. Who knows? I will pull my records tomorrow to see what the test results were.

I have an appointment October 12th for my endoscopic ultrasound (EUS). I had called Dr. Gnome's office to find out the number to call the Joplin GI doc who was going to schedule the EUS since it had been a week. The receptionist somehow transferred me to another location where they have an office, that person there figured out no-one has sent my info to the Joplin doc (which is what I suspected) and promised that it will be sent today, then the receptionist called me at work while I am still on the line with her office and left me voice mail saying she's sorry I had felt the need to hang up!! I think the receptionist needs to figure out how to use their phone system...she was friendly enough, just a little ditsy on handling the transfer.

Tonight I am up into the wee hours of the morning, still quite nauseous and with considerable pain in The Belly that I am pretty sure is the pancreas. It's doing its dance of pain like it does when it wants to complain, I will take some medication pretty soon and try to sleep. I am so afraid of getting a physical dependence to pain killers that I resist taking anything and wait too long sometimes.

The right sided head pain is pretty bad this evening. It's been going off and on all day. It's not pleasant but it's livable. It is a boring pain through my right temple back to my right occipital region. Heaven preserve me from having the hemicrania continua turn into entire cranium continua!

Me and My Toilet

Quiet Saturday

Up late tonight, feeling very nauseous and have managed only to throw up once, but lying down makes it worse, which tells me it's not The Headache causing the nausea, but The Belly. I tried introducing some food today into my diet and think perhaps The Belly isn't really ready for food.

My friend The Toilet and I have been busy getting reacquainted this week. The Belly just is not cooperating with anything. I am very extremely tired, but because The Belly hurts worse when I lay down I am not getting much sleep.

The Headache calmed down and has been behaving its self. Which is good news, because The Belly and The Headache both at once at extreme levels of ouchiness was almost too much for me. I'm feeling down this weekend. I am so tired and I have been so excited that The Headache is semi-behaving itself and going back to work and then BAM something else happens. This is my eighth year of BAMtastic health, and I am worn out. I guess I should be thankful that I do not have fatal ailments or completely disabling conditions (although my family says I should give up and try for disability).

I just don't know how many more bizarre problems I can bear to have. One thing breaks after another. I feel like Einstein looking for the unified field theory - surely there must be one overriding ailment that is causing all of this, but there probably isn't. I fear that my health issues are becoming so complicated that they will become an impossible tangle of interwoven symptoms and treatments that just feed off of each other, and I will get caught in an even worse tangle of specialists than I have currently.

I've lost a bit of weight this week which is a bright spot when you can't eat anything. Fasting is one sure way to kick off a weight loss plan. Just 10 more pounds to lose before I get back to my pre-steroid pre-hemicrania continua weight. Yeah!

Bad Headache Day #20 2009

Tussling with the Toilet

Ah, the blessings of unrelieved nausea along with a bad headache...despite taking anti-nausea medication The Headache coerced The Belly and they led a revolt today. I spent a time this evening toasting the toilet with The Belly's blessings and The Headache's handiwork. Projectile vomiting is my speciality when The Headache gets to a certain place. EwwwwYuck!

The Headache got pretty ouchy but nothing I couldn't handle this time. I did pack my head and neck in ice and ended up napping on a ice pack which did help. At least this time the pain only escalated so far and stopped. In the past I have been caught at this juncture and the pain would continue to escalate with no end in sight. I can't tell if the intensity of The Headache is less, or I have just grown more enured to the pain.

The picture of a toilet is one I wish I had - my bathroom is overdue for a major remodel - it is a PINK bathroom, with a PINK toilet and PINK sink and PINK bathtub and PINK tiles and I don't like PINK!! I tried to tone it down using a complementary color (green) but it just seemed to make the PINK more PINK in appearance. Maybe just walking into the pinkness that is my bathroom could be causing the nausea!

I'm So Dizzy

My Head is Spinning and I have Jimmy Legs

Dizzy Dizzy Dizzy this evening. Nausea and dizziness are keeping me up tonight. Not sure if it's The Belly acting up, or The Headache being tricky, or the medication for The Legs. I've taken anti nausea medication today and it's not working, so I may have to try a different one tomorrow.

I am guessing it is a go for my appointment next week with Cleveland Clinic. I left voice mail with the study coordinator to see if my psychiatric test had been scored and evaluated by the study committee yet. I received no voice mail today, so either there is no news or the coordinator didn't come into work.

I worked a partial day today, and it was very productive. My poor bosses - wages and benefits are two major expenses for their company, and last year insurance rates increased 28% and this year the rates increased 18%. I believe in my state, an insurance commission sets the maximum percentage they can charge on an increase. I don't think my bosses get that chance to say to our clients - we are going to raise your rates by almost 50% in two years because the state says we can. I hope they don't discontinue the insurance we have because for me that would be a major undertaking to change all my doctors. I have no control over this, I worry because I may have to make an employment decision over benefits. I used to work for the hospital system that I utilize now, and I suppose I could try to work for them again, but I love my current job - hope there is no reason for me to try to move jobs at this time. I truly enjoy my work and believe in the company and what we do, and I really like all the people I work with. Haven't always been able to say that in larger firms.

I've had the "jimmy legs" all day. Probably means I am having more pain than I am realizing. Sometimes it makes it impossible to keep the legs still. I've sat with my heating pads on this evening, but I still feel cold even tho the house temperature is 81 degrees farenheit - plenty warm!

Get this Seinpost

Bad Headache days 4 & 5 2009

No Doctors Only Voice Mail Hell

Yesterday and today have been bad. Headache pain yesterday not extreme but bad enough on the Emily Richter Scale of Headaches. Vomiting again, stomach pain again, not good. Today headache pain in the midrange, but stomach pain elevating and now have mouth ulcers on my lips. Not sure if its from vomiting up pancreatic enzymes yesterday or the indomethacin - at this point does it matter???

I have not found one doctor who does the occipital nerve stimulator implants, and all I get is voice mail at my headache specialist. Never confirmation that it has been received. I called today and insisted on talking to a person. Even with this got sent to voicemail 2x, hung up on deliberately 1x, and only after asking to speak to the office manager was I directed to a person. Nicole (who I did NOT leave the voice mail message with - it was jeanine) stated that she had sent an email to Dr. B*****l who was practicing at Children's Mercy on Thursday and Friday, but Dr. B****l had not returned her email. My prior experience with voice mail at this practice has not been good - one time it took three weeks and multiple calls to get a simple question answered, and the last time they said they would send off for my medical records which they never did and I got no answer in four weeks. I am out of patience.

This doctor should be the one trying to round up someone not me. She is the one who will have to do the referral. I think she knew already that there was no one. I did find there is a Dr. Dodick at Mayo's in Scotsdale who is doing a study on occipital nerve stimulators, but that my doctor will need to talk to him to see if I qualify. My luck is I won't qualify. If I get a regular appointment I have been told it may be a year before I get one. AUGHHHH!

Another Sleepless Night Another Busy Day

Augie Tries Mom's Patience

Augie my little dachsund was on the warpath today because there were some visiting friend dogs visiting my brother's little beagle. Augster's sharp barking was getting on Mom's nerves so she let him out to investigate and/or play with the other dogs. THEN she tried to call him back, and he ignored her. I went and just said "Augie time to come home!" and here he trots in. Maybe Mom just doesn't have the sound of authority I do :D

The Stomach and The Pancreas has ruled this week, but maybe there will be some good news tomorrow. A friend, Amber Lietz, who is a nurse, recommended a drug called Zofran for the nausea. I will call my GI doc tomorrow and see if I can get it prescribed! I'm getting a bit dehydrated, and that always gives me quite a problem with charley-horses. Just one more thing to hurt and keep me from getting any sleep. I haven't eaten very much today - hopefully that will prevent the nightly nausea marathon.

I had another busy day at work, but The Stomach was creating much havoc because I tried to eat some food yesterday. Tramadol helped, but didn't get rid of all the pain. Maybe the enzymes will kick in and The Belly will Behave!

It was so sweet of Amber to suggest a solution to the yucky belly problems. I remember Amber when she was just a little gal in high school. Mom helped her make the cutest prom dress, and a beautiful wedding dress. Now Amber has beautiful children of her own looking all grown up and it doesn't seem possible. To us, it just seems like yesterday she was a teenager! I stole her picture off Facebook - and she doesn't look a day older to me from the last time I saw her.

It's a good thing when you can get advice from a pro, especially when your parts are so old they can't be replaced anymore, and your warranty is expired! Thanks Amber!