Suzanne Calling

I created a Warning sign for a person I interact with on Twitter who also has RSD. Thinking a friend from HS who also has RSD would appreciate it, I posted it on her wall. Then she shared it with a Facebook RSD group-and people were loving it. As the HS friend works in marketing, she urged me to create a CafePress site to sell products with the sign. She has a point. I will create things from time to time that others like, so why not monetize? If you know someone with RSD/CRPS who may be prone to bad flare days, this is for them , but I'll add more items as the urge to do so arises. The name comes from an old boss calling me Suzanne Suzannadanna, then Danna, then DannaFace. It was a clear sign that you were a beloved coworker when you got a nickname that evolved. ;) Dannaface Designs

On Black Friday, I bought another pair of the Alegria shoes, the Coral Owls I posted pictures of in a previous post. While the first pair purchased were size 39, the Amazon website stated that my 8.5 feet should really wear the 38 shoe. Okay, I'll buy that, the Kyra Flora Blue probably could have been a size smaller and still be very comfortable, so I went ahead with the smaller size. What I didn't know is that the Paloma is a tiny bit smaller than the Kyra. (Alegria appears to have set styles, and they just change the patterns on them, similar to what Vera Bradley does with bags). The Coral Owls arrived and while they fit and the average person would love them, my Stupid Leg would definitely protest the fit. Unfortunately, Amazon wouldn't just do an exchange, and while they're a good price, I repurchased the Coral Owls one size bigger and had Amazon overnight them for just $3.99 (Prime is awesome!). The 39 in the Paloma is definitely a touch narrower and a ...

The cat owns me. I am most definitely his favorite. What this means is that when I am home, he wants to possess me. The usual routine is when I get home, I pick him up and he proceeds to climb up on my right (bad) shoulder, then he heads across and covers both shoulders, like a stole. Then when I sit, he needs to be near me, which results in this: It doesn't matter where the leg is, he will force his body next to my leg. He doesn't care that it sends my nerves into overdrive. If I move, even while he's sleeping, less than a minute later, he is velcroed once again. So, I wised up and moved my left leg, placed it out of his reach and thirty seconds later, this is what he did IN HIS SLEEP: I don't think he understands, and I don't have the heart to tell him it doesn't feel as good for me as it must for him!

Last Thursday was my first class of the semester. As of tonight, I've finally attended each class at least once. The observations so far: I'm glad that I took so many web based classes before this semester. They force a student to be much more disciplined about studying. As a result, with four on campus classes, I already have myself trained on a schedule of sorts to get my work done. One of the benefits of managing the meal prep kitchen is one I didn't realize until last Thursday. It ends up that being surrounded by so many native Spanish speakers and having to find ways to communicate with them trained my ear without me realizing it. The pronunciation part will be a little easier, thanks to them! When you're chatting with a classmate and professor after class about statistics and comment that it's 'real world math, but applied to psychology', the professor nods and agrees. The fact that he is as sarcastic as all get out is going to make those lectu...

The past month has made it abundantly clear that Ed and I are living the Sandwich Generation life. Yes, it could be argued that I did when my Mom was ill, or that he and I have been pretty much since Jane and Mom moved to Florida. That was nothing compared to now. It began when Jane was in the hospital and Michael went home. We needed to make sure Mom was eating, taking her medication and generally was okay. Then she had the seizure and another hospital stay and no rehab. Jane would be coming home a few days later. Ed's taken on medicine duties morning and night, because his mom doesn't remember what she's taken and when. I do my best to cook 4 or 5 nights a week. Last Sunday, I asked Jane what she wanted for dinner and I was told that they had plenty of leftovers for a few days. Few to me means 3, maybe four, but the next night, as I'm halfway to scouts, I get the frantic phone call "when are you bringing dinner?" She'd run out of food, misjud...

You may have noticed that I haven't written about the health issues a lot over the past year. The problems I have are still here, still troublesome, but they've become the norm-so I don't talk about them much. The foot issue was mentioned last month, but there's another problem that cropped up before that did-my right shoulder. I've had issues off and on for years with my neck and shoulders, usually when I am stressed, one or the other will spasm. This is usually accompanied by a huge knot just under my shoulder. For nearly two months, my right shoulder has been giving me grief. The pain is similar to those spasms, but different because this time, the upper arm is affected. There is no knot. When you tune out pain, gradual increases aren't so noticeable. It had been a problem for a while when I went to go choose my backpack for school, because I'd even commented to Ed that the only good thing about doing it that day was that my neck and shoulder were ...

This certainly has been a roller coaster week. *Sent a kid to camp. Picked the kid up from camp three days later. *Drove to Port St. Lucie for an interview. Two and a half hours each way. Won't know if I got a job until September. *Have a stupid, bruised RSD foot again. Apparently, if that foot walks on gravel, it turns purple. *Got a HUGE gift card from a major retailer to shop and vlog and HAVE A CONTEST. Oh wait, did I tell you that it's to do a room makeover? For a kid? The one who got sent home from camp? I'm sitting here with said gift card and perusing their web site without said child seeing what's going on. I think we need a few day's distance between what happened at camp and a shopping trip to redo his room. Other crap is going on, which I wrote a blog post about, but I'm not quite ready to publish. It can be summed up in stating that people who frustrated us in may still frustrate us. It's not my conversation to have.

The talk of My Stupid Leg (trademark pending) has been lacking lately. While I haven't been talking, it's still been hurting. The issue is and probably always will be the RSD. As I explained to a coworker today, my leg has a constant, low grade shock from toes to a couple of inches below the knee. Was I crazy to return to work? In a word, yes. However, the finances outweigh the health a little more right now. This assignment will end around June 30th and I may or may not get picked up for the next one. We'll take it as it comes. In the meantime, working is a double edged sword. Mentally, I need to do it, but the physical nature of it is rough. It is good for distracting me from the RSD issues, because the work itself is enjoyable. At the same time, the rest of my body is telling me in no uncertain terms that it does. not. like. this. Next week, I have a medical appointment related to my appeal of SSDI. I let my boss know of my need to have a couple of hours off ...

I know, you're probably all pretty convinced that My Stupid Leg (trademark pending) is doing okay or may even be back to normal. I wish that were the case. At this writing, it is 3:54 am and the house is silent, except for an occasional snore from one of the bedrooms and the steady hum of the fan on my laptop. It is quiet-too quiet. There is nothing to distract me from the freaking leg except what I find, surfing the Internet. Recently, I explained it to someone by suggesting they imagine someone plugging their big toe into an electrical socket. Pretty big jolt, right? That's what happens to the top of my foot to the middle of my shin pretty much 24 hours a day. Every day. How does one live with this, the RSD, the nerves that tell your brain that some heavy duty shit is going on in your body when it isn't? You deal. Sometimes, it's easier to tune things out. I've been blessed with a relatively high pain threshhold and some hyper children. It makes dayti...

I was offered a job at the beginning of October. A local government job that was a perfect fit for one of my passions. Twenty hours a week, but still, I'd get out of the house and get some experience in something different. I was sent for a physical with their doctor. And waited, and waited and waited some more. I'd mentioned to the doctor that I had vascular disease and RSD. He wanted medical releases from the doctors treating those issues. Nurse M promptly faxed them a letter after asking me how I wanted the letter worded (6-8 hours a day and must wear Crocs, please). The problem was getting the letter from my Neurologist. (Can I say that I've been kicking myself for being honest about the RSD?) He's internationally recognized for his research on RSD. As such, about a year ago, he parted company with USF and started his own research center. Awesome news for him, but a monkey wrench for me. See, he wouldn't write a letter since he hadn't seen me in 18...

I have been offered a part time job. No bennies, but a good, solid job. As a condition of employment, I had to have a physical and drug test. During the physical, the doctor and I discussed the RSD and vascular issues. They aren't a big deal, but enough of a concern that he wanted notes from the doctors treating those two issues stating my limitations. I told him that they'll probably limit me to not standing more than six to eight hours a day and wearing Crocs. Based on the job, neither will be an issue. Even if it were full time, these conditions would easily be met. I called Nurse M and she faxed off a letter lickety split. She even asked me what I would be doing and what do I need the note to say. They've already received it. Now, onto Dr. K, the RSD doctor. He left the group I was seeing him at last year and I haven't seen him since. It makes no sense to see a doctor when you cannot get your insurance to sign off on covering the co-payment on the surgery...

Several things have come back to me this week (or are coming soon) First, the ability to wear the Crocs. Dr. J wrote a very eloquent (but FIRM) letter stating that I have a lifelong condition called Venous Insufficiency. It caused the Venous Stasis Ulcers and as a result, the RSD/CRPS. He briefly explained what all of was and that I suffer a great deal of pain and the only shoe that is beneficial to reducing the pain is the Crocs. I won the battle, but the war is still waging. I am now told I have to dress FAR NICER than my peers to make up for the ugly shoes. This was communicated by my direct supervisor, my DM hasn't talked to me yet. Wonder how she'll take the comment that's brewing "Hmmm, what would the Labor Board have to say about the conditions you are placing on me because of a medical accommodation?" Second thing that has come back: Vern Troyer has decided to attack my stupid leg (trademark pending) again. I've got the stabbing knives in the cal...

I've been upfront with just about everyone that asks why we're moving. I'm an open book, so the issues that got us here were known. It's amazing how much comfort people have given in the past couple of weeks. I'm grateful for it, because it quickly got me out of the doldrums and into action and even excitement for the new beginning. I've had a couple of friends apologize for complaining about the issues going on in their lives (and you know who you are). Yes, we're going through a big deal here, but that doesn't mean that the things going on in your life aren't worthy of you venting about them. We've all got our crosses to bear at one time or another. Some are big, some are small, but they challenge us and make us better people. A coworker lost her dad this past week. She's a good person and was especially close to her dad. Another coworker is friends with the family and shared some stories of the dad's practical jokes on various ...

Nurse M was under the weather today, so I went to the vascular clinic and saw Dr. J. The last time I saw him, there were two gaping ulcers on my leg that he was worried about. If I recall correctly, he mentioned a hospital stay if they didn't improve soon. So, today, he got to see the leg at the best it's been since then. The DuoDERM works very well. I have to wear the compression stocking with it nearly 24/7. This is good for the skin regenerating, but not so good for the RSD. You can't have them all, I suppose. As I hadn't seen Dr. J for a long time, I asked him about the vein graft surgery and whether I was a good candidate. Dr. M (in Hawaii) does well over 100 of these a year with about a 70-80% success rate. He does a few and feels that he cannot do them well-so off to Hawaii he sends patients. He got a copy of my last Doppler study and I am a good candidate. I have no current clots, no arterial issues and nothing has deteriorated so bad as to prevent the ...

Today is the day we head over to WDW for the long awaited scout camping trip. It was easy to get the boys off to school the past few days-any protests of going to school were met with "you want to go camping?" and voila, no more problems. :) One problem is that I am supposed to pack Ed's car up and run some errands, but I don't have the key! The leg is slowly improving, but you know hives, they don't just disappear. It'll probably be another week before they're gone. I'm torn between putting the next Unna boot on now (I was given the supplies) or waiting until the hives are gone. If I do that, then I might squeeze in some swimming this weekend. Tough choices. I have a call in to Nurse M, as the Lyrica scrip was written for me to take a pill in the morning and another at night, but I'm taking four pills a day now. As much as I knocked it at first, I have to say the Lyrica IS making a difference on the RSD. It's not as good as the Neuront...

Another 1am entry. This is getting so freakin old. I would love nothing more than to have a normal health issue with normal treatment and no complications. However, this is me we're talking about, so things will NEVER be that way. To whit: I had my follow up with Dr. J yesterday morning to have the Unna boot reapplied after he looked at the progress with my wounds. Unfortunately, he did not get to see them immediately after the first boot was taken off-they were dry and looked good. The six days in the boot made them noticeably shallower. Dr. K's nurse dressed the wounds in Xeroform, a moist dressing I'd been using. It made the wounds look 'soupy', as Dr. J so aptly described it. Fortunately, he listened to my description of what my ankle looked like upon removal of the boot. We discussed the visit with Dr. K and decided to go with another Unna Boot, with a change in two weeks. It was also decided that I'd be given dressings to reapply them myself (with...

I saw the Neurologist/Pain Management specialist today. He came highly recommended from my vascular surgeon, and I can see why. He also sang Dr. J's praises to high heaven (as I do, too). When Dr. K came into the examination room, he sat down and told me this would be a one hour visit. He would take my medical history, review my charts and then we would go over treatment options. I was quite impressed, because most doctors don't spell it out for you-and I wondered if this was because I was seeing him in a teaching facility. I just now googled his name, and he is the first google entry-more on that later. He does his exam after taking my history and the nurse assists me in removing the Unna boot. It has definitely done its work-the wounds are shallower in the week's time. He notes the muscle atrophy, the degradation of the skin,, color abnomality, and a temperature difference of five degrees between the two legs. What does this mean? I appear to have classic sympt...

It's my weekend off and I'm doing exactly what I want...not much of anything. The health has taken its toll on us, so to veg is a good thing. Next month's weekend off is already scheduled for a cub scout camping trip. I finally have all of the meds prescribed at the doctor's appointment earlier this week. There's a new debridement ointment. Man, it itches like you would not believe, but when I changed the dressing this morning, I could see the difference after just one application. I am hoping that the three weeks of this before the next visit to Dr. J will clear out all the infection and smelly, gross stuff. If it progresses at that rate, then I'll be in the Unna boot by the end of the month. The hives? Still here, and probably will be for another couple of weeks. That's typical when I'm allergic to medication. The jury's still out on the Lyrica, but I'll give it a week before I sing it's praises or bitch about how horrible it is....

Visited with Dr. J and nurse M today. The Solosite that I thought was doing a crappy job received the same review from them. Actually, nurse M wanted to know *why* I was using it, and Dr. J had to admit he'd prescribed it! I was prescribed a different debriding agent and will pick it up tomorrow. This one doesn't hurt as much, but boy, it itches like you would not believe. While I was hailing Neurontin as the king of all nerve pain relievers, it decided that it was abdicating. I have hives from head to toe, though not as bad as I have had from other meds. Lyrica is the replacement after nurse M saw the hives. I swear, my medic alert bracelet would rival any necklace 50 cent would wear. Dr. J reiterated his endorsement of the Vicodin. Much as I hate being on pain killers, he tells me that I need them. I was told that if *I* am complaining about pain, it really must be bad. This means I *NEED* the meds. He also went out and printed out the info about the Neurologis...

If you've ever suffered from insomnia, you can understand my praise right now. For the past two nights, I've been able to sleep for more than 3 1/2 to 4 hours. It is amazing how much more rested I feel today with 7 hours sleep that was uninterrupted! Yay, Neurontin, or rather, the generic equivalent. I wake up with pain, but not the excruciating "Oh my God I'm going to hack my leg off at the knee to stop this!" pain I had been experiencing. However, now that I'm not feeding the body the Vicodin through the night, it seems like I have had to bump up from a pill to a pill and a half during the day. I see the doctor on Wednesday and will bring that up. Nurse Kathy brought up that this really isn't RSD, she felt it was more a peripheral neuropathy. She sent me some links, and while the symptoms of the two are very similar, I do fit the PN diagnosis much more closely. Instead of specifically seeing a pain managment doctor, I'm probably headed to...