Tuesday, April 28, 2009
I Wish I Had X-Ray Headache Tablets
Now I know why no headache remedy has worked - they didn't contain radioactive elements! Found a picture of this sign on a website where they were documenting the trend at the turn of the last century to label everything atomic or radioactive as if that was a GOOD thing.
My sister worked for an old radiologist who swore he could cure colds and warts and everything else with radiation. Maybe you can, but I'm not sure about the side effects - having had some very large doses of radiation myself it is very strange. After a dose of radiation to an area I didn't feel pain - in fact pain was better - but I felt like I had cement blocks tied to my legs. The really High Dose Rate brachytherapy I had made me super emotional and depressed for three days - very strange - not my personality at all. After the doctors figured out what was happening they apologized saying they had not meant to irradiate my entire body - just a quarter inch into the skin, and changed the radiation source and the time for the third treatment, which did not give me the terrible emotional swings. So who knew that hyperemotionality and depression can be signs of too much radiation?? I think its called a hematopoietic reaction.
Going into work in a little bit, but my head is already saying don't go!
Good news again, the headache study coordinator called today to try to encourage me (I think she could tell yesterday that I am ready for this to be OVER). She had a lady who is almost through her second 6 months of the protocol just in, and the occipital stimulator has reduced her daily headache to 3 headache days a month, that weren't very painful. I hope it does that for me.
Monday, April 27, 2009
A Great Day Today
After seeing Susan Boyle's performance I have gotten hooked on Britain's Got Talent. I have found my new favorite man, Stavros Flately, and watched him perform his magic on stage. I haven't laughed so much in weeks, and won't be able to see Michael Flately the Lord of the Dance in the same light again. Stavros' young understudy deserves kudos also!
I was able to work a nine hour day today. Yeah!!! However, The Headache is letting me know that it is displeased this evening.
The Belly is behaving better. I think I have figured out that the recent Belly uprising is from the last toradol injection I had. No more toradol for me. The last few times I had injections the toradol didn't seem to help much anyhoo.
I get the trial occipital stimulator installed on May 6th at the Cleveland Clinic, and then go home and return to Cleveland in a week and have the stimulator de-installed on May 13th. I sure hope it helps The Headache pain because I have definitely run out of non-opiate options. I can't wash my hair for that week, so I will be going to work with bad hair days! I told them all I was going to wear a hat so I could then say I had Hat Hair.
Work has been so nice about all the time off I've been forced to take. I'm poor because I can't earn enough money because my old body won't let me and I have exhausted my time off, but rich because I work with a fantastic crew with great bosses. I don't even have to work by the break room anymore (I confess that with The Headache and The Belly both acting up I don't know if I could have taken break room cooking odors very well without medicating for nausea.) I have even adjusted to the extreme light situation in my area by hanging some artwork on the walls - it seems to deflect the harsh reflection from the white walls! AND I have a door to close if I need to screen out noise or odors. C'est Magnifique!
Sunday, April 26, 2009
Always on Time Always Dependable Always Inexpensive
Booked a flight to Cleveland for my brother and I on May 5th and back to St. Louis on May 6th so I can get my occipital stimulator trial installed. Cheapest flight within the time frames required I could find was Southwest again.
I have flown several different airlines because I travel for work. Some are more luxurious or have more frills, but for me Southwest is always dependable, on time, with well maintained equipment and experienced crews, AND I have never been bumped. And I save money at the same time. Yeah!!!!
I wonder if I have to go back the following week for another visit to remove the darn trial stimulator. They didn't mention it this time. I wish I could just have a local doc yank the thing back out. I would mail it back....I promise!
Friday, April 24, 2009
May 6th is the Day!
Have an appointment for the trial implant for May 6th early in the morning. I should be OK to head home that afternoon. I have to have someone with me, so I will see if my older brother can go. Since it is fairly late notice, I won't be able to get a cheap flight so we may have to drive it. I'm dreading the drive already! I am going to check St. Louis flights tomorrow to see if we can get a cheap flight from there instead.
Had my poor old pancreas imaged today a sort of surprise from my GI doc. What a way to spend an afternoon! I'm pretty sure my pancreatitis is from medication not physical blockage so I don't think the MRI will show much. They really wanted to inject gadolinium contrast but I refused because I had an anaphylactic reaction the last time I had it injected. It uses mast cells to create contrast and that's the problem I have - my mast cells really don't like to be messed with! I found an MRI of someone's enlarged pancreas, hope mine is better than this one!
Sunday, April 19, 2009
Drops of Acidic Pain in my Stomach
The Ensure diet is not working so well. Shards of pain are piercing The Belly, and the pain meds are not keeping up. Not sure what to do. Pancreatitis leaves you feeling exhausted and The Headache is making me even more nauseous. I think I will just curl up in a ball and sleep some more thinking positive thoughts. Maybe I will heal myself! Too much sleep and The Headache will come calling so I will have to balance The Belly against The Headache.
Saturday, April 18, 2009
Trying a Liquid Diet
The Belly is truly giving me fits this weekend. I will try to stop eating anything, and supplement with high protein Ensure. Unfortunately all Ensure drinks (and other comparible brands) are high in fat so this is not an ideal solution. The only flavor I can get down my gullet is vanilla.
I ate a bowl of Cream of Rice this morning and that upset The Belly, and this evening I had about a tablespoon of boiled potato and a tablespoon of steamed cauliflower and THAT upset The Belly. These are generally things I could eat a couple of years ago when I had my first pancreatitis attack. Will see tomorrow how the Ensure works.
The Headache was trying to grab all my neurons tonight because there is another storm coming in. I'm hoping The Belly meds will help keep The Headache at bay if only because these keep me feeling sleepy.
I am afraid if The Belly keeps this up I will end up in the hospital next week, which I do not want to do. Broken parts that can't be replaced are a bummer.
Friday, April 17, 2009
Stimulator Trial OK'd by Study Sponsor
Got a call today from the study coordinator at the Cleveland Clinic. I am officially approved for the temporary stimulator trial. There is one other person that is qualified also at their site. Lilly the coordinator did the interview over the phone (glad The Belly had acted up so I was at home!) mainly just confirming that I had not changed medications or alternative treatments in the last month. Of course I had very carefully not changed anything even toughing out a couple of times when I would have gone to the ER.
Per Lilly she has to write up her notes for the study sponsor and get other paperwork ready which will take approximately 10 days. She said she will schedule me for the trial surgery sometime in early May, and will call back with a date next Monday. Woo Hoo!!! I sure do hope this works. The stimulator in the illustration is the brand for the study, made by St. Jude's Medical, but I'm not sure if the leads are the same or if this one is used for the trial. I was told there were five different stimulators they could use made by the same company so no telling which one will be implanted.
Thursday, April 16, 2009
Bluebirds of Happiness in my Heart
Spoke with my study coordinator at the Cleveland Clinic and setup an interview time next Monday at 10:00 am Eastern time, 9 am my time. She said that the study sponsors have said I qualify for the trial (as I suspected a couple of weeks ago - see WooHoo number one) and the interview next week is a formality. I guess she has to write something about the headache diary and the interview questions?? Not sure. Just guessing that there has to be a "before" state and an "after" state in order for the study to have something to compare.
Went to urgent care again today and got some stronger pain killers for The Belly. My lipase levels have'nt fallen any since Tuesday, and The Belly is really kicking a fit at night. I'm not sure if I will take these but is comforting to know I have them on hand. The doctor said I could take more phenergan than I am to help with the nausea. Pancreatitis beware! I also bought some Ensure to drink - the fat in the Ensure hurts The Belly but I can generally keep it down when other substances fail. I will make an appointment for Monday for my regular doc - he is not there on Fridays. My GI doc is in the hospital himself for an illness. I am praying for a complete recovery for him - he is a very nice person and a brilliant doctor - don't see that combination together very often.
The Headache has tried to jump up a level or two on me today, but I guess I am taking enough medication The Headache can't sneak up on me.
My niece who has Greensleeve Gifts on Etsy.com sent me the cutest purse today with a bluebird of happiness on it. Made my spirits lift for sure. Only happy thoughts can be thunked by someone with a bluebird of happiness on her purse!
Tuesday, April 14, 2009
Acute Pancreatitis Attack
Today I went to urgent care. I was trying to go to work and the stomach spasms started again. I was closer to the urgent care than I was to my own physician's office, so that is where I went.
My lipase was fairly high, and I have acute pancreatitis again. I'm going to have to get off the indomethacin. I am trying to get through the occipital stimulator study to the point I can quit taking the indomethacin, but The Belly is not working with me. I was supposed to be off the indomethacin last fall when this happened but the pain is too bad when I don't take it.
I promised the doc I would take it easy, take some tramadol for the pain, and get retested in a day or so if it still hurts. If I still have an issue then, the doc told me it will be hospital time for me. Sitting around with an IV stuck in you for several days is not my idea of productive time, so I am trying really hard to sit still and rest for the rest of the week. I would like to have a year where I don't meet the out-of-pocket limit on my insurance, but when your warranty is expired and they don't make spare parts for your model anymore it gets expensive.
Monday, April 13, 2009
Rain Rain Go Away!
Today is another lost day. Medication I took to abate both The Headache and The Belly kept me asleep all day - I woke up briefly a couple of times, but that was it. I don't remember even calling in to work! I hope I did, but today is a blur.
The Belly is having a fit this evening with spasms of pain despite the trammadol. If it keeps up I may have to go have my enzymes checked. It is trumping The Headache this evening. I am afraid the indomethacin should be discontinued, but I haven't any alternatives at this time. Wishing my headache trial was at the occipital stimulator implant stage. I'm not sure if I can hang on taking the indomethacin until then, and I'm not ready to relive the hell my life was last year before the indomethacin.
My Easter company has left, and I don't even know when. I didn't even get to enjoy seeing them. I guess I'm just feeling down this evening. Maybe its just the weather that is getting me down. I have to trust that tomorrow will be a better day!
Sunday, April 12, 2009
A Long Day
Today The Belly has trumped The Headache. I have been so nauseated the last few days that I haven't been able to eat with the indomethacin to protect The Belly. It feels like my pancreatitis has decided to flare up again. The pain has been bad, but I have company so I am just medicating at this point. I feel like the guy in the first Alien movie when the thing pops out of his stomach - only the pain just goes on and nothing pops out!
The Headache is not so good this evening. I tried to lighten up the indomethacin to keep The Belly in check (I really don't want another hospitalization for pancreatitis) and don't think I have taken enough to keep The Headache from thumping up to another level. Sigh.
Saturday, April 11, 2009
Today is Lovely!
Beautiful and sunny today, but since I am having what for me is a good day I am spending it buying groceries, doing errands and cleaning house (sort of). I am having some guests tomorrow and hope to at least clean a few surfaces in main areas! I even had the energy to play with my dog Augie for awhile outside.
Thursday and Friday this week were awful for me, but perhaps it was the large storm system passing through? I don't know, as Saturday, Sunday and part of Monday were bad for me also. I guess I'm back to the old up and down cycle of BAD headache vs. TERRIBLE headache. Today is merely just barely bad. Yesterday was terrible, but I am sure tomorrow will be better!
I hope everyone has a pleasant day tomorrow. If I wasn't having company I would go to a sunrise service for Easter, but I am not taking any chances of aggravating The Headache. In my home town, one church had a beautiful stained glass window that they lighted from the outside (mimicking sunrise) during the sunrise services. Worth getting up early just to see the lovely glass.
Friday, April 10, 2009
The Rain Crow was Right!
Major storms came through last evening. The Headache was worse last evening, even after getting my injection of toradol this morning. Not a good day for The Headache or me.
The nurse suggested that I get my doc to prescribe a vial of toradol and syringes and that I could inject myself. If I wasn't in this headache study I would do that. If I don't qualify for the study or the trial doesn't help, I may ask my doc to set me up for self-injection. It's a muscle shot so I would probably need to inject in my thigh for best results.
Thursday, April 9, 2009
The Rain Crow Calls
In our family we call the mourning dove the rain crow. It was sighing its plaintive woo hoo hoo hoo this morning. We'll see if it is calling in any rain! Or just looking for a mate.
Because there are heavily wooded areas around my home, we have a diverse lot of backyard birds. Every year we get one or two that are outside of their general range of habitat. Deer come up and munch on my garden, and squirrels and moles are the bane of my dachsund Augie's life. Rabbits and lately armadillos are garden munchers too! I actively relocate the armadillos to the local creek - they aren't very hard to catch in a garbage can. Pretty soon the annual turtle migration will begin, and I'm sure we will get a couple of box turtles trundelling through.
It's a good day today. Now if The Headache will play along!!!
Wednesday, April 8, 2009
Cold weather gone? Hope so!
The local orchards are having a rough time of it. Freezing weather in April is just not normal in this part of the world. Peach trees, pear trees, and apricots bloom early and an untimely frost can mean no crop this year for these types of fruits. A couple of springs ago the peach trees were hit at just the wrong time, and the orchards tried importing fruit from California - just not the same as tree ripened fruit!
My cherry trees have not blossomed yet, and the iris leaves that are up are hardy and will survive the cold. We have had warmer weather the last two days, hopefully to last the rest of the spring.
I have some hollyhocks and yellow iris to plant that were given to me on my birthday and it hasn't been warm enough to try! I hope to plant them Saturday if the weather stays dry and warm.
I don't know how much garden I will put out this year, as The Headache is not cooperating. I will supplement with offerings from the Farmer's Market the same as last year, but that is not nearly as satisfying as picking your own produce. The picture is of my tomatoes a couple of years ago BEFORE The Headache.
I was bored and did an online test of the "real age" of my cat today. She is about 89 in cat years but healthwise she is about 79 years according to the survey. Wilsy was born in 1990, making her 19 years old chronologically.
I believe Wilsy is the oldest cat I have had the privilege to feed, but my grandmother fed an old barn kitty that was soooooo old he was bald on the top of his head and had no teeth. She fed him warm oatmeal and meat drippings every morning all of my life that I could remember until they moved off the farm (about 24 years) and my older brother and sister remember even further back. It was always thrilling to be able to pet TomCat (as he was known) while he ate. He was extremely leary of people unless he was being fed. He lived a great portion of his life in and around my grandmother's chicken coop killing mice that liked to eat chicken feed. I think he had a great semi-independent life that many tom cats would admire and there are probably great-grandsons of TomCat still inhabiting the barns surrounding the farm.
The Headache was acting up last night, but has played nice most of the day until late this afternoon. I'm trying to outlast it tonight, and am scheduled to get a shot of toradol tomorrow. Hoping for the best!
Monday, April 6, 2009
April 15th appointment to be covered by Phone
Yeah! Score one for me! Lilly the study coordinator checked with the study sponsors and I don't have to travel to Cleveland next week. I am so glad I didn't make plane reservations ahead of time this time.
Lilly said she will give me a call next week and ask some questions, and then review my headache log online. I sure hope I pass! The last few days have been lousy. I am missing work today and have taken a combo of trammadol, benedryl and phenergan so I hopefully can avoid going to the ER.
I setup an appointment with my PCP to get a shot of toradol this Thursday. I hope to hold out until then, because that is my cheapest avenue. I'm on such a tight budget this year since this is year two of only being able to work part time. The Belly does not like the toradol and I think The Headache is not responding to it very well, but I want to give it one more try.....
Sunday, April 5, 2009
Most of the day is gone and my head is achey still. I have managed not to go to the ER today (which makes me a $150 copay richer!) but am wondering now if I should have. Bad day - wonder if it's related to the weather? A storm blew in last night about 2 AM, and the cold wind has been blowing all day. A misty rain was falling and it almost felt like sleet. Very unseasonal for this part of the country.
I am proud that I managed to stop The Headache at the "Oh God" stage this morning, but the same measures are not helping this evening. The Belly is not cooperating either and refuses to keep food down. I now have a railroad spike of pain running from the back of my head into my left eye, with another spiking in from my left temple. I think my head is just broken. And all the kings horses and all the kings men couldn't put it together again!
It's cold enough today that I have not seen the usual parade of our Amish neighbors going to meeting. Perhaps they ran by in their buggies while I was zonked with medication. They are nice quiet neighbors, but I fear for their safety on our road - sometimes I hear their horses and buggies going by in the wee hours of the morning, and even with lanterns their buggies just aren't that visible.
I think The Headache is going back to the same pattern it had last fall. I believe the Solu-Medrol the ER gave me back in March has worn off and The Headache is up to its old tricks. I hope that the study coordinator in Cleveland finds out that I don't have to go on April 15th. That is a lot of energy for me to use just to hand over a palm pilot. I could just Fed Ex it if they need it physically back.
I spoke with a friend of mine today and it helped me put The Headache in perspective. She has conjestive heart failure and takes insulin six times a day for diabetes and about 30 medications. At least The Headache is not life threatening, just life limiting.
The headache diary continues to be difficult to transmit. Some nights it takes 3 to 4 tries. I am thinking of making a little sound chamber out of a shoe box to hold the telephone handset and the palm pilot, since it could be ambient sound effecting the transmittal - no way to tell. Maybe I will make it tonight as a distraction.
I had cancelled my appointment in Kansas City at KU Med Center with my headache specialist in April since I didn't think I had enough energy to go to KC and go to Cleveland in one month. The rescheduled date is in July and they were sweet enough to mail me a few more months subscription for the indomethacin! Hoping to have an implant by then, but as slow as its going now I have my doubts. I am just not a lucky person.
Friday, April 3, 2009
Appointment Cancelled Not Approved Yet
Apparently Cleveland Clinic got its wires crossed. The Ohio Anthem BCBS must have preapproved the stimulator trial. I called this morning and made an appointment to get the stimulator trial installed for next Wednesday, and THEN wah wah wah....the study coordinator called back saying it was not approved by the study and cancelled the appointment.
I'm not sure how they are getting in the insurance company to pay, my understanding is that it is investigational for headaches. Are they using a different diagnosis? Wish I knew! I don't like dicey doctor doings. Of course, I haven't had two specialists agree on my diagnosis since this thing started, so what's one more?
I did ask (AGAIN) if it really was necessary for me to go to Cleveland on April 15th just to hand over my headache diary. After all I am sending it each night and its not like I live very close to Cleveland!
Per the study coordinator (Lilly) the study has not said I am eligible for the implant. They are apparently still debating my overall health. Good Lord, its a wonder we ever get anything past trial stage if this is how clinical trials are performed. I'm OK for the study, I'm maybe not OK for the study, I'm not OK for the study, but then again I am OK for the study. The study sponsors haven't let them know yet. I can already tell that my horoscope probably stinks for today.
I guess this is a study in real-time disappointment (not occipital stimulators). Sigh.
Thursday, April 2, 2009
I'm PreApproved for the Stimulator Trial!! (I think)
The Headache has been acting up and I was too sick the last couple of days to pick up my voicemail. Today I found out that yesterday I had a message from the Cleveland Clinic saying they were pre-authorized to schedule a procedure with Dr. Mekhail (the pain management doctor in charge of my trial)!!! The only procedure that could possibly be is the trial implant!!! Yeah!!
I think the qualifying factor for the trial was that I had to have at least 15 days of pretty bad headache pain a month. It's been about 15 days since I started the diary, and most of them have been my average bad with a few superbads mixed in. I don't think it was my insurance since I just checked pre-authorizations today and they said they would not pay for the procedure anyway since it is considered experimental.
WooHoo!!! I wasn't expecting this until after I returned the headache diary to Cleveland April 15th! I will call first thing tomorrow. I'd like to get this business over with. I am prepared to be disappointed and have the stimulator not work like everything else has not really worked. If it could just get rid of 30% of my bad headache days it would be fantastic.
I got five hours of work in today and am not in too bad of shape this evening. Hoping tomorrow will be good also. Hoping I won't be disappointed tomorrow. Sigh.