Me, Myself, and IV

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Caveat: I have a number of friends in healthcare professions and I have – not just for my friends but for everyone in a chosen medical profession a tremendous amount of respect. What I’m writing in this blog entry reflects my feelings at the time and my concerns and my impressions. I’ve already said a number of times I could not in any way, shape, or form deal with patients. I can’t even take care of someone with a cold. That being said…

The very lovely tech hooked me up to the EKG (ok fine, she did it twice. It always takes twice. I blame the layer of evil thoughts the electrodes have to get through) and someone from registration came in and we did that stuff. As the EKG tech was packing up and I saw the print out I said “It’s fine, right?” followed by “It’s ok I know you’re not allowed to tell me. She smiled at me and said ‘well I didn’t run out of here and that’s a good sign in any hospital.’

Elizabeth the nurse returned with one less pen stuck in her messy bun and said she was going to put an IV in me so when the doctor did arrive if he ordered something she could quickly give it to me. Love that woman. Now, remembering all those surgeries at Mt Vernon, I thought about the inability to find veins and prayed to myself that I stay still so she could have an easier time finding a vein. Guess what? Elizabeth the rockstar nurse got it in one shot. YES.

My dad appeared at the bed (I assume he teleported from downtown DC because of the time of day and weather would have made it a nightmare to drive) and tried to comfort me by rubbing my arm but touch actually hurt. Elizabeth said she’d go see where the doctor was and left. I continued writhing in pain and making noises I didn’t know I was capable of making, trying to apologize for both but still not able to fully breathe or speak. After some screaming…seriously. I screamed…so humiliating Elizabeth and the doctor came in and he once again asked me to tell him what was going on. I was trying to get words out but he must have thought I was exaggerating or something because he seemed annoyed with me. Dad didn’t know much about what was going on just that his baby was hurting and he didn’t know how to fix it.

So after staring at me for a minute trying to figure out if I’m faking pain (I assume) or whatever he says I need a CT scan but there’s no way I can have one if I can’t lie still. REALLY? Do you think its in my best interest with the vitals alarms going off because my blood pressure was spiking then dropping, my temperature was high and my pulse was doing weird things…that keeping me in pain was a good idea while I get a CT scan? Anyway. She gave me a shot and then said I could have another if needed after I had stopped spasming all over. I told her I didn’t want another because I’d like to be conscious while we try to figure out the problem.

Funny how life works. My body 100% laughed at that. About 10 minutes later I was back to heaving and crying and all that. Elizabeth returned with another dose. YAY! I won’t say total pain relief but it brought me from a 10+ to about an 8. Now. I’m used to joint pain with my hips. I know how to function EVEN when I say I don’t, even when I want to punch something it hurts so much. What I am not equipped to handle…is body or organ pain. Let me assure you. I never thought I was such a pussy until this night. Anyway a few minutes after the second shot I was carted down to CT by a very nice young man who helped me get onto the CT machine and my lord holding your breath, then breathing when all of it is so painful. He was helpful and kind and I was injected with Contrast (shoutout to medical advances in that stuff, I used to throw up violently when I got IV contrast), it was done and I was back to my room in the ER. The doctor came back and THIS time a surgeon who has twice operated on me was with him! I didn’t even know he had hospital privileges at that hospital. Time seems to have zero real meaning when you hurt. Its either an eternity or passes so fast. I assume he had teleported similar to my dad. Lots of hemming, hawing, tossing around suggestions. No, I could not have ice chips but I could have this giant bottle of contrast JUST BECAUSE. Actually the surgeon was hoping to see more stuff on a second CT scan.

As both doctors conferred the meds had begun wearing off and I held off on asking for another shot which was stupid, I should have asked immediately but whatever. Anyway the ER doctor kept telling me to breath, then my surgeon chipped in. I know you should breathe. I KNOW. I also know I wanted to murder them both with my bare hands for saying it. “Calm down, breathe”. I’m certain the voice of Beelzebub himself conjured forth when I informed them both I can’t calm down because I couldn’t breathe and MAYBE if being calm was in my best interest then perhaps they should order something for me to calm down. My surgeon jumped in and agreed. I was nicer the last few times we interacted. Ha.

Now…when I was leaving for the next CT I heard this CODE SILVER CODE SILVER across the PA and made a mental note to look it up since the tech driving me down there didn’t seem interested in telling me what it was. I’m so nosy. Turns out code silver is an active shooter or person with a weapon. Lovely. In the EMERGENCY ROOM. How employees function with that level of heightened awareness at all times is beyond me. I had seen the police officer across who was waiting on the other side of my room but against the wall separation between mine and the one next to mine. Turns out the woman in there was suicidal, very unfortunately. She was somehow at some point about to grab a gun from a police officers holster! It couldn’t have been the officer I saw since everything looked ok.  Crazy.

About this time back in my room with the pain meds now mocking me I began the writhing and aching and crying and then…I ripped out my IV. It was an accident but that made me more upset and when nurse Elizabeth came back she wasn’t even mad, but went about putting another IV, this time into my right arm.  She headed out and when she came back I finally asked for meds when she told me to ask upstairs, the current situation was not good and it was best to get me out of there. Which was either code for ‘I don’t really want to’ or ‘someone keeps trying to steal guns and is now handcuffed to a gurney in the next room and I’m scared something could happen’.  Either way up we went into a room in the back corner tucked away which was good because I was full blown crying and begging for death again. Sidenote: my last surgery there was a hostile patient event in the surgical recovery room and they were trying to rush me up because they’d had to call security as well as police officers to the room. Damn. I’m bad luck?

My nurses were swapping shifts but they were pretty good about giving me drugs. Not long after I got up there a doctor came by which, sidenote, I really liked her. I forget her name. I kept track of all my nurses and techs, and even random employees except I forgot her and that’s a shame.

Anyway I’ll skip through a lot of this boring stuff. I was hooked up to saline, we tried to get my fever down and they were still trying to figure why I hurt and what was going on and what was spawning the fever.

One thing I’ll say about this hospital, even though overnight I was annoyed by the nurse and tech because I thought they were sort of slow is that they are sooooo unobtrusive. There was no flipping on of bright lights, there were no loud noises. They were incredibly considerate overnight and I appreciated that. I was awakened for a middle of the night blood draw which was immediately followed by one of the longest damn ultrasounds I’ve ever had. (I need to blog about my first ultrasound at some point because it’s hilarious) When he finished he made it clear I’d be speaking to the radiologist later. Uhm. Comforting? When he left they loaded me up on a variety of meds based on my prelim bloodwork and it was naptime for me.

Anyway there were a lot of visits from doctors and mucho bloodwork, spiking fevers and lots of theories. One of the absolutes was that my blood counts were super low.  I should add there are extenuating circumstances regarding my health history. Some of it might be a contributing factor, some not. Hence, the lengthy stay.

Over the weekend the doctors decided to keep an eye on things, manage my pain while continuing to test me for random things. I got a bag of iron infused with the hope that would bring my blood up enough to improve my health. I thought it would be immediate but apparently it takes some time? Which sounds ridiculous because doesn’t your body cycle through blood pretty quickly? Like within days? There were just so many thing going on, so the medical peoples were having trouble pinpointing where the pain and potential blood loss was coming from. By Sunday it was clear my blood was not helped by the iron so it was time for another bag.

Now…about IV’s. With the constant fevers up and down I’d gotten sweaty and such off and on so my IV site was bothering me. Overnight at some point when awakened for bloodwork (they actually could have done it without waking me except I had to pee) I noticed my sheets were wet where my arm had been resting. It was getting early and I decided it was sweat and ignored it. Well, by the next morning at shift change I told my new nurse about it. She looked at it and taped it down some and decided to change it shortly after morning rounds. No biggie. Except…my IV would NOT be held back. It was not about to wait.

Like my bladder.

The big issue is that on top of saline, I needed to get a transfusion AND I was on 2 different IV antibiotics…yea. Basically the leaking was all the good stuff I needed.  Not constantly, but yea. So she came in, unhooked the old one, then after examining my veins and proclaiming them ‘tiny and delicate’ (Which, btw I heard a lot and not one of them would put on paper and sign their names to! I mean, I wanted it open ended and all, so I could refer to my tiny delicate feminine nature or whatever, details.) decided on my ulna. The Ulna, to avoid a trip to visit Uncle Google is the outside arm bone. So, everything was swapped over and my day continued except…fevers…

Oh wait the title of this was about IV’s. I’ll continue fevers in the last post. FOR NOW…my ulna IV seemed to be ok until for some reason…it literally exploded and saline was gushing out. This is not an exaggeration. I was a geyser. Now, when the nurse came in and saw this, did she turn off the saline? NO. So…I continued to be…a geyser, soaking my gown, the bed, the floor.

She did return quickly and I should add the point of this visit was pain meds. I was getting shots and I was stretching them out as far as I could. This particular day I’d gone 7 hours, which was approximately 4 hours after I needed a shot (haha I could have them every 4 hours). I WAS DYING. I could not wait. She’s there with my syringe of relief and I’m half hanging off the bed nauseous from pain “I’ll have to call the IV lab”

“IV LAB??? OH GOD I CAN’T WAIT. JUST SHOOT IT IN MY MOUTH!” I begged. THEN, because I’m a perpetual teenage boy in my head, I began laughing which was terrible because I hurt anyway, laughing made it worse. Sidenote: I really need my own laugh track

Moving along…the IV lab people are well, I don’t know what their actual title is except these are the people who do PICC lines.  PICC lines! I’m the same girl who ripped a PICC line out of her arm and as punishment had it put in her chest. And when the two angels descended and had the saline turned off and examined my arms, hands, everything for suitable spots they decided to double team me considering I was waiting on 2 bags of blood and needed a reliable site. (It was a waiting game mostly for the fevers, but the geysers…yea)

So, they put one in the back of one hand and the underside forearm of the other. Let me assure you. The one in the forearm…once used was so incredibly painful that I dry heaved when they pushed fluids. I don’t know why. But it was terrible but we were all trying to baby my IV sites.

Alright. Let’s do this!

My first transfusion went into the back of my left hand and did great! Did great until an hour or two afterwards when I woke up to…SOAKED SHEETS. I’m like…wtf is going on here? My nurse was confused, the women who did these are THE experts so what happened? I felt like a failure. How the hell could I screw up 4 IV’s????? All I had to do was lay there and not be an annoying patient yet there I was not being a good patient at all.

So we swapped over and then my nurse discovered she couldn’t push fluids in the forearm IV. She gave up pretty quickly and called the IV lab (thank god) and one of the ladies from the night before came in and asked what happened. As it turned out, it was the lady who had placed that IV.

I came up with a variety of colorful swears in my head while she fucked around with it. She was being gentle; I know she was. But it didn’t matter. She did some trouble shooting, the thingy was clotted. Thingy. I should know some technical words at this point. Now, I was in so much pain I was freaking out. Between my body pain and then this IV…as silly as it sounds…how can an IV hurt? Needles don’t bother me too much but it was the placement or something. It was the absolute worst.

Also, she refused to tell me any swear phrases in her first language. Nurses can be such buzzkills. She told me the last choice really for me was my chest so she did what she could to salvage it and I think we both said a silent prayer.

BTW it held up, painfully. Barely. But it managed to make it through the next transfusion.

For those keeping track, that’s 6 IV’s in a 6 day hospital stay. Dios mio.

20151108161452339This is my left arm excluding my hand. The right is slightly less traumatized. Yikes!!

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Not how I expected to spend my Thursday and new life experiences

TearyBeen forever since I’ve posted here since there’s been zero changes to my hip other than gaining some weight and living in fear of running into my ortho surgeon coupled with feeling its capability diminishing slowly but surely. And not much to report healthwise, just life.

Until last week.

(Going to try not to be my loquacious norm. Fingers crossed. Actually typing with my fingers crossed would most certainly keep my word count down.)

In my long life (it seems like a very long 42 years) there have been 3 times I’ve thought ‘uhm I should probably go to an emergency room’. At least as an adult. As a child I turned bone breaking a sport, collarbone, arms, I was your girl. But as an adult the first time was in my late twenties when, home alone one night while my fiancé was at work I felt an intense, immediate stabbing pain in my lower back and abdomen and it was like fire. Long before Google, long before WebMD I knew it was a kidney stone, was just a feeling I had. I called my fiancé at work who wouldn’t get off shift until midnight and likely not home until 1 am. He insisted on calling his mother to take me to the ER and I insisted he did not. She was a single woman; she shouldn’t be out running me around. I’d drive myself. Although I know that was not going to happen, at that point I hoped to just die a quick death from the pain and be done. I’m such a dramatist.

But arrive she did and her pre-retirement career as a nurse she took one look at me and sped me to the nearest ER. The important part to this story is that we lived in the middle of nowhere. A spread out nowhere. When we got to the ER there were 2 moms with infants, and a bunch of chairs I couldn’t force myself into. So, in pain and crying hysterically while my future mother in law signed me in, I slumped against the wall and to the floor, this time thinking at least I’d die in a hospital.

To their credit, both moms yelled to the intake desk that I was on the floor and gave sympathetic looks to my apparent pain. I was carted to the triage area where I immediately began vomiting everywhere. I was then moved to another room, handed a gown or two, an emesis basin (which I remember thinking…you know what I just did and at what velocity, give me a trash can not this stupid kidney shaped Barbie wading pool thingy).

Without too much more blather, there was only 1 doctor on duty (very small country hospital) and a 16 year old kid had wrecked his car at a very high speed had the doctors full attention. Finally the doctor who stopped in for about 42 seconds said we needed a CT scan before any pain medication (this was before I knew about pain seekers in the ER) changed his mind when he saw me heave, cry and then once again, vomit. I never saw him again and I always hoped the teen survived the car accident. A moment or two later a nurse showed up with a needle and gave me something for pain and I passed out. 10 minutes later I woke up in zero pain My fiancé was there (he’d been waiting outside the door while the doctor was in). It was just toradol but it was perfect. I left in 2 hospital gowns and a blanket (1 worn as a robe!) since of course it was COLD when this happened and there was no way I could wear my unfortunately decorated clothing.

The second need for the ER as an adult was far less interesting. About 6 years ago I’d been dealing with a cold and cough. I’ve got a history of bronchitis (although I’ve never smoked, I’ve had bronchitis on average once a year since I was well, since forever). I was living alone and it was early on a Sunday morning I woke up with breathing issues. Not the omg I’m having a heart attack kind but more the…uh why does it feel like I’m getting no air kind of thing, something is really, really wrong.

Headed to the ER nearest my place, taken right back. It was one of those weird rare times, you rarely see an empty or near empty ER. Hot nurse Chad (totally his real name) hung out with me while I waited on my xrays. We had a nice chat and he had led an interesting life and of course he was nice to look at. After the doctor came in and delivered the diagnosis I had already assigned in my head, nurse Chad did my outprocess or whatever, told me not to feel bad about feeling like a hypochondriac. Oh yea, I was suffering from what they call in the medical profession ‘a cold’.

I left there with a new motto: unless I have a sucking knife wound, I will not step foot into another Emergency Room.

Until last Thursday.

Now, going back to last Monday I had pretty sharp left chest pain which I associated with some sort of random anxiety or gas or most likely a muscle pull. The day before we’d been at the pumpkin patch and with my gimpy hip I’d had to rely on a walker because of the amount of walking and terrain. I hurt. I was tense from all of that, it’s a natural thought process that I’d hurt, then tense up, then pull a muscle.

It couldn’t last more than a day or so. I tried breathing it out, relaxing. The pain seemed to ease up a bit periodically and I’d be able to rest. But man was I exhausted. Tuesday wasn’t much better, but it was some better…a pulled muscle can’t last long right? Everything I did was excruciating and took forever. By Wednesday the pain was less intense but had moved to the middle and some on the right side and was impeding my ability to take normal breaths. Again, not constant but often enough it was quite irritating.

Fast forward to Thursday (remember what I said about being wordy? Sorry)

I’ve only been sleeping about 3 maybe 4 hours each night for a few week and was the same Thursday. Up at 5 with my nephew, got him off to school, then my niece. I had plans for the day. I needed to shower, I was working on reorganizing the pantry, and my niece had a late day doctor appointment I had to get her to. Had a couple resume changes to make, did them, uploaded them and then went to shower. After my shower got an iced coffee, considered eating but wasn’t hungry. Sat down with my makeup and hair stuff to get all beautified. Answered a call from a friend and as I sat there in my bathrobe stretching further and further back on the bed because the left chest pain was bad an it felt like someone stabbed me in the middle of my chest. We hung up and I lay there a second.

It was one of those defining moments. One of those…I need to make a decision moments. One of those, something is 100% absolutely to my detriment wrong.

I stood, tied my robe a bit and hobbled bent over at the waist completely crippled by chest pain, and inability to breathe and choking from trying to gulp in air as I could get it and slowly drug myself to the living room. Had tried to get my moms attention but her hearing isn’t great and I couldn’t make loud words and I was trying to make her understand something was wrong. She looked at me and knew I was for lack of a better phrase, in peril. She called my dad who was way too far away and I have no idea what she thought he might be able to suggest. I stretched out some, I leaned to and fro, I heaved, I gasped for air, I massaged my chest, I gasped out that I was dying, I tried to lie on the couch which turned out to be the worst idea ever ever ever. After several minutes of this and her saying several times she should call 911 and saying what we both didn’t want to bring up: I don’t have health insurance…I shook my hand at her and listened as she talked to the 911 operator. My nephew met the ambulance outside and I tried desperately to explain when I couldn’t breathe. The EMT pushed on me, causing great pains, and they hooked me up to an EKG (no heart attack but that wasn’t a shock). I listened as they spoke to each other, one spoke to my mom, my body practically shook with pain. It was almost worse than kidney stone pains because it was in my chest and abdomen. It was torture. They informed me I needed to be transported and loaded onto a stretched I was.

Every step, every move, everything killed, I screamed out in pain like one of those people I hate. In the ambulance I continued trying to answer questions, doing a horrible job the entire time. Angry from pain. Scared I was legitimately dying. Angry I had no mascara on. Wondering why they asked certain questions. I hadn’t even noticed my upper abdomen was distended and hard as a rock…and I couldn’t tell them how long it had been that way. I tried to explain I didn’t take heart medication because my blood pressure was normal (except this time it totally was off the charts for obvious reasons).

I overheard them say ETA 8 minutes and I cried and cried more. Then I heaved and was handed a weird emesis bag (HUGE improvement over the kidney shaped Barbie wading pool, btw). All I did was spit because I hadn’t eaten since the night before. Repeat that process a few times and rather painfully. At the hospital I was taken to a room where I continued to dry heave and make god awful noises.

I was thankfully put into a gown (yes, I left in an ambulance in a robe because I couldn’t put on clothes, not even unmentionables. Which, I have now mentioned making them mentionables.). I once again tried to rehash what was going on and what my health history was all while writhing in pain. Literal writhing. I was doing it trying to breathe, to try and relax because I knew if I could relax, I could try to control some of the pain, but nothing worked, nothing. My very kind nurse Elizabeth who I silently titled ‘Countess of the Pen Crown’ for her messy bun loaded with pens (the count of which dropped during my short time in the emergency room…weird) left the room for a moment while the EKG tech came in to scan me.

(Part 2: Me, Myself, and IV)

 

 

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Long time, no see – my 6 month hip checkup

Man, I haven’t written anything all year. Guess I got tired of my own whining for a bit. Anyhooo dad my 6 month hip checkup today. Sort of. I was over the 6 months by a couple. oops. My last visit was in April but it was time for a check to see how my spacer is doing in that hip o’mine:

1) Surgeon ecstatic I have lost as much weight as I have! After my last surgery to put the spacer, he told me I needed to lose a considerable amount of weight “Like one hundred pounds”. Haven’t lost that since his mandate, but he was able to see how much I’ve lost just by looking at me and complimented me several times and said how proud of me he was. ❤

2) Xrays show my right hip with the spacer is coming along nicely. there’s no damage and it is technically perfect right now. Major concern is muscle strength in that hip. Although I do feel stronger on that hip, I was unable to do some basic exercises, not even a bit which proves my muscles haven’t improved enough. I have exercises to do to work on that muscle group. He was immensely pleased when I told him about the exercises I do already.

3) Due to unexpected unforeseen circumstances, I will not be able to have surgery to replace it (or any other surgery for that matter) for a while. Probably a year or more. I told him how anxious and panic stricken I was feeling like my spacer would wear out. He assured me that it would not. He said its functional and 30-40 years ago they used the spacer as an actual hip replacement, except it was secured permanently to the bone. Mine is not drilled in place and therefore is subject to heightened precautions to keep it in place and looking good. No breakage, no splintering, nothing!  Major sigh of relief, had no idea that was the case.

4) Watching me walk and discussing my hips, he suggested that replacing my left hip which is so incredibly degraded BEFORE replacing my spacer is a course of action to think about. Since my right hip is mostly functional, the huge amount of pain and limiting mobility could be fixed by replacing the left so at least I’d be able to exercise, walk freely. The left is so weak and so very compromised that its frightening. Its like I can feel it getting worse each day. BUT I am glad he thinks that the left can be replaced…it would be like…freedom. Freedom from the specific pain that hips bring.

5) He wanted to look at my scar, pants down (was tempted to wear my princess panties with a crown on the butt but resisted and wore something less overtly attention seeking. Go me!). Surgeon manhandled my hips (not complaining) and looked at my scar and was very pleased by how it healed up and how my body looks and adapted. But seriously, all the squeezing and such…was everything I could do not to suggest he now take me out to dinner after all that groping. BUT since I didn’t want to be asked to leave…lol

6) Wants me to get a plastic surgery consult for my hips. As he was manhandling me he explained that I have lost so much weight and my hips, while considerably smaller would never shrink down significantly. My hips are just fat and skin and there is not a way to ‘spot reduce’ with exercise for that area. I asked if I could just lost another 40 pounds and it would be fine; he said it undoubtedly will help but my shape being shaped as it is would never allow me to naturally lose my hips. He said it wasn’t mandatory but it is something I should at least consider . We talked about other options as I move forward and he reiterated he was extremely pleased with the things i’m doing and to keep it up. The stronger both hips get, the easier it will be for me to recover from my future replacements.

Holy moly that was long. I’m just pleased it was a good appointment and all the worrying I’d been doing about losing weight had paid off, I’ve lost more than anticipated, so I’m clearly doing something right. I didn’t figure he needed to know most of my weight loss was from being overwhelmingly depressed but hey, whatever works right?

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About Spacers, Personal Accountability, Goals, and other fears that haunt the mind

*Warning: Potentially disturbing Pic at end of post*

Lots on my mind since my last surgery.  First, I can say definitely that this last surgery was the worst. It was so incredibly painful and so physically limiting that I was terrified something really wrong had happened. It was more difficult because something was being removed and something else added in place… in this case my antibiotic spacer oh and also each time they go in, there’s more tissue removed and more of my hip is cut off to make a clean stitch area.

Mentally it has been tough because I was incapable of doing basic things. For the week (or maybe longer?) my dad really had to help me get out of bed with a combination of a push-pull movement. It was terrible. I felt so bad for him having to do so much for me.

My physical therapist reinforced the things my surgeon had; namely that I needed to protect my spacer, use assistance when moving and stay on 50% weight bearing.  This thing functions like a hip for the most part but it is not.  So, keeping that in mind I have been as good as gold. Lots of crying –  mostly out of fear.  And a bunch from pain.  It’s really scary when the signal from your brain to your limbs seems to break up and you can’t forcibly move your body.  Awful.  I really did not expect the issues I had with this one, mainly the crazy amount of pain and the worst was any movement just made things terrible.  Then I had a hematoma that made my bathroom, the carpet and several sets of sheets look like some kind of violent murder scene. I had a LOT of scares, fears. There were at times where I lost so much blood that I was convinced I would die. Fortunately I saw my surgeon a couple days after it began (of course it started late on a Friday night) after some discussions and exchange of pictures to the nurse and the surgical Fellow. I even ruined a chair and pretty sure they needed a hazmat team to sanitize that place after I began leaking blood everywhere.  It turned out; it wasn’t circulatory blood, but the result of a pocket of blood that was just sitting inside. He said it wasn’t uncommon during  surgery, especially considering how much blood I lost (I ended up with 5 more blood transfusions while in surgery and later once I was on the unit). That made me feel better because normally a body will re-absorb the blood but if there’s a way for the blood to get out, it will. In this case I ended up with an open wound again (which he made larger…in his office…with a scalpel…and no pain meds…or lidocaine…yea. I actually didn’t know what he was doing, but he kept asking me if this hurt or that hurt…Finally I told him it didn’t feel good by comparison it wasn’t a big deal) and therefore the blood had an escape path.  Anyway I really thought I was going to die until he told me the blood was excess and not going to kill me.  I have no way of knowing these things and really thought this was it.

Things are much better now. The remaining drainage has slowed down significantly and during my appointment the other day he was very pleased with my progress. I don’t go back for 8 weeks unless I need to see him before then. Physically I can tell I’m stronger but then I end up having a day like today where I couldn’t stand. My legs shook uncontrollably. I couldn’t stand unassisted.  I was really upset.  Even once I was in a reclined position I was shaking.  I’ve had this happen several times since surgery but everything is ok technically. During my x-rays it was clear my spacer was in the right space, had not been forced down into my femur more than it was supposed to be.  And finally, he told me to continue using a walker, move to a can when I’m ready and to start with short distances.  Right now the cane I use in my closet or the bathrooms. Small rooms but I still need help walking and especially where balance is concerned.

While in the hospital I was so upset because of the pain and my inability to walk and I felt like my progress was not good.  I recently caught a show called My 600 lb life…a story following morbidly obese people getting gastric bypass.  Many of them were normal folks who let an emotionally based eating disorder get the best of them and some were just lying to themselves. As I watched people during their hospital stay, talking to the cameras, interacting with their families…I was mortified. I started thinking about how I asked to keep my catheter an extra day because I was in so much pain I couldn’t stand on both feet.  All the pain, the crying during physical therapy. And some of the people on  the show had spouses or parents that were their enablers…its hard not to enable someone who is seemingly helpless…but as I watched these people, my stomach churned with shame. I can’t believe the crying I have done, the anger I have had, all the giving up their lives for weeks on end from my family.

My mom had the kids and was dealing with them day in and day out. She’s a bit neurotic so small things set her off and she needs my dad to support her. But here was my dad, teleworking or going to one of his offices, stopping to get things for me…groceries, prescriptions, cooking, making sure my meds were laid out each morning I so I don’t have to cold infuse. Helping me in and out of bed, a couple times I had to call for him in the middle of the night…which I hated but when I couldn’t get out of bed…I couldn’t do it.  And don’t get me started on what I call my newfound shame: the bedside commode. I’ll just let that set in for you and leave it.  There are not enough thank yous or apologies I can ever give him for the care he gave me.  Always made sure I had protein heavy meals, encouraged me to eat even though I didn’t want to. Listened to me cry, did my little errands like…getting and putting socks on my feet or if I forgot something in another room he would go get it.

Granted, the very moment I could get out of bed by myself I never asked for help again except when I realized I was bleeding out from my hip (it was an enormous and shocking amount, I think he was worried about that, not me waking him).  He was so overworked. Doing laundry constantly, just…everything.

Anyway…so now since I first saw this show yesterday I see these people, being enabled, not taking account for their health and I am terrified of being one of them. Is that how the nurses thought of me? My surgeons…do they think I’m my own worst enemy and not living as I should?  Do they think I have psychological issues and exaggerate?  Some lazy fat chick who didn’t want to walk?  Who cried when she had to go to the bathroom? Is that what my friends think?  My co-workers? As I sit around quite literally trying to heal…do they think I’m lazy? Do they believe I have pain or are they ‘over’ me and my pain and issues?  And my care team…my physical therapist…even though I always joke complain about the hard work he makes me do…does he want to shove a sweat sock in my mouth to keep me from that? I always do more than he expects, even when my pain is a 10…and there have been several of those days. My nurses…both for my orthopedic needs and my infusion (PICC line) needs…do they think I’m living correctly? Or do they loathe coming to visit?

In my head I’ve all along and now even more so been judging myself against some set standard my brain fabricated. There is no standard. There are no prizes for pain or surgery. There is no reward in trying to not use a walker and further injuring yourself (did that before the last surgery…fantastic). As much as my surgeon reiterated my need to use an assistive device to walk, I think he knows that I’m doing that in my head and perhaps he was trying to make me feel ok.  There is no handbook on this stuff. Every day, everything is a chore and my tantrums where I cried or got upset or had a panic attack…is that because I have a legitimate cause or am I giving up and whiney because I have a shitty personality?  My friends, family – everyone has been so supportive and I am thankful for that. But I wonder if they secretly think I’m a lazy, unmotivated, enabled crybaby.

Now…about weight.  I have been much larger than I am right now.  I lost weight, and maintained that for 8-10 years. Then I lost about 30 or so pounds because of…well who knows? Stress most likely. I wasn’t trying to lose weight but it happened.  I used to get worried I was somehow sick to lose weight mysteriously but no, it’s normal especially when someone is stressed out (and a few years of chronic pain will certainly do that).

I’ve lost a LOT since my hip replacement. I’ve lost a solid 45-50 pounds for where my ‘average’ weight is now. I’ve also gained and lost 5 here, 10 there, and yo-yo’d for months on end. But still at the end of the day I can say that those 50 pounds…wait…ok…nope 70. Apparently I can’t do math.  Ok so still 70 pounds at the end of the day.

Probably one of the reasons I’ve been much heavier is because well, I think I’m sexy and I’m this sexy at this weight, I don’t need to lose any!  Lol. I know, I know…I have friends in good shape and friends with enviable bodies who criticize their bodies and if they ever thought they were sexy, they’ve never let anyone in on it.  But me…well I just walk around thinking I’m hot stuff. I’ve suffered with the huge ego thing because I keep getting cut open and hey having a giant open gaping wound can cut down a person, even one so full of herself the ego spills from her pores.

Over the last year, I’ve devoted every day to eating at best a modified Atkins diet of high protein/low carb meals…so the weight loss of the last year really makes sense (although yes, some of it is related to stress).  And given my surgeon wants me to lose 100 pounds, as I was sitting here today with that show on in the background I realized shit…from my last weight I’ve lost 18 pounds…so…while a 100 seems like a lot, 88 doesn’t.  Yea, weird how the mind works.  Having had the nutrition thing drilled into me by all my doctors over and over and over again has caused me a lot of food anxiety. Which is a big excuse…but I know I have to eat…and I have protein goals. I have been healing nicely and I’m certain a lot of that is because my dad was making sure I’ll eat. I can damn sure go a day or so without any food…and I KNOW that is not healthy.  My body needs fuel constant high protein fuel to heal my muscles and infection.  And my attitude has definitely changed…not eating anything doesn’t do shit to anyone but me. Starving myself as punishment because the scale went up a few pounds or because I’m angry or depressed only continues to hurt me.  Not any other people will be affected by the food I eat. Just me and me alone.

My ex-bf and I were speaking recently and he asked about my eating and asked if I was weighing myself often and  then threatened to take the scale from my kitchen and take it to his house if weighing myself was the reason I wasn’t eating. He’s scared for me.  I know that.

So anyway after this last surgery I haven’t been prancing around in front of the mirror much, but I had noticed how my right hip had been cut into, leaving a very normal hip that is in line size wise with my left.  It used to be was I off balance, now I’m not.  And last week or something I was on the couch and I put my right leg on top of my left.  There was this bony thing on my knee and I rubbed it and massaged it.  Didn’t hurt.  I pulled up my pajama pants and realized it was my KNEECAP.  My legs are fat, my knees have never been that exposed.  Holy wow.  I didn’t go stare naked in front of the mirror, but the other night I was lying in bed freaking out because my right ‘hip’ is sticking out more than the left.  So at my hip checkup appointment I said something about it to my surgeon who very cutely told me it was not abnormal to easily feel hip bones.  I mean…hip bones.  Really? Between that stuff and then watching this gut wrenching show about these people over 600 pounds I thought how come as a whole I don’t look any smaller?

In theory if I’ve noticed the things like protruding bones then I surely must look different.  Most of my clothes are too large. So why have I been so reluctant to set any kind of weight goals? Seriously, If I continue as I have been I’ll lose slowly but if I lose 5 pounds a month even that’s 60 pounds in a years time.  The only difference is I plan to lose that, it won’t be a shock and all I really have to do is be a little more conscientious about food choices and make sure I’m eating enough and hydrated enough.  Duh.  This isn’t rocket science and it’s totally doable.  So…I’ll do it.  Even though I think I’ll look weird that small.  Hard to fathom.

And also…how the hell is my brains image of my body as a whole so twisted that when I was heavier I thought I was small but now that I’m a lot smaller in the last year I think I’m larger.  That’s just fucked up.  Even more messed up is that after the discussion about him removing the scale, I realized that my ex bf and I are the same weight and he isn’t fat…yea so there’s that.

Well thanks for reading.  About time for bed. I’m really tired today and plan to go to the office finally tomorrow (the times previous I wanted to go we ended up having rain or snow/ice…I’m not interested in falling on an icy patch and breaking a bone or popping out my antibiotic hip spacer. No thanks. No more surgeries until I’m healed and have a clean bill of health.

This picture was taken about 10 days post op after the bleeding had begun, picture taken to send to medical care team to assess me for emergency treatment. I was lying on my left side with my right leg slightly bent.  the unexpected indention at the 2 o’clock position is where my natural hip makes the bend to my thigh. Repeated trauma and surgery and openings have caused issues. I was also extremely swollen (because of the hematoma) so that exaggerated the indent. Post Op with antibiotic spacer implanted

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I thought I needed to blog today, turns out I just needed to whine into the blogosphere

With surgery coming up quickly, I’m having to do some work off hours to complete a project in time. God only knows what I may face so I need as much done as possible.

15 days. In fifteen days I go under the knife. My surgeon will take out Bionica, my infected almost year old hip and replace it with something called an antibiotic spacer. To the best of what I’ve read, an antibiotic spacer is usually partly made IN THE OPERATING ROOM…WHAT?  Yes, there’s a mold and all, there’s a special cement pre-loaded with a high level broad spectrum antibiotic (usually, Vancomycin although I might end up with something else because of my allergies and the degree of infections) which is emitted from within the spacer permitting the patient to have mobility while removing the infected hip.

Now…many of you know I’ve been on assorted antibiotics for all but about 1 month of the last year. I just got off my last PICC line from the October surgery and was immediately put on a huge horse dose of oral antibiotics.  I just assumed (falsely) that I was healed when my Infectious Disease Doctor (from here on, IDD) had me removed from the PICC line. No.

Wow, how did I get that wrong?

During my last appointment with the Wound surgeon, I asked about it. He put it in blunt terms (which I appreciated since I didn’t understand…I mean how can a foreign non-tissue non-living entity in a body become infected????). So here it is…once the bacteria attack a foreign object in the body and it can be (as he said) an implant, a bullet, bomb shrapnel, or a pacemaker (btw when he said bomb shrapnel my face assumed a horrified look, utterly confused by his thought that I was walking about war torn parts of the world)…but when the bacteria attack it, they attach to it and cannot be removed. CAN NOT. The bacteria apparently spread themselves to all the tissue in the area around the implant. He said I could breathe antibiotics and it will never make a difference.  I think it was him saying those last words that finally made me see the truth. And it sucks.

So, on January 20th (time yet to be determined but since Mount Vernon INOVA likes to fuck with me, I can only assume it will be at noon and I’ll be dehydrated from not drinking or eating since midnight and they will have to get the vein tracker out, have the anesthesiologists do my bloodwork and start my IVs) I will undergo removal of my hip replacement and have the spacer put in.

Sigh

I don’t want to do this. I REALLY DON’T.  I don’t want to have more pain. I’m so very exhausted from pain and hurting and this is going to make everything worse, adding a good 3 weeks or so of surgical pain to my existing pain. Of course, I’m gauging my potential pain on what happened last February when I had it replaced to begin with. That hurt. A lot. Sure, I did not have hip pain and that was great but oh holy moly, the other pain…nobody told me. My best friend who apparently is super human had no hip replacement pain, never took a single pain med and I took care of her!  But I went in expecting not to hurt or have pain…not realizing…they’re cutting your hip and thigh about 10 inches, YES IT IS GOING TO HURT.  Anyway. My left hip which now has bursitis in both the front and the back hurts about 30-50% more than the usual hip pain. I can’t even begin to explain. BTW bursitis…commonly in shoulders…should someone you know have this…TAKE PITY ON THEM. Basically my left leg is useless anymore. I went through a course of steroids and I remembered fondly the last course of prednisone…it was about 6 years ago right when I began having issues. I have never felt better. In fact, I asked the doctor if he could just keep me on them. Apparently not, as they are bad bad bad for your body but this time? I had one day where the pain let up and since then, it’s been awful, just awful. Sigh.

I wonder sometimes if maybe I’m just a huge baby or child where pain tolerance is concerned…I’m so used to it. I’ll hurt so badly that I can’t fathom worse pain, then something happens (ahem, bursitis) and its even worse. Its like constant challenges from the universe and I don’t know why me.

Maybe that’s part of my problem, I feel like I’m truly being punished for something. Like I did something wrong somewhere and that because of my actions I’m punished with constant chronic pain and loneliness.

Certainly I haven’t been in the mood to date over the last year or so…pain will do that to you but the worse I get, the more amplified my lackluster love life becomes. I’m not a bad person, not really. Or maybe I am because like I said, I feel like my life is punishment.

Wow I really went off there on a few tangents.

The point is: surgery. I’ll keep the spacer for 6-8 months then, my hip surgeon said he would take it out. Although the normal route is removing it, then putting a new implant in. Uh, I wasn’t entirely clear but he made it sound like I’d have to wait up to 3 years possibly before I get a new one. Oh and I need to lose 100 pounds before then.

I got news for you: I’m not going to lose 100 pounds. It is not ever going to happen. Why? Because most days it’s a serious effort to get in even 1000 calories…I’m not sure I can eat any less and still exist. I’ll bet half the time in a usual week I average 700-800 calories in a day. That’s not exaggerating, not even close.

I need to call his office this week to find out a few things:

1)      How long is he expecting my hospital stay to last

2)      I need a note faxed to my office for me to be out and for subsequent telework

3)      Does he REALLY expect to take out the spacer then leave me with NOTHING for a few years? Yea, not going to happen. And I want this fleshed out before he opens me up. I swear to God I’ll never let him leave me with nothing whereupon my muscles atrophy and I’m a cripple. Not even close, bud.  And I don’t give a damn where you went to med school. You’re not doing that to me.

4)      My last surgery (where he just assisted/scrubbed in upon my wound surgeon discovering the extent of the infection) I was not given adequate pain management…to the point I was less medicated post-surgical than I am on a normal day. I want his assurance that he is not planning to do that to me. I was completely miserable and a few times in tears from pain…no sir, not going to happen (although previously, he was fine on pain management). I spoke to my pain management doctor who I told about my lack of pain management in the hospital. He told me a lot of doctors are afraid of people using a pain patch such as mine. They don’t know how to adequately medicate around that. Patches are not made for surgical pain management and patients can’t be removed from them nily willy. Anyway I was glad to hear this happens and he suggested before I have surgery that I tell my surgeon to consult with him on the medication management. I definitely appreciated that.  I swear I will be a very unpleasant patient if I am in constant pain and not getting any relief.  Supposedly there is a formula they use for pain management…If I’m not mistaken it’s a baseline of your usual pain meds +20% jumps as needed.  However, you’re not really allowed to talk about pain meds without coming across as a junkie. To wit: he insisted on giving me uh…what is that one drug?  Oxycontin.  Yea, I had that several times a day beginning the day I came in for surgery (seriously, the nurse ushered me back for my intake and handed me 2 oxycontin and a tiny swallow of water in a paper cup), then through my initial stay and then during my subsequent 3 week stay…I told him that it does not help any of my pain and I would appreciate not having to take it. But no, I had to. Whatever.  I mean come on…I know my body and I know it doesn’t help…why put more crap in my body when I’ve specifically said it doesn’t help? Anyway, I digress.  Obviously I feel strongly about pain management or lack thereof.

Only after those above things are settled in my mind will I go through with surgery on the 20th. There is no way I can let him take away Bionica unless I have a clear path on my treatment. Ugh. So not looking for the shit I hated…random meds that made me dizzy…Coumadin, specifically.  Hip surgery is very bloody and with the amount of blood loss and potential for blood clots…a blood thinner is pre-prescribed (uh yea, I left his office with that prescription and the one for the MRSA pre-surgery nasal gel…when the nurse handed it to me, I said ‘oh is this the same anti-MRSA gel I used last time and got MRSA on?) and the issues with feeling awful post-anesthesia and the asinine physical therapy (seriously…I don’t know if I can take much of those people) that didn’t really help much (especially when I was given pain meds before their scheduled arrival time only to show up 3 hours late with no meds to help ease it up.  Yea, did that a few times.

Seriously, I’m going to be the very worst patient. It’s like…every time I’ve been in the hospital I come away with lessons learned/things to plan for. Like q-tips. And good lotion. And good face wash cloths. And headphones. And the number of the patient advocate. She will get a call every time I’m unhappy and I’m not kidding.

You go into the hospital with the idea you don’t want to be needy, you want to be a good patient. No way in the world I want the poor nurses working long hours to dread my calls but you know what? I’m not about to be ignored/neglected/avoided ever again in a hospital because I want to be ‘nice’ you know why? Because the noisy, busy, needy patients ALWAYS get taken care of quickly. And I have proof of this with mine own eyes.  So…that is exactly who I plan to be. I’ll still be nice and not abusive but I’m going to get my needs taken care of.

Ugh.

I keep stopping this to cry. I hate it.  I don’t want to be strong; I don’t want to deal with this stuff. I’m sick of being told I’m strong. I don’t feel strong; I just don’t have any options. It’s me and me alone. Sure I have amazing and supportive friends and family but at the end of the day it’s all me.  Sidenote: Yes, it is better to be me alone than to be in some sham of a relationship and not have a supportive partner/spouse. But still…

Have I mentioned I really don’t want to do this? Just give me the strength to get through these next few weeks, please.

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Post 3 of 3…What do you mean I’ll just have no hip?

I’m going to keep this brief because I’m tired and I keep thinking I’ll write this when I’m not tired so it sounds cohesive but as it turns out, I’m just going to be tired all the time.

Last Tuesday I saw my hip surgeon, stripped my pants down to my knees so he could look at my hip wound.  I was sitting in his office, bored, waiting on whatever horrible thing he was going to say. In my head I battled…be positive…be realistic…be positive…be realistic.  Was thankful when he and all of his 6’8” of him walked in to shake my hand, asked me to de-pants and put gloves on.

“I promise not to cry. I know how bad you do with crying women” I said as I unzipped my pants.

“I don’t do that badly. Do I?”  He nodded at the box of tissues on the counter. He was at least prepared for me.

He did settle my mind telling me he didn’t think the infection living in my hip would not likely spread systemically and kill me. However, he refused to pinky swear on it.  How rude. He touched my thigh, hip and moved fat around and talked about the issues around his current plan.

Currently. His plan is to remove the new hip, put in a spacer for 6-8 months. The spacer has antibiotics in it. And then after my infection is gone once the spacer is gone, then he will put in a new hip.

There were questions I didn’t ask…like how come you’ll keep it in 6-8 months then it could be 2-3 years before I may get a new hip? Il be crippled. My muscles will quickly atrophy. What the hell? Oh and while I have the spacer in I still have to use my PICC line antibiotics.

I’m just so….upset.  There’s too many questions. Too many concerns. And people tell me it will be ok…but they don’t know that. They have no idea. THIS was supposed to be ok. Instead I’m being punished by constant pain, an inability to walk properly. And I wake up crying because I have awful dreams at night.  I don’t want to do this, I don’t want this to be my life.

Shit, I can’t stop crying.

OH and the best part of the appointment was him telling me I need to lose 100 pounds before he puts the new hip in. I have some info for you doc. I lost a bunch of weight this year because I wasn’t eating or taking care of myself, I was stressed out and upset over the last 2 years and yes, I’ve lost weight. There are no exercises I can do and anyone who had eaten a meal with me knows I barely eat. Waiters in restaurants ask if my food is ok because I generally leave so much food on my plate. I do snack sometimes but in the last year my snacking has been on protein. So I have one surgeon telling me to eat and get in my 120 grams of protein and the other telling me to diet. Fuck em all.

So now since then all I do is obsess about food. About what I should eat, not eat.

The hip surgeon had no real ways to help me lost weird. I can’t walk. I can’t ride a bike. I can’t I CAN’T I CAN’T. There are no excuses, I can’t. End of story. And for what its worth if he saw a picture of me from oh say high school he’s see that my body has been shaped this way forever so if I lose 10 pounds, 7 of that is coming from my chest/shoulders and the other 3 is coming off my hips and ass. So yea.

Anyway January 20, 2014 is my next surgery. At least it gives me some time to build up some leave from work. Every time I think I can’t be more miserable, someone out there proves me wrong. I used to be so much fun, so awesome. And now I’m not.  I don’t operate well under these conditions. Guess that’s life, right?

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Part 2 of 3 – I’m sorry to be the bearer of bad news…

On the heels of the horrific feelings I had emotionally and nerve wise I had made appointments with all my doctors. On Thursday I already had a follow-up with my wound care surgeon. Then Thursday night I had the last appointment with my GP. Already on the books I had an appointment with my Hip surgeon and I had made an appointment with my pain doctor for the following Wednesday. I knew I was reaching the end of the care with my wound surgeon so I felt like it was time to go back to pain management so I could get that wicked pain that drove my body into a total body crazy anxiety attack and that’s not something my wound care surgeon could do.

Thursday morning I was drained, I was beyond drained. Fatigued. Weary. Tired from the inside out. I had mild concerns when dad changed my bandages and said it appeared to change between dressing changes. Weird. But since I can’t see where it is, it’s hard for me to gauge anything. I still have a significant amount of drainage but even that seemed to vary from day to day. Still though, I felt confident this would be one of the last times I’d have to see my wound surgeon.

Got to the wound care office; I had managed to put on some mascara and blow dry my hair, but I looked a hot mess. Big time. Generally even when I feel sick I make an effort to put makeup on to look nice. Or niceish. Didn’t take long before I was called back. The nursing staff there is so very kind. Dad came with me and sat in a corner while I pulled my pants down as far as I could. The massive pain I was in from my left hip meant: not much. My chart was reviewed by one nurse while another got my vitals (my BP was through the roof – for me but it made sense since my pain was riiiight at a 9.) My bandages were removed, I was cleaned, measured and then pictures were taken and loaded into my file. When I turned my head to see the picture I started getting teary. I look like a monster. My nurse assured me it was just the staples and it would heal and look good in time and not to worry. Soon, my surgeon came in.  He gloved up, sat on a stool since he’s like 6’6”. I had been lidocained up and he began removing staples that had become quite comfortable in my body after nearly 4 weeks. For the most part I didn’t feel anything. A couple were a pain in the butt. Literally.

He started talking about how bad the lower part of the incision looked the part where the drainage had come from.  I was lying on my left side facing a wall half naked, partially draped in a blanket and those poor nurses were trying to help me maintain my dignity since the surgeon is a man and of course my dad has no interest in seeing my half naked ass.

And then he said it “I think this shows the implant has to come out”

I jerked around “WHAT? But…but…the antibiotics.  3 times a day of antibiotics. You said…I could keep it. I’m eating. Dad, tell him I’m eating. I’m doing everything I’m supposed to.”

My surgeon told me this was nothing I had done or not done. He said “Even with all the treatment that is going on your body refuses to close. See that?” He showed me two of those 5 or 6 inch qtips used to draw cultures. “I was able to put these in to the end and if they were longer, I’d have been able to get them in further. This proves the incision is so far deep this is not working.”

Cue tears, sobs. “But. But. But I don’t want you to take it out.” I said

“We talked about this. You knew there was a chance this wouldn’t work. In an older person, say an 80 year old woman, the body would not be able to handle being closed up over an infected implant. But in someone your age, we hoped it would work.  It didn’t. All we lost was time. When we went in we didn’t burn any bridges so we could go in later and do this if necessary.”

“But it’s not even been a month! I thought we were supposed to give this some time?” I asked.

Tears. Sobbing. Kate the nurse poked her head in, rubbed my shoulder. Dad stood on my left side with a box of tissues as I cried and snotted all into them. Sexy.

“The issue is the infection is not clearing up and it can move into your bloodstream; go into your heart valve and…”

He didn’t finish because I knew the next words: kill me.

That part hadn’t even occurred to me.

I continued crying. And then I cried some more. I asked my doctor for a note to go back to work Monday and pain meds to hold me over so I could walk with my painful left hip until I see my pain doctor next week.

We discussed my appointment with my hip surgeon which had already been scheduled for the 19th. I sobbed. I tried not to sob and sounded even worse. The surgeon apologized for having to be the bearer of bad news. As I write this tears are streaming down both sides of my face. It’s not *just* this…it’s so many other things. So many things you might not think about or even imagine could be going through my head.

When the surgeon left and asked me to see him next week, and the nurses left to collect wound supplies I told dad I planned to self soothe and I insisted on a Breve Latte and a scone. 

I was bandaged up like some kind of crazy person (she did a great job). I dressed, wiped my eyes and dad offered to go get the car while I made my follow-up appointment. I spent the majority of the day crying off and on. Fearful of my future. Scared to death that this infection could kill me any time. Having a distinct feeling your body is attacking itself is the worst feeling ever. I can’t even begin to aptly describe how absolutely petrified I am every time I close my eyes that it will be the last time.

Ok I can’t see any more for the tears so I’m going to post and thank you for all your support and well wishes. They help more than you know.

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Part 1- An impending Sense of Doom

Most of you reading this are reading from Facebook. You’ve followed by haphazard status updates, my whining, my complaining, and my worries. And many of you have e-mailed, texted to offer support but trying not to pry too much. For you all, I thank you.

The best way to do this is in pieces so here is part 1. Part 1 begins the scariest part of my life.

Part of blogging all the details I’ve blogged is that you guys have come to expect a level of detail that  should probably be kept to myself but at this point in my life…I feel I owe it to you all for the support and love and comfort. And nothing worse than getting second hand knowledge from 2 or 3 people who may have gotten the story at some time.

There are things I believe in. While I believe in God, I have religion (though I could practice more in general), other than that I believe in concrete. I believe in things that can be proven. I believe in things that I can prove. So for this first part I ask you to keep your eyes and minds open because I feel like a nutter even admitting this.

Years ago a friend (who shall remain nameless) had a blood transfusion. She called me to tell me the nurse told her that if she felt an ‘impending sense of doom’ to let her know. She, her husband and I have joked about this over the years. Earlier this year when I posted a picture on Facebook as I received my first blood transfusion ever, her husband commented, asking If I felt an impending sense of doom. Since I’d been given some Benadryl at the same time, I slept through it and felt nothing.

Last Friday my best friend Kathleen came to visit and her sole intention was to clean my place. Not that I live like a pig or some damn hoarder but I have things and I like my place spotless and tidy. She knows I’ve been largely unable to do that over the last months. Instead she spent her holiday weekend with me, cleaning, organinzing. Making me help organize through old papers, magazines etc.

Saturday morning when I awoke I had a new pain. Not in my right hip – the one causing so many issues.  The other hip. The left hip which also needs to be replaced. But the pain was new. Snapping, popping, creaking. And while many people end up with ‘snapping hip’ syndrome which is more annoying than painful, because the state of my hip joint this was not painful. In fact this hurt worse than anything I’d ever felt. My pain meds didn’t seem to be working (I later discovered my Wound Surgeon prescribed me wrong…with a way lower dose. FUCK).

I laid on the couch all weekend, dying in pain. Overcome by the fact I could not move my left leg a millimeter without shouting in pain. There is nothing I dislike more than overdramatic pain. I try to keep it to myself. Suck in a deep breath, maybe say ‘whooo’ or something but this was new. The pain began at the middle of my buttocks and wrapped around to my groin. No comfortable spot.

Monday Kathleen had to leave and my nurse Barbara was coming to change my PICC line and get bloodwork.  I had had such a good weekend. Aside from all the cleaning, Kathleen had cooked a few great meals, spoiled me. And made my life feel a little less chaotic. For all intents and purposes, I was happy as I could be emotionally.

While Nurse Barbara and Kathleen and I chatted…my nurse is wise. We need more people like her on earth. She took care of me, we all chatted but I felt this just off feeling. Way too hard to explain. I’d love to explain it but there are no words.

Soon after it began the Nurse left, the Kathleen left and I dozed for a little bit.  I got an email from a friend on Twitter who lives in my building but I’ve never met. He said he was home with his baby girl today doing laundry and would he be ok coming to visit me for a bit? I said sure but I was in pajamas and I wasn’t going to change.

He and I had never met before but he seemed like good people and I said sure, he coul come up with his sweet little baby. I could use a baby to cheer me up (and omg she was gorgeous and smiley)

But the longer he sat there, the weird feeling got worse. He stayed for a half hour, we chatted, and before he left he made an effort to shake my hand.

I was alone for another few minutes and the slow feeling that had begun slammed into me like a brick wall. I was going to die.

I wasn’t suicidal in the least, it was this overwhelming feeling that death was upon me.  There was this terrifying feeling but at the same time this odd calm I’d never felt before.  The only way I could express it was ‘an impending sense of doom’. So, after all this time, I finally knew what it meant. And more so, like there was nothing I could do about it.

Took to the internet and on a whim googled an impending sense of doom and did scanned articles until I found something that made sense.  Anaphylactic Shock. It occurred to me this started shortly after my AM IV.  The only other thing I could think was the suggestion it was anxiety.  But I didn’t feel anxious per se. I remembered my Infectious Disease doctor on her personal cell, left her a message, despite it being a holiday. I’ve never done that, not ever but I was terrified. She called back almost immediately. We discussed things. She called the office and got my lab results and told me I was a little dehydrated but other than that things were fine. And that were I having a true anaphalactic shock I would not have been able to call her.  She asked how I felt, was I anxious or upset by anything? No. We chatted, I apologized profusely for calling her on a holiday.

She did calm me some and told me she felt I was having the ‘mother of all anxiety attacks’ and that its not surprising with what I’ve been through. But still, terror coursed through me. After apologizing again she shared with me a story about a hospital employee, someone everyone loved and got along with and he suddenly a couple months ago committed suicide. She said amongst her colleagues who knew him, all they keep asking is ‘why didn’t he call us? Why didn’t he reach out???’ The doctor told me when something is off physically or mentally it’s a signal we need to quickly check.

I cried and told her there was so much going on with the new PICC line in my chest, the massive drainage, everything. I’m scared. She reiterated it was probably an anxiety attach and not an allergic reaction (I have a looooong history of being allergic to many major classes of antibiotics so I thought there was a chance it was that). She insisted I call her back if anything changed and said I held a special place in her heart because I’d been dealt a rough hand especially at my age.

After we hung up, I laid on the couch. And I breathed. Slow, long breaths.

And then it happened again and I couldn’t stop crying. It felt like my body was slowing down and that if I closed my eyes I would die. On one hand I’d rationalize I’d had a decentish life. And on the other hand I knew that my death would kill my parents, destroy my niece.

Also unlike me, I called my dad – who was going to be over in the next 2 or 3 hours. I called in such a hyper upset stage babbling about dying and I didn’t want to die that we hung up abruptly and I laid on the couch crying, staring at the ceiling until my dad arrived.

He grabbed my hand, listened to me as I sounded like a lunatic trying to explain how I was overcome with the thought I was going to die and at the same time some weird calm.

The rest of the night dad stayed with. He went to get us dinner and I was scared while he was gone. At bedtime he offered to spend the night on the floor at the foot of my bed, but I told him no. It just felt like I needed a witness. If I started to die, someone had to witness my death. All night before bed I’d causally mention things like ‘oh if I die, I want to be buried in this.’ And ‘oh if I die I just wrote a list of people you need to make sure know. Their phone numbers are all in my notepad.  I even had myself convinced my Twitter friend insisted on shaking my hand to remove my soul a la ‘Dead Like Me’.  Yea.

Not like me. At. All. I’m so realistic and level headed this was nothing like I’d ever experienced and it was the most terrifying thing ever.

It got slowly better, even though I wrote my will out hastily on Tuesday when I wasn’t staring at the wall. I had no interest in the phone, texting, facebook, my online games, reading, eating, nothing. I’d have a few moments of solace then suddenly ‘oh shit, I need to make sure my dad knows who the beneficiaries on my financial accounts are.’

WTF?

OK this was long, but it was the beginning of the last week. Part 2…the Wound Surgeon. Coming tomorrow.

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Hideous staples, Multiple surgeons, and Puddles of Goo

There are 5 stages of grief: Denial and isolation, anger, bargaining, depression, and acceptance. Not sure which stage I’m currently in. I seem to vacillate between isolation and depression.  Acceptance, my friends…seems far away.

But before we get there let’s talk about the last month. One word: whirlwind.

Because I could no longer wait on my insurance company to accept my newer surgeon at the wound care center I saw my original surgeon who had opened me up and put the wound vac inside of me way back in May. I was comfortable with him and felt his skillset was appropriate for me since we had history.

I saw him in early October and after a somewhat painful examination we decided on a flap enclosure procedure. He would take out some of the tissue so my thigh and hip would heal naturally it wouldn’t have gaps in the contour of my thigh and hip He said he’d scrape me out as necessary and stitch and staple me to pieces.

I was sent away from the office with the advice that I’d hear from the scheduler once my insurance approved the surgery. The following week I get a call on Thursday saying I’m scheduled for surgery the very next Monday, October 21st. GAH.  Left me no time at all to get anything ready for the following Monday. I had to leave work early that day and go to the hospital so I could get blood work done. It ended up being a mess due to the way the lab is setup after certain time frames but it ended up ok, just took longer than I wanted.

Friday I was a mess trying to get things done, put things on hold, ask some of my colleagues to take care of certain things for me. I realized I don’t run the country so some things would have to go undone for a while and that’s that. Afterall, we were only talking a few weeks.

Saturday I skipped going to my parents’ house so I could do some work but took time out for a brow wax and manicure/pedicure in time for Halloween and in particular the next days pumpkin patch. On Sunday we got to the pumpkin patch, meeting several groups of friends with their kids and I used the old lady rollator with the knowledge I’d sit, I’d walk where I could, I’d do what I could. But at least I’d be there. What got me through the day was knowing that no matter how much pain I was in the next day I’d have as much anesthesia and pain meds to make me forget.

Bright and early the next morning dad showed up. I showered, fixed my hair and dressed then off to Mount Vernon we headed. I signed in and was immediately taken back where all the usual went through, insurance, id information, assorted forms had to be signed and information given. Then a nurse got me and we went through the vitals, a urine test, talked about my wound history, got way more sympathy from this sweet nurse than I deserved.

She couldn’t draw blood, tried twice, and then took me into pre-op and I ran into the Anesthesiologist who I knew could do my blood draw. Well this time as it turned out he was enroute to the OR but stopped and stayed with me to get my blood draw and IV put in.  YAY.

I waited not so patiently for my surgeon (I asked if I could take a picture of his giant hands because I told him no one would believe me that his hands were like giant baseball mitts). He told me he was at about 80-85% confidence of surgical success which was down from 90%. Guess he had time to plan and think things through.  There wasn’t much I could do. This was my chance. Plus he had knowledge of my body and wound.

Finally things began moving along, dad kissed my forehead and I was wheeled into the OR.  I got all worried about having to move to the other table when they promised me they’d move me then the anesthesiologist put a mask over my face, told me to stop talking and inhale deeply.

When I woke in recovery, fiery pain shooting down my leg. I was given meds twice for the pain and then moved up to my room.

This time I wasn’t in a private room. Boo.

I could go into the boring details. My nurse was kind and gracious about getting me settled in. Dad sat near me and made sure my nurse and the staff paid appropriate attention to me.  I hurt a lot but very quickly found out that my wound care surgeon and my hip surgeon had very different ideas of pain management.  Yea. Wow.

Bright and chipper the next morning my nurse removed my catheter. Immediately I had to pee and she assured me I did not. I asked her to let me just walk to the bathroom and try. It was then I discovered I was on bedrest and bedrest meant no trips to the bathroom. It meant bedpans. Yikes.

Soon after she left I dozed off and then heard a mans voice. Turns out it was my hip surgeon, Dr. Fricka. And suddenly I learned what had happened the day before.

During surgery as my surgeon cleaned out and removed tissue and tightened things up, my surgeon while feeling around for my new hip discovered what he described (to my dad) as a ‘puddle of goo’ (when I asked him to elaborate during my follow-up he said it was just best described as good, a mushy goo pocket. Nice, right?). Well he couldn’t feel my new hip and ran into this goo puddle and stopped working to see if my hip surgeon was available. As it turned out, my hip surgeon had just finished surgery so he scrubbed in and helped out. Between the two of them, neither could feel my new hip.

Cultures were taken and I was sewn internally with 3 different layers of stitches and then stapled together externally with 30 staples and set off to bedrest to recover.  As my hip surgeon spoke, I held back tears and tried to ask questions but I was so confused. The idea that I had an infection hadn’t occurred to me. He became incensed when he found out the Infectious Disease doctors office refused to call me back and sent off a message right then from his phone.  I’d only been off the antibiotics 3 maybe 4 weeks tops.

He didn’t know if I was truly infected yet since they had the samples at the lab but he talked about infected implants and more surgery and suddenly I felt very small and everything else started to get very large. It was more than I could bear at that moment. I did feel good knowing he’d had a hand in my surgery but I didn’t feel good with all the unknowns.

I had planned to elaborate on some of the funnier parts of my stay but to be honest today is not a good day for me. I woke up crying and I’m overwhelmed and upset and way too many things to count. Maybe I will relay them later. Those of my Facebook friends know most of the funny stuff that happened.

Here’s where it left off between the two surgeons: I have 2 bacterial infections.  2 of the original ones I had. The goo filled area is way towards the back of where I was being treated, not where I was being treated already…which is why nobody thought there was an issue.  My new hip is infected but they didn’t take drastic measures that would make it impossible to remove or work with in the future. For now though, it is infected. I was sent home with a PICC line (Pixie the Second) and IV antibiotics not once, not twice, but three times a day. It’s insane. I spend all day worried about taking antibiotics. Both surgeons told me in order to keep my hip in I would likely be on oral antibiotics for the rest of my life.

The rest.of.my.life.

If they take it out, I think they can put in a spacer or something but the thing is…with the issues I’ve had here? No one is excited about removing the hip to put in a new one AFTER I’m infection free…and God only knows how long that will take.

Yea I need to stop for now. I’ll write more later. And yea, a small sample of what part of my staples look like. Hideous. Absolutely hideous.

Staples. So sexy.

Staples. So sexy.

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Drugs, Tears, and Fight Club

I don’t know what to say. This has, by far been one of my worst weeks.

Let’s start with pain meds. At my last pain management appointment the doctor wrote the prescription strangely. Normally the patch I used is prescribed in jumps of 25. Well, no one apparently ever prescribes the lowest dose which is 12. I didn’t want to double my prescription so we agreed to go halfsies. He said the only problem was that I’d need to use 2 patches, a 25 and a 12. Ok no problem.

When I dropped the prescription off at the pharmacy I was told it would be a few days before it came in. no biggie, I had 1 patch left which I had to put on that day.  They last for 3 days. That meant I needed them filled by Saturday. Well they weren’t done on Saturday. They weren’t done on Monday they weren’t done by Tuesday.

The pharmacist kindly called yesterday and told me they might be in today and I accidentally started crying because I was upset. All the meds were out of my body and I could feel it.  For anyone who has ever been through that feeling you know there’s nothing like it in the world.

Last Thursday the risers under the couch had a malfunction (namely I’m a moron who bumped into one while vacuuming and knocked the whole thing off balance). So I went to sit on the couch, fell off and fell awkwardly. Doing that I hurt my back and my bad hip even more and my knee.  I had pills to help with the pain but while they work they make me nauseous as can be. It’s like my life is one big cruel joke.

I don’t see the wound clinic until Friday, making it 2 weeks. I can’t really tell much if my hip skin looks much better. I’m too lazy to take a picture. I do know my thigh is starting to get bruised from the tape. When I last left them the idea was to heal up a section that had become irritated by tape so we added 2 gauze pads and that gave my skin healing time. In the process the different areas of my thigh and hip that have been taped are now bruised to hell. Also my doctor told me to start removing the bandage before I shower whereas before I removed the bandages post-shower.  Taking the bandages off after a shower made it easier also. Taking tape off dry skin before I shower makes it a more difficult task.

Anyway the bottom line is the pain from bandage changes is worse. I really do not look forward to it. In fact, I hate it. The tops of my thighs are all bruised and it hurts. I’m trying to remain hopeful that Friday they’ll tell me I’m scheduled for surgery next week and everything will be ok but I’m pretty sure since no one has called me from the hospital yet that the insurance has come through to approve my surgeon. I can already tell that I’m going to be leaving the hospital crying.

I know…I know…stop storytelling myself. I could be wrong. But I know I’m not.

And I’ve had a bad stomach ache for days. I have no idea what is causing it. Gut wrenching pain that wakes me at night and makes me double over in pain several times a day.  I figure I should be worried about it at some point. But I’m not running a fever and I assume it’s not going to kill me.

This has just been a crappy week. Worrying about surgery, worrying about things with the family, my body adjusting to meds, feeling run down, feeling really super alone.  Today I cried all day, I cried while I worked, I cried while I showered, I cried while I tried to eat lunch, I cried while I emptied the dishwasher.  One of my co-workers immed me and asked me to call. I called him and while I had stopped crying when I called, I started crying as soon as we started talking. I can’t imagine how I’m going to look him in the face tomorrow. And I’m certain I’ll cry when I go to bed tonight. If I get through this crying thing tonight so tomorrow I’m normal that would be super fantastic.

Ever see the movie Fight Club? I know…the first rule is not to talk about Fight Club but in the beginning when the main character is going to all the support group meetings and he ends up at one for cancer there’s a woman there who stands up and asks if anyone in the group will have sex with her.  She is terminal and has no time left and all she really wants is to be touched. She says she has sex toys and videos…and then the meeting leader intervenes. It’s so pathetic and desperate and you feel sorry for her.

The reason I bring it up is because for some reason lately that scene plays over and over in my head. I see the womans face despite not having seen the movie in years. I feel the angst she feels, the humiliation she feels as she brings it up hesitantly. I don’t want to have sex; I could have sex. But it’s just the loneliness that comes with being alone for a while and being sick for a while. I have great friends and family but I just feel like I’m going to implode from loneliness. It’s not even like the energy to date so whatever.

I just want this nightmare to be over. Feels like it’s never going to end and I’m going to be alone and in pain with a gaping leaking expensive wound forever.  Oops there start the tears again.

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