Dictionary of My Life

Let's face it, I live in a world of TLA's. That's Three Letter Acronyms ;) . I never have posted a comprehensive list of what these medical terms and TLA's I use so often mean. Many of those coming to my blog are familiar with some of these health issues, but not all, and certainly not all of the various treatments I'm on for everything. So, a big bad list of everything! Okay, it's not quite everything, but I'm going to try!

RSD/CRPS- A neurological disease in which the sympathetic nervous system gets caught in a pain loop and winds up basically burning itself out. This causes extreme pain (CRPS holds the dubious distinction of being the most painful non-terminal illness known to science), blood flow issues and skin discoloration (what I call the Zombie Effect, or purple and white mottling, and Neon Pink, or spots of bright, bright red, are the most common), temperature regulation issues in the affected region(s), skin, nail, and hair growth issues, hypersensitivity to all stimuli (also known as allodynia), a variety of other issues.

Fibro- Short for Fibromyalgia Syndrome, or FMS. A neurological disease in which the nervous systems become hypersensitive to all stimuli. The overactivity in the nerves causes widespread pain. Issues like headaches, IBS, tremors, myoclonic jerks (a type of nerve malfunction that causes major muscle spasms strong enough to move the entire body), and more can occur with fibro.

IBS- Irritable Bowel Syndrome. There are three types, C, D, and A, which is short for Constipation, Diarrhea, and Alternating, respectively. 

Tachycardia- Overly rapid pulse. An average adults resting pulse is about 60-70 bpm (beats per minute). 

AI- Stands for AutoImmune, a classification of health issue where the immune system attacks the body instead of just foreign invaders like germs. Diseases such as Rheumatoid Arthritis, Psoriasis, Lupus, and more fall into this category. 

RA- Rheumatoid Arthritis. A form of autoimmune arthritis that causes joint destruction that can be rapid and severe. 

OA- Osteoarthritis. This is the standard form of arthritis that comes with aging. It is caused by wear and tear on your joints from overuse wearing down the cartilage, or padding, in the joint. It is commonly treated with oral anti inflammatories, most commonly NSAIDs (non-steroidal anti inflammatory drug) like Celebrex, Naproxen, and Meloxicam. 

FD- Fibrous Dysplasia. A rare genetic skeletal disease that occurs in about 1 in 30,000 people. A genetic flaw in (a) bone(s) causes the good, hard bone tissue to break down and leave behind a honeycomb like structure. This can cause the affected bone(s) to bulge and/or break, which can result in severe disability depending on location and severity. There are two forms, Monostotic (MFD) which occurs in 1 bone, and Polyostotic (PFD) which occurs in multiple bones. FD most commonly affects the "long bones", which includes the large bones in your arms and legs, ribs, and the skull and facial bones. 

SCS- Spinal Cord Stimulator. This is an electrical device that is implanted into the spinal cord through an (usually) outpatient surgery. A small battery pack is implanted in the back, side, or stomach, in a fat pocket close to the skin, and wires are fed into the spine. An electrical pulse is fed through the wires to help control pain caused by CRPS, Failed Back Surgery Syndrome, other back issues, diabetic neuropathy, and more. Patients use a remote control to control the intensity of the stimulation. 

SNB- Sympathetic Nerve Block. A type of injection done on the nerves where they branch off from the spine in what's called a Ganglion Bundle. These Ganglion Bundles branch off on the spine between the spine and the internal organs. These injections involve using a long, flexible needle to reach the ganglion bundle, then a mixture of medications including a numbing agent and an anti-inflammatory are injected to reduce inflammation. This can help reduce symptoms for patients with CRPS.

SGB- Stellate Ganglion Block. These are basically a SNB but done in the neck region in order to get to the nerves that control the arms and hands. These can be done from both the back and the front and use a much smaller needle than SNBs, as the nerves are closer to the surface. 

PT- Physical Therapy. .. Need I actually define this one? 

WWPT- Warm Water PT. Done in a heated pool, usually heated to 86 degrees F or warmer. My local therapy center heats to 89, which is comfortable even with the CRPS. 

OT- Occupational Therapy. A type of therapy used to help people overcome and work within limitations caused by a disability or severe injury. While PT works on gross motor skills, OT works on more fine motor skills and tasks of daily living. 

Forearm Crutches- Also known as Lofstrand Crutches, these are the most commonly use variety of crutch in the UK and Europe. In the US and Canada, underarm crutches are more commonly used, especially in cases of short term injury, as they are considered to be more stable. Forearm crutches are easier to negotiate and are less likely to cause nerve damage in the upper body, however, which makes them popular with those with permanent disabilities. 

Immune Suppressant- these medications suppress various functions of the immune system in order reduce inflammation and damage to joints and organs in those with autoimmune diseases. Many of these drugs were originally created for use in chemotherapy.

Biologics- A class of immune suppression made using recombinant DNA. There are a variety of different mechanisms these drugs use, which means different patients respond to different ones. Because these meds are more fragile than most, they are given via injection or IV infusion. They are more expensive and there will not generics of these meds anytime soon (great explanation as to why here), but they provide excellent options for patients who do not respond to chemo-type immune suppressants. Remicade, which I receive infusions of every 6 weeks, falls into this class of med. 

Sooo... at this point, I'm sure I've left out something. Actually, more like multiple somethings. But this covers all of the tags I'm currently using and then some. But, if there's ever a term I use that you don't recognize, feel free to ask. I don't assume people know what all these crazy terms mean- quite the opposite, in fact. 

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. 

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.

I think Prednisone ate my knitting mojo....

As I've spent the last 2 years trying to find the right balance and mix of immunosuppressants to give me ideal symptom relief, I've spent a good bit of time on prednisone. The steroid is a great immune suppressant and it works perfect for temporary situations, but it's dangerous to take it long term. Since I've been on it 6 months or more now, my rhuemy and I decided we needed to get me off of it. I've been having some vascular side effects (it's weakening the capillaries, allowing them to be far too easily penetrable, meaning meds that are injected but not into a vein are getting sucked up and I'm bruising and I'm bleeding too easily, plus blowing veins when dealing with IV's). So I weaned myself off and am now dealing extra symptoms. More arthritis, more pain, more skin issues, all of it.

So imagine my surprise when I suddenly felt the urge to Make Things. Not just the woodworking and sprucing up the house I've been doing, but I've been wanting to sew, make jewelry, knit, and crochet. I honestly don't think I've completed a single project this calendar year since I've spent most of the year with major arthritis issues. Hands and wrists that don't bend don't lend themselves to crafting, especially crocheting (lots of wrist rotation with that craft).

I listened to my Inner Crafter (which is about 10 years old most of the time and tends to insist shiney things are the best) and picked up a skein of Project Linus yarn that was still in a box from moving this spring. It's cheap acrylic boucle in blue and white, but perfect for a super simple crochet project that I can pick up and drop with no warning. So I started doing a Corner-to-Corner Blanket. It's fun. I'd forgotten that crochet and knitting can be fun- they had been mentally feeling like work for months now.

Complete and utter weirdness. I knew prednisone had weird side effects, but eating crafting mojo? New one to me! Been stuck dealing with weird side effects lately, or just a lack of crafting mojo? Working on some Project Linus projects? (All little kids need blankies!) Feel free to share! Also, if you're a Raveler, feel free to look me up there- my Rav name is DaapAteMySoul.

Remicade and RSD/CRPS

As part of my health issues is weird autoimmune nonsense (technical diagnoses are Seronegative Rheumatoid Arthritis and Unspecified Connective Tissue Disease, aka "We have no clue what's actually wrong"), I take immune suppressing medications. I currently use 3 different ones: Azathioprine, Prednisone, and Remicade. The Azathioprine controls the issues I have with swallowing, helps prevent weight loss, stimulates my appetite, prompts saliva production, reduces my sun sensitivity, and a few other things. The prednisone is meant to be temporary- I'm actually in the process of coming off of it. We started it to help control things while I made the switch from methotrexate (an extremely common immunosuppressant) to the new meds and I'm very slowly tapering off.

Remicade is a biologic medication. You see commercials for biologics all the time on American TV these days, for some odd reason. The typical order of meds tried for autoimmune disease is Plaquenil (an antimalarial that modulates the immune system versus straight up suppressing it- it makes me vomit profusely), then methotrexate, sometimes the next step is Arava (not recommended for women with intact, working reproductive organs), then on to the biologics. Biologics leave you with little to no ability to fight off infection, they're very expensive at about $3,000 per infusion, and they require extremely close monitoring. Commonly prescribed biologics include Humira, Remicade, and Enbrel. Some come in an autoinjector and some must be done via a several hour long infusion at a chemo infusion center. I'm lucky- my rheumatologists office has it's own infusion room complete with goofy TV playing and very friendly nurses who know their patients inside and out.

Today was Remicade infusion day. I go every 8 weeks and see the doc, have blood drawn, then have a 2 hour infusion. We upped my dose today by 33% in an effort to get better control over the arthritis. Currently, the arthritis is very inflammatory, causing massive fluid buildup in every single joint in my body. The biggest hassle, though, is the elbows and wrists. The fluid build up impinges my nerves and causes pain and numbness in my hands and arms. Drives me bonkers, since it makes typing, net surfing, knitting, spinning, and even cooking more difficult. Since today was my 4th infusion and most patients see big results by 1 week after the 3rd, we upped the dose some. I've got my fingers crossed that this works.

The weirdest part, though, of the infusions is that once the Remicade hits my system, my RSD/CRPS pain flares immensely. I actually have to take extra pain medication in advance of the infusion to cope with the pain. The pain levels take about 1 week to completely normalize. Considering the fact a normal day for me means pain levels at a 5-6 out of 10 and a bad day is a 6.5-8, a pain spike means complete hell. I figure I'll spend the next week working on my design portfolio, ensconced in my very comfy recliner.I just wish I could get some answers as to whether or not this is a normal reaction to Remicade for an RSD patient. But since RSD is fairly rare and Remicade is neither for the RSD nor a first line drug, finding an RSD patient on Remicade has proven impossible thus far. My Rheumatologist has no clue either. La sigh. The fun of a rare disease.

Surviving Germ-ageddon

After spending the last couple of years on immune suppressive therapy, I’ve picked up some tricks to avoiding infection. These tricks have come from both my own experiences and the experiences of my friends from my fabulous support group, The Chronic Bitches, who take similar medications. Being germ-a-phobes is not a choice for us, it’s a necessary survival tactic. I consider it training to survive the zombie-pocalypse, so I can avoid being contaminated by infected brains. Since fewer zombies on d-day means less beings trying to eat mah brainz, here’s some of the tricks of the trade.

1)      Wash your hands- often. It seems obvious, but surprisingly enough, I notice probably 30% of adults leave the bathroom without washing up. Make sure you wash them correctly- I like to look like a crazy lunatic and sing a verse of “Old McDonald” to myself while I wash. It’s exactly the right length in time. So are most verses of most children’s songs, to be honest. Bonus points are given for really weird songs.

2)      Wash your hands even more often. Yep, this one really gets 2 slots. The things we don’t think about can get you. Hands must be washed not just after going to the bathroom and before eating, but also before touching your face or any other mucus membranes. So- no rubbing your eyes, rubbing your nose, etc, before washing up.

3)      Don’t hesitate to teach those around how to cough and sneeze properly. Hesitation can mean a hospitalization- totally not worth it in the end. Everyone should cough or sneeze into a tissue then wash their hands thoroughly, or cough/sneeze into the crook of their elbow. This best controls the germ spread.

4)      Never share food or drink. It’s fine if someone eats/drinks after you, but never eat/drink after anyone.

5)      Only kiss people you really trust to know if they’re sick or have exposed to germs. Yes, I know not frenching random strangers takes a lot of the fun out of life, but you’ll deal. Besides, you never know when one of those people will turn out to be a zombie.

6)      Save certain fingers for certain tasks. Weird sounding, I know, but it really does help. For instance- my pinky and ringer fingers are for touching public surfaces. If I need to open a door with a handle, I pull the door open using just those 2 fingers if at all possible. I press buttons, like handicap door open buttons and elevator buttons, using the back of my hand. This leaves my middle and index fingers and thumb far cleaner, so that if I do mess up and rub my eyes (a bad habit I have yet to break), I’m far less likely to make myself sick.

7)      Never eat food from a buffet. If you must, like at a family dinner, make sure you are the very first one served. Just pretend you’re royalty if it makes you feel better. Bonus points if you wear a tiara.

8)      Never eat food prepared by someone who’s sick. Doesn’t matter if they say it’s “just allergies”. The junk they’re sneezing out is still contaminated with germs

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I’m sure there’s a lot more tips out there, but those are the ones that popped up into the front of my mind. Enjoy!