Sunday, September 30, 2012
Talked with the management of the BAD ER I saw a week ago. This is how the conversation went:
ER Director: "My nurses didn't do anything wrong"
Winny: "They were TRIAGING in the order people presented"
ER Director: "That is what Triage is. They WERE taking people in the order they presented."
Winny: "Don't give me that, I have worked a triage desk. That is NOT traige. Triage is the worst first."
ER Director: "Well, maybe the person they took in WAS worse."
Winny: "I don't think so, and you JUST TOLD ME the criteria was the time people checked in."
ER Director: "Are you a nurse? Do YOU know the FIVE LEVELS of TRIAGE?"
Winny: "I don't have to know the FIVE LEVELS of TRIAGE to know you were not triaging properly. I have been at your ER before many times and have always been traiged properly before. Something was badly wrong this time and that is why I am complaining."
ER Director: "Well the board said you had a 'headache', I am sure the child they triaged was worse."
Winny: "I am sick of the prejudice people exhibit about headache pain. I had "SEVERE PAIN". I complained to the ER clerk 2x's my sister once. Nothing was done. Nor was I triaged."
ER Director: "I have heard this about this prejudice before, it does not exist. People say the same thing about having Medicaid coverage."
Winny: "I work with medical, I know about being prejudged by a nurse that thinks I am drug seeking. I have experienced the prejudice against headache patients up close and personal more than once so don't give me that!"
ER Director: "I checked your medical records. These were the same nurses you saw before the last time you were here"
Winny: "Oh, really?? Can you really say that the SAME EXACT nurses were on staff that were on staff the last time I was there? Because I really don't think so."
ER Director: "I can't do that, so I guess they were not the same nurses"
Winny: "I thought so."
ER Director: "You need to complain to the head of registration. The clerk should have notified the nurses"
Winny: "The clerk cannot make medical decisions. Do you have the clerk making medical decisions there??"
ER Director: "No, the clerk cannot make medical decisions. But the clerk should have notified nursing. He was new."
Winny: "I suspected as much, but that should NOT be my problem. You coordinate with the head of admissions if the admission clerk is causing issues with your ER procedures. Your nurses are in charge of the waiting room just as they are in charge of the triage room. They need to keep aware of what is going on in the waiting room."
ER Director: "They had emergencies in the back, and were transferring a patient. They were busy taking care of patients"
Winny: "I don't have a problem with that, but they need to keep aware of what is going on in the waiting room, not rely on a clerk to let them know. AND we let the clerk know what was going on. The lack of communication again is NOT MY PROBLEM. You need to make your nurses aware of what a person in extreme pain looks like. I was not jonesing for a fix. I was in EXTREME PAIN, which I communicated as clearly as I could. Someone somewhere made a decision that my pain was less important than a child with the sniffles. I have a problem with this big time. I was not asking to be seen in front of a true life or death emergency. I was asking to be triaged, properly triaged."
ER Director: "Well, there were ambulances coming in."
(I let this lie lay, but it is a teeny tiny waiting room, you can HEAR an ambulance come in. The ambulance bay is next to the door. Duh!! )
Winny: "I don't need excuses, I need this not to happen the next time someone in extreme pain presents at your emergency room"
ER Director: "You need to complain to the registration supervisor. My nurses did nothing wrong. They let me know that you had an issue."
Winny: "If they had acute patients in the back, they certainly had no problem leaving them to come and gawk at me through the fishbowl the clerk sits in when I did a melt down. If they are aware of what is happening THEN why was I ignored out there?"
ER Director: "These might have been radiology techs or lab techs that were there. Those couldn't possibly have been my nurses"
Winny: "These certainly looked like nurses to me. I was insulted by this and the clerk certainly knew how to pick up a phone to call security when I blew up."
ER Director: "Security isn't there that time of night and the police were not called"
Winny: "That's because the clerk hung up as my sister hustled me out the door while he sat there with his mouth open, and the rest of the crew stared at me, no one offering ANY ASSISTANCE."
ER Director: "Well, you need to follow up with the registration supervisor."
Winny: "I'll tell you what I am going to do, I will follow up with the registration supervisor, but I am also going to follow this up with letters to your administration. I also am requesting you educate you staff on what EXTREME PAIN looks like. We don't sit still, we aren't quiet, and we aren't pleasant. That's because we are in EXTREME PAIN. I am also going to get with my physician to get injectible meds so I don't have this problem again and will not need to use your emergency room in the future."
ER Director: "That is good about the injectibles. This is what I did when I had migraines."
Winny: HANGS UP (Thinking, yep the ER Director won't go to her OWN ER when she had migraines. Figures!!).
In the meantime, my very nice PCP drove over to the pharmacy and hand delivered my prescriptions for injectible meds, including dilaudid. He had extensive instructions and wanted the pharmicist to receive them in person. How many doctors are left that would do this? A bright point in my week!!!
Hoping all of you have pain free weeks ahead, and never have to put up with what I did at this ER. After I am through with this ER I hope they will never treat a person in pain or a person with a headache the same way. I am ready for Round 3!!! Ding!!
Saturday, September 22, 2012
I have been attempting to work for my ex employer as a contract employee. They were generous enough to offer this to me, and it was a better deal than unemployment. However, this week has been a very hard week to remain working.
Travel is difficult, even now just commuting to work at the office is too much. I am foolishly trying to work, thinking maybe I should just hang up my dancing shoes permanently - I'm like a ballerina with too many injuries and way too old trying to keep those twinkle toes twinkling. Maybe not such a good idea.
I was working Friday, and everything was normal. Too much work with too little time. The usual lately for me. I was on deadline, and had just finished a project getting ready to send it securely via email when BOOM The Headache hit.
I went from slightly nauseous (my normal state of being) to projectile vomiting in a split second. Every time I threw up, the pain increased, big leaps with each yuck up. In just the span of a couple of minutes I was on my knees screaming in pain. Not your normal scream. A scream where you are holding your head, your teeth are tightly clenched to stop yourself from screaming, yet screams still go out. I went from my normal aggravating 4 to a 10 in those few minutes.
When I am this way, I cannot think, I cannot talk, I can barely walk. My brother, who had not really ever paid attention to how bad my headaches (bless his heart, I really think he thought I was on all these meds because I am an addict. How I wish that was true! I'd rather be an addict I think than deal with the kind of pain I am forced to) didn't know what to do. My Mom, who is having problems thinking due to multiple small strokes, can't dial the phone. I go over and get the phone to autodial my sister, and I was able to get out that I needed to go to the ER. Next time, after my experience this time, I think I am going to go by ambulance. It will be easier on her than what she had to put up with this time.
She gets here in about 15 minutes which is a miracle from God. An ambulance generally takes 20-30 minutes (I have all this timed in my head since I have been at these levels of pain before, and everything you do can mean more time spent in Headache Hell with no escape) so I was as happy as someone who was in that much pain can be. I asked her to take me to nearest emergency room.
I have gone to this ER in the past. It is at a small local hospital, and the staff have always been prompt and understanding. I don't mind waiting my turn to be seen, but am used to being triaged within minutes of presentation. Triage in ER means the most urgent are prioritized even as to who gets traiged before someone else.
There must have been turnover in management since the last time I was there (last spring sometime). I go in and there is someone I had not seen before sitting at the admission desk. To my pain crazed eyes this person (and I am not sure of gender) looked just like Jabba The Hut, a Giant Jabba The Hut at that. Jabba said something to me in Hut language I didn't understand but I did croak out my name and Jabba asked in English this time for an ID. Jabba enters it into the system while I am sitting with my forehead banging on the desk in front of Jabba's protective glass cage. I am weeping with pain by now. Jabba mumbles something else Huttishly and I say "I am having a very very VERY BAD HEADACHE!". Jabba then says "You will see a nurse in a couple of minutes, have a seat in the waiting room." Here is my impression of Jabba as I am sent out to the purgatory of the waiting room and after I asked for a vomit cup:
I go out there. I see a couple of families with sick kids, nothing that looks urgent other than the poor sick children with ear aches and sore throats. I am too busy trying to stifle screams of pain, as the headache has taken off again. I am melting down, swimming in pain, waiting to be traiged. I see parents trooping back and forth from Jabba's cage, complaining about their wait time. I say to myself "Joy, I am here on the night they do not have any help or maybe just lazy help working the ER" while mentally I am ticking away how long it will be until I get some relief of pain.
I am vomiting and vomiting into my cup, at the same time this sets the pain crazy. I actually scream a couple of more times, and go and bang my head against a few walls. My nose is running, and my left eye is tearing, and they used some kind of industrial cleaning solution I can smell over even my throwup cup, making the nausea even worse. I am truly losing control because of pain. I sit and tremble and my sister comes in and tells Jabba I am in terrible pain. Jabba says "The nurses know she is out here." What the hell does that mean?
To me that says the nurses know I am out here in THIS kind of pain and they are not going to do ANYTHING. They are not going to triage me and they are going to make me wait until I am the last person in the ER because they have prejudged me as being medication seeking. Yes, at this point I AM medication seeking. However I have TONS of medication at home, but right at this moment they are of NO HELP. I need injected medications to stop the pain and the nausea both, because once The Headache jumps the traces there is no way to put the Genie back in the bottle without major medication.
I wait and wait and wait. It seems like hours, but I estimate I was about 45 minutes in the waiting room waiting to be triaged. I tell Jabba the Hut, "I am in extreme pain. Do you have any idea when I am going to be triaged?" Again I get the reply, "The nurses know you are here." They spit out one person with a bunches of stitches in his finger who met another radical dude friend of his in the waiting room talking about seeing the bone. Ewwwww. Then the nurse finally comes out to traige the next person AND starts with the next person per sign up time. I lose my cool.
I am not normally a shouter, I am not normally a screamer, I am not normally short fused. However, this was not a normal situation. I was in an abnormally large amount of pain. An amount of pain that was beyond my ability handle physically and emotionally. The nurse calls one of the sick kids back to be traiged and closes the door. I normally am sympathetic to sick children, but I am past - way past - being sympathetic to ANYONE. I approach Jabba the Hut again I am told "The nurses know you are out here." In all this time I have not seen Jabba move from Jabba's throne. Jabba has not picked up a phone, Jabba has done NOTHING but put my name in the computer. Jabba is pretty worthless.
In losing it, I became profanely angry. I shouted at the top of my lungs "What kind of idiots are hired here?" Then follow it up "Can you NOT SEE I AM IN TERRIBLE PAIN?" Then (cover your eyes those who don't like foul language) I am pretty sure I shouted "Someone could come in here with Their FUCKING LEG CUT OFF BLEEDING TO DEATH and YOU FUCKING IDIOTS WOULD JUST IGNORE THEM!" All of sudden all the healthcare people who had been staying away from the triage room, away from the waiting room, and away from ME, come jumping out of the woodwork. Not to assist, but to stare at me. Jabba apparently remembers that Huts can use a telephone because I think Jabba was scared and calling for security.I swear if I had a chain to wrap around that Hut's neck right then, it would have ended up just like in Star Wars.
To top it off the idiotic triage nurse sticks her stupid head out of the triage door looks at me like I'm disturbing HER and I say (as my sister tries to hustle me out the door before I am arrested) "YOU DON"T FUCKING KNOW HOW FUCKING MUCH PAIN I AM IN AND NOW I AM GOING TO GO SOMEWHERE ELSE TO WAIT HOURS MORE BEFORE I CAN GET ANY HELP! YOU FUCKING IDIOTS! YOU FUCKING DON'T CARE" or something to that jist. I am pretty sure someone was on their lunch break, and none of the lazy gits back there would move their butts to take a turn doing triage. And I am certain they didn't care. I am also certain they thought I was drug seeking. Idiots!
My sister drove me to my regular big city ER 45 minutes away, where I was triaged within two minutes of hitting the door. I didn't get seen for another two hours, BUT at this hospital they put me in an area where I could sob and bang my head against the wall and vomit for hours in relative solitude. They kept me supplied with ice packs and hot blankets and towels to cover my head. I was not asking to be seen before other people at the first ER, I was asking to be TRIAGED as a true emergency, not like someone using it as a walk in clinic, taking a number and waiting my turn. If you aren't going to actually triage people, then don't call it traige.
I will say, after the hours and hours of extreme pain, it only took minutes before I had pain medication, anti nausea medication and benedryl injected at the big city hospital. I have injectible phenergan, wonder if I could injectible benedryl and injectible dilaudid to keep at home for emergencies?? I have benedryl and dilaudid in pill form, but when the pain hits like it does, I have no choice but to go to an ER for injections. I probably also needed an IV but that would have taken more time, and my poor sister had waited long enough.
I am sorry my sister had to sit and wait with me for hours. It is not pleasant to watch, She gets a medal for big sister of the year from me. Also from not laughing too much at my meltdown. I am sure it was memorable. I am generally the model of self control (Ha!) and this is the only time I have done this in an ER.
I was at my limit when I lost it, and I"m not proud of it, but dang I'll bet it was humorous to watch. My apologies to my relatives that are nurses, but you should have seen the looks on their faces! They were all standing around (which tells me they didn't really have any acutely ill patients in the back - professional nurses don't leave a patient to go gawk at someone spectacularly burning bridges in the waiting room.) My sister managed to keep a straight face. I have seen her go down in flames and do burn outs a few times over the years. She just isn't used to seeing me do it! Ha! We ARE related after all!!
I have decided to go on the offensive. I refuse to be treated as a third class citizen because somebody thought if they made me wait long enough I would burn through the migraine and it would be gone by the time they had to deal with me. I refuse to be treated as a third class citizen because Jabba the Hut is not trained to escalate issues with nursing. I refuse to be treated as a third class citizen because someone who doesn't know me or talked with me thinks I am exhibiting drug seeking behavior. Hell YES I was drug seeking - they would be too if they were in that kind of pain.
I am writing letters. I am sending it as high up the ladder at the hospital association that owns this ER as I can. I am taking names and kicking ass as well as I am able to, at the same time I am going to try to educate these imbeciles on what type of headache disorder I have, hemicrainia continua. The pain doesn't go away and it is worse than any I had with migraines over the years. I can be at the level of pain for hours and hours and hours (as I was) and it will not go down until I force it down with medication. They need a primer on how to treat an acute headache patient. They need a procedure to follow that would have them properly triaging patients. They need education to know the difference between someone Jonesing for their addiction of choice and someone who can't keep still because of the level of pain they are in.
Leaving you all with my anthem song for the weekend. TwistedWinny and Twisted Sister - We're not going to take it anymore!!!
Saturday, September 15, 2012
I have not been writing this last year or so very much. My pain has been extremely difficult to control, my weight continues to drop, my fatigue levels are extreme, and my stress levels at work (not because OF my work but rather the situations surrounding the work) were extreme.
My world has been fairly bleak, not depressing really, but simply one extreme of pain to another extreme of pain while trying to maintain enough functionality to remain working. My own stubborn refusal to stop working along with a sense of obligation to the people who kept me with insurance and employed during these last few years kept me going, often against medical advice and the advice of family.
My employer removed this obstacle for me during a downsizing move a couple of weeks ago. I, along with seven others, was "downsized" just after they had upsized the company with a hiring spree. The company is a young company (having bought the company I used to work for last year) and is experiencing the same growing pains many companies do in the first five years of existence. I am still doing work for them as contract labor, so bless their hearts I suppose they really didn't want to get rid of me but this makes it even more difficult for me to decide what to do about my health situation.
Next week I see my PCP to talk about disability, short term disability, and whether or not I qualify for SSD. He told me last year when my bladder quit working correctly that I needed to quit and go on disability. It is just hard to do even when essentially forced into doing it. If I continue on with part time contract work, I am not sure if I will make enough to afford COBRA. If I keep my work hours down where they really should be I am not certain if they will want to keep me on as contract. If I make too much money or work too many hours I am "gainfully employed" and will not qualify for disability. I do not have any long term disability. Huge sigh.
The Headache continues it's cycle it has maintained since I lost so much weight last year: one to two times a month I am forced to go to the ER for extreme exacerbations of pain. The stimulator helps me on a daily basis, however I never have a day when I am pain free. The physical aspects of The Headache continue even if the pain is not as large a component as it was - the stimulator keeps it down most of the day at a 4-5. Some days like today it gets back up in the 7-9 range and my eyes get wacky and the facial pain gets unbearable,but at least it is not every hour of every day like it was before the stimulator was installed. Using pain medication is still an issue, so if I take opiate based pain relieve more than two days in a row The Headache decides it will pitch a fit and then I am in trouble big time.
The Stomach is a problem, as the pain is constant and severe now. I eat a cup or so of food a day and try to eat a real meal every third or fourth day. I hope that my pancreas function will continue to decrease as the literature states eventually the pain may go away. I was told by my new local GI doc that my pain is not now from bacterial overgrowth but probably from the other GI issues like the chronic pancreatitis and inflammatory gastritis I have.
My pelvic pain really increased last fall after travelling - about the same time the bladder dysfunction became permanent. It is difficult to describe and something I felt I just could not explain to my new bosses. They showed a distinct dislike for my open communication about my illnesses; I really am not sure why unless they knew from the beginning my position was going to be eliminated and just did not want to know very much about me personally or perhaps if they knew they felt they would need to try to accommodate my physical needs and just did not have the means or desire to do so. I guess since I am now self employed sort of I can decide how long I have to sit stand etc for myself!!! WooHOO!?? The problem being is that standing sitting or lying down - none of it is comfortable.
Falls are becoming more frequent. I have fallen and seriously injured myself three times this year, twice to the point of knocking myself out. I have fallen less severely several times more. I fear falling, and use a cane to assist with balance. This is something that is difficult to explain. I don't need to use a cane because of extreme weakness or an altered gait - I use one to help me not fall as often, and to distribute my weight so not quite so much is centered in my pelvic region. My reflexes are somewhat flat or absent in my feet ankles and knees so I don't respond well when I do trip.
Fatigue and sleepiness are huge issues. I have almost given up driving. I am dangerous to myself and others because I fall asleep driving. I think I am alert and the next thing I know I am asleep with my eyes open hallucinating cat faces on the back of semi trucks. My family tried to help and drive me to work but that didn't last - they all have too many problems of their own. At least as contract I don't feel as obligated to go into the office as often. I can work around necessary nap times and daytime sleepiness. Some of this is the medication, some if it is the nutritional problems I have, some of it is the lack of sleep from uncontrolled pain, some of it is the sleepiness that increased after installation of the stimulator.
Sciatic and other nerve pain in my lower spine and legs has gotten worse. My feet cramp so badly it can be difficult to put on shoes and moving at night in my sleep can set off an hour of charley horses and foot spasms. I have difficulty standing for very long, and sitting for very long. I get the "jiggles" and can't keep my legs from dancing if I am on them too much.
From the falls my spine is incredibly painful and I hurt enough it takes effort to sit upright and put the pressure of gravity on my back. That seems silly but that is how it feels. Just the weight of my head on my back is enough to make me dread getting up in the morning. I was able to avoid neck surgery last spring by seeing a great physical therapist, but the last two falls did not help my back situation out any. Not sure if I slipped a disk or just pushed something out of the way.
My bowel issues fluctuate from not working at all to working too well and too fast. I am not sure how this will work out, since contrary to what the doctors told me last summer, the better I control my pain the less problems I have with spasms. Go figure.
The one problem that is very hard to face from the botched radiation therapy (and guys feel free to stop reading here - this is girl talk) is the vaginal atrophy. Not only is often painful on top of the other pudendal nerve related pelvic pain, I am told by my gynecologist that the end result is that I will end up without a vagina. Now, I don't know how a male doctor would feel if his treatment unintentionally atrophied painfully a patient's penis off and away, but apparently they think I should take the loss of female functionality in stride. Just another fun filled fact of radiation overdosage. I guess since I am not using it at the moment, the thought is I won't miss it?? And guess what, because it comes from radiation damage I am told there is little or nothing that can be done. Estrogen cream may slow it down a little bit. Otherwise I am out of luck.
My bladder dysfunction continues. My urologist wanted me to get another nerve stimulator implant but I have procrastinated. With all the pelvic pain I have the thought of actually trialing a stimulator in that region just makes me cringe. I just can't face it. It is one thing too many. However I am having a constant struggle with bladder infections because the lack of good sensation makes me at higher risk with the cathertization I must do. Another worry if I lose insurance. My catheter supplies are several hundred dollars a month, and without this step I am told I am a candidate for kidney failure from back pressure from the bladder and urethra contraction issues.
On the upside, my mother is doing a little better healthwise but less well with other functionality. Last spring the doctor wanted her to go on hospice since she really failed fast after having the flu. I worked very hard getting her to eat and her energy levels back, and got the OK last summer from our doctor that hospice could be delayed for awhile yet. I worry that if I go down completely healthwise what will happen with Mom. Some days it is very difficult to cook for her since not only do I not have an appetite, but the smell of cooking can be overwhelmingly nauseating. Maybe if I was a better cook I wouldn't have this problem!!!
So here I am in the wee hours of the morning, undermedicated, in pain so many different ways to Sunday it is unbelievable, wondering how I will be able to afford COBRA, wondering if I get disability what I will do for healthcare for the year or so it takes to get Medicare, wondering if I will be able to continue to earn any money, wondering what will happen when I can't work, wondering what will happen if I keep trying to work, knowing some of what is going to happen regardless of all the what ifs.
I keep repeating the old saw "How much wood would a woodchuck chuck if a woodchuck could chuck wood??" I'm a woodchuck and the wood and the wood pile at the very same time. Very Zen of me I think. I'm my own sound of one hand clapping these days!!! Ah well, I will know these secrets in my dreams - just hoping those dreams won't come on me as I am driving down the interstate and the big truck in front of me turns into a giant woodchuck!!!
Hoping everyone has a pain free weekend. I hope to start blogging more frequently and keep up with my blogging friends better. I have been too self absorbed this last year or so, and that is not a healthy frame of mind for me. Better things are on the horizon and a lot more wood to chuck!!!
Friday, June 29, 2012
June 29th has been designated as the day to heighten awareness of chronic migraines and the devastating effect they can have on the lives of those who have this condition. The colors of the "ribbon" used for this are purple (for migraines) and red. I am wearing purple and red to work tomorrow in solidarity with my friends who suffer from chronic and/or intractable migraines.
I have not been posting. I have neglected my web friends and my blog. I have been very sick, mostly due to increased pain and digestive issues. I am trying to work full time, and have been lucky enough to work from home on days when I can't make it into the office. However, I really need to work MORE than full time just to keep my head above water with the workload I have. That is adding more stress since I hate to do anything without full and total commitment. I hope I can someday start working more with this blog again. It has always been a source of relaxation for me.
The Belly has been ruling my world since March. I have passed kidney stones a couple of times since then, battled infections, battled gastroparesis, fought with neuropathy and increasing issues with nerve pain and dysfunction from the radiation therapy I received. The Headache has woken up a couple of times since March, the latest being last week. Sigh. Wishing for an entire body transplant!!!
The Headache hit strong and hard about 10 days ago. There was "dry thunder" going on. I had worked a couple of really long days at the office because we had clients from out of town and I had been drafted to assist them on setting up their software. I was heading home at 6 PM, and started vomiting. The head pain when from a four to a ten in about 30 seconds. I drove myself to the ER clear across town throwing up all over myself and my car. ICK!!!
I was in such bad shape by the time I got to the ER desk I could not talk, just shake in pain. I was able to croak out my name, and someone got a wheelchair to take me back for triage. I was bad enough they kept me in the triage area until they had a room available. I couldn't think, I couldn't talk, I couldn't walk. All I could do was cry. I forget what the pain was like before I had my occipital stimulator installed until I have a day like this.
They got me back in a room, and I remember thinking I really can't stand the pain. I couldn't even get myself into a gown, which for some reason makes me feel full of shame, as if I was at fault someway. I passed out from the GodAwful Pain and when I woke up I was extremely disoriented - maybe because of the pain, maybe because my blood pressure was in the 242/110 range. I was alone in the ER bay and had some problems really comprehending where I was at. I remember getting out of the ER bed unstrapping a bunch of stuff and trying to figure out where I was. This is not normal for me.
I finally found a call light and buzzed it but was still so disoriented they had a hard time getting me back in the ER bed. I guess my eyes weren't responding well to light or anything else, but the pain was incredibly bad. I don't know what I will do if my stimulator ever stops helping with the pain. I am not courageous enough to face this on a daily basis again.
I had the letter my headache specialist had written for me last fall, for situations like this. It helped but the pain was so bad the doctor didn't really take the time to read it very closely. Benedryl, phenergan, solu-medrol, and at least three IV injections of dilaudid barely touched the pain. But once it got down out of the ten range, I was able to start thinking again. I finally told them no more meds, since the pain wasn't going to go down anymore.
I have had more than my share of experiences in emergency rooms the last few years. I hear other people tell the nurses that on a scale of 1-10 they are at a 10. I don't know if I am more of a wuss than those people but I am at total meltdown levels when I am at a 10. Not saying these people don't feel dreadful pain when they say 10 but I can't physically make my body obey me at a 10. I tremble and shake all over, and stutter badly when I try to talk. I keep apologizing for causing so much trouble in words of one syllable kicked out between clenched teeth between groans and actual screams. That's how bad it was - they closed the door to the room because I couldn't screaming and weeping the word PAIN when The Headache decided to see if I could take more than what I previously thought was a 10. Terribly undignified. Like peeing your pants in public undignified. I lost any vestiges of control I thought I had over my body, my brain, and my reactions.
The medications finally helped a little bit, at least enough to get me off the ledge I felt was on. The solu-medrol helped for the next few days, but now The Headache is swinging back up the pain ladder tonight. I fear this total loss of control in front of the people I work with. I hope to go to sleep soon and get to work again tomorrow. Today has been a very tough day.
The Belly pain is bad tonight. The solu-medrol helps The Headache and makes The Pancreas flare up. I feel my life has become a struggle from one day to the next, with different systems of my body failing me and all of them hurting me. I know there are persons out there in worse pain than I am and I truly am lucky to be here and functioning as well as I am. When I started this journey into chronic pain, I was not prepared for what it takes out of me.
I am tired of fighting to be more normal, I am tired of fighting to keep working, I am tired of being sick, I am tired of being such a whiner. I am being a wienie, and I don't want to be one.
Thursday, February 2, 2012
Yesterday found out from my PCP that I probably started an inflammatory response in my spine from my fall. He was aggravated that the ER docs just treated the pain and NOT the inflammation which my PCP says can cause some real damage. Pooh! Just what I needed more bummy sucky not what I wanted to hear news!!! My best laid plans are fully of kitty laughs at how poorly they have performed.
He gave me a bit shot of prednisone and a script for a three day "burst" of prednisone to drop the inflammation and hopefully stop the new onset incontinence and the new onset numbness. Downside is that he said as the inflammation drops I will start to feel "new" pain. OUCH! And he was right! DRAT!
My PCP also gave me enough meds to make sure I didn't keep moving yestersday. I had 15 minutes to get home and then ZONK I was out like a light. No time to call work, write work, or do much except sleep. Sometime in my snoozathon I moved from the sunroom couch to the living room couch. I finally stumbled to bed around 11 PM. Sigh.
Got back to work today at around noon. The pain in my teeth came alive - this is now day 2 of prednisone, one day left. Everything hurts but it could be worse, better than broken bones by a long shot! Lots to do and not much time to do it in, so maybe I will be up to working this weekend. If I do I may need to rescind one of the days off I took for the fall. Big Sigh.
Am fearing I may have to have a new set of choppers in order to set my teeth to rights - not sure if they will be able to be saved - the pain is deep set into my spongy bone around my teeth - they feel like they are knocked loose - and with more pieces falling off every hour or so, am afraid the roots might be dead. I lost big chunks of tooth today, so hoping I have some teeth left by the time I see the dentist at 12:30 on Friday Ptoooey!
Tuesday, January 31, 2012
I haven't been posting - too sick or too hurt or too stressed or working too many hours that I shouldn't. Members of my extended family have been ill, or have found out bad health news, or are just stressed too. Hoping that their conditions will work out for the best, if mine worsens so be it.
I went to the A-Team (my headache specialist and the headache clinic) this month and they were as kind as always and had some more options for me to try. Every time I go in, my doctor takes the time to review my case and research to see if any new studies have been published before my appointment. You would think all doctors do this, but in my recent experience I have found it a rarity, so I am pleased that Dr. Hannibal Smith and his team do this consistently. He also wrote a letter for me to have with me when I do have to go to emergency rooms that gives some basic guidelines to the ER docs on how to treat my hemicrania continua during an extreme pain flair. He also gave me some literature on HC to go with the letter. I am hoping this will help both me and the ER docs. There are so few hemicrania continua patients that the ER docs and nurses treat it as a migraine because that is the headache condition they see most often.
I fell really really hard last Friday down some stairs while I was mopping the floor. Missed work, and my sister was kind enough to take me to the ER to be checked out. My lower lip and chin are still numb from the fall - how I hit this I don't know but I broke several of my front teeth and knocked part of a filling and crumbled the side of a tooth in the back. The docs thought I might have a mild concussion also - I threw up several times during the night while I waited to see if I should go to the ER. I knocked ribs out of place and was able to crank those puppies back where they should be while I was still numb from hitting the floor. I have a problem with my ribs going out dating back about 20 years to a fall on the ice. I think once you injure yourself bad enough the old injury keeps popping up when you try new acrobatic tricks when falling. I must be made of rubber and bounced pretty well since no bones were broken.
The pain from the fall has been really bad. I don't seem to be bruised badly - there are a couple of spots that show bruises - but the pain seems to be coming from the pelvic region and my right hip and leg. My incontinence issues have gotten worse yet again, perhaps from bruising the nerves? I am going to have to start using protection at night if it doesn't clear up soon, as it is happening in my sleep since my fall. My teeth hurt but I have a dentist appointment Friday to see what is going on there. Maybe my major medical will cover part of the repairs - that would be a big WooHoo!!!
I see my PCP this morning to see what if anything can be done with the increased pain and incontinence. Maybe it will calm down after a week or so. I seem to only have the sensation of pain, and am not aware that I am having incontinent episodes. I will just have to move forward and hope that this latest set back goes away after my body gets over the shock of the flying leap and the splatted landing. Note to self - do not fall with a three gallon bucket full of dirty mop water again!!! Not only did it through me off balance I had to lay there in that mess and then clean it up and finish mopping. My feet are so numb I am not sure what made me fall - I suspect mop water sloshed out and I stepped in it.
I plan to go into work today after going to the PCP. Not sure how I will be doing, but I need to make the effort, because it is not work's fault I am a clumsy oaf! I also have an appointment Thursday with my urologist to see if I need to continue the intermittent catheterization. I had a very bad UTI since starting the self-cathing but this could have been from fecal incontinence or not being careful enough with the catheters. Makes me cringe to think about it.
I am somewhat drugged - the pain has been horrid in my back and in my abdomen. For some reason my liver and kidney hurts on the right side and my spleen on the left are terribly sore. Just what I need, another part/piece deciding it doesn't like me and leading a revolt of the innards!!! Maybe you can bruise your insides as well as the outside - maybe that's why the ER docs gave me literature on deep contusions??
I hope this post makes sense, as my mind hurts. I'm going to have to retire from the circus and stop the acrobatic stunts while mopping. This is the second time I have fallen at the same spot on the same stairs while mopping. Maybe the root cause is mopping the floor. Sounds good - I can quit mopping and won't every fall again! When I win the lottery I can hire maid service to come in and mop and fall for me. sigh.
Sunday, January 8, 2012
Every once in a while I take a "medication vacation". I don't quit taking anything that would endanger my well being or vital functions, but I discontinue my pain medicaiton and any other extraneous meds that might be messing with my metabolism. I wait it out as long as I can, and then start again.
This isn't the wisest choice. Tonight I found myself after approximately 36 hours without pain meds in a heap o' pain. I had some withdrawal symptoms the first day, which lets me know that I am physically dependent on the medicaiton. The pain, which I do not medicate to the level my physicians want me to, came back stronger and stronger and stronger the longer I was off the pain medication. I always have this bizarre hope that the meds will wear off and the pain will be magically gone. This is not based on any fact or any basis of reality.
The medication vacation helps me realize how much pain I am actually in, and why I take the medication I do. With chronic pain I think you loose perspective on how much pain you are experiencing. After all, what is the difference between excruciating and untolerable? It is a very fine line that gets very blurred. I fear I will think I am in pain just to continue getting pain medications, I fear that my pain might be imaginary, I hope it has disappeared and fear it has not. When I cannot discern how intense the pain is or how overwhelmed I am because of it I try to see what life is like without the medication. It also helps my gastroparesis and my digestive system perks up for a few hours, which is the best part of stopping pain meds.
I thought my pelvic pain has increased since the cathertization marathon began but I wasn't sure. I thought that my nausea has been getting worse but I wasn't sure. I thought that the neuropathy and leg cramping has increased but I wasn't sure. I am now.
Intense pain wears me out and I haven't been sleeping well the last week. I'm not sleeping well tonight either - why I am up writing this I guess. I caved at about 2 AM and took some medication and will put my pain medication patches on in a short while. Some medication was left in my system as 36 hours was not enough to clear everything out so at least that gave me a bit of a jump start from my own idiocy. I lasted longer than the previous medication vacation I took in October - only 24 hours that time.
I knew I had to start the meds back up again when I woke up from a short nap with tears running down my face on on my pillow, and I was clutching my stomach and (gasp) my pelvic region from the pain. It is hard to describe because you can't point to a certain spot and say - THAT is what is causing the pain. It is general and it is specific to certain nerve groups all at the same time. It is enternal and external.
The Headache is not liking me tonight. Seeing as The Legs and The Belly were already in revolt, not amazed The Headache decided to flare up too. It's not too bad, so hoping I can get everything controlled before The Headache gets too riled up.
I have work to do this weekend. I had not really planned on but that is what I get for taking two days off last week, two extra days this weekend. Not really complaining, just very hard to concentrate. Not sure if I should keep trying. It gets harder and harder to work a 40 hour week, and lately just 40 hour weeks have been few and far between. Even thought I have tried very hard to communicate what I am going through, I am sure people at work are thinking about all the deadlines we have to meet and what needs to get done - not realizing that if I am not well enough to drive, I am also hard pressed to sit or stand or do anything that requires concentration. I don't think I can do this job anymore. I want to keep going very badly (or is that very badly want to keep going?? I don't want to keep going if I have to do it BADLY!!)
ALL of my doctors have told me this fall to hang up my hat and go on disability. Easier said than done. Financially I don't know how I will be able to do it. I thought my new employers had long term disability only to find out in December that although they had paperwork we signed that said we had long term disability we were supposed to read between the lines and realize it was not offered. ARGH! Well, they probably would have had a preexisting clause in it like they do in their short term disability, so I would not have any coverage anyway. sigh. My health insurance is excellent, but if I go on Cobra (and we are big enough now they have to offer it) I don't know how I will be able to afford it. I also don't know how I will be able to afford pain medication without insurance. Another reason for the medication vacation - am I paying for something I really don't need?? Bigger sigh.
Going to drag out my fentanyl patches (I can't find my Tegaderm patches to put on top of them - where o where have they gone - two BOXES of them) and slap them on and try to sleep a little while. Then up and at work again. Ah well, at least its a diversion!!!
Wishing I had a Fast Car to Get Myself Outta Here...My body's too old for working....but I know Things will get better...
Thursday, January 5, 2012
Feeling more than a little bit overwhelmed today. The Belly is not cooperating - probably because of the drive Tuesday to St. Louis and back. I am exhausted by that little bit of effort - I'm such a weanie. Pain is through the roof and medication only helps reduce it couple of notches. Dreading tomorrow,or is that today??
Ah well, To Infinity and BEYOND! Can and will move forward! Standing still, while tempting, is not an option and my reverse gear seems to be stripped.
Wednesday, January 4, 2012
Back at home after driving to St. Louis and back (five hours going and five hours coming back) to see Dr. Bellyfixer. Experiencing lots and lots and lots of pain this evening. So glad I took both Tuesday and Wednesday off because I have taken my breakthrough pain medication (dilaudid) and it doesn't seem to be doing anything. I probably could take more of it, but I think I will make a supreme effort not to, and see if I can just suck it up and bear with it.
I didn't take my neurontin Monday night or Tuesday morning because it makes me sleepy. I also took some OTC anti inflammatory but they didn't help much. Tried to stay alert, but had to pull over numerous times for 15 minute naps. I hate to drive long distances anymore because of this.
Dr. Bellyfixer and his fellow specialist in training Dr. Bowels were very helpful. I have so many things wrong with me they let me pick what problem I wanted to tackle first so I chose abdominal pain caused by bacterial overgrowth of the small bowel for priority #1. They were able to come up with a new strategy without adding any additional medications so I was thrilled.
Because I am now having electrolyte depletion and leg and foot cramping Dr. Bellyfixer wants me to start using Gatorade each day. I am to add a couple of capfuls of Miralax to the Gatorade. Dr. Bellyfixer hopes this will control the fecal incontinence a little better. Once every three to four weeks I am to purge my system top to bottom using Miralax - something like half a bottle with 32 oz. of Gatorade. Dr. Bowels said that I cannot overdose on Miralax and Dr. Bellyfixer agreed with her. He said Miralax is a large molecule preparation that causes the bowel to excrete fluids. Dr. Bellyfixer's nurse said don't go far from the bathroom on the days scheduled for purging. They said they have one patient that has to take 12x the recommended dose. Not tasty.
I will be consuming mass quantities of Miralax and Gatorade, neither of which are covered by my insurance. If buying these sends me to the poorhouse, I'll have to make sure it has a poop-house attached!
Dr. Bellyfixer asked if I would participate in a study on persons with bowel motility issues, like irritable bowel syndrome or Crohn's disease. I was happy to! They took some blood for DNA testing and some other blood tests and I have two or three information booklets to fill out and mail back. Not a big deal and I don't have to write a diary or anything like I had to for the occipital stimulator study, and it's a one time effort. Hoping it helps other people, as my issues are more bio-mechanical than genetic.
I have a March appointment to go back to Dr. Bellyfixer. I will have made progress on getting my bowels straightened out by then (a bowel joke as my bowels are kinda kinky = HA!) and maybe will be able to pick another issue to tackle.
I hope that this post makes sense - the dilaudid and the phenergan are making me "drift" so I keep snapping back to the post and then zoning again. Wish they did a bit more for the pain.
Monday, January 2, 2012
I decided today that one of my resolutions for the New Year was to learn to knit socks. When I was young I was taught to knit by my mother and a pair of house slippers was the first project I was taught to knit, a very simple first project. I learned soon to knit "in the round" using four needles and then moved up to hats and mittens, graduating to gloves with five fingers. I have made afghans and scarves but really haven't knitted for years except for a disastrous doggie sweater I made for my dachshund Augie. It might have looked OK if he was a foot longer, had a large hump in the middle of his shoulders and a couple of extra legs and if his throat had been as big around as his butt. Otherwise, it was a really good fit.
I started wondering this evening why I had a sudden urge to knit. Why was this dwelling on my mind? Then it dawned on me. CATHETERS! The intermittent catheters I am using sorta generally remind you of a knitting needle. Duh. I'm handling them over and over and over and over, and I guess it has been tickling at the back of my brain. Now that I have already gone and bought the yarn and new needles and downloaded some new patterns I have figured it out. Probably should have saved myself the trouble - I thought I was being inspired, instead I was being nagged. Sigh.
Since I have some new wonderfully crazy yarn I think I am going to have to knit some socks. I know myself tho. Probably this resolution is going to go into the box with all my other unfinished resolutions. I will hit myself over the head later and say "Why did you ever start this??" - at least this time I have figured out the why!
I am on my way to St. Louis tomorrow to see Dr. Bellyfixer. With gastroparesis I have to take "Miralax" every week in order to make everything move through my system. Some weeks it is very hard to make things move. Such is my dilemma tonight. Watch - I will be three hours into a five hour drive and the Miralax Miracle will decide to happen between rest stops. I guess I'll take extra clothes. Gosh, I feel like Charlie Brown - I just can't seem to win. Drat or as Snoopy would say "Bleah." Thinking of Snoopy maybe I will go dancing in my mind with Snoopy and the bunnies; beagles are Always Happy and Joyous (at least our family beagle Max was). Wandering down memory lane a little too much lately I think, but its such a lovely lane!