As you know, I got a "diagnosis" back in March that I did not entirely buy into, then I lost my job and the fight was put on hold. I finally got on Medi-Cal back in June and trusted that UCSF would take me on as they had said they would. While trying to get someone to help me there, I also decided to go through the County medical system, as that is what I am officially using for the Medi-Cal.
Unbeknownst to them, they were in a race to see who scheduled me first.
The County won. Thanks a lot UCSF.... "we don't have your referral", "the doctor has to review the case", "we only take Medi-Cal on a case by case basis".
Anyway....
A couple weeks ago, I called for an appointment and was told I had to go get an orthopedic referral first; that doctor barely gave me enough time to say something was wrong with my leg before he went "okay, I'll put in the referral". Whatever, as long as I got my referral, I'll be on my way! Ohhhh yeah, it'll probably be six weeks before anyone even calls you.
Dammit.
Fast forward to this week. Sunday night, my leg hurt so bad I considered going to the ER, and Monday morning I did go. Unfortunately, there wasn't a whole lot they could do in this case.... they ruled out anything life threatening (no blood clots!), shot me with something strong, and gave me a stronger prescription. They also told me I should go to the County ER so that they might light a fire under my ortho referral. After not sleeping, then spending almost 6 hours in the ER, I decided to go home first... ate lunch and called appointments. Turns out the lady I talked to was a w w w w e s o o o o o o m e! I told her the situation and how I was still probably a month out from getting anything, but I was afraid I would just end up in the ER again and she said she would see what she could do. And while I had her on the phone, I asked to set up my primary care doctor as well. So instead of torturing myself with another ER, I was able to take my new prescription and lay down for the rest of the day. And Tuesday. All of it.
The primary appointment was this afternoon. And this morning, I got a call from appointments to give me an ortho appointment next Tuesday. See what I'm saying? I love this woman!
I just got back from the primary... he took the time to talk to me, get all my symptoms, ask questions, take notes, and (gasp!) actually touch my leg. And it sounded like he had quite a bit of respect for the ortho doctor I'm set to see, so that gives me even more hope. He confirmed some of the damage the doctors have been talking about (with more explanation than the non-active doctor from my previous post) and also confirmed my own diagnosis of more damage than they thought. He was also impressed at how active I am... even called it good!
And so, the fight is back on. I'll need some happy thoughts on Tuesday, and send some extra knowledge to the doctor for me if you could!
Wednesday, July 30, 2014
Sunday, July 6, 2014
Progress Report
I just realized that I haven't written about any progress lately, so I'm here to change that!
Bike: the doctor told me I couldn't go upstairs or ride a bike at the end of March. Not long after that, I got mad. Had a bit of a temper tantrum, thinking it was dumb not to do something I really loved just because one part didn't work (since switching from the cane to crutches, I find that my "good" leg does pretty well.. almost normal!). So, knowing many MacGyver-like people, I posted as such on Facebook and asked if anyone thought they could take off the left pedal and make some kind of perch for that foot. I did have such a person, who immediately spoke excitedly to me about what he was planning. It was really great to be able to share that kind of excitement about something... I'm not saying I entirely understood it all, but I caught enough details to figure out what the rest meant ;) It's still getting some finishing touches, but I should get Raptor back soon! For my part, I decided to make my own foot strap for the remaining pedal. I was at the store getting more paracord for my many projects (shameless plug: etsy.com/shop/somethingaboutdesign) and came across a bright green paracord called Dragonfly... and it would just so happen to match Raptor quite nicely. I needed this paracord for many reasons! Anyway.. I am lucky enough to be borrowing another bike that I was able to craft the pedal strap on and be able to rest my foot on the frame to test it out. The first ride was supposed to be a couple miles, but turned into 5.5.. and felt like 20. I know, I know, I haven't ridden in a while, I'm using only one leg, and I'm now using the whole freakin' leg, but holy crap I didn't feel that tired the first time I made it to 40 miles! So now I can ride to the kayak place rather than drive. And I've been on a few rides already (I just made the strap on Thursday).
Kayak: There's a kayak rental in my new neighborhood. It's $15 an hour. I can handle that once or twice a week! I've gone a couple times and they just let you loose in the lake, so it's fun to wander around discovering new things. There's a shipwreck, lots of wetland areas, and last week I discovered a tank sticking up out of the water in the middle of one part of the lake. I've only gone by myself for an hour at a time so far, but I can see staying out there longer if someone joins me in the future.
Crutches: I touched on this earlier, so I figure I should give a few more details. A few months ago, I realized my "good" leg was getting worse and the cane didn't provide enough support. After talking to a couple people about forearm crutches, I decided it was worth a shot. After using them for just a month, my "good" leg improved immensely and confirmed my suspicion that it was just tired of pulling more than its own weight. Unfortunately, I'm still using the most basic crutches available.... my mom made them a bit more comfortable, but I'm still dreaming of some new ones that I can't quite afford at the moment. Someday I will have some pretty purple crutches! Or purple and orange.. or blue... I kind of want all three colors so I can mix and match my days.
Tsunami: Not much to report here. I finally wrote up my training schedule for the upcoming races, including next year's Dopey. And then the rubber on the right rim started to come off during a run. While I was trying to figure out how to get that fixed, in a completely unrelated accident, I sprained some fingers. Coincidentally on the same side as the problem rim. It made the rim thing a bit less maddening, but also took away pretty much everything else I do (I found some fun new projects though!). But before all that happened, I was able to get in some speed work and had some consistent 7 minute miles. Hopefully with all the cross training I've had to do (I'm afraid of the hitting part still) I'll come back even stronger when I finally get back to it.
Medi-Cal: In more exciting news, I'm finally insured again and will be able start up my fight for diagnosis and treatment again. Hopefully with someone that actually wants to help me this time!
Bike: the doctor told me I couldn't go upstairs or ride a bike at the end of March. Not long after that, I got mad. Had a bit of a temper tantrum, thinking it was dumb not to do something I really loved just because one part didn't work (since switching from the cane to crutches, I find that my "good" leg does pretty well.. almost normal!). So, knowing many MacGyver-like people, I posted as such on Facebook and asked if anyone thought they could take off the left pedal and make some kind of perch for that foot. I did have such a person, who immediately spoke excitedly to me about what he was planning. It was really great to be able to share that kind of excitement about something... I'm not saying I entirely understood it all, but I caught enough details to figure out what the rest meant ;) It's still getting some finishing touches, but I should get Raptor back soon! For my part, I decided to make my own foot strap for the remaining pedal. I was at the store getting more paracord for my many projects (shameless plug: etsy.com/shop/somethingaboutdesign) and came across a bright green paracord called Dragonfly... and it would just so happen to match Raptor quite nicely. I needed this paracord for many reasons! Anyway.. I am lucky enough to be borrowing another bike that I was able to craft the pedal strap on and be able to rest my foot on the frame to test it out. The first ride was supposed to be a couple miles, but turned into 5.5.. and felt like 20. I know, I know, I haven't ridden in a while, I'm using only one leg, and I'm now using the whole freakin' leg, but holy crap I didn't feel that tired the first time I made it to 40 miles! So now I can ride to the kayak place rather than drive. And I've been on a few rides already (I just made the strap on Thursday).
Kayak: There's a kayak rental in my new neighborhood. It's $15 an hour. I can handle that once or twice a week! I've gone a couple times and they just let you loose in the lake, so it's fun to wander around discovering new things. There's a shipwreck, lots of wetland areas, and last week I discovered a tank sticking up out of the water in the middle of one part of the lake. I've only gone by myself for an hour at a time so far, but I can see staying out there longer if someone joins me in the future.
Crutches: I touched on this earlier, so I figure I should give a few more details. A few months ago, I realized my "good" leg was getting worse and the cane didn't provide enough support. After talking to a couple people about forearm crutches, I decided it was worth a shot. After using them for just a month, my "good" leg improved immensely and confirmed my suspicion that it was just tired of pulling more than its own weight. Unfortunately, I'm still using the most basic crutches available.... my mom made them a bit more comfortable, but I'm still dreaming of some new ones that I can't quite afford at the moment. Someday I will have some pretty purple crutches! Or purple and orange.. or blue... I kind of want all three colors so I can mix and match my days.
Tsunami: Not much to report here. I finally wrote up my training schedule for the upcoming races, including next year's Dopey. And then the rubber on the right rim started to come off during a run. While I was trying to figure out how to get that fixed, in a completely unrelated accident, I sprained some fingers. Coincidentally on the same side as the problem rim. It made the rim thing a bit less maddening, but also took away pretty much everything else I do (I found some fun new projects though!). But before all that happened, I was able to get in some speed work and had some consistent 7 minute miles. Hopefully with all the cross training I've had to do (I'm afraid of the hitting part still) I'll come back even stronger when I finally get back to it.
Medi-Cal: In more exciting news, I'm finally insured again and will be able start up my fight for diagnosis and treatment again. Hopefully with someone that actually wants to help me this time!
Left Behind
Fair warning: this may feel like a therapy session.
I am in a constant state of feeling like I'm getting left behind. By friends, by family, by the world in general. Sometimes that feeling increases. Like now.... it always increases when there has been a change.
I don't have a great track record. Something changes with me, with others, with life, someone disappears from my world..
Growing up, I had a "friend" that would leave me as soon as someone better came along and she felt I didn't fit in (she felt I didn't fit in quite a bit). In high school, I had some friends proclaim we wouldn't be friends anymore after we graduated because "it just happens that way".... I am still friends with many people from high school, it's not the same relationships, but they are still there; some I've even found more in common with since graduating. While I decided to figure out who I was under the people pleaser I had become and I shook up my entire world, friends faded quickly and my family was hit or miss as to wether or not they supported me. As I settled and became confident in who I was, I lost even more... but I am happy to say I also made some really great connections.
Then my leg gave up. My brother died. My world continues to shift on its foundations...
And I'm at a point where I feel left out. A lot of it is because of my own moments of missing the things I used to be able to do, things that didn't cross over the same in the wheelchair or with just one leg. It's upsetting to read about events I could have done just a couple years ago, but now I'm looking at pictures of groups of friends that still can. While I have found new ways to do things, it's my life, it's how I have adapted. It's unfair to expect everyone to adapt to me, but I still want to be in that group setting. And I miss it.
I also feel like some people are pulling away, or agreeing to spend some time then never scheduling... and I still have that people pleaser deep down; they don't want to be slowed down, they don't want to have to help you whenever your wheels get stuck, they don't want to lead you through a crowd, they don't want to do just things that don't cost anything (or much) just because you don't have a job.. and the list of reasons I shouldn't expect an invite goes on. And on. But I also have a list of why I'm not much different from before except for the addition of wheels.... So the conflict continues.
Or the two sides cancel each other out and that's why I can't shake the feeling of being left behind.
I'm writing this merely because I need to get it out in the open, so that I don't withdraw... well, withdraw more. I know I've been a bit quieter lately.
My lesson for the day, just in case there has been something that shifted (although I'm pretty sure it's mostly been in my own head); it never hurts to ask. Answering questions feels better than sitting here wondering why I'm mostly going out on my own.
I am in a constant state of feeling like I'm getting left behind. By friends, by family, by the world in general. Sometimes that feeling increases. Like now.... it always increases when there has been a change.
I don't have a great track record. Something changes with me, with others, with life, someone disappears from my world..
Growing up, I had a "friend" that would leave me as soon as someone better came along and she felt I didn't fit in (she felt I didn't fit in quite a bit). In high school, I had some friends proclaim we wouldn't be friends anymore after we graduated because "it just happens that way".... I am still friends with many people from high school, it's not the same relationships, but they are still there; some I've even found more in common with since graduating. While I decided to figure out who I was under the people pleaser I had become and I shook up my entire world, friends faded quickly and my family was hit or miss as to wether or not they supported me. As I settled and became confident in who I was, I lost even more... but I am happy to say I also made some really great connections.
Then my leg gave up. My brother died. My world continues to shift on its foundations...
And I'm at a point where I feel left out. A lot of it is because of my own moments of missing the things I used to be able to do, things that didn't cross over the same in the wheelchair or with just one leg. It's upsetting to read about events I could have done just a couple years ago, but now I'm looking at pictures of groups of friends that still can. While I have found new ways to do things, it's my life, it's how I have adapted. It's unfair to expect everyone to adapt to me, but I still want to be in that group setting. And I miss it.
I also feel like some people are pulling away, or agreeing to spend some time then never scheduling... and I still have that people pleaser deep down; they don't want to be slowed down, they don't want to have to help you whenever your wheels get stuck, they don't want to lead you through a crowd, they don't want to do just things that don't cost anything (or much) just because you don't have a job.. and the list of reasons I shouldn't expect an invite goes on. And on. But I also have a list of why I'm not much different from before except for the addition of wheels.... So the conflict continues.
Or the two sides cancel each other out and that's why I can't shake the feeling of being left behind.
I'm writing this merely because I need to get it out in the open, so that I don't withdraw... well, withdraw more. I know I've been a bit quieter lately.
My lesson for the day, just in case there has been something that shifted (although I'm pretty sure it's mostly been in my own head); it never hurts to ask. Answering questions feels better than sitting here wondering why I'm mostly going out on my own.
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