brca bullshit

Reflex Sympathetic Dystrophy (RSD)

At my appointment at the psychiatrist’s office, just before I’m ready to leave (my prescriptions clutched tightly in my fist), she stopped me.

“You describe your pain as burning pain, correct” asked Dr. M

“I feel like a fucking Phoenix.” I replied

Dr. M: “But burning, right? Any skin sensitivity or numbness?”

Me: “Yes and yes.”

Dr. M: “Excessive sweating?”

Me: Embarrassed, but I answer “Yes.”

Dr. M: “Hmmm…” (at this point I sat back down and watched her do what I knew was probably a google search). “RSD… why do I remember that? Who did I know who had that? Hmmm….”

Me: Is this something to do with my pain?

Dr. M: Proudly producing a printed out fact sheet, she proclaimed “RSD!” and rushed over to hand it to me in her funky studded heeled booties.

Reflex Sympathetic Dystrophy (RSD) Syndrome

Also known as Complex Regional Pain Syndrome (CRPS)

RSD is an older term used to describe one form of Complex Regional Pain Syndrome (CRPS). Both RSD and CRPS are nerve disorders characterized by chronic severe burning pain, pathological changes in bone and skin, excessive sweating, tissue swelling and extreme sensitivity to touch. RSD is sometimes called Type I CRPS, which is triggered by tissue injury where there is no underlying nerve injury, while Type II CRPS refers to cases where a high-velocity impact (such as a bullet wound) occurred at the site and is clearly associated with nerve injury. Type II used to be called “causalgia” and was first documented over 100 years ago by doctors concerned about the pain that Civil War veterans suffered even after their wounds had healed. RSD is unique in that it affects the nerves, skin, muscles, blood vessels and bones at the same time.

Symptoms

Continuous, intense pain that is out of proportion to the severity of the injury (if an injury occurred) and which gets worse rather than better over time. It most often affects the arms, legs, hands or feet and is accompanied by:

  • “burning” pain
  • increased skin sensitivity
  • changes in skin temperature: warmer or cooler compared to the opposite extremity
  • changes in skin color: often blotchy, purple, pale or red
  • changes in skin texture: shiny and thin, sometimes excessively sweaty
  • changes in nail and hair growth patterns
  • swelling and stiffness in affected joint
  • motor disability, with decreased ability to move affected body part

How is RSD Caused?

RSD has no apparent cause. Initially, the condition was thought to be a malfunctioning of the sympathetic nervous system but researchers are questioning this theory. Since it is most often caused by trauma to the extremities, some conditions that can bring RSD about are sprains, fractures, surgery, damage to blood vessels or nerves and certain brain injuries.

How is RSD treated?

Physical therapy is a primary component of treatment. There also are several types of medications that can be used and sometimes elevating the affected extremity may be helpful. There also are surgical procedures that are used in some cases. Treatment needs to be individualized and treatment plans often incorporate several of these measures. Treatment if begun early, ideally within the first three months after symptoms begin, can result in remission. Early diagnosis is the key.

Is there a cure?

Not at this time, but research continues. Advances have resulted in some new and effective treatments.

(Source: http://www.health.ny.gov/diseases/chronic/reflex_sympathetic/)

Ominous, right?

While I don’t have *all* the symptoms, and the burning is more down my side and across the chest (instead of in the extremity), I do have *a lot* of the symptoms.

Plan: Find a doctor who knows what the hell this is and how to diagnose it!
brca bullshit

Who has two thumbs and ain’t gettin’ any doctor love?

One guess.

My appointment with the plastic surgeon has now been cancelled FOUR times. I understand he’s a great surgeon. I understand that I’m not an emergency (to anyone, really), and I understand that his assistant doesn’t have any control over what happens in the operating room… but still. Fuck this.

My Mom took off work to take me! Ugh! Anyway, we’re going to try next Monday at 9:30am – last chance. If that gets cancelled, then I’m done. I don’t really care that much about left anyway… unless it will fix this awful pain.

Also, the court case that I was hoping to be postponed is on like donkey kong – in one week, I will have to stare down my mortal enemy and tell people what he did to me and my coworkers. Grrr.

I have an appointment with my Psychiatrist tonight … I’m pretty sure she’s going to sense the mental breakdown coming on: holidays + pain + no money + not spending Christmas with my family or singing at mass = a giant, awful mess in my head.

This is how I feel right now:

brca bullshit

NYC Long Weekend

Because J’s twin brother K moved to New York City a few months ago, we took advantage of his offer to come play and spent a long weekend with him in Brooklyn. We had a good time, and other than the ice-pack-booby effect, the cold wasn’t even challenging (although we walked SO much that my legs are throbbing…but it felt good!). This was the first time where I made a decision not to let pain stop me, and stuck to it. That felt like an accomplishment.

We got there in the afternoon, but it felt like night time because we had been traveling all morning(DC2NY all the way –this bus was cheaper than the train and very comfortable despite the lack of leg room) and it gets dark so damn early! We ventured out to Sunset Park, where we were treated to a magical view of the skyline at sunset:
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J and I had a few squabbles, so it wasn’t the perfect trip it could have been, but it’s mostly my fault, so I’ve got things to work on. Because we had no real plans, he and K basically took me on a gluten-free tour of NY. My favorite place was Risottoria — almost everything was gluten-free, and they had TIRAMISU and TRES LECHES CAKE!
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We also went to the “Top of the Rock” at Rockefeller Center and got an amazing view of the city.

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brca bullshit · pain management

MRI Results…and getting dumped (by my doctor)

My Mom went with me to my MRI so that J could play softball (his only outlet, and dude time – I’d never ask him to miss it, even though he offered). My Mom is amazing, in case I haven’t mentioned it…she (and J, of course) is the reason I haven’t given up on myself or my journey to health. After driving from Baltimore and sitting through my long MRIs, she then took J and I to the Chipotle and wouldn’t even let us pay. She’s the best, seriously.

The MRI itself was miserable-over an hour in a dark metal tube-but they didn’t want contrast, and the tech was remarkably sweet for 4pm on a Sunday, so it wasn’t an entirely negative experience. I was praying that they’d see something – that they’d find the answer in these MRIs I had requested so long ago. Sigh.

I was patient, and waited until Tuesday morning to call (and then again a few more times for good measure) and some random nurse (not even the PA with whom I’ve been working!) calls me to tell me that they didn’t find anything. No one ever finds anything. I asked if there were any other ideas, or if I could consult with anyone else, and the nurse basically said that there wasn’t anything else She could do for me…

I got dumped by my pain doctor.

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brca bullshit

Are all doctors deaf?

I have about 4 drafts that I haven’t posted, so bear with me as I probably will back-date a few of them in the coming days, but I had to post about this because it’s like the idiocy has come full circle:

Directly after my surgery (almost EIGHT months ago, I might add), I began seeing Dr. C for pain management. In our first visit, I asked if he could refer me for an MRI, to which he responded “nah, you don’t need an MRI”. After months of costly medications, physical therapy, trigger point injections, chiropractor visits, and even dietary restrictions… I go to him in what I would consider excruciating pain (comparable to month 3) and he acts confused as to what’s going on. I tell him my symptoms came back out of nowhere and we discuss options and now what am I getting on Sunday? An MRI. 

It’s frustrating for two reasons: 1) This might have saved seven and a half months of agony, had he just humored me in the first place (even if it doesn’t end up showing anything) and 2) He has my pain symptoms – the SAME pain symptoms I’ve had since the drains were pulled – listed as “new symptoms”. I just want to scream when I look at these orders, because nothing has changed, nothing has helped, and damn it, I am TIRED. I am SORE. My brain is in a FOG (which isn’t helping at work right now!)… throwing more medication at me is no longer the answer. I just want to curl up and die every day when I get home – that is NOT acceptable any longer.

What do I want for my 30th birthday which is just a little over 2 months away? I want this either solved, or I want these puppies OUT. Whatever it takes – I want my life back.

Next update (that’s not back-dated) scheduled for after I hear about my MRI results (unless something juicy happens in the meantime). Dr C’s got some ‘splainin’ to do.

brca bullshit · pain management

Cymbalta

I have a sinus infection. My PCP felt sure enough about it that he put me on a 2week course of antibiotics, although I suspect he did it just to shut me up.

In the course of our conversation, we talked about my pain and the difficulties I’m having and he recommended Cymbalta. I was hesitant, because after getting off of Pristiq, I didn’t want to go on another SSRI that would make me feel like dying if I missed a dose. Also it’s hella expensive…as all good drugs are.
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Eventually, after weighing the pros and cons of it, I decided to take it, because I would do ANYTHING to feel better…no matter how strong a withdrawal it might risk. I asked him how much it would cost, and he told me not to worry, then handed me a grocery bag full of samples – at least 3 mos worth! I felt very lucky, because even though I had to walk almost a half a mile home from the office, it was nice to know that at least one doctor understood my situation and was doing what he could to ease the financial burden. I wish all doctors were like him…

Here goes nothing!

Uncategorized

The “other” Cancer

When I was little, we used to drive the 9 hours to Bluefield, WV to see my Great-Grandmother in her little log cabin built into the side of the mountain. A lot of those years, I remember my Great Uncle Johnny and his wife Sally coming along to spend time with us – especially at the family reunion.

Aunt Sally was small and slender (like my Grandmother) and she always had a long cigarette dangling from her fingers (when we were outside). That is actually one of the things I remember about her best: she would look at me watching her smoke and say “this is for grownups”.

Aunt Sally passed away on Monday from lung cancer… I never knew she was sick, but I could hardly act surprised, because all of my memories with her are with a cigarette in her dainty hands. This makes me absolutely crazy, because I just can’t stand the thought of J having to suffer like that, but when he says “I have to quit when I’m ready”, I can hardly argue.

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J smokes 3-4 a day–nothing like Aunt Sally’s chain smoking–and yet I am filled with worry every time I see him pick up that lighter. How can I make this a supportive environment in which he can feel safe quitting without pushing too hard?

Uncategorized

My Orioles

I grew up in the heyday of the Orioles. Shortly after I was born, they won the World Series, and their lineup boasted some of the best baseball players ever to play the game.
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I grew up with the glory of Eddie Murray – in fact, one of my first words was Ed-die! I wore my Oriole jacket over my easter dress on several occasions, and lord help you of you tried to take my hat off my head.

I grew up listening to WBAL instead of pop music, and in order for me to sleep in the winter, I had to listen to a pre-recorded game from the previous season…over and over and over again.

I grew up basking in the glory of Cal Ripken. I had the pleasure of being a fan during some of his most productive years, and the sheer joy to see him break a record (that will likely never be broken again) the night the Orioles unrolled the numbers “2131” on the warehouse and the roar of the crowd left me deaf for hours afterward. I don’t really remember much of the game, but I do remember him – his humility, gratefulness and the amazing patience oozing out of him as he took the time to sign autographs, shake hands and make his special day about us. I may have shed a tear or two. I know my Dad did.

These, and many other wonderful baseball experiences, were how I got what other people call “the baseball bug”. I love stats, I love pitching duels and small-ball games. When my Dad taught me to keep score at a very young age, I honed that skill as often as possible, eventually proving myself worthy of managing my high school baseball team. You can hear me yelling right alongside my Dad often, encouraging players to hit “just a little bingle baby!” and “hit it in the cheap seats!” (not that they’re cheap anymore!) if the mood strikes us right. We occasionally get that *feeling* that a player is “due” and have called more homeruns than I’d care to admit. To this day, my favorite game was on May 17, 1996. My Dad got box seats, and it was just the two of us. We were down by 3 runs in the bottom of the ninth against the Seattle Mariners (who still had Ken Griffey Jr.!) when I jokingly called a Chris Hoiles “ultimate” grand slam as he ran the count up to 3-2. He ended up hitting the most beautiful shot to the left field bleachers, and is the only player ever to do that in major league history (23 other players have hit “ultimate” grand slams – where the bases are loaded in the bottom of the 9th and you’re down by three runs … a walk-off grand-slam, if you will).

Now, as I get older, my baseball focus, especially in score keeping has holes, and I finally left a game early for the first time this year, much to my dismay, but the seats were just so damn uncomfortable after my surgery, and I get tired so easily. I still remain a dedicated fan, thought, watching games at home and listening to them on a snowy DC affiliate of WBAL. I believe in Orioles magic… even when they break my heart year after year.
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This season, though, something about the Orioles’ perseverance despite constant criticism and that drive that they had to become a cohesive team, it affected me as I continued to struggle “up hill”. Getting home in time to watch the Orioles play because a shining silver lining to my 29th year – a year otherwise full of pain, the sacrifice of my family and friends, and the growing love I have for my “cohabitant” (he’s filling out his clearance forms for his TC…).

“My Orioles,” I used to call them: when everyone else was giving up, going to the ballpark was (and still is) one of my favorite things to do to sooth my nerves. I am that annoying fan whistling and cheering and painting my face. One time I was so frazzled I skipped out on a test in college to go to the Orioles game. There with my scorebook and my Orioles hat, wouldn’t you know it, but it was the first time I’ve ever been on TV. I’m just thankful my professor was administering the test and not watching the game!

Baseball is like ballet – it is an art that can never be perfect. You can study the pitchers, but you’ll never know what they’ll throw. You can run 6-4-3 double play drills, but you don’t know when the second baseman is going to trip, or his throw will be wild. For a kid with severe attention issues, baseball was (and still is) my coping mechanism. It was something I ate, slept and breathed when I was a child, and it is something that feeds my enthusiasm, my positive outlook and, sadly, often my fatalistic attitude.

Don’t get me wrong, this isn’t the first time I’ve been down this road. I’ve felt the playoff magic one other time, when, under Davey Johnson’s watchful eye, the fellas headed for the playoffs in 1997. I was 14 years old, but I remember being IRATE when Angelos fired Johnson after losing in a playoff series, and so my Dad took us out of school one day so we could “Picket” on Eutaw Street. I even drew Davey Johnson’s face on a giant piece of poster board (I wish I had kept it, since now he’s gone and coached the NL’s last-place team to a division title in one season!). It eased a little of the pain, but it’s been a rough going for the last 6 years watching team after team falter.
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While sometimes it irks me that these fans come out of the woodworks when the team is  winning, I’m happy that Camden Yards is once again full of cheering O’s fans, and not every-other-team-on-the-east-coast fans. I, however, will always be a true Orioles fan – win or lose – because it’s part of who I am. I mean, I yell “O” during the national anthem – even when I’m not at the ballpark! I just bought new orange-and-black glasses for goodness sakes!
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The deeper thing is, though, that they are now a part of me in a way that has become glue – filling in my holes and helping me stay together. I don’t know what I will do when baseball season is over, but I know they did for me: exactly what I wanted them to do. I desperately wanted them to surprise people, and end the season over .500. They have done both of those things, so I will be proud of whatever the outcome-tonight, tomorrow (if necessary) and Friday if they play in the wildcard duel to the death (even if I have to watch the game at work!).

I am PROUD, so proud of MY Orioles. I stuck with you for better or worse, and you showed me how to struggle in an uphill battle and come out on top. Thank you for that – your part in my healing process is a big one, so I will continue to hold you (and Vicodin) in my heart forever for the strength you’ve taught me – just like a TRUE fan always should.

brca bullshit

New doctor, new style, new outcome?

I saw Dr W on a whim. They could fit me in today and I would have what they called an “initial consult”. I had always been afraid of Chiropractors, but they were covered under my insurance, and at this point, I’ll pretty much try anything to relieve the pain without painkillers.

After I started seeing him, I felt positive, but not any better. The massage portion was necessary (albeit excruciating), but laying on my stomach for that long was very painful and put a lot of pressure on my already frazzled nerves.

I stuck with it until last week – despite having to run to the bus, take time off of work, *rent a car* one day… But last week my pain skyrocketed again after a particularly rigorous massage involving my jaw. Pain in my boobs is one thing, but pain in my jaw is absolutely NOT bearable.

It is at this point that I have said goodbye to the chiropractor, and once again reached out to my pain doctor for help. His PA wants me to come in for “medication re-evaluation” and more trigger point shots, but where it hurts is where they’re fearful of injecting because of the implants. Again, I feel sad that I had reconstruction at all.

Nothing new except my wonderful boyfriend’s extremely stressful job…now neither of us have the energy to cook/clean/do laundry/etc. We have become a pile of lazy, whiny mush…

brca bullshit

The ass-kicking the ocean gave me.

My wonderful Aunt and Uncle lent us their beach house for the weekend, and we decided to invite my cousin and her husband (who got J the interview for the new job he just got!) and my parents.

Now, let me remind you that I am a pale Irish lass and am not terribly fond of the sun (it gives you things like cancer and whatnot…), so J and I only planned one beach day, and weren’t even sure we were going to wear our suits. Still, the waves were rough and heavy just like I love them, and the dolphins were everywhere showing off with their flips and turns, so after making a rather expensive run to Sunsations, we decided to go play in the ocean.

Facts you need to know about me: I am an extremely strong swimmer. I swam in the same division as Michael Phelps as a kid (even if he was/is the biggest douchebag alive) and I even swam club team in college until the pool closed on campus. I was a lifeguard, for goodness sakes!

So, when I saw the need to dive under a particularly menacing wave, I instinctually threw my hands up and sprang forward… but my body didn’t work the way it was supposed to. I couldn’t propel myself with my arms because I had lost all strength and my pectoral muscles were screaming as I tried to tread water. Eventually, I was able to stand up, but a current that normally wouldn’t concern me felt like it was dragging me back to that swirly darkness, so I zig-zagged out of the water as quickly as I could, and, panting, told my family there would be no ocean for me anymore.

I couldn’t believe it: first the tits, then the running and now my ability to swim?! To flip in and out of the waves like a high-powered mermaid? My ability to swim is probably the athletic talent I’m most proud of, so I am particularly sad that my body is unable to do it at this time. Still, we have to hope for the best, right?

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brca bullshit

Now I just can’t appreciate the mustache joke anymore…

I often walk by two wig shops every day at lunchtime in Old Town. In one of the shop windows, there’s a male mannequin with a wig on his head and a Ron-Burgundy-esque mustache on his face.
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I used to laugh with everyone else as we’d joke about how “no one would ever wear a wig like that” or “how ridiculous would that look on someone?”

A few days ago, though, out of the blue, something just gutted me when I walked past and heard a group of young women laughing and pointing at the wigs in the window. It was like I suddenly had a borderline-PTSD flashback to December, when everyone thought that I was going to have to go through chemo.

I remember walking past a wig one day during those uncertain weeks and feeling sad but resolute that if my precious hair (and I do mean precious – I’m not too vain normally, but nearly everyone envies my thick, fine, soft hair) had to go, then I was going to be rocking the neon pink wig I still see in the window everyday.

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I even remember how my head itched that day when I thought about covering it with fake hair, and I found myself wondering all of a sudden why they were so funny to people. I just suddenly lost the humor in the situation as I saw my grandmothers wig and my Aunt’s wigs and my cousins’ wigs flashing through my memory – wigs were never funny in my family; they were a coping mechanism, a way for us to survive.

I still see the mustached head almost every day, but since that moment of remembering a few days ago, I have been thinking about the “Mr. White” character in “Breaking Bad” (GREAT show, btw), who started with full facial hair and when his family forced him to go through chemo he shaved his whole head and face…maybe someone like him would like that mustache?
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Perhaps to have just a tiny piece of his dignity as he suffers the inhumane suffering and pain demanded by this stupid disease? Really, he’s too badass for any wig or fake mustache, but he was the only example I could think of…

I’m sorry for laughing at you before, wigs. I pretended you weren’t a valuable part of people to me then. I allowed myself to ignore how important dignity and grace are when you are forced to undergo such a terrible ordeal. Honestly, I think I just wanted to ignore the fact that you were almost a part of me.

brca bullshit

Holding a fat baby & carrying a laundry basket – all in one weekend!

I don’t think things are getting *better*, per se, but I think I’m getting much more used to how things are. It helps a lot to have J around every day to help, even if he’s been pretty exhausted and sore himself these last few days.

New coping mechanisms:

  • If I keep moving, often times I can force myself past the fatigue – but God help me if I sit down!
  • If I take my adderrall later in the morning at work, then I am often able to sustain my brain and most times find myself working until the bitter end.
  • I can drag heavy things if I get down low and push them, then sit down on a step and pull them into my lap… thus, the laundry baskets.

Still, though, the sharp pains and lumps and bumps and stitches remind me that things are not really much better … and since next Tuesday is the 5-month anniversary of this stupid surgery, I feel a little depressed that I don’t have an answer by now. My pain doc ordered a chest x-ray, and I’ve kind of been putting it off, because it likely won’t show anything (I know my mother is secretly hoping that they left a pair of scissors in there or something), since x-rays can’t pick up nerve damage or other possible causes of this frequent pain. I’m really trying to hang in there, I really am, but some days are very, very hard.

Now, on to the fat (by fat, I mean heavy, healthy and beautiful!) baby!:

It felt so good to be the baby hog again!


I also had the pleasure of snuggling with his older brother–going to be a heartbreaker, eh ladies?

All-in-all, it was a crazy weekend full of moving/cleaning stuff, potato chips & french onion dip, hogging babies, doing laundry and even some Dogfishead gluten-free beer! Woo!

Occasionally, it is the better strategy to smile and go along with the tide rather than fight the current.

Uncategorized

Chicago Milestone

 My J and I on the plane. While flying, I had to wear crazy-ass compression hosiery on my legs, and these silly sock-like homemade lymphodema sleeves on my arms… just in case. I hate that there’s so much “just in case” in my life, but what am I going to do?

 

Some of my favorite shots from the weekend… lots of fun, lots of laughing, and my first major (well, to me) milestone post-surgery: I got to hold J’s niece B. That was my favorite part of all:

I realized that if someone hands me something heavier, then I can hold it – I just can’t dead-lift from the ground. She was happy to climb into my lap and I was happy to have her… it’s hard to leave such a sweet, supportive, loving group of smiling faces — with any luck, one day, they will be my family too.

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Four Months In and All I Get is This Lousy Morphine?

J and I are heading to Chicago this weekend for his Grandmother’s 90th birthday. I have never been more excited for a “vacation” because:

  1. I’ve never been to Chicago before.
  2. I get to meet the rest of his family.
  3. I have two days off of work that are non-boobie-related.
  4. I can pretend, for a minute, that I live a normal life.

Before we go, though, I wanted to see my pain doctors, and they just couldn’t seem to squeeze me in… BUT, after much fussing, complaining, and some very annoying emails, they squeezed me in for a medicine consultation, trigger point shots, and she filled out my handicap parking permit (small victories). I really don’t want to switch to an all-morphine pain killer because they have made me sick in the past, but I guess I don’t really have many options left: I either take Vicodin to remove the sharp edges and nothing more, or I branch out and try what they’re suggesting (morphine, celebrex and a topical pain reliever that sounds interesting…). Whatever will help me get through the trip without the family knowing that I’m ill/fawning over me because of it will do!

Still… 4 months, and morphine’s all they’ve got?

brca bullshit

And there goes the wrench…

Dr. B thinks my reconstruction looks “great” and sees nothing wrong with it other than the left implant bottoming out. This makes no sense compared to Dr. F’s assessment, but there we have it. It’s what I wanted to hear… but it doesn’t explain anything about the pain. He wasn’t warm and fuzzy, and there was something about him that I just didn’t love, but he was professional and he explained a lot about why I *could* be in pain… but not this much pain.

Once again, he was surprised by my stitches, which are multiplying every week and said, like every other doctor, “those should have dissolved by now”. Uh, gee, thanks. I figured that out. He ordered blood tests and promised an MRI if anything looked strange, which was more reassuring to my Mom than to me, but there you have it. I have a new plastic surgeon, I guess. At least he’s “in network”, right?

I should be happier that everyone disagrees with Dr. F, but really, I just want an end to the pain. Truly, if a surgery would do that, I think that unlike last week, I’d take it over this uselessness. “Can you carry this for me?”, “Can you open this for me?”, “Can you reach that for me?”, “Can you help me with this?”, “Can you do me a favor?” I’m so tired of being a trainwreck. A burden. A pain in the ass.

To add insult to injury, I faxed the application for a temporary handicap parking permit because I got ticket number 4 last week, because parallel parking is so painful, and mostly because my Mom suggested it, so I sent it to my pain doc. No response. Sigh.

So, I tried to make an appointment with him, but I can’t get one with his P.A. until 7/30 and I’ll be in Chicago, so I had to settle for 8/1. Can’t anyone work with me? Let’s go, people, pain is PAIN. I’m also noticing some slight edema on my legs and some autoimmune symptoms that I didn’t have before. Mental? Physical? Infection? Who knows? All I know is that it’s getting worse and it’s making it difficult to do my job (and hold a pen/use my dominant hand/open doors/etc). This has got to end, and it doesn’t seem that any amount of valium or vicodin is enough…