6 month checkup

So we went to New York for the 6 month follow up. Exhausting as anything is. We flew JetBlue to JFK. Direct flight was nice. Enterprise Rent-a-Car not having a hand control vehicle was not. The Enterprise trauma was long and boring, I'll limit the retelling to the fact that it took them 4 cars over 3 days to sort things out properly.

Had a new MRI at MDI on the 3rd and then saw the new neuro @ TCI on Friday and saw Dr. Bolognese. Got to see Lisa & Theresa and a few other people and talked on the phone to Denise when she called Dr. B during my appointment. Everyone is really happy about my progress.

The general attitude is that I hit the lottery as far as results go. Best possible and then some. I am trying to just celebrate that. I am happy about it really. Can't help but be frustrated about the continuing symptoms tho.

But back to the appointment. I'm going to have a few more tests and there are some things still going on, but they are really happy with how the surgery went and how I have healed up from it. My neck is still in spasm and they're having me up the Flexeril, which the pain clinic took me off. Pituitary gland hasn't gone back to normal shape, but won't worry about that for another 6 months. At that point if I'm still having headaches and nausea we'll do another CSF compliance test and take steps if necessary. They want me to continue following the Infectious Disease path, seeing if it is the cause of some of my symptoms.

Their initial presentation of the connection of EDS (Ehlers-Danlos Syndrome) and Chiari Malformation is available on the TCI site now.

I got to meet Eliza finally, which was cool. We went to dinner in the lower east side and got to catch up a bit in person. It was really fab to get to meet her!

Our docs are in heavy rotation on the Discovery Health Channel's 'Mystery Diagnosis' talking about Chiari Malformations, Ehlers-Danlos Syndrome and the like.

Good grief...

I can't seem to keep on top of myself. I've been so headachey and nauseated the whole past week. I've managed to basically eat some rice or applesauce or vegetable broth every day and drink some tea. Then today I wake up and I feel fine. I started sleeping with a soft collar on. I don't know if that is helping, but it seems to. I've started trying to curl up in my sleep which includes trying to curl my head forward/down. I think that was a huge part of the ouch. I'm being so pillow specific, I'm afraid we're going to have to drag one with us to NY. I'm going to TCI again the 1st week of November for my 6 month follow up. I can't believe it is 6 months already. Wow. I cut and colored my hair again for the first time. (I don't have any hair over the scar area, so I was only coloring the half mohawk on top of my head.) I felt better emotionally. Hair is such a funny thing. I'm doing a presentation about my artwork to a panel from the Alameda County Art Commission and the Juvenile Detention Center on Monday. Oh. That's tomorrow. I better go work on it and write more here later.

Surviving...but Ow!

I'm almost off the dilaudid. That rocks. Realizing that my pain management was still pretty dependent on it though. I feel like there are holes in the Kadian treatment. And of course am not at home. My partner has a solo art show opening in Kansas City (secret center of the art universe) on the 2nd. We are driving there. I'm slowing things down. We usually are in Ft Collins by night 2 and we are outside of Rawlins, WY. I hate hate hate wearing the aspen collar for 10+ hours a day. Other than that I'm hanging in there. I was told by many people that they didn't drive after surgery, and that part I am not having any trouble with. I drove 4 hours today. It doesn't seem to be any more tiring to drive or be a passenger when it is all interstate driving. We are having to hit hotels instead of car camping. I just can't figure out how to curl up in the van yet. Fortunately we built in an extra drive day not knowing how I would do. Gas is so expensive that we are going to be staying in the midwest for the month the show is up. Makes for a long time on the road.

If any of you are in KC area you should come to the opening on Sept 2 (http://www.eliotkdaughtry.com/robotcity/).

Hole in the info

So obviously...looking at the gapping hole in the space between the Cervical Xray post and the waking up post. That the methadone was still WAY sucking and I moved to taking Kadian, which helped quite a bit. None the less there was just a whole lot going on in my body...cuz I don't sleep 20 hours a day naturally. We'll see tomorrow who I'm going to be seeing at the pain clinic.

Waking up

I woke up on Friday. I think I literally had been sleeping almost 20 hours a day. I figure it was the fab combo of my system starting to kick the anesthesia out, withdrawal from some hard ass drugs, and just needing to sleep through some of the healing. So I'm down to about 10mg/day of Dilaudid & on Kadian...which doesn't seem too bad. Amazing how long the pain lasts though. I quit the clonidine which they give you to help with the withdrawal. I think that helped some. I'm taking as little flexeril as possible now too...usually about 1 a day. I don't really have much to say as after a couple of truly crappy weeks I am just starting to be up and around. Things are going well at this point I think. I'm making slow progress on the physical front, but it is progress and the docs said to plan for a year of recovery, so...I think I'm on schedule. It is really nice to feel half way human.

Oh, I do have something. I'm driving. I asked quite a few people who had more or less the same surgery how they felt about driving after surgery. Almost everyone said eek eek bad no good almost never not like-y, etc. I have to say that I am having a fine time driving. I have to turn at the shoulders or waist to see the right side mirror, but the rear view and left side are fine just using my eyes (switching from glasses to contacts was key though). I'm of course wearing a cervical collar. I had someone with me the first several times I drove to be a spotter of sorts...basically to call me out if I wasn't seeing things or was about to do something horrible. Nothin'. So there you go. If any of you are about to get yourself wrapped up in this sort of surgery, here's one vote for driving being ok afterward. My suspicion is that it depends on your comfort with driving pre-surgery. I LOVE to drive. I HATE to be a passenger. Surgery has taught me some tolerance for being a passenger, but hasn't dampened my love for driving. I'm driving myself to physical therapy and to doctors appointments. I'm running a couple of errands here and there. It kicks my ass and I have to come home and nap, but...progress none the less.

Speaking of progress. I actually went out to visit some friends the other night. Another thing that kicked my ass, but we parked about half a block from our friend's house...I walked in (did I mention that I walked in!) I can make it about half a block and that's pretty much it...we hung out for a couple of hours and then I felt like a big ole 2 year old. I was just done. Needed to go home right then. Ah well. More napping for me.

Cervical Xrays at (roughly) 3 month mark

So I got my cervical spine xrays done yesterday at the same time I was getting a chest xray and blood tests.
You can see them (hot off the press) here:

http://killerbanshee.com/family/medical/cervicalxrays.html

It is so, umm...real to see it in black and white like that. It was pretty amazing to see.
Funny that one can post their xrays before they even get to the doctor in some instances these days.

So I was on a crazy round to all the doctors over the last few days cuz I was feeling like complete crap. I was sure it was due to the methadone and me having a bad reaction to it. Physical therapy people and my primary were worried it could be a UTI or the flu that is going around, so they wanted to check. I peed in a cup. Got a CBC panel & a chest xray. All clear. I went to the Pain Clinic. My doctor was out of town. Thank goodness. I feel like we speak to completely different languages. Eliot and I both ask him to re-explain things when we're in the office and leave looking at eachother with big questionmarks over our heads. I don't know what it is. Makes me crazy. Like he said he'd give me a prescription for clonidine patches. I asked what are they for? He said to take with the methadone to offset the effects. I asked if it was really necessary, what would it specifically help? I didn't get a clear answer. I asked if it was available in pills because I tend to have scars from adhesives left on more than a day or so. He said ok. I should have checked the prescription, I know. Eliot pages me from the pharmacy and says it is for patches. Ack. So I didn't use them and left a message for my doctor about it. Didn't hear back. So back to the fact that we were at the pain clinic and he wasn't. I explained to the doctor I was seeing instead what all I was taking. I told him my symptoms...difficulty breathing, restlessness, weird constipation/diarrhea combo, drowsiness, decreased appetite, dry mouth, weakness, profuse sweating, muscle spasms, tremors, restless sleep, twitching, back and leg pain, spiking fevers, very fatigued, difficulty urinating, joint pain in all joints...he said it was for sure due to withdrawal from dilaudid. I asked if it was possibly due to the methadone. He said that wouldn't be it because I was taking clonidine for that. I said that I wasn't and that I had left a messasge for my doctor about that. He got all wound up and went and got the head doctor of the clinic. They talked me through what was going on, adjusted my dosages with the methadone and actually got me the prescription for clonidine in pills (took 3 times explaining to them that every medical adhesive I've had on my person for more than 2 days has left a scar). We went home and got the new prescriptions. They set a time for me to come in on Monday. What a difference between this treatment and the odd behavior of the person I regularly see! Any suggestions on how to change doctors within a group?

Amazing how much better I felt this morning. Still not amazing, but as good as I had been feeling before starting the decrease of the dilaudid/addition of methadone. And for those of you out there that have had these surgeries, how quickly did you come off narcotics all together? Did you change from a short to long acting one in the process? They are telling me that I might be on pain killers for a few more months, I didn't think I'd be on them that long, but I'm not sure what is usual.

Well, I better get some shut eye. Enjoy the pix.

Hmmm...MacJournal has an blogger post feature

Just noticed it in the custom menus, so we'll try it.

I feel like crap. Been feeling less than stellar for a few weeks as I've noted. Still waiting for test results on the main feeling like crud theory.

Now, on top of it I'm feeling even more crappy. No appetite. Fluish. Loss of appetite. Tired. Sleepy. Exhausted. Dry dry dry mouth & throat. Thirsty all the time. Super fatigued. Sweating buckets. Enough to have to change my clothes multiple times a day. I'm popping more fevers. Many of these are lasting longer than the usual ones which go up to 101.9 or so. These are only going to 99.x and last a couple of hours and then I go back down to something around 97.7. I'm having urgency about needing to pee. Then it is difficult to pee. (Did a UTI pee test just in case, nope.) I'm still having a systemic behavior that is like constipation, but what is coming out is more like diarrhea. The joint pain is terrible...hips, knees and ankles worst, then elbows, shoulders & wrists. I'm achy all over. I'm feeling much cloudier, like I can't think. Bleh. I'm going to see the pain clinic docs tomorrow. I've just stopped a moment to prepare myself for that tomorrow and the withdrawal of the dilaudid combined with the side effects I seem to be having with the methadone is probably the reason for it. I'm going to ask them if we can try something other than methadone for the long term. I can get through the dilaudid withdrawal if I know that is what it is.

What else. Not much cuz I've been so freakin tired and sleepy that I've not been able to. I've gotta rearrange my sleeping area too, cuz I've woken up in terrible positions a couple of times with my head partially turned and all that. I think it is time to stop sleeping on my devided pillow and go back to a regular one. I'm going to go back to sleep now.

Visiting with my mom

Been a bit quiet cuz my mom came for a visit. That took pretty much all of my energy for the last week. It was great though. My cousin Chellie and her husband and kids came down for 2 of the days. We mostly stayed around the compound, but mom went with me to my new physical therapist. (Yes, I finally got rid of the other one!) The new ones are great. Everyone agrees. It is a perfect fit. They do feldenkrais among other approaches. I like them, mom likes them, Eliot likes them. They like me. Woo hoo.
Mom helped garden, she helped clean, she helped cook. It was really nice. We spent a lot of time on the patio cuz Chellie's husband John is allergic to cats. It was a very nice weekend though. Mom and I taught Chellie and her daughter Haley to knit. I set mom up with her new iBook. I'm still having a lot of pain. Transitioning from dilaudid to methadone slowly. Got some good support shoes to work on walking in. I'm getting some tests done to follow up on the antibiotics thing, but don't know anything for sure yet. And in another 10 days I'll be getting my 3 month Xrays!
More about the physical therapy and stuff a little later. I gotta leave for an appointment now.

is it the antibiotics?

My energy feels like it is slipping. I'm more tired, less clear headed and really feeling pretty weak. The weak part I'm hoping is just part of going from no shape to getting in better shape and building my strength. I was horrified at physical therapy the other day that I collapsed. My legs, just like they used to, went to jelly and refused to hold me up. Frack! I am really pissed off about it. Of course it made my physical therapist go in the completely other direction and not want to let me do anything at therapy. She wants to know if I'm hypoglycemic. No. My legs are trying to do their old tricks. But WHY? she wants to know. Well, that is the question isn't it. Of course she thinks it is impossible to have legs that don't support you and not know why. They recovered after a 4hour nap, but I've been feeling a bit wibbly since. So back to the question...is it the antibiotics? Every time I take megadoses of antibiotics I feel great for about 4-6 weeks. Every time I take a regular course of antibiotics I feel great for a week or 2. It is bizarre.

More about this after I've done some reading. Looking forward to input from those of you reading as well.

Physical therapists...as hard to find as a therapist?

I've been to the new physical therapy happening 3 times so far this week. First time for intake and a little heat/tens unit action on my neck. 2nd time in the pool (shallow enough not to immerse my neck)...walking back and forth and backwards and forth and doing some stretching. 3rd time was today. I'm telling myself 2 appointments with someone isn't enough to form an opinion, but I'm feeling very torn. I like this place. They focus on pilates based physical therapy and water therapy. The physical therapist isn't trusting anything I tell her. If it isn't in writing from the doctor it isn't fact. I'm annoyed at the fact that I'm supposed to harass my doctor to put everything in writing that they've told me. I'm trying to keep in mind that she doesn't know me and thus doesn't know that I'm going to struggle not to do to much, not fight to not do anything. So some of it I've gotten in writing to close the discussion, some I'm still formulating. My doctors (I'm talking at least 3 different doctors independently here) are counseling patience and taking my time in building up strength and endurance and not overdo it. The physical therapist is saying not to bring my wheelchair into physical therapy and that I should just walk and that she's going to have me walking at least 4 blocks within weeks. Personally I like the latter, but seeing my recovery thus far and knowing that I've been in a wheelchair full time for 10 years am finding the prior to be more realistic.
Hmph.

Anyway, have any of you used a walker? Did you use a 3 wheel or 4 wheel model? What did you like? Why?

And if you haven't seen it (cuz it didn't publish for some reason) check out the posting form may 17.
'nite.

Where o where is Kriss...

I'm a little over a month out of surgery now. This week has probably been the roughest since I got out of the hospital. I can't seem to figure out how to manage the bowel issues that come with being on narcotics. I've tried laxatives/softeners (of various sorts and in various combinations). I've tried adding in more fiber on top of those. The only thing that works at all realistically is an enema, though a suppository has worked on a couple of occasions, but usually left me manually helping it along (ack). My primary gave me a script for Miralax today. We'll see how that goes.

I've also had a lot more pain this week. I guess just another point in the healing process. I had moved out to the more usual 6mg dilaudid every 4 hours instead of every 3 hours and was just miserable. I was seen at the pain clinic in SF this week, but there are a lot of hoops to jump through before they'll change anything, so I am waiting to get seen by one of their psychologists...so last night I switched back to every 3 hours and feel somewhat human today, other than the sleepus interuptus of taking medication every 3 hours. The other pain addition of this week is the onset of bursitis. Mainly in my hips, from not having used them for so long (about 10 years) and suddenly being using them in a somewhat normal manner.

It is interesting that my inability to walk was due to the cranial settling, not the MS. I swear, it is so bizarre, but I can walk like there was nothing ever wrong...other than on the endurance front of course. I would say that post surgery I am probably rid of about half of my symptoms. Not that it isn't leaving me with plenty of health crap to deal with, but it brings it back into a managable range, instead of a staring at the giant abyss of health falling apart. It is being terribly difficult to adjust to the non-movable neck though. It moves JUST enough to make me wonder if I'm doing something bad to it...which is a couple of degrees.

I HAVE to deal with the glasses this week though. Since I can't move my head I need to learn to use my peripheral vision and I have tiny little glasses that leave all of that in the fuzzy fuzzy land. Oh oh...and I am no 5'2" tall!!! That is almost 2 inches taller than I was before surgery! I guess my cranium had settled A LONG ways!

Half way between the 2 & 3 week mark...

...and I'm feeling half way human. Still at a point where I'm in a lot of pain if I am late for a pain pill. They said I wouldn't be feeling too great without them for the first month. I'm having a lot of muscle spasms and sticking close to the schedule for relaxants as well. I'm starting to feel more acclimated to the position of my head though. And the incision is feeling a little less raw. I'll have Eliot take some more pix of it today. Our friends are being great about coming around as we need things. Cleo and Juba came and helped garden yesterday and Leslie Mah picked up groceries for us. Eliot seems to be doing quite well. He's got a lot of art shows coming up and I'm only needing a medium level of help...finding getting water from the dispenser difficult, and I need help with things like running a shallow bath. Other than that it quite honestly isn't a lot more than he was already having to do for me on a daily basis (sadly...cuz it points out how much help I was needing day to day before surgery). The good thing is that when I'm fully recovered I should be able to go back to doing a more equal portion in the house. And I'm feeling well enough to be up and around and working on the computer for half an hour or so at a time, which means I can stay on top of the bills and stuff. It helps a lot to be over the thrush and infection-e stuff. I feel like my recovery is going really well. I can tell already it is going to become a challenge to remember not to lift things very quickly. I can't thank you all enough for all the positive energy. I feel so lucky to be getting the best of what we could hope for from this surgery thus far.

Home home home

We are home. I'm having a very painful day. Things are very owie today. I'm moving slowly. Having to deal with putting out some fires on the day to day management front at the Compound. Funny how those things refuse to politely wait while you feel like ouch ouch. I don't feel too blechy other than that though, so that is still making me happy. I can't get over how little of the overwhelming fatigue I'm feeling. That fatigue has been my constant nemesis, almost ALMOST never relenting for most of the last 10 years. Not to say that I'm feeling particularly energetic yet mind you. I know that anyone who has never dealt with a chronic, debilitating level of fatigue that can hardly be described, can probably not understand exactly what this is like...but let me tell you, just being tired and worn out from travel and anesthesia and surgery and pain, is SO MUCH LESS overwhelming than the normal fatigue I've had for so long.

The back of my head is looking less like a scary crusty mess (labeled to be looking like cat poop by some). It is an interesting thing, the changes made in recent years in how the healing of wounds is handled. They've finally noticed that our bodies are usually the most efficient at keeping things sterile and cared for while healing. So now, intead of flushing a surgical wound and scrubbing it out a zillion times a day, you now don't touch it. You let your body handle it. What a concept. So my body is doing its job and the cut down the back of my head is looking better and better. It also minimizes the scar supposedly, so we'll see.

Now everyone that has ever been asked to flush a wound 3-5 times a day can wonder what their scar would look like if they hadn't. I know my mom and I were discussing that right away!

Love to all. I'm hanging in there. Thanks for your thoughts and energy.
Kriss

fortune...ate

Eliot ran across a fortune of mine from dinner a few nights ago while he was packing...

You will come to realizations
in you life that change
you forever.

Needless to say I ate the cookie.

Head for the hills

Hello all. It is 10.40EDT on the 17th and we're finishing up packing to head for Oakland. I'm relieved to be going home to my own bed, though I'm endlessly grateful to Neil & Pamela & Lucy for sharing their home with us. It was good to be in a cozy environment while I struggled to get myself sorted post surgery. The thrush is starting to get under control, though my throat is still a mess. Swish and swallowing yucky stuff. Got the staples out yesterday. Nice to be rid of those. You can now see pix of surgery from the main site. The link directly to the pics is here. I'm feeling slightly human this morning, which is good cuz I know I won't by the time we hit Oakland tonight. Better to start out feeling decent. Eliot is packing since I cannot lift stuff.

I still think it was a mistake for them to release me from the hospital on Friday between the infection/thrush and my digestive system not yet functioning fully, but I know the nurses seemed to be up in arms about dealing with the fragrance allergic asthma response stuff. I still don't understand a hospital that will allow that kind of stuff in the first place. When I am feeling better I will be taking on that issue with the hospital there and seeing if I can get them to create a policy for the hospital as a whole.

I'm still not eating much. It is hard to swallow and I've not got much of an appetite. I have plenty of room for some loss of poundage though, so it isn't dire. I'm making sure to eat things that are good, such as miso and rice noodles.

I don't fully understand the NO flowers in any ICU room either. That was a big downer to have to spend so much time in such a sterile room. Though the fold out toilet was pretty funny. It folded into a cupboard. There are pictures on the site.

More from the West side.
xo
Kriss