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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About limpalongwithme

Quasi geek, social butterfly, information sponge, lover of spas and I spend my days dealing with major chronic back and hip pain. Recently diagnosed with dysplastic hips as a grown woman and I need a place to talk about it as I try to move forward.
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2 Responses to I thought I needed to blog today, turns out I just needed to whine into the blogosphere

  1. Cindy says:

    You ARE unbelievably strong. BUT….let’s try a different way……. If you prayed for strength (a lot do) well, God gave you situations to prove your strength. Enough…pray this…”ENOUGH is enough, I pray for health, happiness and some damn good doctors”. Pam, you are witty, intelligent, talented and beautiful. From 2,000(+) miles away you have touched my heart. I will also being praying for you (the doctors & nurses) and have all the prayer chains working. I believe in angels, they have been there for me many times. I’m going to mark my calendar, somehow we are going to meet during your recovery….. I promise.

  2. matt pritt says:

    Not sure you are whining, it would seem simply like you need a lot of questions answered and either haven’t asked them yet or the answers you are given are rather vague. Maybe I missed something along the way, but when all is said and done, what would be the best possible outcome from everything, what is the ultimate goal here? I would think there would be something you are working towards, rather than just getting through each day. and that is the part either you have addressed and I have missed, you haven’t addressed yet or your doctors haven’t told you.

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