Friday, November 29, 2013

SCS trial, days I & II

I know I missed a post on day I, but I confess the meds they gave during the insertion made me very, very tired all day, so I fell asleep without managing a post yesterday. So I'm going to cheat a bit and post 2 days worth at once. 

Day I

The insertion started off the same way all my nerve blocks have other years. They started my IV for the procedure in a side room, then the Boston Scientific (the manufacturer) rep came in to make sure I didn't have any more questions before we started the trial. My biggest question had been that the position I was going to be in for the lead insertion is a pain relieving position for me- what if I couldn't tell well enough that the wires were in the right place? They assured me they were looking for coverage of the limbs with CRPS by the tingling sensation, called paresthesia, that the wires cause and not instant pain relief. 

Once my few questions were answered, we moved to a procedure room. I was laid face first on a procedure table that has a fluoroscope parked over it and I was hooked up to monitors. They gave me some partial sedation for the procedure, using a fast acting narcotic that knocked me back a few pegs. I was draped from head to toe with only a small portion of my back exposed, then the skin was cleaned. They used a bit of local numbing medication in my back to help dull the pain, too. 

The doc came in and inserted hollow needles into my back at a shallow angle (nearly parallel to the back, instead of perpendicular like many docs do- perpendicular can cause issues with insertion). Once the needles were in, he double checked the locations with the fluoroscope  then wires were fed in through the hollow needles into the epidural space of the spine. Once the wires were in, the hollow needles were removed, leaving the wires behind. They double checked the location of the wires with the fluoroscope, then the BS rep hooked up the wires to current and we checked for paresthesia coverage. It took a tug or two on the wires to get the proper coverage, but once we were golden, they stitched the wires to my back then covered me from my bra line to half way down my butt in tape. My mother later got a good laugh at my expense as they quite literally put tape in my butt crack. Gee, thanks doc! 

Once I was cleaned up and good to go, I was walked down the hall to small office to meet again with the BS rep. The rep hooked up the temporary unit, showed me how everything worked, including the remote, and he gave me his cell phone number in case I ran into any questions along the way. After that, they scheduled me to come back Monday to go over the experience and have the wires removed, I was given a prescription for antibiotics to prevent infection, then I was sent on my way. 

I'll admit when I got home, I was extremely sore. Moving was difficult both due to the soreness and due to fear of moving the wrong way and causing a jolt. These temporary trial systems aren't anchored nearly as well as a permanent unit so it can be pretty easy to give yourself a little burst of current. I haven't found any of these little jolts to be painful, just startling. A single vicodin took care of the back pain to the extent I was able to get up and move around, though for the first part of the day, I needed help getting up and down off the toilet. I even went out for dinner! Overall, a fairly uneventful day. Everything went very smoothly, and I could tell it was going to be easy to get over the initial soreness of the wire insertion. 

Day II

Woke up today pretty achy- I'm a back sleeper and sleeping on top of the wires and belt for the unit (the temporary unit is worn on a white velcro belt- very fashion forward ;) ) left me sore. The soreness faded quickly and I was back up and about. I even helped a tiny bit with pie making at my moms for Thanksgiving dinner. I survived dinner at my grandmothers just fine with no bumps or major jolts. As the day has gone on, the pain from the wire insertion has faded more and more. 

I'm not yet feeling any major pain relief from the hip pain, but the feeling of my tibia and fibula being shattered, which is a rather common issue for me, is greatly reduced by the paresthesia. I'm very hopeful that with time, more of the pain issues will fade. Many CRPS patients don't report full pain relief immediately- some people fell no pain relief for up to the first month. So since I'd doing so well thus far, it makes me hopeful. 

My biggest concern with this whole thing has been that I wouldn't be able to handle the feeling of paresthesia. Some patients fail their trial despite excellent pain relief because the buzzing drives them crazy. So far, the buzzing is weird, but not bad or crazy-making for me. I think that in time, it would just become my new normal. Plus, if I start feeling jealous that other people get to have normal sensation in their limbs, I can just turn it off. The joy of having a handy remote control. 

So far, so good. I'll keep everyone updated as we go. 

Thursday, November 28, 2013

Happy Thanksgiving!

A quick post to say Happy Thanksgiving to my American readers. We had a blast today with the entire family and no one jarred my SCS wires/unit. It was a bit weird because I spent very little time with the kiddos, and normally the kids talk me into a board game. This year, their parents all told them to please leave me alone because of the trial, which was likely for the best, even if it did feel odd. I managed to get a hug from L, my favorite little cousin, who is 3 years old and cute as a button. Of course, being a stinker, he  first had to hide and "refuse" to hug me, but he kept laughing so hard he almost fell over so the hiding didn't work so well. He's at such a fun age, when they start using whole sentences. Today he thanked my mom "for making yummy pies". (He's a true member of the family- he's a pumpkin pie fiend.) 

Some family fun:

Dad in a pink plaid apron.

Grandpa snoring away in his chair after dinner. 

CRPS/RSD Treatment, part I

I've been promising an overview on CRPS treatment options that currently exist and keep forgetting to do so. I wanted to make sure to get to this before the end of November and the end of CRPS Awareness Month. I won't be going super in depth into anything here in this post, but please feel free to ask any questions. I'm always very happy to help. 

1) Medications

1a) Anti-epileptics

Anti-epileptics, such as Lyrica (pregabalin) and gabapentin, are used to control neuropathic (nerve-based) pain. They can be disorientating at first and I always recommend not planning on driving when very first starting or making a big dose change. I actually find a huge dose change on these to be as or more disorientating as a change of my narcotics dosage. They are usually a first line treatment and can be very effective. Lyrica and gabapentin are related, with Lyrica being the newer of the two. Lyrica is taken 1-2 times per day, and gabapentin is taken 3 times a day. 

1b) Narcotics

Narcotics are very commonly used in the treatment of CRPS. CRPS tends to be very resistant to treatment, so the big guns tend to be necessary to provide even a sliver of comfort to the patient. There are short acting medications, like Percocet (oxycodone) and Vicodin (hydrocodone), as well as long acting meds like Oxycontin, MS Contin (morphine), fentanyl patches, and Butrans (buprenorphine patches). Many patients use both a short acting and a long acting med. The long acting medication gives a blanket level of pain relief and the short acting is for flare ups of pain, also known as "Breakthrough Pain". These meds come with a host of side effects such as constipation and legal ramifications (many doctors require random drug screening while you're on these meds, to make sure you're taking your meds on schedule at the correct dose and only your meds), but they can be extremely useful. 

1c) Others

There a couple other types of meds used in the treatment of CRPS. These can range from anti inflammatories like Meloxicam to the immunosuppressant MTX (methotrexate) to a class of antidepressants called SNRIs. I currently take the SNRI Savella and while I find it doesn't lower my pain any it does make me care a lot less about the pain and it makes it easier to get out and do things despite the pain. 

2) Physical Therapy

PT is ESSENTIAL for the proper treatment of CRPS, but it must be done correctly. Things need to be taken slowly and surely. Very slowly. I've not had the best luck with PT centers that specialize in sports injury patients. The best therapy I've personally found is at a local rehab hospital, where most of the patients are transitioning between a hospital stay and going home. The biggest thing is to find a physical therapist who has experience working with CRPS, which can be tough to do. If there's no one in town who's already familiar, find a therapist who is very curious and willing to do some research and learning. I always recommend warm water physical therapy as it helps with allodynia in addition to pain. For more details on PT and CRPS, feel free to check my other blog posts using the tag "PT".

I was going to try to fit this in 1 post, but even keeping things short and sweet, it's becoming a bit epic in length. To keep things easy and readable, I'm going to break this up into 2-3 posts. 

Monday, November 25, 2013

News on the SCS trial

Just a very quick update on the Spinal Cord Stimulator trial front- I got a call Friday afternoon to schedule my trial. There was back and forth as they wanted to schedule me more than a month after they said they would, but in the end, I was scheduled for my trial to start Wednesday, November 27th, at 9:20am. Yep, in 2 days. My trial will likely be on the very short side, all of 3 days, with the end likely being Friday afternoon. My doctors office prefers to not leave the devices in long for a variety of reasons, including high infection risk and wires coming loose. 

I'll be posting pretty often about the experience for those who are interested. Frankly, I've never met anyone in person who has a SCS for CRPS. I've met a few people who have them for spinal issues, but not CRPS, so I'm very curious. 

For anyone who's curious, I went searching and found a picture of someone with a trial unit in. Note: this is not me (obviously). I will be posting pictures of myself with my trial unit once it's all in, though. 

My parents will both be staying at my house for Wednesday and Thursday night, then if my trial is extended for any reason, we'll decide from there who will be staying with me. During the trial, I can't bend, twist, raise my arms above my shoulders, or lift anything over a few pounds. This is because the wires going into my spine will only be anchored to the skin with 2 quick stitches, so any of those maneuvers could easily dislodge a wire and cause pain, spasms, and other, more serious, complications. So having the parents here will be very important to make sure I can safely get around and so I'm not trying to do things like cooking. 

Sunday, November 24, 2013

I don't think I'm asking for much

One question that occurs to me time and time again is: Why is it so incredible hard to get the most basic of help? When my health issues began, doctors skipped important tests, prescribed the wrong meds, blew me off. My normal day to day existence was hell on Earth and healthcare providers blew me off as a malingering fool. I was choking on solid food and one doctor ran 3 simple blood tests then came back to me and told me I'd "simple have to learn to deal with it". Situations like this are so common it's become a monthly thing in my life.

This months craziness was at the hands of my Traditional Pain Management physician (TPMP). My friends have a different name for him, but I'm trying to leave major profanity off my blog (or at least use less than I normally do). For 2 or 3 years now, I've used a topical arthritis gel called Voltaren. It's an NSAID (non-steroidal anti-inflammatory drug) and while it's active ingredient is hard on the organs when used orally, in topical form it has very few side effects and is incredibly safe. Well, as long as you don't accidentally lick your hand. Then it might give you headaches... And yes, baked cheetos were completely behind that particular accidental discovery.

TPMP is normally a big fan of options that aren't going to murder my liver. Reasonable, right? He also likes the least aggressive option. Also reasonable. Voltaren fits both of those categories very, very well. It's only drawback is price. Woah, is it pricey. So I always make sure, when I need a refill, to get it done when I have a full tube, or about 2 weeks to 1 month at my current rate of usage, left. That gives me time to get insurance coverage lined up. Three months ago, I asked TPMP to call in a refill to my local pharmacy. "Sure!" Alright then, check that off my list. Except.. it never got called in. I called the docs once that month, they apologized, said they'd call in right away. Never happened.

The next month rolls around. I ask again in person for this med. Get another apology and assurance. Once again, nothing. I am now out and using a tube left over from when my mom hurt her ankle. I have called nearly once a week for the last month. Each time, I'd get an apology, and assurance, and no prescription. They've called in other things to the same pharmacy during this time, so it's not a file error. I called again on Thursday and had by far my worst ever phone call with a doctors office. The woman who answered the phone informed me that there was no record of me ever calling or asking for this med, so clearly I was just lying. When I called her on calling me a liar, she denied it, then placed me on hold with zero warning.

Eight minutes later, someone else finally picked up. I got another apology, another assurance, and still no bleeping med! In order to get a refill, as I've now decimated the last tube I had access to, I had to call the clinic after hours and demand the answering service contact the on call physician. He agreed to call it in, but failed to put a quantity on the script, so I ended up with 1 tube. Which means another fight for a script. I see TPMP in person Tuesday- I don't think he knows quite what's coming. Because you had better believe there will be a riot act read and I will NOT leave without a paper prescription for the Voltaren gel. It's against their policy to write a paper script for anything non-narcotic, but I don't really care. I'm DONE. We play by my rules now.

All I want is correct medical care. It doesn't seem like much, but wow, is it ever. And it seems to be impossible for the vast majority of doctors and their office staffs to provide. (To be fair, sometimes it's a great doc and bad staff, sometimes it's great staff and a bad doc, and sometimes they both stink to high heaven.)

Wednesday, November 20, 2013

Ode to Ikea Bathrooms

I was at Ikea with a good friend this weekend, looking for things for both of our new homes, and was struck once again with how accessible my local Ikea is. I honestly don't know if that's a nationwide trend, but I can say for certain the West Chester, OH Ikea is a good one. The handicap spots can be a bit further out than you're used to, but the lot is extremely level, so getting in isn't tough at all.

Once in, you're greeted by concrete floors that are all but polished to a shine. A wheelchair nearly flies over them, even years after the store opened. The elevator is only 10 feet or so from the escalator, and it's massive. Seriously, I've been in that elevator with over 20 people and it didn't feel crowded. No waiting for the next load here!! Once upstairs, a few of the demo home layouts are tricky in a narrow manual chair and would be very tough in an electric chair, but they've managed to lay things out so the vast majority of the demo layouts are visible from the main walkway. I was able to navigate a path to every couch I wanted to try out (the friend needs a couch, I felt the need to weigh in on the Comfort Factor- I am, after all, a Comfort Factor Expert). The downstairs shopping area was the same way- I could get to pretty much everything I wanted to see. There were a few tight-ish corners, but I could get around them fine, and I expect most electric chairs would be able to turn around and get back out if the chair is too big for a corner. The tight corners were pretty dang rare. Now, if I could just get the good people of JC Penny's, Sears, etc, to follow suit.

But the star of the day? The bathrooms. There were 2 handicap stalls, both of which I could fit my chair in. A big chair would only fit in the larger one of the two stalls, but it's great that there's a second option for those who can stand to transfer like myself or are ambulatory but need the bars and higher seat, which is normally me with my crutches. The baby changing table was not in either handicap stall- instead, it was in the main area. Which is exactly where it should be. There's a sink that's set low enough a toddler standing could wash their hands unassisted, which is excellent for small children in small, low to the ground chairs. Added benefit I'm betting the installers didn't foresee: it's also a good height for many Little People.

Only improvement I could possibly suggest would be push button openers on the doors. Actually, I think I'll message Ikea and ask about them. :) Never hurts to ask and goodness knows I shop there enough!

Friday, November 15, 2013

Becoming a Robot, parts I, II, and III

Yesterdays post was an overview on Spinal Cord Stimulators. I find that as an option for treating pain, these devices are under represented in the online CRPS community. Many people feel they are a bad option because they rule out other treatment options (Hyperbaric Oxygen Therapy is a no go with any spinal implant). However, unlike the old days, SCSs are NOT permanent. People I've spoken to who've had their SCS removed in the last decade say it's an extremely easy surgery with minimal recovery time to have one pulled. So for me, right now, the SCS feels like a good option. It should help prevent the further worsening of my CRPS by stimulating proper signals from the Sympathetic Nervous System, thus improving blood flow, skin growth, hair growth, etc. And if I ever stop responding to it or it malfunctions, then I can turn it off, have it removed, and seek other treatment options. Easy peasy.

Having an SCS implanted is a multi-stage smorgasbord of doctor appointments. Honestly, I've had over half my femur replaced with far less pomp and circumstance. But, they're expensive and don't work for everyone, so it's a longer journey than most surgeries. 

Part I- Referal from a pain doc.

Once I got clearance from my orthopedist, I still needed an official referral for the procedure. My pain doc immediately referred me to his boss, the head of the interventional pain clinic, for the trial (my normal doc does not have the training needed to do SCSs). I actually never met with the doc I was referred to- instead, I saw his Physicians Assistant.  I'd met her before, during my initial intake into the clinic, and our appointment was short and brief. The meeting was primarily to make sure I understood the device and the procedure. Since I was a long time patient of the clinic, the appointment was about 20 minutes. I understand if you're new to the clinic, it's a 1.5 hour appointment with the PA. 

Part II- Psych Eval. 

Once the docs involved all sign off, insurance companies require a psychiatric evaluation. They want to make sure you're mentally up to the care and management of an SCS. SCSs aren't simply have a surgery and be done- once the device is installed, it has to be charged once every 1-3 weeks. You have to keep a remote control on you at all times for remote changes to the frequency- many people adjust the current if they'll be switching between sitting and standing, and for things like driving and sleeping.

The psych eval was pretty simple. There was a short interview done face to face, then there's a written assessment to make sure there are no underlying psychological conditions that need addressing before moving on with the surgery. There is also a pen and paper questionnaire about your pain. All told, I was in the eval for about 2 hours. 

Part III- Questions and Answers.

This part is not a standard part of the procedure, I just happened to get lucky and my doctors office was hosting an information session on SCSs yesterday evening. The 2 doctors from the clinic who do the actual trials were there, as were 2 representatives from one of the manufacturers of the devices. It was nice to be able to ask all the questions I had, though out of 20+ prospective patients, I was the only CRPS patient there. Everyone else had spine issues. I have chosen to go with the Boston Scientific brand of implant for a wide variety of reasons. It's probably more than most people want to know, so I'll skip it for now, but if you're curious about my reasoning, please ask. 

Coming up is Part IV- the Trial. To receive the final implant, a trial period is done. I should be receiving a call in the next week or so to schedule my trial. I'm worried about the trial, since I really want this to work, but my doctors office has a good success rate. Normally, 60% of patients who do a SCS trial move on to the final implant. My doctors office boasts an 81% success rate. I just keep telling myself that if it doesn't work, I'll find another option. Now if I could just make myself believe it...

Any questions about SCSs? Feel free to ask! If I don't know, I'll try to find out for you. And yes, personal questions about why I chose this are 110% welcome, too, not just technical questions. 

Treating CRPS: Spinal Cord Stimulator overview

found out I was finally a candidate for a Spinal Cord Stimulator back in August. These are used as a treatment for CRPS and to control pain from spinal issues such as Degenerative Disc Disease and Failed Back Surgery Syndrome. Obviously, I'm looking into this option for my CRPS. I've actually had  several appointments by this point, but I'm been nervous about discussing it all, like I'd jinx it somehow. I decided to get off my duff and start writing about it- after all, I've been annoyed it's been so hard to find info on. So it's only fair I share the results of my appointments and research for other prospective patients. 

First up, a primer on what the heck a Spinal Cord Stimulator even is and how it works. 

Spinal Cord Stimulators (SCSs) are an electrical device that is implanted into the epidural space in the spine. The body of the device, often referred to as the "brains" or the "battery", as it serves both functions, is about 1.5" across, and is generally somewhere in the middle of a rounded square and a true circle. These days, these batteries are only 1/3-1/2" thick and are curved to help them fit the contours of the abdomen. From the top of the titanium battery pack sticks out 1-2 pairs of wires. The wires are only a foot long and the last few inches have no insulation and multiple metal contacts on them. 

The Boston Scientific brand Precision Spectra model, sans wires (this is the brand I plan to have implanted):

The brain/battery is implanted in the buttcheek, side of the abdomen,  or back, generally into a "well padded" area, right below the skin. The wires, or leads, stick out the top of battery/brains (you can see 4 little round white ports on the right side top on the above picture- those are where the leads connect to it) and go up your back, under your skin. The last few inches, which have contacts on them, are fed between vertebrae into the epidural space of the spine, allowing for current fed through these wires to interact with the portions of the spine that feed pain sensations to the brain. 

The SCS works to control pain through what's known as the "Gate Theory" of Pain Management. This is basically that if the "gate", or spinal cord, is wide open/unblocked, pain signals can reach the brain uninterrupted. But if you close the gate by somehow interfering with the signals on their way up the spine into the brain, then the brain can not feel the pain signals as intensely, or sometimes at all. The SCS closes the gate using an electric current to confuse the nerves. Instead of the pain signals reaching the brain, the brain feels paresthesia, or a non-sensation that many people describe as a light buzzing similar to having a cell phone on vibrate ring in their pocket. If the SCS is implanted for back or leg pain, this feeling extends from the bra band (T8) to the toes. They can also be implanted in the neck to control upper back and arm pain and the sensation of paresthesia extends from the neck down and fades out by the low back in most patients. 

The sensation of paresthesia does not interfere with normal sensation. Some spine injury  patients actually find they regain normal sensation afterwards. This is because before, the brain was completely overwhelmed by pain signals. Once the paresthesia kicks in, the brain is dedicating a lot fewer resources to the feelings from that region and thus has the resources left over to notice normal feelings like the sensation of warm water flowing over your skin or a breeze on your leg. 

This freeing up of brain resources also means that the SCS treats other symptoms aside from the pain. Memory and concentration improve, many people regulate their weight better as they can feed themselves better and exercise more, and for CRPS patients, there tend to be fewer issues from a malfunctioning Sympathetic Nervous System. 

Upcoming: the personal story of my journey through the SCS process, and more info on CRPS treatments and coping techniques. 

Monday, November 11, 2013

Wait- what did you just ask me?!

My father turned 50 today. (Yes, I'm 26. I have very young parents. Grandparents, too.) Last night dad had a big blow out birthday party at my parents home with over 40 guests. Thankfully, my parents home is plenty big enough for that kind of party, so I could manage to maneuver fine even with the extra width of crutches. I made the rounds, as I knew nearly everyone there, even Dad's work buddies since I briefly interned at his company. I got all the normal "How are you?"'s, as expected, followed by the also expected, "How's the hip?" Breaking your hip 3 times before the age of 25 tends to make you the topic of gossip, so I'm used to that one, too. My standard answer is, "Still attached." Most people chuckle a bit and nod knowingly.

But after the normal questions, I kept getting asked a third question. It was one that blew me away that people actually asked.

"How's the pain?"

Most people tend to have issues acknowledging pain disorders. I get asked all the time about my hip, because broken bones and orthopedic issues are normal enough that even though what I deal with is a bit more extreme than normal (though nowhere near what some people cope with), people can relate. The pain, though? Most people have nothing to relate to it. I barely remember not being in pain, since I've spent 1/3 of my life in bad pain. Yet people almost never ask how I am in that regard. My biggest disability is the elephant in the room. I didn't quite know how to answer and found myself stumbling through.

I've been trying to figure this out. It's just... weird. Kind of unsettling, to be perfectly frank. Now to wrap my brain around all of this.

Friday, November 8, 2013

Math Sucks

In a fit of stupidity, I decided to play a bit of a numbers game with myself. I had made the joke that my medical smorgshiboard made me 1 in a million. Then I realized that while I knew how rare some of the weirder things were, I didn't know all the stats. This is where the stupid came into play- I decided to not only look everything up, but to also do the math.

....Math, how you have betrayed me.

CRPS/RSD- about 1 in 5,000 (this is an average of 3 or 4 different studies)

CRPS type II is additionally only 1 in 10 CRPS patients

I'm now up to 1 in 50,000.

Monostotic Fibrous Dysplasia- about 1 in 30,000 (it could be as high as 1 in 15,000, no one's really sure as many cases go undiagnosed- we're going to go with diagnosed cases for fun here)

Doing the math? We're at 1 in 1.5 million.

Autoimmune disease- as my AI issues don't come with a true, firm dx yet, I looked up the general incidence of autoimmune issues in the general population, so- 1 in 12

Acid reflux- this one was tough to nail down, but the most logical stat I found was 1 in 22 for daily reflux. I saw stats saying cases as severe as mine are far less common, but I'm going with the smaller numbers here.

Gastroparesis- about 1 in 15

IBS-C- I chose to go with the incidence of IBS in general, as it was an easier stat to obtain, so about 1 in 10.

Still doing the math? We're now up to 1 in 59.4 trillion. Trillion. And sadly, this is mostly conservative estimates. Very conservative. Redoing the math using the less conservative ends of the ranges put me well into the quadrillions. I also have not included all the weird little issues I have, like tachycardia, thoracic outlet syndrome, overactive bladder, and more, as these are all considered symptoms of bigger syndromes. (Heck, half the time we can't figure out if things belong to the CRPS or the autoimmune issues.) I now feel an urge to boycott math. Sadly, the world doesn't much allow for that particular boycott. Nor would my mother, the mathematician. Instead, I'll be petting some silk yarn and looking through pattern books. I might even bust out the bag of angora fiber that's waiting for me to have the skills to spin it. Petting angora fluff always makes the world a better place.

Wednesday, November 6, 2013

Good family are worth their weight in gold

Growing up, I was decidedly not very close to my mothers sisters. My mom is one of 7 children- her 2 brothers I've never met. Four of the five sisters lived here in town when I was a kid. (One of them moved away 2 years ago.) But despite having 4 of the 7 kids in one place, there wasn't much closeness between them. I remember dreading spending time with moms family, as my cousins were much older and bigger and frequently broke my toys. 

Throughout my teens, things slowly began to change, as the sisters began to spend more time together. But what really drew the family close was the death of the oldest sister, my Aunt Jayne, who lived in a convent out of town. (She was a Catholic sister.) My mom and the 3 aunts from this area all traveled to the convent and spent weeks there. My mom actually wound up staying the entire summer, spending 2 months living in a semi-cloistered convent after my aunt Jayne begged her to stay. Jayne passed on young, in her early 50's, from cancer. Despite the fact that she had lived away her entire adult life, doing only what Mother Superior allowed, her death left a hole in the family, and the wagons circled close. 

Since then, the family has become close. I can call my aunts when I need to talk or need help. They support one another, call each other, and text each other non-stop. It's still rather novel after growing up without this side of the family being close, but it's amazing all the same. 

These last few months, the signs of this closeness have become obvious. When I got my stomach bug last week and both my parents were at work, I was trapped in my house with nothing to drink (I normally only drink water or a very heavy vegetable juice blend that sounded disgusting). So I called one of the aunts, who was able to pick me up Sprite and drop it off on my doorstep. This same aunt has talked me through the process of unemployment after I lost my job a few months ago. She's been a rock lately. 

I'm now facing a spinal surgery this fall and there's a good chance part of the procedures will occur while my parents are gone on vacation. Since they are normally the ones who come over to help me around the house, I thought this overlap would leave me panicked. But.. No. I'm a bit worried, but I know I have my family. Couldn't ask for more. 

Saturday, November 2, 2013

Finally, puking has a purpose

"24 hour bug". It's a phrase guaranteed to make you quake in fear. They cause issues with existing health problems, generally leave you miserable, and the vast majority seem to involve spending days in way to close of proximity with the porcelain throne.

Since taking immune suppressing meds means, well, I have not much of an immune system left to attack invaders, I tend to catch All the Things. Which in turn means that while I love kiddos, I generally avoid large gatherings of the. Dumb me not only handed out Halloween candy this year, but I then reached into the same germy bowl, pulled out a piece, and ate it. Without washing my hands and the wrapper first. Lesson learned.

After spending 2 days nauseous and generally feeling blah due to puking up all my meds yesterday, I looked A Site today. Hair oily and sticking out. Teeth still unbrushed for the morning. PJs that I've been wearing 24/7 for 2 days.

Then it happens. My doorbell rings. I glance through my window next to the door and can tell it's 2 people but can't see more than that. So I open my door, leaving the glass storm door firmly shut, and see two women I do not recognize. A pamphlet is promptly shoved in my face as they start babbling about being saved. Now, I have nothing wrong with religion of pretty much any color, so long as it doesn't hurt anyone. I'm very much live and let live on religion. I don't shove my faith in your face. Please don't do so to me.

So, feeling snarky, contending with a stomach bug and Aunt Flo, I glance at the woman, make a retching motion, and mutter in my sickest sounding voice, "I'm contagious." I have never seen someone scuttle in the opposite direction  so fast! Finally, puking has a purpose.

RSD/CRPS- Symptoms

Quick edit to Part I:  I accidentally left out one thing yesterday. CRPS can go full body, affecting from the top of the head to the bottom of the feet. My doctors and I assume this is a likely possibility for my future.

CRPS Awareness Month part II. And yes, there will be at least 5 "parts" to this, because it's a complex and rare disease. There are entire, huge, fantastic web sites that don't cover everything. I've chosen to cover what I'll be covering for several reasons: one is because I suspect some of my family read this blog and I know a few good meatspace (non-internet) friends do, and I want them to know these things. The second? CRPS is a rare, but underdiagnosed disorder. I want patients who are wondering to have another source of info, coming from a patient. Third? I have an atypical presentation of the rarest form of CRPS, so I want others to know it's not always textbook..


The symptoms of CRPS are so wide and varied, it's a bit insane. This is all due to the damage to the Sympathetic Nervous System. The first and foremost, though, is the obvious extreme pain. The vast majority of patients report burning pain specifically. In fact, every doctor I've worked with said the fastest way to spot a CRPS patient is that they'll walk into your office, sit down, and say something along the lines of, "I feel like I've been dipped in gasoline and lit on fire." I feel this type of pain, but not every day, and I did not feel much of it at first. My meds seem to keep it mostly under control, but when it crops up, it's mostly in my feet and lower legs. I have a suspicion that without all the lovely meds, it would be continuous and much more wide spread.

I've also personally noticed a wide variety of other types of pain. The most crippling variety I personally feel is the sensation that someone is breaking my bones over and over with a pickaxe. This was a non-stop issue until I began Sympathetic Nerve Blocks (more to come on those later in the month), now it rears it's head for a total of about 1-2 hours a day in varying intensities (mostly fairly mild comparatively) on an average day, upwards of all day in severe intensity when things get bad. This is the pain that worsens first, flares first, and gets the pissiest when I attempt to fully weight bear on the right side.

The most annoying type of pain I feel every day, and second most crippling, is the "itching". I call it itching sometimes because, at it's mildest, that's what it feels like to me. An intense itch, like the type you get when you're wearing uncomfortable cloth that's too rough against your skin. As soon as my legs get mad, be it cold, the texture of what I'm wearing, too much weight bearing, getting wet, a stiff breeze, a shift in barometric pressure, anything, that feeling intensifies. Next on the intensity scale for "itching" for me is pins and needles. Because there's nothing more fun than the sensation that someone lined all your clothes with ultra fine needles. Oh, wait, yeah there is- when it ramps up one more notch and feels like barbed wire instead.

Once I reach the point where all my clothes feel like barbed wire, shifting and grabbing at me with every step I take, I either switch to ultra soft fleece pants or switch to using my wheelchair. Or both. My mom can pinpoint exactly when I reach the barbed wire point just by watching me. She says I hunch in, grind my teeth, my eyes look sad and pissed, and I grab at the front of my pants legs when I'm standing still.

Considering the variety of pain types I feel, I'm sure other CRPS patients experience their own variety as well. No 2 CRPS patients are identical.

Also on the symptom list are the direct circulatory related issues. CRPS interrupts proper function of the SNS, which in turn interrupts the blood supply, skin growth, hair growth, nail growth, and temperature regulation. Portions of the body affected by CRPS will experience a wide range of issues. Skin will alternate between thinning and thickening in the beginning, though as the disease progresses, thinning is far more common. I no longer have, nor can have, calluses on my feet, and thus get blisters from well broken in shoes that I wear every day. My skin is extremely thin on my ankles and feet and portions of my lower legs- these ares will peel very easily. Hair on affected areas will grow erratically, growing quickly and thickly one day and sparsely and thinly the next. Nails behave in a similar fashion. Some people lose their hair and/or nails all together on affected areas. Bruising is also common. 

Random bruises on my legs:

Discoloration and swelling:

A wide variety of other issues can result from the damage the Sympathetic Nervous System. I'm not going to go into all of them, because the list can get a bit long, but the biggest one I deal with moderate tachycardia, or extremely rapid heart rate. The average healthy adult has a resting, but awake, heart rate of 60-80 beats per minute (bpm). My sleeping pulse? 90+ bpm. If I exercert myself physically, I can top out at 150 bpm. I now take meds 3 times day to control this as it creates the feeling of suffocating if it goes untreated. My doctors actually thought I had uncontrolled asthma for 8 years.

Next week, Part III will cover coping techniques. 

Friday, November 1, 2013

My Story- RSD/CRPS part I, the basics

November is RSD/CRPS Awareness Month. I know I mention it a lot, as it is my biggest physical impairment, but I don't think I've ever given a proper run down on it. So throughout the month of November, I'll be posting about the basics, treatment options, coping, all the fun stuff.


CRPS, or Complex Regional Pain Syndrome, is the current name of the disease. It is a rare neurological disorder that affects the Sympathetic Nervous System (SNS), wreaking havoc on the body and causing extreme pain. In fact, CRPS is currently recognized as the most painful non-terminal illness as ranked on the McGill Pain Index, with a score of 42/50*. For reference, unmedicated childbirth is about a 35/50. The MPI was done in 1971* as a way of creating a reference point for physicians but has been updated over the years.


CRPS is a response to an injury in the body. The injury can be as minor as a stubbed toe or as major as a surgery or spinal damage (note: a very small percentage of patients have no known starting injury). Typically, when there is an injury, the nerves respond by sending out pain signals. Once you heal, the nerves stop sending pain signals, so you're brain no longer fears for its' safety. When CRPS develops, the nerves never stop sending pain signals. In fact, it becomes a viscous cycle and it feeds on itself as it endlessly loops.

The easiest way to think of it is this- ever slam your hand in a car door? That moment where you're bent over, clutching your hand, in so much pain you can't function? Now imagine your nerves become trapped in that moment, looping it endlessly.

CRPS is typically a localized disease. It will often set into the portion of the body where the injury is. In my case, I developed CRPS following Hip Surgery #2, and it was originally confined to my right hip. CRPS, though, enjoys spreading, especially if there is a further injury to the body. So with every passing surgery, the area affected by the CRPS spread and I now have it from my waist to my toes (moderate on the left side, severe on the right). CRPS most often affects extremities, but it can, and does, spread to include the entire body and internal organs. I've heard of cases where it has spread to the lungs and digestive tract.

Both graphics, as well as some dates, came from the website RSD Hope, which is one of the best information and support websites out there for RSD/CRPS patients. 

Tomorrow: Symptoms.