A week and two days ...

My hip has been hurting. They have both been hurting, but my right has really been hurting. I cleaned the whole house, and did a lot of walking as Perry and I shopped for a recliner. The pain is good news since I am having surgery in 9 days. If I were feeling great, I might be reconsidering. I said several times over the weekend that I am now convinced beyond the shadow of a doubt that I need this surgery.

Ah yes, a recliner. When we first moved in together Perry got rid of his ugly but comfy recliner. I promised him he could have another one, if we could find one that looked good. That was five years ago and we never bought him one. Now I'm the one who needs it, although it will be his long term, so off we went in search of. We found one at our favorite furniture store, and it's made locally so it will be delivered before I'm home from the hospital, unless by some miracle I'm out in 3 days. Which, we all know, is not likely. So we'll now have comfy seating for me and something Perry will enjoy for a long time.

Tomorrow is my last day at work. I scheduled the week before surgery off to take care of last minute details, but many are taken care of. I do want to use the week to get mentally prepared and to make sure I don't get sick. Oh yeah, and to paint my bathroom.

I thought that would be a good mindless activity to distract me this next week, and it needs to get done since we pulled out cabinets in early May. It is a small bathroom so shouldn't take a long time, and while the task involves standing, I can also sit for part of it. Probably not the best idea I've ever had, but if I can accomplish something in the next week I will feel pretty darn good. It qualifies as upper body exercise ("crutch prep") too.

I may skate this week; I may not. Before I leave for the hospital, I will definitely take my skates to the skate tech to send back to Harlick for some renovations. New tongues, cut down a notch, slightly higher heel, and removal of some stiffness since these are dance boots and not freestyle (I know that I'll never jump again because that's the worst thing I can do to my reconstructed hips). I've wanted to renovate the boots for a long time and it's much more affordable than new boots. Now's the time since I won't be needing them in the foreseeable future. And it does mean that I plan to use them again some day.

Thanks to all who offered to donate blood on my behalf. You all rock! My Mom donated this morning; I was there and it took about 7 minutes for them to get a pint of blood (whereas I was in there for an eternity and they barely got a unit). She was fine; I was grateful; and now the blood part is over until I get it back post-surgery (if needed).

I never thought I'd say this, but I am looking forward to getting this surgery thing over with now.

The Continuing Saga of Vampira

I love my parents. Doesn't everyone?

But no, I really do love my parents. Not only is my mom canceling most of her summer plans to take care of me when Perry's at work after my surgery, she has also volunteered to donate blood on my behalf. She, too, is O positive, and she has FABULOUS veins.

(By the way, I STILL have bruises on both arms (greenish yellow at this point), and still have trouble bending my left arm. The thought of of someone sticking a needle in it again on Monday makes me want to run screaming in the opposite direction. So yes, it really is a trauma for me to give blood -- I'm not making this up.)

Getting this Directed Donation to happen almost took an act of God. My parents, without me knowing, both went to have their blood tested several days ago. My Dad's blood type is still unknown (they "lost" the test results). My Mom is O+, and after a lot of begging her doctor faxed the information to her so I could fax it to the Red Cross. Then I had to ask the surgeon's office to re-fax the orders to the Red Cross. I called, but the only person who knew how to accomplish this seemingly simple task was on vacation. They were not sure when she would be back, but it sounded like it would be too late for me. They told me she was checking e-mail.

I e-mailed. She replied and asked why the ladies in the office couldn't do it. Well, they claim they don't know how, I said. Fine, she said, she'd call and explaiitn to them. I got the feeling she really wasn't going to call, so I called the Red Cross (since they have been SOOOOOO very nice through all of this) to find out what they needed. The woman at the Red Cross was very clear that all the doctor's office had to do was re-fax the original fax (which should be in my chart) after checking the "Directed Donation" box. I called the doctor's office back and explained how to do this. (Wait, am I joking? I had to explain to THEM how to do this??? And I am trusting the doctor who hired these people to cut apart my pelvis and put it back together??????? Am I crazy???? Oh, nevermind.)

I also had to fax the Red Cross proof of my mother's blood type, which I did, and they called her and asked a bunch of questions, which she answered successfully. Monday we are going together to the Red Cross so she can donate blood on my behalf and I can write a check for it, and afterwards I am taking her out to a nice breakfast.

Yeah ... when my parents asked if "there was anything they could do" for me, I'm sure this was not what they had in mind. But it turns out it was the BEST thing they could have done for me. It has decreased my anxiety level substantially. I am almost coming to terms with the fact that I am going to be having major surgery in a week and a half. And miraculously, I am in a much better mood.

I love you Mom and Dad!

uh O

Called the blood bank about my second donation, scheduled for a week from today. My husband and various friends have offered to donate on my behalf since I am still bruised and can’t bend or fully straighten my arm. Add to that the fact that my thumb is immobilized and I can’t squeeze my left hand (and there are no useable veins on my right arm), I’m kind of in a bind.

Turns out they barely got enough extra blood from me to do the tests they normally do. However, they DID get enough to tell me that I’m O positive. That’s the rarest blood type (OF COURSE!) so that none of my friends can donate. Perry is AB positive, for example; no go. I need someone who is either O positive or O negative and who can prove that, meaning they have a donor card. Nobody I know fits those parameters.

So I am going to bite the bullet and continue hydrating at this point … if I can get through the blood donation the surgery should be cake.

Sunday Social Session

I did go to the social dance session today for an hour. I was weak and a little dizzy; not sure if those are the residual effects of losing a pint of blood, the fact that I have a cold, or just that I'm out of shape. I was slow and tentative and couldn't do more than half a pattern of anything without getting out of breath.

It was good to get out there just to see friends since I really couldn't skate. Makes me wonder how it will be coming back after surgery if it's this bad before they've even cut on me. I wonder if I'll be willing to fight very hard to get strength, flexibility, and "easy" skating skills back. On the other hand, I wonder if things I've struggled with for years will become easy overnight once my hips are fully in their sockets and attached to the right part of my pelvis like a normal person.

Not sure what I'll lose and if I'll gain anything or not. I feel like I'm about to take a huge gamble; outcome unknown. But I guess that's really true of everything in life; we never know what each day will bring.

I just won the lottery!

Well, I might as well have. Aetna pre-approved my surgery.

It's actually kind of pathetic that this is something to celebrate. That's right, my insurance company is actually going to PAY for surgery that will allow me to walk without pain again while allowing me to preserve my own hip joint. You would think that would be a no brainer, but I have been worried about it for the past 8 months, because the first thing they told me when I walked into Dr. Mayo's office was, "Insurance is not going to pay for this, and it's going to cost you $300,000."

(That amount was inflated of course, because the hospital gives you a 50% discount when you pay cash. But still. I just don't have that kind of change sitting in my cookie jar.)

I won't really believe it until I get the letter from Aetna; Keri from Dr. Mayo's office e-mailed me with the news today and she said I should expect a letter soon. Meanwhile I will be pondering which house projects to do now that there is actually money to pay for them. I think this means I can finally remodel my kitchen. Bye bye, bright blue kitchen countertops with burn marks! Bye bye, refrigerator sticking out into the middle of the room! Bye bye, ancient microwave whose handle is held on with duct tape! As soon as I recover, you are all OUTTA HERE!

Check Please

Surgery is less than three weeks away now, and I am pretty pleased at how my checklist of “to dos” has progressed:

 First autologous blood donation. Check!
 Short term disability paperwork. Check!
 FMLA paperwork. Check!
 Important items for hospital purchased. Check!
 Raised toilet seat purchased. Check!


Certain items are still outstanding, however:

 Second autologous blood donation (scheduled for June 29th)
 Manage anxiety (hmmmm, not sure this is possible)
 Find out if Aetna is going to pay for this (enough said)
 Lose 5 lbs. (probably not gonna happen)
 Wrap up everything at work (trying …)
 Finish house projects (threshold for bathroom so walker will not hang up, spray nozzle in shower, move recliner from basement to main floor, etc.)
 Have hospital bed and CPM machine delivered
 See hand specialist to resolve pain issues with my left hand so I won’t have problems with crutches (waiting for call back from specialist … and I doubt they are going to get me in before surgery)

The countdown continues ...

Stickin' it to me

"Hard Stick" = Someone who has bad veins, making it difficult to draw blood.

According to Evonne at the Portland Red Cross, I am the hardest stick she has ever met, and she has been taking blood for a looooong time. She was extremely nice, patient, and cognizant of how painful this was for me. PAO will be a piece of cake compared to my two autologous blood donations.

I spent the past week hydrating and peeing, hydrating and peeing. This morning, before my 8:30 appointment, I had a quart of water and a big breakfast, peed 4 times, and arrived with my check in hand to pay approximately $500 (not reimbursable by insurance, BTW) for the privilege of giving two units of blood to myself.

First the good news. My iron was at 14.2, which according to Evonne is “like the men.” Yeehaw. I figured after that good news, this blood donation would go well. Not so fast!

I know I’m a hard stick because I’ve had this problem ever since I can remember. The phlebotomists always kind of look at me sideways when I describe the issues others have had drawing blood from me, and say “well, I’ve been doing this for xx years and I’m sure we won't have any problems." After a 40-minute encounter with my tiny, rubbery, rolling veins, they tend to agree with me.

I tried to relax, but it’s hard to do so when you expect the worst, even in the comfy reclining chair they have. I explained that my left arm has better veins than my right, but because my left hand is in a splint because of thumb tendonitis, it would be hard for me to squeeze anything with that hand. So we tried the right first.

Evonne found a vein, she thought, until she realized no blood was coming out. She said the vein was right next to a “structure” (I assume that might be a bone?) so it was tricky. She tried again, but again the vein moved. No blood. (By the way, for all of you with good veins, you probably don’t know how much it actually hurts when they don’t get the needle into your vein. People think I’m a whining needle-phobe because I have this aversion to getting blood drawn – they have no idea that there is actual PAIN involved. No, not just a pin prick or a sting. It’s real pain.) By now I was sweating and tense.

She got a vein on the left, but barely any blood came out. I had taken off the splint and was pumping as much as I could, but it was hard with a sore hand. The blood trickled out, then stopped, then trickled again. She almost stopped entirely because she said it had been too long since blood had flown and the blood was starting to clot; at that moment a bit more dripped out so she continued. She almost stopped again after repositioning the needle for the tenth time, when I grimaced. “You have a pretty bad hematoma,” she said, “I don’t know if we can get any more.”

I found out while sitting there that if they don’t get a full unit, they throw the blood away because they can’t use a partial unit. At that point I was dripping with sweat, tense, starting to get dizzy and quite sore, but I was not going to let her throw that bag of blood away. I kept pumping and enough blood eventually came out to make a useable unit. I had to pump for 45 minutes almost nonstop. It seemed like an eternity.

I went to work with two colorful (purple and green) bandages, one on each arm. They don't match and of course, neither matches my outfit. Geez.

Next week I am going back to donate the second unit, after the hematoma heals and my blood has time to re-build. I think I’ll need to take valium beforehand because just walking into the place is going to make me start shaking. And, as Evonne told me, I have to relax or the blood won’t flow. I’ve never taken valium in my life and have no idea how it will impact me, although I do have one emergency backup pill someone once gave me in case of dire need. I think I’ve found the right time to use it.

Paula Smart

My hip troubles are really just a minor incovenience in the scheme of things. Paula, a woman I never met but couldn't help but know of, recently passed away after a brief but incurable illness. This loss leaves the adult skating community in shock, as she was one of the true pioneers of adult skating and by all accounts a remarkable woman. My thoughts are with her family.
Terri

The Last

The Last topic I want to talk about here is my weight, but one of the purposes of this blog is to provide information to others on similar journeys. The point is to tell newly-diagnosed hip patients what to expect, and that it’s OK to feel like shit about things that are happening to you. Those are observations that I can contribute to the greater good.

Case in point, my weight. Since I can’t exercise like I used to, despite cutting back on calories, I have gained a whopping 10 pounds. On me, at 5’4” with a medium/small frame, this is a lot of lbs. My blood pressure and resting pulse have gone from those of an active, fit person to those of a couch potato in just 9 months. I am sure that my cholesterol levels and blood sugar have followed suit. I am just not healthy right now. For me, it feels like a personal failure.

I am also whiny because I feel bloated, don’t like how I look, and don’t like how my clothes fit (or, more to the point, don’t fit). I have gained weight in places that I have never had weight before, like my mid-section. Oh, I can’t stand it.

I tried dieting, but without exercise my body just thinks I’m starving it and lowers my metabolism to compensate. The scale doesn’t budge. This is what happens to athletes, I am told. I don’t think it’s healthy to diet, plus it isn't working, so I've decided to eat normally, albeit healthily, and plan to take the weight off when I can really exercise again, in a year or so. I am likely to gain some more in the coming months because my ass will be firmly parked on the couch. Woe to the unlucky visitor who stops by my house with cookies! Hint to everyone: BRING CARROTS if you want me to open the door.

I am still very strong, as evidenced by what I can do on the weight machine. I know there are muscles under there, hidden under those fat cells; muscles which are going to help me recover. I just can’t seem to get rid of the fat. 30 – 40 minutes on the elliptical at the level I can handle without pain (which is not very strenuous) just doesn’t compare to the 90 minutes of hard skating I used to do most days. I know that I could up the elliptical workout time but it is so mind-numbingly BORING that I just can’t bring myself to do more than I am already doing. Ditto the swimming. No can do.

That’s about as much I can stand to write about my weight issues. So, moving on …

I am right now in Virginia to judge The Last Competition B.S. (“Before Surgery”). As other hip chicks have noted, as you count down to surgery you tend to notice “The Lasts.” This is one such Last, but I know I’ll judge again on the other side.

Last week I spent quality time with my stepdaughter Ashley, visiting from college. I walked a lot, and even walked on the beach. I’m calling it “The Last” fun vacation B.S. although I know there will be many more vacations on the other side.

My stepson Aaron graduated from High School on Tuesday, preceded by a nice family dinner. I’m calling that “The Last” big family event B.S. There will be plenty more of those on the other side.

I introduced the person who will be taking my place on my biggest project at work to the project team this past week. I’m calling it “The Last” political issue I have to deal with at work B.S. For sure, there will be a whole lotta those on the other side!

As for The Last Skate … well, that happened about a month ago. I still have my skates in the car, and every single day I ponder going over for One Last Skate. A part of me really wants to, but I can’t quite do it. I always find some excuse.

The Last time I went was a pretty good hip day with very little pain. I was able to do some of the things I used to do (the Austrian Waltz twizzles, the Rhumba Choctaw and a hydroblade, for my skating friends), and I really enjoyed expressing the music on my Ipod that day. The sun was shining through the windows in the rink. I felt good. I felt happy. Somebody asked me if I skated in an ice show and it made my day.

Since then my hips have degenerated noticeably. I don’t know if I’ll skate again at my prior level on the other side. I know I can’t possibly do so now. So I really don’t want to mess with my happy memory of The Last Skate by going to the rink right now.

I do miss all you guys though.

Staying The Course

(Thanks to LS)
Staying The Course
by BJ Gallagher

Our journey of life is about progress,
not perfection.
It's not about doing one thing
100% better -
it's a matter of doing 100 things,
1% better each day.
Progress is evolutionary
not revolutionary,
and most days we measure our progress
in inches,
not miles.
What matters most
is showing up for your life
whether you feel like it
or not.
Ask yourself,
"What two or three little things
can I do today
that would move me forward?"
You'll be amazed
at how much distance
you can cover
by taking it in increments.
The little things add up;
the inches turn to miles;
and we string together our efforts
like so many pearls.
Before long,
look what you have -
a whole strand!
Ah... beautiful.

Intestinal Fortitude

So you take the iron supplement with vitamin C because it is better absorbed in an acidic environment. You don't take your calcium with your iron though, or the iron blocks absorption of the calcium. If you take iron on an empty stomach you might get a stomach ache, but if you take it with food you might not absorb the nutrients in your food correctly. The NSAID prescribed for my swollen hand (auto accident) should also be taken with food, but should not be taken with the iron. OK, I am now not sure what to eat when and what pill to take with what.

Juggling meds is not something I am used to, because meds and I don't normally run in the same circles. I am supposed to bring a "full list of all prescriptions" to my pre-op appointment. A week ago that list would have been a whole lotta nothing, but now it's filling up fast.

The iron is prescribed to build up my blood for the autologous blood donations (two units, two donations) I am so looking forward to. I have rubbery hide-and-go-seek veins that know how to retreat deep into my arms beyone reach of needles at just the right time. The digging around for a vein has been so painful in the past that I have actually passed out. Oh yeah, I had better get used to it because they are going to be sticking me all over in the hospital as well, and after I'm out of the hospital in order to monitor the blood thinners. Did I mention the blood thinners? The ones I will be injecting myself with IN MY OWN STOMACH for ten days???!!!

I think it might be more than just the iron supplements that are making me nauseous.

Trust

I received my "pre-surgery packet" from Dr. Mayo's office. That's M-A-Y-O. However, the letter from his office referred to him as "Dr. MAY." Hmmmmm.

This packet was supposed to contain all of the information I might need to make plans and prepare.

It told me that I need to report for surgery at 5:30 AM on July 8th. The letter also states that I must be at the hospital "no later than 8:00 AM." Hmmmmm.

Females on birth control pills must stop taking them two months before surgery, per this letter, which I received 4.5 weeks before my surgery. I am not taking birth control pills, but if I were, I would not be happy with the timing of this information. Hmmmmmm.

The letter doesn't mention that I am not to take NSAIDs the week before surgery; I only know that because I asked specifically. What if I hadn't? HELLO, I have a condition which causes a lot of pain here; they must guess I am taking pain killers, as are most of their patients. But no mention of this very important little piece of information.

The fact that I think the office staff is ... um, useless, disorganized, rude and ... um ... well, stupid ... is confirmed. Other information in the letter was equally confusing or poorly worded. So evidently they WANT to get follow-up phone calls from confused patients, instead of re-writing the letter to make it actually useful and informative. I intend to waste their time with a phone call later today in order to get all of the now-lingering questions answered. I can't imagine I'll be the first to do so.

I do trust Dr. Mayo. But I'm starting to wonder about his judgment in choosing office staff. I just hope he has more attention to detail than they do, or I fear I'll end up with my left elbow attached to my right buttock when surgery is over, or something equally horrible. Yikes, my apprehension level has just gone up another notch.

Put one foot in front of the other ...

Walking is so basic. It seems so easy. It's great exercise. It's good for you. Almost anyone can do it!

My stepdaughter Ashley is here visiting from Colorado, on break from college. Yesterday my mother and I showed her some of the highlights of Portland - the Rose Garden, the Japanese Garden, and shopping on NW 23rd. I walked A LOT, more than I have since diagnosis, and didn't really make any accommodations except taking the shuttle up the hill to the Japanese Garden. Today I feel like somebody stood on my pelvis and took a baseball bat to my back, hips, and legs.

My 70-year-old mother accompanied us and wasn't even tired at the end of the day, while I was firmly planted on a chair complaining of how sore my legs were. That's right, me, the athlete.

We are supposed to be going downtown tomorrow and to the beach the following day, both walking-intensive activities. The wheelchair idea is sounding better and better. Wheelchair on sand at the beach? Probably not going to happen. I just need to get through this week and then it's only 4 more weeks until surgery. I can spend the weekend recovering from all of this walking.

I am now 100% convinced that I do need this surgery.