Back

Here I am. I never really left the Internet or Blogging...just took an extended break. Life has been hard since I got back from the international trips. My motivation to finish my MBA dropped to near zero and work became harder and harder. Sometime, I don't even know when now, let's say early June, I got called into my boss' office. The Director of Human Resources was there. I was told that my teammates had come and talked to my boss about my behavior at work. Basically, at a minimum they tried to get me off their team. As a worst-case scenario, they tried to get me fired. I can't even really think about it and I'm not going to rehash everything on here in detail. There were parts of my behavior that were unacceptable and parts that were a direct result of the medical problems I face. I actually had to get a note from my Shrink explaining some of the side effects of my medication. I kept my job and had to confront all four of my team members. I apologized for my behavior, smiled, and tried to forget the betrayal. I buried it deeply within me and forced myself to go to work everyday. Head down. Just focus on the job. I now have to go into an empty office or into the hallway when I need to call one of my many doctors or business offices.

Then the same thing happened with my team in school. Even higher stakes. The team, again, all four of them, went to the Dean of the Business School and asked that I be removed from the team. This time, it was effective. The Dean said that if it was an unanimous decision then it was binding. They didn't even have the courage to tell me themselves. The Dean called me and told me. I had three choices at that point: 1) Ask another team if I could join them; 2) Form a team of one and complete all of the assignments by myself; 3) Suspend school for a year and be placed in another team; or I lied, there was a fourth option 4) Quit school 16 months into a 22 month degree program. I've already spent close to $55,ooo - to not get a degree at this point would be such a collassal waste of money that I couldn't even begin to comprehend it.

But the betrayal. I had worked closely with these four people throughout the past year. I knew them personally. I thought they knew me. I had a bad reaction to a medication and fell asleep and missed an hour of the team meeting. Unprofessional? Yes. Excusable? Possibly, if you knew the story. My problem is that I only really tell my problems on this blog. I used to put them on Facebook, but I realized that I would be more successful broadcasting my needs and struggles on the side of my car. At least then I wouldn't have the shame of knowing that someone who knew me in the 8th grade knows about my chronic pain.

Then I stopped blogging. I just held everything in. More and more pain. The night the Dean called me I took four Ambien and slept for 18 hours. Then woke up, talked to my therapist, and took some more Ambien. I couldn't even cope with being awake and existing with my feelings. Two distinct parts of my life had cast me out because I didn't tell them that my medication makes me fall asleep and I have to go to more doctor's appointments than an "average", healthy 29 year-old.

Now I just try to make it through the day. I've had to disclose my medical problems at work. I found a new team at school. I hate almost every moment that I'm in class and I'm counting down the days until graduation. I'm in a class of 28 and trying to avoid the four former classmates is almost impossible.

If it's possible, these experiences have made me more negative and more cynical. Perception matters. It didn't matter that I got all my work done at work, all my teammates saw was that I wasn't pulling my own weight. My teammates at school loved me when I was getting them A's on their papers, but turned against me within a week. What people think matters. You need to play nice with others. You'll get cast out otherwise and it's cold outside.

I Hate Therapy

It's time for me to admit that going to therapy is like me going into a darkened room with a hammer and being told there is a nail somewhere that I should pound into a wall. Somehow, someway...I'm sure it makes sense to the person who gave me the hammer, but to me, I'm clueless as to where to find the nail. Maybe I'm just tired of hearing all the same things, recycled and reformatted in different ways, and feeling like a failure because one of my coping mechanisms for depression doesn't include "positive affirmations of self and situation".

I went to an intensive outpatient program (conveniently known as IOP) today with no less than 14 other crazy people in a room the size of a small office. That's a lot of crazy in one space. It took over two hours to go over our daily check-in sheets where we list if we are currently having any suicidal urges or hallucinations. Or maybe where we report if our voices are telling us to hallucinate more. I'm not sure. The daily check-in logs always seemed a little silly to me. Same with the question, "Do you have a plan to hurt yourself?" That has to be the dumbest question I'm routinely asked. Really, you should ask something along the lines of, "Do you know exactly how you plan to hurt yourself and what your back-up options are if something goes wrong?" That would be a more precise question. I'd also like to point out that you don't actually NEED a plan to do damage. Sometimes it just happens. Sometimes you are just sitting there, feeling like shit, and the idea comes to you. No planning. No flow charts. No excel spreadsheets with forecasts on probabilities of success and the division of property.

I annoy my sister because she says that I complain about every place I go to as not being therapeutic enough for me to actually get any benefit out of. It's a little surprising that my sister is even still talking to me, six years after moving to VT/NH and entering into my first program. During that time it's become apparent to me that I have a very firm idea as to what is "therapeutic". I imagine that my nirvana of therapy would involve soft music, extended meditation on comfortable pillows, and gentle cognitive behavioral coaching and guided reflection in a small group setting, no more than 5 people. There would be hot tea, honey, and locally-grown mandarin oranges, when they are in season, of course. We would eat salads and drink mineral water for lunch, without having to worry about how much money you're losing by not being at work.

What I got today was a brightly lit room crowded with people in straight-backed chairs. There was a woman in her late teens, early 20s that dominated the group with some serious ADD/Anxiety/I-have-no-idea-what, but it caused me to leave the group 30 minutes early. She screamed and gasped without any apparent provocation. She would hold her breath and have to be reminded to breathe. She talked on and on about ex-boyfriends and how famous they are, which made no sense to me. I was trying to practice my "non-judgment of others and self" skill that they teach in DBT, but I'll be honest, I was ready to evict that girl from the group within the first hour. I'm out of vacation and sick leave and have to work eight hours AFTER my three hours of therapy, so I'm already annoyed and trying to focus on getting the most out of my time when I hear her yelp to the right of me. Finally some of the older clients (it was a mixed group of adolescents, adults, and seniors - two out of the three therapists were sick today), told her to quiet down.

In individual therapy at the new DBT place, I've taken to wrapping myself in a throw blanket and lying in the fetal position for 50 minutes. I feel like I can be an active participant in my recovery, while I ward off potential invaders to my sub-conscious. My brain is busy and it's tired of wondering how I'm going to pay for the therapy that I'm receiving. Taking a nice rest sounds much more productive and less expensive.

Clearly, I either need more napping and less therapy or to become a Buddhist monk. Those are the options I'm looking at right now.

Duality

"You've been through a lot of pain. And it's hard to trust anyone, hard to believe that anyone could care because you've always hated yourself. On one level, you've wanted people to believe your tough facade. But on a deeper level, you've wished that someone would be able to get past it, to get inside you and listen to your heart. But you've been afraid that no one in the world would understand - or worse, that you would drive them away." Rachel Reiland

This whole blog has been my demolition of my facade. All of my writing here is the crazy side of me, the side that unrelentingly points out: "I'm still here. Still sick". It's the reason my family can't stand half of the things I write because it's so much easier to imagine me as the fully-functional woman that gets up, goes to work everyday, performs her tasks easily, and goes to sleep with a contented heart. I understand that it's easier to see me that way because that is what I present to the "real world", - the world that lives outside this computer screen. At least most of the time. I've cried so often at work that people don't even seem to think it's strange anymore...it's just B....crying again.

I have a potential lawsuit against the FOB and a family that I rely on and need in so many ways that I can't even begin to count. When they ask me to take down a post or move it to my private blog, I honor their requests. Yet, there is this almost masochistic drive to prove to the internet that there are two women living inside me (without the dissassociation of a multiple personality disorder, fortunately).

There is the me that can bathe and dress a child in under 15 minutes and enjoy the beautiful peace and love of my son's smile when he cuddles up to me the morning, in bed together. There is the me that can be an A-student in a MBA program and sit through hours of unrelenting pain to learn subjects that I can't immediately apply to any conceivable work situation. Then there is the me that just wants to disappear. The me that says, "You've fucked everything up. Every decision you've ever had and every choice you've ever made has led to nothing but pain for yourself and those you love. Anything you haven't fucked up yet is just a matter of time. Leave now. Go. Just go now and you won't have to be around to deal with the mess you've made of everything. You're so pathetic. You've alienated everyone whoever trusted and loved you. They're sick of you and your so-called illness"

That's usually how it goes in my head before I end up in the hospital. On Thanksgiving I decided that I wouldn't make my Dad find me in my apartment. I decided to hide behind a restaurant and wait. Then the phone rang it was like Fate/God/Life/Universe was giving me a game show lifeline, one of those "Phone a Friend" gimmics. I answered and smiled. It was one of my best friends, telling me how much she loved me. Then suddenly my Dad was on the other line, demanding to know which parking lot I was in. I clicked back to my friend and told her that it was a neat trick to call my Dad while I was still on the phone with her. She said she was worried. I made an incredibly stupid decision and decided that my Dad would never find me if I was on the freeway...that I would just pull over when I got tired. It didn't work like that though. I drove almost 30 miles south with no memory. I woke up in the ICU the next day in the seaside town I drove to, vomiting, alone with a nurse that cleaned me up afterwards.

Four days and many pages to a psychiatrist who never answered later, I was released. I went back to both of my jobs, like I've always done. Sure, after two weeks of bickering back and forth about insurance and deductibles, I got a new therapist and felt excited about the possibilities of actually recovering. Nothing had actually changed though. Nothing ever does from an event like that. It takes all your problems and magnifies them by about 1,000 until you're lucky if you can make it out of bed every day without feeling like a worthless piece of shit that brought all of this down on yourself. I mean - if you feel like a failure, try failing at death. It's one of cosmos' cruelest jokes. On the screen of life you see the same message flash over and over: GAME OVER! You've failed at both living and dying! GAME OVER. Try to find someway to live now, sucka. Sucks to be you.

Fast forward to Sunday. I can feel it all happening again. I'm crying uncontrollably and I decide that I want to break the pattern. I decided to proactively go to a hospital that my new therapist recommended. She said that there was a unit there for highly-motivated patients. After several phone calls, I found out that the unit was closed and I would be placed into the general population in a locked unit. During the admission process, they took my blood pressure and heart rate. I was having chest pains and a BP of 149/93. My heart rate was a steady 110 beats per minute. I should be burning calories at that rate, instead I'm clutching my chest wondering if it's possible for a heart to beat so hard that it damages the muscles surrounding it.

I was taken to a large hospital in the Med Center. Ironically, it's the hospital that Dew now works at. I thought for a moment to ask for him, but I was deemed a threat to myself and put in a room with no medical equipment, save for a bed that moved up and down and table that rolls bedside at 7:30pm. The lock was on the outside of the room and required a key to enter. The light switch was also on the outside of the room. I was there for three hours before I got a glass of water and was able to go to the bathroom. I called my Dad. I asked for him to come down to the hospital and stay outside the door - just to remind them that I was still inside. He decided not to come. It was late. The nurses and doctors took my blood, did two physical exams, a EKG, and chest x-ray. They fed me a sandwich and locked the room back up. At 5:45am the next morning, I left the hospital, again in an ambulance, back to the hospital my therapist recommended. Apparently I had been medically cleared. My anxiety was the culprit to my chest pain, not anything vaguely related to the cardiovascular system.

At 6:15am I was back at the hospital. I had to wait until 10am to go up on the unit. I'm not exactly sure why, something about the nurses not being ready to admit me. The unit is the loudest, most choatic place I've ever been. Everyone is either yelling, listening to music, or singing. Nurses are shouting orders at each other and the patients. The patients are mostly ignoring them and I'm wondering where the closest bed is so I can go to sleep. I left, AMA, 48 hours later into my parents' custody. Although everyone from my psychiatrist to my sister thinks that I'm crazy for admitting myself one day to discharging myself three days later, I knew I wasn't going to get what I needed from that situation. Hell, I couldn't even get a decent nap in that situation, let alone intensive therapy.

So now I'm back. No one trusts that I made the right decision to go AMA. Yet once, just this once, I believe in myself. I stopped the destructive, abusive pattern that I've been putting myself through. I didn't give in to the urges of the dark side. If I could have seen into the future and known what life on the unit was like (it's not like they give tours before admission, ya know?) there is no way I would have admitted myself there. But I did, then I had the presence of mind to get out. I don't see it as a failure. Even my dark side doesn't see it as one, even though she desparately seeks the approval of her friends, family, and doctors and realizes that she won't find it.

I'm scared about the future...almost horrified that I've yet again fucked something up with this confession. Someone, somewhere will find it and I'll be embarassed and horrified to have my dirty laundry on display, but if I've learned one thing from the past six years, it's that you can't deny the existence of the duality. To do so leads to disasterous consequences.

Pause

Sorry about that. I get the feeling that my pause in blogging was being interpreted as rather dramatic. I didn't intend for that to happen.

So much to catch up on. I guess the first thing that I'll clear off my plate is an explanation of where I've been for the past two weeks. I'm not sure exactly how to answer that, other than a basic outline. I was in the hospital in Galveston for four days following Thanksgiving and discharged on Monday, November 30th. I worked at Pier 1 that night, to avoid missing even more shifts there. The rest of that week is a blur from trying to write a couple of grant requests, complete the 2010 Development Plan for my "department" (which is me, managing me, and forecasting on my productivity), trying to prepare for an accounting test on Friday, sitting in school for 9 hours on Sunday, and working for five hours at Pier 1 on Sunday. That brings us to today. If you ask me, as many people so kindly have, if I'm "OK", my answer will change depending on the day or time. After work on Sunday, I was most definitely not OK. I've been really down today at work today as well and I called in sick to Pier 1 tonight. Am I likely to go back to the hospital in the next 24 hours? No. Should I be in an inpatient or intensive outpatient program somewhere? Possibly.

What else? Well, I did see the Infectious Disease doctor. She thinks that the acineobacter in my mouth is a red herring and that I've probably had it for sometime. The fact that I've never known that I've had it can be attributed to the fact that nobody has ever cultured me for it before. In her opinion, you tend to find what you go looking for. She thinks my mouth problems are caused by my sudden weight gain (+35lbs in less than six months, that has to be a record), sleep walking, and sleep eating as a result of sleep apnea. She's ordered a sleep study for me, which I hope to complete by the end of this week. I'll go into the sleep study at 7:30pm, hang out while they hook me up, watch tv until 10pm or so, go to sleep (Ambien aided, which surprised me), and get woken up at 6am - sharp. I can shower or leave at 6am. I was also told that my nasal passages are almost completely closed and that I should be using a steroid nasal spray. So, there's that.

Big surprise! My back didn't hurt at all while I was in the hospital...unlike the days during the weekend where I would hurt from lying on the couch or in my bed too long. Nope, not like at all. I had no pain. Now that I'm back to typing and sitting upright in a potentially non-ergonomic office chair, I'm in all kinds of pain. My forearm and my wrist hurt. My ribs hurt. I generally hate life in this position, yet this is where I find myself 8-10 hours a day.

I have one more accounting test to complete before the end of this module of grad school. I have a week to complete it, so here's hoping that I can do it this weekend. Until then, I'll try to make my pauses a little less dramatic and shorter in length.

I Just Want One Part of Me to Work

Isn't it fun to jump back and forth between medical conditions? Really, I think I just complain a lot. If it's not my back, it's my mouth. If it's not my mouth, it's my job. If it's not my job, it's my volunteer work or school. See? I'm a barrel of complaints and not fun at all.

Back to my mouth though. I had an "interesting" (if you call getting completely freaked out an "interesting experience") talk with the ENT nurse yesterday. I said that the first round of antibiotics they put me on for my mouth weren't working. They did nothing, actually. My throat still hurts. My mouth is still white, dry, and sticky. So, I asked if they could put me on another class of antibiotics (preferably one with a generic). She said she'd ask the doc and call me back. When she called back, she said that they would call in another prescription for me, but if it didn't work that I would need to go see an Infectious Disease Specialist.

Let me say that again: Infectious Disease Specialist. As in, I quite possibly have a rare form of bacteria that I picked up from God knows where in my lymphatic system. It's expressing itself in my mouth and throat. Every time I have gotten my temperature taken for the past five months, it's been between 99-100. Apparently, I have a relatively harmless infectious disease. It's more like a baby goat at a petting zoo and less like a flea-infected marmot carrying the bubonic plague. Did I mention that I was quarantined for the bubonic plague in Mongolia because someone had died from it? Granted, that was six years ago and none of my symptoms match (of course I checked, do you think I'm an idiot? I'm paranoid, not stupid), but none of my symptoms match anything else either.

I immediately call my sister, who begins wondering why I'm screeching at her. I was just so upset that the nurse wouldn't even tell me what kind of bacteria they cultured out of my throat. I asked the nurse today when I talked to her and she said that she didn't have my chart in front of me, but would fax the information to my primary care physician when I needed a referral to the INFECTIOUS DISEASE SPECIALIST. This kind of specialist is located lovingly in the not-ominous-sounding-at-all Department of Molecular Virology and Microbiology.

So many things can cause a white film on your tongue. Add in a sore throat, persistent low-grade fever, resistance to BOTH anti-fungal and antibiotic medication, and you have a nice medical mystery and very annoying condition.

Want to Feel My Rib?

Do you ever notice that there is two kinds of pain: ouch (that hurts! Stop it immediately) and ouch (yeah, that hurts, but I can tell that it's for a greater good and it feels almost a little good)? Physical therapy on Thursday really pushed the boundaries on ouch - in a bad way - and ouch - in a good way. I find it interesting that I'm actually looking forward to going back this afternoon.

Much like the drama in my mouth, this is a medical mystery months (going on years) in the making. I don't even really know where to start, other than to say my back started hurting in February 2008 when I was writing a grant. I waited a couple of months because, apparently, that's what I do. I'm a good waiter. I wait for my medical problems to resolve themselves before seeking treatment. It's just so unfortunate that they rarely do. Anyways, I saw a family practitioner, which is perhaps the WORST possible kind of doctor for pain. He thought I was drug-seeking because I had been using vicadin left over from an oral surgery to help me with the pain. In his mind, vague, non-injury-related "back problems" clearly indicated that I was hooked to hydrocodone and should immediately get out of his office.

Sigh.

Fast forward...I don't know....to August 2008. I met Dew and we started going to electro-accupuncture sessions. Basically, the needles are attached to electrical current and vibrate inside your skin. You can imagine how much fun that would be for 45 minutes, while lying on your stomach listening to music from a cd player. The pain relief from a session would last for about 3 days. Then I was back to my normal level of pain. I had a lot of accupuncture sessions and it worked for a while.

Then I saw an orthopedic surgeon and he suggested physical therapy and an anti-inflammatory. I went to one session of physical therapy (for $45) and didn't go back because it took too long and was too expensive.

I think at some point I see another family practitioner and beat my head against a wall. Then my psychiatrist started prescribing things for my back pain. Probably not the best idea considering muscle relaxers don't actually make me feel better, they just make me not care that I'm in pain. And I was in so much pain.

SOOOO....back to another family practitioner at my new place. She doesn't give me anything for pain and sends me to...get this...another orthopedic surgeon!! For another $45 I go and see the Ortho Doc, who happens to be Chair of the Orthopedic Department at a very prestigious medical school in town. I fall a little bit in love with him when he says, "Show me your pain" and I point to the middle of my back. He says, "Hmm...sometimes my patients don't tell me that the pain moves from side to side because they are afraid that it will affect their credibility with me" I gasped. "Yes! That's exactly what my pain does," I solemnly swear. He says, "It's probably a muscular problem that I'm not going to be able to help with. You are a non-surgical candidate. You should go see a Physical Pain and Rehabilitation Specialist".

Dew and I trundled to another doctor where I have a 2.5 hour appointment that involved pushing and pulling. I was prescribed physical therapy and an anti-inflammatory (stop me if you've heard this one before) and two MRIs since the x-rays and blood work came back normal.

I'm committed to physical therapy this time, mostly because I have to take care of myself. No one else will and I've worked like a dog all year. I thought I didn't have any vacation time because what was showing up on my check stub was a pitifully small amount. I'm still in a negative for sick leave after being in Peru in February 2009, so every time I go to the doctor, I have to use vacation time. Turns out, what was being printed on our check stubs was wrong. I have a surplus of vacation time from not taking more than 1 or 2 days all year. I can only carry-over 40 hours of time and if I don't use all my surplus vacation time before the end of the year I lose it.

The Pain Doc recommended a very specific therapist for me to work with at yet-another-prestigious hospital in town. I really like him, especially when he said he could literally feel where my rib was turned out and spent 20 minutes trying to manipulate it. That was the "ow, I want to kick you in your nuts" part. Fortunately, it was over relatively quickly.

Now there is just the money part to worry about. On my insurance plan, every session of pt costs $45. I'm scheduled for two sessions this week and my MRI is going to cost another $45. That's $135 in medical expenses for this week alone. I reapplied to Pier 1 to help cover some of these expenses. I'm hoping that I will be able to work a couple nights a week and on Sundays.

At least I can point to the really cool rib that's sticking out if someone thinks I'm faking my pain.

I'm Dying

(My apologies to folks who read part of this story already when it was up at this site. Just consider this a recap)

I'm all kinds of dramatic. I know this about myself. What's funny is that I tend to be like most people and will go crazy over a stubbed toe that is clearly an indicator my complete lack of balance and potential inner ear disorder. Yet, it took me 6 weeks to actually go to a doctor for a dry mouth. Mostly because, seriously, who goes to the doctor for a dry mouth? So if we back up from the time that I wrote that post, I have been having problems with my mouth since July 1st or so.

August: I pay $20 to see my old primary care physician, who looked at the whiteness in my mouth and on my tongue and said, "Why yes. I know what it is. It doesn't look exactly like thrush, but thrush it could be. Take this horrible oral anti-fungal medication four times a day for 14 days." Me: "Uh...ok. I guess I have been on a lot of antibiotics for a while now". The only problem is that anti-fungal medication didn't cure the problem. I called and asked for a refill and took all 192 doses of the next round. Guess what didn't happen? Yep, it didn't clear anything up. I still had a dry mouth and whiteness. It felt/feels like I'm constantly sucking on something sour, only drinking water doesn't make it any better.

September 21st: I pay $20 to see my new doctor at the very large, very prestigious medical school clinic in Houston. She looked at my mouth and said (no, I'm not kidding): "It's not thrush. You have a white film on your tongue and throat that goes away when I scrape it. You have an oral disturbance. I will prescribe an anti-fungal, but it probably won't work". Me: "Uh...what do you mean it won't work?" Her: "It's not thrush, but you can try this. It's a very good anti-fungal, but if it doesn't work, it's because I don't know what you have." Me: "Oh well then" (and like an idiot walked out of her office without asking her to 1)culture my throat or 2)address the back pain that I went into the office for. I will give her credit for one thing, it wasn't thrush and the medication didn't work. I guess I was hoping for some kind of miracle cure.

October 20th: I saw my Ob-Gyn, also at the very large, very prestigious medical college clinic. Since I paid a $45 co-pay to see her for my annual checkup, I ask her to look at my mouth. I figured she'd be swabbing things anyway. She looks at me and says, "Well, I don't see too many mouths in my line of work, but sure, I'll take a look". Then I fell in love with her. We are moving to California after the holidays to raise baby llamas together. But seriously, she cultured my mouth. Three days later she sent me an e-mail (can you see why I love her?) that she FOLLOWED UP with a personal phone call. It's like I've died and gone to Ob-Gyn heaven. Unfortunately, that culture showed yeast, but then again, I asked an Ob-Gyn to look at my mouth. Of course she saw yeast. She's a veritable yeast whisperer. I go back on anti-fungal (the same one as in August) and think, "Maybe, just maybe this magical woman has it in her powers to cure me." Well, she didn't, but she at least referred me to an ENT. Would you believe that insurance companies don't accept referrals from Ob-Gyns for ENTs? The nerve. I had to call my primary physician (the new one) back and ask very nicely for a referral without another office visit.

November 3rd: I see the referred ENT and she's lovely, even if she's not located in the same office building that all the other doctors are in and I have to pay a $45 co-pay to see her. My throat has started to hurt fiercely and there are strange things coming from my nose. I'm pretty sure I'm dying a slow, dry death. She cultures both my nose AND my throat after looking at them both extensively and proclaiming, "My word! Your lymphatic system is completely inflamed. Have you been feeling run down? You look like you'd be feeling run down". To which I answered, "Well, I have this thing...with my throat....and now my nose....and how about you fix it, mkay?" She agreed to my conditions and had her nurse come in to give me instructions. The nurse comes in with a water bottle and a sheet for mixing baking soda and salt in equal quantities to gargle and brush with. The water bottle is supposed to go up my nose where I would squirt 4oz of water and solution into each nasal cavity while repeating, "Kitty, kitty, kitty" over and over so it wouldn't go down my throat. I just sat there staring at the nurse going, "Oh yeah. I bet you love your job". They sent me down five floors to drop off my culture samples in a very large, non-profit hospital in the middle of a damn medical center of office buildings. I confuse easily. I blame my inner ear disorder.

November 6th: ENT nurse calls me and says, "So...it turns out that you don't have an oral yeast infection. You have MULTIPLE EXOTIC STRAINS OF BACTERIA" (direct quote). Me: "What the hell??" Her: "I'm calling in an antibiotic to your pharmacy. Take it for 14 days and call us back." Me: "Wait, I thought this problem started from being on antibiotics." Her: "Umm...I don't know. Just don't call before you finish the prescription"

Today: Day 3 of very-expensive-antibiotic-that-had-no-generic-equivalent. My mouth is worse than ever. Very, very dry and all white. I want to go home and take a nap, but I know that if I do I'll wake up and my mouth will still have bacteria (and not the good kind) growing in it.

Now you have the story about how I'm dying and why I'm completely broke from office visit and prescription co-pays. Moral of the story: ask for cultures the first time, don't see general practioners when a specialist is more qualified, then make sure you see the right specialist, and once you are at said specialist, for the love of God, make sure you confirm that the medication they put you on will have a generic. The end.

New Perspective

I finally have the results from my blood test. It took 2 1/2 weeks because the Doctor wouldn't review and release the results. Everything was absolutely and completely normal. I don't have lupus or rheumotoid arthritis. I'm not anemic. When the nurse told me that over the phone that everything looked great, I was disappointed. "Now what should I do?" I asked her, "I'm still in pain". She seemed genuinely surprised about the request. "Hold on," she said, "I'll go ask the doctor". Five minutes later she came with news that my doctor at the time wanted me to go see a rheumatologist, who in the words of Wikipedia we trust, quote: "Rheumatologists deal mainly with clinical problems involving joints, soft tissues, and the allied conditions of connective tissues." I don't even know what the phrase, "allied conditions of connective tissues" means, other than it sounds like the connective tissues of my body got together to unionize to collectively bargain for better working conditions and an increase in pay.

I said no thank you to the rheumatologist, although I'm sure they are very nice people. I instead made one of the biggest switches of my medical journey as a patient: I left Kelsey-Seybold. I've been a Kelsey patient since I moved to Texas. My Ob-Gyn that was there at Zac's birth was a Kelsey doc. My primary care doctor, orthopedist, and dermatologist all work for Kelsey.

I saw a primary care physician at a big name clinic in the Medical Center. After some serious drama that involved me sobbing in the waiting room and begging the receptionist to ask the nurse to reconsider seeing me, I finally saw the doctor. She was nice and very thorough, although ultimately unhelpful. She did a full physical exam and ruled out fibromyalgia because I don't have the classic tender spots that are sensitive to touch. She referred me to an ortho-spinal specialist, possibly for a MRI, but most likely for a "here are some more exercises that you can do to strengthen your core and minimize your muscular-skeletal pain" exam. The referral is being sent to me by mail and will include the name of the doctor that I'm allowed to see. Then I'm supposed to call the doctor's office and make an appointment. God help me if I really was in serious pain. Then what would they do? The new doc didn't give me anything to manage the pain and I didn't ask about it. I did leave with another prescription for the oral fungal infection that has resisted two rounds of treatment with nystatin so far. I'm on week 9 of dealing with a dry, irritated mouth. What to guess how much that sucks? At least it's starting to get a little better.

So, I haven't made any decisions yet about anything. I looked into the possibility of slowing down my graduate degree and only taking one class at a time. Turns out that I'll only be able to do that every other module. I still have the option of taking a module off if the ortho-spinal doc recommends physical therapy or, worse case scenario, surgery. I'm still in the midst of mandatory volunteering and feeling better after sending out 775 invitations to a Montessori event on October 15th. Now I'm just tracking RSVPs and sending out thank you letters. Work is crazy, as always. Zac is good, just a little confused I think about everything that has gone on. I'm still dating Carlo and I'm enjoying spending time with him, even if he likes to pick up weekend, overnight shifts. I'm adjusting to his football rules..slowly. More about that another time.

Right now, I'm moving on and feeling pretty good.

I Just About Hate Everything

I've found a new blogger than has said almost exactly what I've been feeling lately in regards to the pain in my body. In this post she pretty much sums up everything, especially the part where she says, "I always held out hope that I would find something to "fix" me. I thought if I did enough yoga, or acupuncture, or massage, or stretching, that I would be cured. I'm all for putting up a fight, but this latest diagnosis has made me realize that I can not be cured. I will struggle with this for the rest of my life."

I don't have a diagnosis yet, and it's doubtful that I ever will. I sit at work in tremendous pain waiting until I can leave and trying to figure out how I can just keep working even though everything tells me to stop. I try to go for short walks at work, get up and change positions, lay on the floor and do yoga, and take anti-inflammatories like they are going out of style. At night, I eat peanut butter out of the jar for no apparent reason. Sometimes I wake up with peanut butter in my mouth and I'm not sure when I ate it and I wonder what my body is trying to accomplish.

The best part of my day is the first hour after I wake up. I'm sore from the pain the previous day, but it doesn't actively hurt. I can make my bed, fold laundry, and tell Zac "no" when he asks to watch another show on PBS because we need to leave for school and work. I don't feel like I want to curl up and have long heart-to-heart talks with God. I feel like me, for a little while at least.

What's most concerning to me is the thought that there may not be a physical cause for the pain I'm in. After the x-rays and the tests, it might be left with nothing other than a list of things I don't have. There might not be anything that I can do other than what I'm doing now and that thought scares me more than anything.

Recap

I'm still here. Sorry that I've been away so long from blogging. I have a couple of interesting stories that I want to share. As always, most of them revolve around me either being or making a complete ass out of myself. Such is the joy of being in my world.

My first story directly relates to my last post. Not many people noticed before I changed it, but the last post I wrote originally included the question: "Is it that the guy is just more honest than most or his he just a shallow knucklehead?" Now there are a couple of problems with a question like that: 1) It's rude, 2) If the person reads it, he will automatically assume that I'm calling him that, and 3)I probably shouldn't write about people that I'm actively interested in dating, particularly in a less than glowing way. Carlo and I began chatting on yahoo a couple of weeks ago. E-mails progressed to phone call and during one two-hour phone session, I decide to friend him on Facebook. That's all well and good, except my blog is linked to my profile of fb. Right under my personal e-mail address and where I went to high school. Carlo decided to click on the link and ran smack into an entry involving him.

He e-mailed me back answers to all of my questions, including Question #2, in which he said that he would take the high road about the shallow knucklehead comment. He told me what he really looks for in a woman: "I'm looking for a sweet, smart, pretty and fun girl. She needs to be a positive person who doesn't feel the need to put down others in order to build up her perceived value." I assume the last part was directly related to what I said about him. It's an issue that I've struggled with before on my blog. I write to vent and to entertain. Sometimes I worry that I go to far.

Almost unbelievably, Carlo decided to give me a second chance. It's pretty rare that life ever offers you one, so I wanted to make the most out of it. I took off the offensive comment from my blog and apologized profusely to him. We decided to meet up for dinner and drinks last Saturday night and I had a great time. We've been seeing each other every couple of days since then (much to the dismay of my school work). I'm really enjoying spending time with him and learning more about it. We joke about the shallow knucklehead comment, but I think he's forgiven me. I hope so, at least.

Things with my body have taken a decidedly negative turn, however. I got an oral fungal infection from the antibiotics I was taking. What's amazing is how long I let it go before I went to the doctor. I just thought that I had a funny feeling in my mouth. It felt dry and scratchy all the time, regardless of how much water or Diet Coke I would drink. After about a month, it continued to get worse. I finally saw a doctor for it and found out that I had over a 100 degree temperature and a mouth covered in white. I was prescribed an oral anti-fungal treatment, which involves me holding medication in mouth as long as possible then finally swallowing it. After one week of treatment, I'm only marginally better. It's now official that my medical interventions (originally the antibiotics) is now leading to other interventions (anti-fungal).

I took yesterday off work to rest my back. The problem is that I'm now experiencing pain in more than just my back. I know have pain in the backs of my arms, my forearms, and my calves. The pain used to go away as long as I took a break from work or walked around. Now even on my days off, it's almost constant. I went back to see the same family practitioner that I saw a week ago for my mouth. I got an initial good feeling from him. He seems thorough and was willing to listen to my vague complaints like, "radiating pain" and "chronic fatigue". He sent me for a pregnancy test (not pregnant), x-rays of my spine and shoulder, and a series of blood work to check for everything from autoimmune diseases to anemia and thyroid problems. I should have the results back from the blood work later this week.

I'm back at work today, still very tender and uncomfortable sitting for long periods of time. my biggest hurdle is how overwhelmed and hopeless I feel when dealing with the pain. The doc I saw yesterday said that he couldn't help me with that because I'm already on medication for depression. He didn't give me a lot of options, other than to talk to my shrink, which I'll do. Until then, for those of you that know yoga, I've been spending a lot of time in the child's pose, hoping that my body can somehow heal itself.

Unexpected

I can remember almost exactly when the pain started. I was in the middle of writing a state grant for substance abuse prevention/intervention services in Houston schools in February 2008. Long hours at my desk combined with hours upon hours of meetings caused my right shoulder to cramp up. As time went on, the pain moved down my right arm and later to my middle back. I never expected that the pain would get so bad that I would be counting down the minutes until I get to leave work. I've started taking over-the-counter arthritis medication and use icy-hot on a regular basis. I'm 28 going on 65. The medication was recommended to me by a guy at work that doesn't want to give up his beer for vicadin. He said that he uses the arthritis medication as a substitute. I can't get vicadin and probably don't want to be taking it on a daily basis. That sounds like a good recipe for addiction and possibly liver failure. Funny enough, the arthritis medication actually worked for a little while. Old people know some good tricks.

When everything starts to cramp up at night when I come home from school or work, I sit in a bath tub full of water so hot that it leaves bruises on my skin. That's the only way that I find any relief from the pain. Sweat drips down my face from the heat, onto the books or magazines that I read in the tub. Zac usually comes to check on me as I'm lying there, feeling comfortable for the first time in hours. I've often fantasized about taking a hot bath during my lunch hour, or even a shower, something, anything to keep from focusing on the pain that starts to demand more and more of my attention.

I woke up hurting today. Sometimes if I lay down too long my middle back, right where my ribs jut out in the back, will start to hurt. I think that's what happened last night. It's never a good sign to start the day off in pain, that just means that it will get worse as the day goes on. I've started to become almost a morning person (no, not really). Usually I get one or two hours in the morning where I feel like myself again, the person that I remember being before this started dominating my life. Sometimes I can go a whole Saturday at school for nine hours without feeling anything. Other times I'm not that lucky.

I've tried quite a few medical options for my back. I saw a family practitioner, an orthopedist, a chiropractor, and an acupuncturist. I can't afford to see the acupuncturist, but I went last week, even though my regular doctor's office was closed. I saw an older Chinese man who ordered me to stand up, with my back facing him. He tugged on my hips a little and pronounced that I was twisted. The stress of my hips being out of alignment with my shoulders was causing all the pain. Unfortunately, he didn't offer any solutions on how to get untwisted. He just put the needles in my back and hooked up the electricity. My runny nose dripped fiercely on the paper sheet underneath me. Zac gave me his cold, which has possibly twisted me more.

The pain today is going down my knees and my calves. It feels like I've been running for hours, but I've really just been sitting here. I don't know what to do. I've never really been the type to thank God for my trials or to redefine my sense of self by overcoming adversity. Then again, I never expected that I would be so young and dealing with chronic pain that has lasted so long.

Pestilence

I've been spending so much time on my ass that it's breaking out in a rash. I'm sure that is exactly the kind of information that you were dying to know, but it's true. I spent 12 hours this weekend sitting in front of a computer at a review course at Tulane and then another 1 1/2 sitting and listening to a lecture last night about the strengths and challenges facing Houston in the 21st century. I think I might have enjoyed the lecture a little bit more if I could have stood up and walked around half-way through. As it is at work, I have to remember to stand up from my computer every two hours or so.

Right now, I'd trade butt rash for the ability to be fully awake. I mean, really, really awake and on top of my game. Everything feels foggy in my brain right now and I hate it. I'm not even sure what to do to clear out the cobwebs, when it feels like I could fall asleep at any moment. This is the kind of fatigue that makes it hard for me to work and even harder to take care of everything that I need to do at home.

Speaking of home, though, Zac has been sick (and no, it's not the swine flu). He started throwing up at preschool on Wednesday and I was required to get a doctor's note that he didn't have anything contagious and could return to school. He was out on Thursday and Friday with a stomach bug. On Sunday, he was complaining that his ear hurt, but the day before he also told me that his hair hurt, so I'm never completely sure what to believe. Sunday night reminded me so much of the time when I was breast feeding that it was a little scary. Zac woke up at 10pm saying that he couldn't fall back asleep (at least that's what I think he said. I know he said something about sleep. I'm going to hypothesize here). He crawled into my bed and I rubbed his back until about 10:40pm. He woke up crying every hour between then and 3pm. He couldn't tell me why he was crying or what he wanted, so I just held him close (I think. I was 90% asleep. I know I did something). I finally broke down and gave him some infant tylenol at 3:30am, which allowed him to sleep for another three hours.

It's Tuesday and I'm not fully recovered. Add to this my insurance recently denying a medication that had been helping me and I'm only left with creative ideas how to get out of this fatigue. Zac is on antibiotics for his ear infection. The poor guy has been really been hit hard the past week.

At least I'm not sick, even if I do have an impressive rash.

Pain in the Neck

For the first time in my life, I feel like my brain hasn't had full control of what is going on south of my cervical vertebrae. Most of my life has been spent dealing with what is going on in my brain, rather than what is going on in my body. My body has dutifully performed all tasks that were required of it, until seven months ago.

I started experiencing severe pain in between my spine and my shoulder blade (I'll leave the medical terminology to those more knowledgeable than myself). It was an intense muscle pain made worse by stress and long hours typing a federal grant. Usually, when I got up from the computer and stretched or went home for bath, my shoulder felt better.

Sometime around May or June, it stopped feeling better. The pain became a constant companion. I was taking more ibuprofen than I should admit to in a public forum and noticed that the pain was spreading to my neck and, most recently, down my arm and through the upper part of my ribs on the right side. Sometimes it's a little uncomfortable when I breathe or when I move in certain ways. I've left work more several times wishing that I could drive my car with my feet instead of my arm.

Finally, after months of stubborn refusal to go to the doctor, I made an appointment to see a family practitioner (mistake 1) that I had never seen before (mistake 2). On the day of the appointment, I was called and told that mistake 1 couldn't see me, but (mistake 3) another doctor that I had never seen before could fit me into his schedule twenty minutes earlier. I hung up the phone, unplugged the iron, decided to wear a different shirt that didn't need ironing, dislodged Zac from his chair and his beloved Wonder Pets, and raced off to see the doctor. When I got there, I waited in the waiting room with Zac for almost an hour. By the time I was finally see, Zac had played all the games he could with the squares on the carpet. He was bored and I was getting cranky.

The nurse that weighed me and took my blood pressure asked what medications I take. This is usually a tricky question for me because some medications are taken "as needed" and I'm never sure if I should include them or not. Just to be on the safe side, particularly since I got a son out of the last potential drug interaction that a pharmacist never told me about, I'm usually on the more conservative end of the patient spectrum and list everything.

The doctor came in and took one look at my list of medications and started freaking out in my direction. "You take too much! This is too much!!" I just stared back at the man that I had now been waiting close to two hours to see. With his wild gestures and proclamations made without any other knowledge of me, it almost seemed like he was worried that I was going to drop dead on the spot. Fortunately, I didn't, which would have been awkward given that Zac was in the room singing "Wheels on the Bus".

"I am under the care of another physician. I'd be happy to give you his name and number if you wanted to consult with him about my medication," I said because clearly I don't write my own prescriptions or just make up drug names to tell unsuspecting nurses. "No, no," he muttered, "That won't be necessary." Then he asked what I had been using to control the pain and I answered him honestly (mistake 4). I had some hydrocodone, also known as I-Love-You-So-Much-I-Wish-I-Could-Have-Babies-With-You Vicadin, from a recent dental surgery that I had been using to control the pain when it was at its absolute worst. Every other time, I used ibuprofen or Tylenol, heating pads, icy hot menthol, and some fervent prayers that I would regain full use of the right side of my body.

"You have been abusing a drug to mask the pain?" He shouted at me. "You have no idea what could happen to your body with all of these," he sneered and gestured again at the sheet of paper in front of him that listed my medications "in your system". I had had enough with this doctor. First he had tried to shame me because of the medications I was taking to treat an unrelated problem, then he says that I'm abusing medication and possibly an addict. "Well, there is no way that I'm going to prescribe you anything thing with codeine in it. You have full range of motion in your shoulder and neck. Most likely, you aren't even in pain at all, but I'll send you to x-ray and write a referral to an orthopedist if you think that you really need it."

I was crying by this point, in front of Zac, who always gets upset and concerned when he sees me cry. I had put up with the pain for so long thinking that it would go away. Now I was being told that not only would it not go away, but I had a doctor that didn't even believe that I was in pain.

So that is where I am now. The results of my x-ray were normal and I have pain almost every day. Gradually, I've shifted from being controlled by my mind and my depression to being controlled by my body. Even my eyes have rebelled. I've had two bouts of pink eye and my eyes continue to be red and irritated. On Sunday I wore contact lenses for the first time in over six weeks, but I'm back to glasses after a hard day yesterday with contacts. Most days, I want to curl up in a ball until my body decides to stop hurting. I've reached my breaking point and I don't know where to go from here.

What's Going to Work? TEAMWORK

At this point in my life, I can honestly say that I'm being held together by pins, needles, and the dedication of hundreds of caring medical professionals. Never before have I needed so many people to maintain a semblance of a functional life.

Let's count up the "ist"s,"ioner"s, and "tor"s that I see on a fairly regular basis:

• Psychiatrist
• Therapist
• Pharmacist
• Optometrist
• Opthalmologist
• Chiropractor
• Dentist
• Endodontist
• Gynecologist
• Family Practitioner
• Orthopedist (possibly soon)

If we add in Zac's list:

• Pediatrician
• Ear, Nose, and Throat Specialist

We get to the surprising number of 13. It takes 13 different medical specialists to keep me and my son healthy. The latest round of medical treatment led me to the optometrist and her partner in crime, the opthalmologist. Don't let the similar names confuse you. I found out that it's bad form to assume that they are the same profession. I had to go see an actual medical doctor, that would be the opthalmologist, to diagnose bacterial conjunctivitis in both of my eyes. I didn't have full out pink eye, but I had red, watery eyes for at least two months before finally taking an afternoon off and going to see my eye care specialist.

I'm back on antibiotics for my eyes. I put eye drops in four times a day. My chronic v problems are still lingering. An interesting side effect of taking 10 separate rounds of anti-fungal antibiotics is that hair starts becoming brittle at the ends. An afternoon at the hair salon and I came out with most of my hair gone, back to a length that I hadn't seen since I graduated college.

So, that's what's going on with me. I'm falling apart at the ripe age of 27. I rock.