Yes I changed it from the F word, but dang you Nutella. After nearly 2 months of lacking the ability to east almost anything, I’m down to bagels w/ Cream Cheese, chicken soup, matza, yogurt, and essential nutrient smoothies, we have finally found a doctor willing to look at me. But he’s up at UNC Chapel Hill, aka a god forsaken 6 hours away. Now 6 hours isn’t normally a problem, but I haven’t been able to eat or travel for over a month. Most of my days have been spent with either digestive problems or rather violent vomiting followed by abdominal pain. After an endoscopy and colonoscopy revealed nothing 2 weeks ago, Not even an ulcer or redness, I was sent to the ER for bleeding potentially from my colon. Suddenly I have Colitis, aka a swollen colon as my very high brain dubbed it, and bleeding and tremors again. Of course the ER doctor suggested, once again, psychotherapy or CBT.

As a general note here, I’ve been under a psychiatrist care for over a decade. I’ve already been through all the therapies and my doctor disagrees that that therapy would help. Why? Because this isn’t in my head. Despite what people seem to keep thinking, when I have barely eaten for almost 2 months and have stayed the exact same weight, have vomiting despite taking Zofran, muscle spasms while at rest, and red rashes appearing out of nowhere, there is no chance that it’s all in the head. And this is frustrating. As a woman, I am rarely listened to regarding pain or my health. I get dismissed and have been by may doctors. I get assumptions based on the fact I have Anxiety and a history of Panic disorder. But that actually means I have extensive experience dealing with panics. My panic attacks include full body paralysis, emotional breakdowns, and usually results in laying on a floor for a while. When I’ve had anaphylaxis reactions my throat literally starts tightening. I get a little itchy, start coughing, and cannot swallow. It’s not something I panic over because I do have Epi-pens usually with me, my reactions are not instantaneous, rather a slow closing, and I’ve got so much practice with breathing exercises. I get doctors who think I just want pain medicine. I don’t. I want an answer, I want something to finally help. I’ve taken myself off ALL pain medicine with the exception of occasional THC/CBD and my tizanidine muscle relaxers, which work for exactly 4 hours on a good day. So now I have people making assumptions without even knowing me.

But back to today’s adventure. After being in the ER all night last Friday, I was given a new smooth muscle/stomach muscle relaxer to help prevent the nausea and painful vomiting. I still did have a middle of the night vomiting adventure last night, but apparently this doesn’t solve the problems, only reduces. The ER doctor also had to give me Valium to stop muscle spasms post CT contrast injections [teeth chattering followed by whole body spasm for 1 1/2 hours] which I hated because it’s like I’m not in control of my body anymore. So post adventure I have 2 huge bruises on my inner arms from a monster IV needle, 18G, in case the needed to give me special fluid or blood, and a nerve prick, so typing and writing are quite a difficulty, and I had to have more blood drawn Monday for another doctor.

This new doctor, Dr. P, didn’t dismiss anything I said on Friday (I came back Monday for the blood draw). He was recommended by a family friend, Tracy, whose family went through something similar years ago with their daughter. He was the doctor who figured it out and helped her. Once I met with him, he immediately didn’t dismiss my concerns or symptoms. He actually had ideas and understood what we went through. He had so many patients coming to him after months or years of being ignored for saying something was wrong, and he’s the one who said, “yes, something is actually wrong, let’s fix it”. He asked about my sleep, no one has ever asked, and immediately had a concern and questions he wanted answers to. That’s the kind of doctor I need. He encouraged us to go to this research doctor in UNC, and wanted to WORK TOGETHER TO HELP ME. WHAT? THAT IS UN HEARD OF.

Anyway, so we traveled up here with my mother driving pedal to the medal the whole way. Got settled in. My mom brought me some peanut butter and Nutella to put on my bagel. But wait, here’s the key factor: I’ve had PB about a week ago but Nutella was almost 6 months ago. So when I put it on my bagel, excited to see if I could taste it, something went wrong. The inside of my cheek began to swell and hurt. Huge, blood red swollen lumps appeared inside. It hurt to talk, swallow, anything. Mom rushed to get me salt for salt water and oil [an old trick I learned after an allergic reaction to icy hot on my leg. Olive oil removes the residue]. I brushed my teeth, swished warm salt water, and sucked/swished and spit with butter pats… Normally I would take benedryl and be fine, but leading up to this new Immunologist, I cannot have histamines prior to going. We stayed calm and relaxed until I stood up and couldn’t swallow or breath well and the tunnel vision started. The only other time I’ve felt this way was during my sulfa drug allergic reaction as Nick got me in the car and headed to Urgent Care.

We took off to the Urgent Care next door and got me in quickly. The doctor thought it was more panic but gave me epinephrine to reduce the throat swelling. Fortunately it stayed in the upper area but she did confirm it looked like an allergic reaction, especially in my face. She said she thought it was more panic than anything else. Let me be clear here, I know I can panic. This is all scary. However, if I had had a true panic attack, I would have been sobbing, shaking, and unable to communicate like I did. Suddenly having huge painful red lumps in my mouth and difficulty breathing alongside tunnel vision while staying calm breathing is NOT a panic attack. She did agree I needed to see this new doctor tomorrow and to keep my epi pen handy all night in case. After an hour or so of observation, I was cleared and sent home.

Apparently Ducking Hazelnuts now cause a problem. New rule for Jessie, NO NEW FOODS. I suppose living off bagels isn’t the worst thing, but it sure is boring…

In the latest and greatest of my eternal adventures, I’ve had the distinctive pleasure of experiencing not 1, not 2, not even 4 new symptoms and experiences, but 5! For some reason my stomach has decided to reject food and prevent me from eating. So, naturally nausea and vomiting follow, along with difficultly swallowing and a burning sensation, and reflux. Plus a lower abdomen pain and other issues. It feels like dragon fire inside, but I can only assume dragons have better throat protection than we do. As a general note, hurling up raw acid or just water burns, so try to swish with milk to save the throat and teeth…

After a trip to the Gastroenterologist, and even MORE blood work [ouch again] ,everything’s negative. So we had to endure something no 25 year old [without a HIGH risk of colon cancer or actual cancer] should even go through…The clear liquid diet. Let me try to break it down for the non 50+ squad. The day before a glorious colonoscopy, you have to consume only clear approved foods and cleanse your system with some horrible concoction of “alleviating means” and other fun stuff. The positive side for me? I’ve barely eaten in a month so I wasn’t hungry [the most common complaint]. I also now hate Jello. I never want to see it again. There are only a few items you can consume and other things they recommend. Clear fluids and juices. But NO red, purple, orange, or blue dyed foods [and naturally anything dyed black]. So apple, white grape, lemonade, lime, pineapple, mango, etc. They suggest pedialyte and Gatorade too. And clear broth. I also used white lifesaver mints. I also now hate pedialyte after this adventure. It’s just salt…even though I can’t taste for shit, it’s salty. My mouth can tell. Too salty, too sweet, is too much.

So anyway, I began the adventure, of making everything disappear from me. After one bowl of jello and my first stuff to clear myself, the pain began. Cramps on cramps on cramps. Then you gotta drink like a gallon of this nasty stuff that kicks it into gear. That’s when all hell broke loose. Vomitting, nausea, weakness. After a violent episode and a call to the doc, we ended the stopping the stuff, I was already empty to begin with. My parents carried me upstairs since my body had given up and I slept until we had to go back to the doctor. The bad part is you can’t have ANYTHING to eat or drink in the morning so I was dehydrated, my veins wouldn’t cooperate, and the IV ended up in my hand [OUCH] (it took 2 tries and lots of bruises).

Also, carrying your adult daughter into a waiting room full of much much older people is quite a scene. The good news? Everything came back normal. The bad news? Everything came back normal. This means no answers despite still being unable to eat anything of significance [bagels, liquids, and nutrition smoothie don’t count for much] and almost constant nausea, pain, weakness, and dizziness.

The most puzzling factor is that my weight has stayed exactly the same due to edema. My Massage therapist whose trying to eliminate the fluid says its pretty gnarly. All over swelling, retention in random places, skin discoloration, and no pitting. Unsurprisingly, there is no edema specialist out there…

As a general rule, if you ever have to do a colonoscopy, take the entire day off…

I was trying to describe what it was like to have PCOS cramps and ovarian cysts that ruptured to Nick. I was attempting to think of ways to assimilate the pain to a guy whose never had a period. So I offered “Remember that time you were drunk and fell backwards on a piece of glass and sliced your back, then we poured alcohol on it to clean it? Kinda Like that”
His response? “Ya no, don’t use that petty injury to explain what you go through. That’s bullshit. It’s way worse than what I’ve experienced” “That piece of glass wasn’t shit. nothing like what you’re going through. that was a dumb drunk accident
Ladies I think we have found a winner.

Sometimes I try to explain the pain the way it feels, sharp knives being hammered in which jackhammers, or pins and needles except the needles are on fire, and the pins are on fire, and everything is on fire, the whole enchilada. Maybe I haven’t experienced a knife stabbing me, but I can only assume that’s what it feels like. They ask you those questions on your pain surveys at the doctors office. “Stabbing, Shooting, Burning, Numbness” and so on and so forth. But in reality what do we have to compare this too. the same can be asked for a pain scale. What do we compare it to. Childbirth if you’ve had children? A broken bone if that’s happened? I haven’t had either of those things. Sometimes I think it’s just up to personal tolerance. Some days the pain is less and I can’t tell whether I’ve just adapted to this level of pain or if it’s actually less.

Maybe someone out there can build a better scale, because as of now, the Mcgill Pain Scale is the only one out there to rank things for us…

So during my infusions of ketamine I had some pretty whacky words and thoughts that popped out. I though I would list them here.

But first, since apparently no one has been able to explain what it’s like, I guess I will. it is important to note, we chose this because, after careful consideration it would help me the fastest and most effectively.

First of all, I had an AMAZING medical team. Great nurses [who all got crazy nicknames] and fabulous doctors with lots of positivity. They were cautious and intelligent through the entire process. Ketamine has been used for years for surgery, emergency responses, and other treatments. The IV version I received was slightly different than the “street” stuff people use for fun. This works much faster and works more on the brain than anything else. My first does was conservative at 80mg over 3 hours. This was a slow infusion with a hilariously beeping machine, an EGK machine that couldn’t read my shallow breathing [despite my fabulous heart rate with NO extended QRS rhythm, despite what the research group said one of my medications would cause], an IV, and oxygen tube. That’s a ton of cords. I got really cold the entire time but my nurse, Nurse Yoon [I called her Nurse Sunshine because my very high brain saw her as a yellow light] kept wrapping me in blankets. The worst part was having to come in everyday and wait to go back with all the lights, noise, and people. The most intense side effect was my extreme light and sound sensitivity (we are talking the neighbors across the street and over a football yard away, including closed doors, sounded like they were mowing their lawn inside my head).

Anyway, I slept through most of day one, giggling and talking about the rainbow bunnies. That’s a good thing. Some people have nightmares or bad dreams, I had sunshine. Day 2, I was convinced they didn’t give me any because I was awake and had to pee the entire time [to all the nurses out there who have to help us with bed pans etc, I thank you and salute you]. I had my sunshine nurse, another nurse I dubbed peaches and cream, once again due to colors I was seeing. When I told her I was sure something was wrong because I wasn’t asleep, she looked at me as she gave me round 2 of sedation and said “sweetheart you have high eyes, your eyes are crossed, I know we gave it to you”. I called my other nurse the ocean [can you sense a pattern yet].

Day 3 was a higher dose, another nurse, I called her emerald because she had green eyes and green scrubs. At this point my third doctor stepped in a boosted the dose higher. During infusions, it feels like nothing hurts, you are floating in a sea of calm, cool, water, and everything is ok.

Day 4 was harder emotionally. Higher doses and another new nurse. Sadly I didn’t have a name, my mom did though. She wasn’t very friendly and quite bad at putting in an IV. She moved it twice, my veins were tired after 4 sticks on the right side, and the flow wouldn’t start, so I got saline burn from a bazillion pushing it in. And bruises from digging it around. I cried over celtic music…

Day 5 was the most intense. At this point I was begging for the ketamine to begin because of the instant relief I got. The IV stopped hurting. The leg pain stopped. The tremors stopped. This day I cried, I was emotional. Thinking about how nice it was for a week not to worry about work. I was also dealing with the fact that I may not be able to go back to work due to budget cuts etc. But I accepted it, and was re determined to go to medical school to help other people. Something else to note was I didn’t have glasses on and my vision was super blurry so everyone looked like blobs. My parents also traded off drop off and pick up, staying until I was under and coming back as we were wrapping up. My dad had to come hold a very emotional me’s hand while I attempted to explain why I was emotional. The next day I was laid off from work and was surprisingly handling it well.

Okay sappy stuff over. My side effects were peculiar. I lost my sense of smell and taste buds. I had horrible migraines and light/sound sensitivity. People moving were overwhelming. TV screens were impossible for almost a week an a half after day 1. Outside of that, I was Ok. No nasty nightmares, scary dreams, etc.

• Weird statements I made as a result of ketamine:
• When did they come and paint the walls fuzzy pink? they were white this morning?
• Oh look, you’re a sunshine.
• I know its OJ, but it doesn’t taste like anything.
• This tastes like an apple farted over a gallon of water and walked away.
• Can we listen to more yanni? No wait, celtic woman, no celtic thunder, wait yanni…Alexa, help.
• I need to pee.
• Where are all the pillows? (I’m laying surrounded by 4)
• I need to pee again.
• Why is the room moving? Am I moving?
• You didn’t give me any ketamine or sedative, did you? [my eyes are crossed and the nurse looked at me like a very drunk college student stating I haven’t had a sip of liquor tonight, to the police as I attempt to get into a bush, claiming it’s my car]
• I really have to pee.
• Celtic woman or celtic women? Is it plural? No it Irish so it doesn’t have to make sense.
• I don’t have toes.
• Ok I have to pee again, sorry.
• Can we go on a vacation? Like to the Grocery store?
• I need a doughnut, not because I can taste it,but because its so fluffy
• Rainbow bunnies ate my dream doughnut.

That was the saying my best friend told me. And I laughed for almost an hour.

In reality, we have to find humor in this. I try to find the comedy in the ridiculousness of it all. I mean really, we’ve got a jellyfish sting with a neurological pain condition, a hormonal problem, a slew of side effects from literally everything we try, and I walk like Bambi half the time with balance issues. But hey, I don’t have acne or pimples so that’s a plus right? And I haven’t had a head cold in 9 months! YAY [that’s like never happened]

Discussing this with Nick made me crack up laughing. I mean lets be real. Instead of me choosing to go on a wild adventure or riding a motorbike and crashing as a result, my body decided to crash and burn on its own. Instead of choosing to reduce my food intake for socially pressured reasons, I can’t eat much because my body has now decided it’s going to reject food. Instead of getting a cool tattoo and having a bad reaction to some kind of ink or pain in that area. But no, my body literally decided to make terrible life choices for me.

Any you know, I used to believe that terrible things came in threes, we are on like 20…not even a multiple of 3… So I suppose maybe there is a new rule OR maybe I am getting all my rules of 3 out now. I like to guess I am getting all the shitty stuff out of the way in the first quarter of my life. Maybe, since it’s still going on and going down hill is because I’ll live to be 104!

I’m going to just run with that and quote Nick everyday…that life likes to make the bad choices for me!

One of the things we rarely discuss is the actual cost of being sick. Think about getting a head cold, everyone gets one, to varying degrees. Some [very luck] people can power through it with 1-2 days of rest and some vitamin C and niquill. Others are down and out for a week basically dying [me!]. But outside of the physical exhaustion, there is the actual monetary cost. The loss of work, shifts, sales, and everything in between. Add to that the emotional cost.

The emotional cost of being sick, chronically or otherwise, is never really understood. I’m not a very public person when it comes to illness. I have always had to deal with a crap immune system, going down like the titanic over strep throat [every year, at least twice a year], and constantly being out of school due to one problem or another. When I graduated high school i realized I had missed almost a quarter of my high school experience due to all the time out from being sick. Middle school as well.

But one of the most poignant things is the monetary cost of all of this. As a result of this disease, I have not been able to go back to work since being laid off, despite trying my hardest to find a position that would work for me. On a side note, it’s been over a month since filing for unemployment and I still have yet to receive my APPROVED unemployment benefits. When inquiring how much longer due to rent etc, I was told to get a loan… Additionally, add in the thousands and thousands of dollars I have been charged for the recommended blood tests, exams, procedures, and the costs they “forgot” to tell us about, and now I am in the hole. And this is exactly what happens. It’s completely overwhelming. When I was making around 1k a week a $250-$500 procedure isn’t that bad, but when nothing is coming in, it’s a small fortune.

Let’s also add in the fact that I have over charged by 2 places, misinformed about the ACTUAL procedure cost twice, my insurance has vehemently refused to cover LITERALLY ANYTHING [i.e. blood work, medical necessities, medications, diagnostic procedures, physical therapy etc], and threatened with collection. The costs are ridiculous, the insurance charges insane, and if for some god forsaken reason the code is wrong, forget about them covering anything. Try to call to find out? They can’t tell you the cost, only you haven hit your deductible HASN’T BEEN HIT BECAUSE NOTHING IS COVERED. Need an urgent endoscopy because you can’t eat or drink anything? Forget it, it’s 2k plus, and even with insurance and if you need financial aid, be prepared to wait a month to find out and be continually harassed about it.

So where does that leave me? Emotionally distraught, relying on my parents at 25 for help, trying to afford an apartment lease I can’t break without a fortune, spending my grad school fund attempting to deal with this, and conserving costs wherever I can. And I am isolated, lonely, and mostly annoyed. Even on a low budget, I should be able to go out with friends and hang out. Go to the pool or watch a movie and pop some popcorn. Instead I am trapped at home or with someone 24/7 to assist me, bored from not being able to do anything, and tired from even trying to cook a simple meal [which for now I cannot eat]. When someone comes too say hi there isn’t much we can do.

But what is the real cost of all of this. If we take some time to think about how much support we try to show to children in hospital, or teens suffering through horrible cancers etc, it really is quite a lot. And that is essential for them. Actually, support is essential for everyone going through a horrible condition, illness, or anything really. So I have searched out support to help, but unfortunately, people like us tend to all be in the same boat of lonely isolation. Relationships are hard if not impossible, and it truly takes some INCREDIBLE people, no heroes, to stay by our sides and keep giving support. The emotional drainage, the physical exhaustion wears us all thin, caretakers, family members, friends, people who are desperately trying to understand but just can’t. [I like to describe this as getting into a car accident daily (surprise, you never know when its going to happen, so pretend you are driving a car 24 hours a day 7 days a week) while simultaneously having menopause and giving birth [or for the guys out there, falling off a cliff and hitting rocks for days on end] plus you know it’s going to keep happening and you cannot stop it (talk about a real depressing adventure).

So we’ve established a sort of cost, but there is one thing that is the MOST important. Staying strong and knowing that CRPS can hurt you, wear you down, drain you, beat you down, and try to drown you, but it can, and will not kill you unless you let it. And so we move forward. Always. And we never stop trying and we never give up.

Stay strong my friends.

Recently, I met up with a some other women who have CRPS just like me. It was a pretty interesting experience to hear their stories and how they have adapted and what worked to treat them. One of the things one woman told me was that the key to her treatment was hormone therapy. I thought back to a timeline of my two surgeries and had a realization.

Typically, a invasive procedure [under anesthetic or not, anything that pokes the bear] causes a flair up or can aggravate CRPS. However, after each of my two surgeries I was placed on birth control for my PCOS. The first time, when I was 14, I became so ill on the medicine after only 2 months I had to stop. Then we had mental health issues and I was placed on an anticonvulsant [among other things] which also just so happens to be a CRPS “treatment”. I’ve since stayed on it but a much lower dosage. But the important fact is that there was NO MAJOR FLAIR UP of my CRPS. Just general, severe resistance to pain meds and they were essentially ineffective on me.

During my second surgery, after another bought of ovarian cysts rupturing, I was once again put on birth control to help. I ended up having to keep trying different ones, but no flair up after surgery again. This time though, when I took a break from birth control to let my body rest, I had an unusual knee flair up that put me in braces and kept switching knees [right first them left, an obvious CRPS echo but I just kept walking on it]. After Physical therapy, a cortisone shot [that didn’t work at all, it made it worse], MRIs, X-rays, etc etc, I realized nothing was working and kept trying to work it physically. I was then put on a new birth control to see if this one would work, and magically my “knee pain, brace needs” disappeared.

So there seems to be a correlation to me. Now during this flair up, I am actively on a birth control for PCOS but it’s not working. My theory is that it is due to the fact that this was a nerve damage injury and my body has gone through so much shock that the CRPS got out of control before anything could or would help it.

One of the few treatments that has worked for me is Aqua Physical Therapy, which is apparently not covered by insurance since it is not “necessary”, despite the fact traditional PT won’t work for a CRPS case… That’s how I started to get some of my life back. Water can be a hard one because I am extremely temperature and texture sensitive, especially on the injured thigh/hip, so Vaseline and lotion are my best friends to protect my overly sensitive skin. Hell 4 minutes and 15 seconds [yes I timed it] in a hot tub gives me a “sun burn” look, even though it can feel really good [minus the bubbles].

Reflexology was my god send during this whole adventure. Something I learned and that continued to help me was my regular sessions with my Reflexologist and the use of reflexology on my feet at home multiple times during the day. This helped desensitize and increase mobility as well as stimulate all the reflexes I couldn’t use. The continuation of this was going into Lymphatic Massage. It’s as strange as it sounds. The Lymphatic system is not well understood [and no it isn’t actually green like the anatomy books show] and lies just between epidermis and dermis layers of the skin. My specialist works extremely gently on my whole body to maneuver and stimulate my lymphatic system to get back on line and reduce the blockage. One of the clear and very obvious side effects of everything in my body being off line is my edema that has barely been improved by a diuretic. Talk about annoying… Plus the two best ways to treat it and stimulate the lymph is to either jump on a mini trampoline [ya that’s a ways away…] or a boars hair body brush [which right now feels like needles and knives].

So my main focus falls to internal balance and the understanding of Qi and Qi Gong, something I was passionate about prior to this entire 7 month adventure from hell. Next week I start Ketamine infusions, a serious and seriously expensive treatment, we are hoping will kick my NDMA receptors offline and press that stupid internal reset button so I can be a human again. I guess maybe the entire reason this happened was because the universe was trying to push me in a different direction than I was headed. Qi, God, the Universe, Karma, Energy, whatever name you want to give it, something out there is shoving me in a very different direction than I thought I would go. So maybe, just maybe, I can return to my childhood dream when I was first diagnosed. I believed if I could impact even ONE person and change the way people treat their illness or help them catch CRPS before it advances, then I will have completed a life long goal.

Co-morbidity is this dumb sciency word we all use to describe the intersections and likely hoods that 2 or more diseases/events/accidents will occur simultaneously or eventually. The exact quote “any distinct clinical entity that has co-existed or that may occur during the clinical course of a patient who has the index disease under study.” Here is the simple example: People with type 2 diabetes have a high co-morbidity rate of having high blood pressure or infections that won’t heal. That doesn’t guarantee that just because someone had type 2 that they automatically will have high blood pressure, it just means the number of people who have both is very high. Some diseases have low co-morbidity, while others have no research on intersections [CRPS]. A less sciency way to describe it is the likelihood that a child with dyslexia will have trouble reading or spelling. There is not a guarantee, but it’s pretty common [I managed to hide it by memorizing words…but I suck, and still suck, at spelling]

I think it’s a stupid name because it sounds like some kind of death sentence. Often times it just refers to specific symptoms. Women with PCOS are more likely to have trouble getting pregnant. But there is also studies that prove, getting pregnant can actually “cure/halt” PCOS for a woman diagnosed.

Here is a great list of super fun, high co-morbidity things that can occur with CRPS
– Osteroperosis
-autoimmune diseases [there are like 20…]
-fibromyalgia
-hormonal diseases
-PCOS
-dystonia
-anxiety
-depression
-sleep problems [any of them]
– POTs [this is a new one for me to learn about!]
-neuropathy
-body temperature issues [sometimes related to hypothamalus]
-psychological side effects
-arthritis
– osteo-degenerative diseases
-falls, injuries, bruising, skin problems, a bazillion more.
Add into all of this that there is a very limited number of researchers that would want to work to find the source of a disease and the mechanisms. Now while the mechanisms behind CRPS can be technically understood, why and how does it display and react so differently in each person? There is no “one size fits all treatment” like a cold medicine or aspirin. What I really what someone to dig up is where the root of it is? Genetics or autoimmune, and if it is autoimmune, why aren’t CRPS cases being full treated like an autoimmune disease.

Please read this amazing research paper from 2012 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3661922/

It does a lovely job breaking down the autoimmune and inflammation parts [also it’s just a great nerdy read]

https://www.ncbi.nlm.nih.gov/books/NBK430719/

This breaks down diagnostics in a pretty simple way finally

Acceptance is kind of a strange thing. They say it’s a stage of grief. A part of understanding a loss of some kind. It’s great advice when dealing with CRPS , that you have to accept the diagnosis, but I don’t see it being a bad thing, it isn’t a death sentence if you don’t let it be. Some people have this theory that if you accept a diagnosis it means that you are giving in. I don’t.

See, the way I look at it is as a part of life. Just like graduating from middle to high school or going off to college. It changes things. You have to accept that its a different situation, a new routine, and a new life style. Nothing wrong with it, just a change. For me, part of accepting that CRPS has resurfaced is understanding that there will be a change. Exactly like the first time it happened. I learned that any bang, bump, injury, or fall would require me to immediately touch, move, and maneuver it to avoid a flair up. I accepted a change and dealt with it.

Today I had to accept that even though I really, really, REALLY wanted to go to a beer fest, the hour long drive in the car just to get there, plus the crowds, the noise, the small space, and the fact I over did it last week means I am not going. It’s upsetting. But here’s the key factor, it is OKAY. Yes I am disappointed, there was a ton of beer I was dying to try, I would have gotten to see friends and new faces, but I feel like crap. I even tried the makeup trick [when you feel like you just can’t go out, put on your makeup and then reassess, sometimes looking good can make you feel better too]. So I chose to stay home, rest, recuperate, and prepare myself for a busy week. That’s adaption.

So maybe instead of calling coming to terms with CRPS acceptance, I should consider it adaption. I am going to have to adapt and asses each new scenario. Not out of fear or as though I am so limited I can never do anything again, no. Rather, it is now critical for me to focus my extra time [what little I have where I am functional] on healing myself, and assessing needs versus wants. I need to go to work, to make sales, to be successful, and to do my job. But I want to go out and have fun. Right now that want is out of reach [dancing the night away in 4 inch heels is a pipe dream…] but it doesn’t mean it won’t come back. I just need to adapt how I deal with it.

Step one for me is getting the pain signals to turn off. But even before then, I am choosing to come off my last pain medicine and try the alternative route. I will probably have to make some sacrifices along the way [seeing a friend here or there, relaxing, sleeping well] but the end result is I will have come off of it to allow my new treatment, in T-minus 16 days, to hopefully work. I have to adapt to that. I have had to accept that I do need help sometimes. My space is a disaster [not just because I am busy and messy] because when I drop something, or knock it over, I can’t get it back up and I get tired and give up and quit. So I need to ADAPT on how to make improvements. Maybe that means using the short time I have today of feeling good to not go where I wanted, but go and do what is NEEDED.

I’m also stubborn as hell. I had an amazing conversation with a woman yesterday with CRPS who went through a lot of what I have gone through, and for her, unfortunately, it didn’t shove her CRPS back into the box. But her words of wisdom that will stay with me were “Accept that there are changes, but keep any normalcy you can for as long as you can, it will keep you going because this disease just wants to kill you”. [that’s a rough summary…] So I have accepted, just like I always have, that there will be limits, ups and downs, just like mental health. It won’t always if ever be understood by others what I am going through on a daily basis. Friends and family and casual encounters may see a smile and a bright look, but underneath is pain. And so I need to adapt. How can I push that pain aside but recognize my limits? How far can I go before I need to choose to ACCEPT I have hit my limit and need to stop? Yesterday my jaw locking [TMJ] was my signal I had done too much, and unfortunately, with CRPS the comorbidity of other conditions plays a huge role [Don’t even ask, I will go down that rabbit hole another day… it’s insane and not well researched but for all of us dealing with CRPS it’s a obvious as the sun provides light]. So somewhere inside me I need to learn to find that balance. But I also need to NEVER EVER ACCEPT DEFEAT. Just because I have chosen to accept that this disease has a risk of taking away everything I love and aspire for does NOT mean it will happen to me. And if it does? So what? I deal, I accept, I adapt. 3 legged dogs adapt, animals in the wild adapted and evolved. If they can do it, why can’t we all?

Stephen Hawking is probably one of the greatest examples ever. A brilliant man, trapped with unfortunate circumstances. ALS sucks…It’s a ticking time bomb. But despite that, he pushed to do every single thing he wanted to do, used his brilliance to enlighten us all on cosmology, energy, and so much more. So instead of just accepting and giving up, he accepted and adapted and went on to be one of the most brilliant minds ever.

I suppose the point I am getting at is simply one thing, acceptance of the circumstance is important, but it’s how you deal with and adapt to it that defines who you are and what you will be. It never means giving up, it just means changing how you view the world, how you navigate, and most of all, what you do with it.

Stay Strong My Friends.

Sometimes, I have a hard time putting things into perspective. It tends to happen after a major life incident, after the death of someone you love, or a major break up. CRPS sure has done one hell of a job of it on me.

Yesterday I had a good day. I was up and active. I felt GOOD. Finally. I was out working, on my feet, walking, standing tall, mentally strong.

Today I lost that battle. All that good feeling was gone today. Today I felt like I was hit by a bus and it kept backing over me. Today I mentally lost the battle I won yesterday. My sadness and depression took the wheel and steered me the wrong direction. My frustrations with my limitations led me to cave into the pain and not accomplish what I wanted. It made me anxious. How do you explain to anyone what this is without sounding like you’re faking it because yesterday you seemed so great and suddenly an implosion? That sounds crazy right? But that’s me in a nut shell right now. I do hide it well, I always have. Sometimes I can push through the pain and just keep pushing but I pay for it later. Yesterday I kicked butt, I did my job, I did it well [thank you B-12 shot] and it felt good. I drove my car. I ordered a meal. I ate the meal. I talked to people. I did all the things that seem silly, but were a huge win for me. But Today I lost that battle.

I caved in and didn’t want anyone to see me like this. I was resistant to getting a cane “balance stick” for a while until I realized I needed it. It could help me succeed, and avoid people knocking me down. It also is a safety net. A way to protect myself and beat back the part of my psyche that says “you can’t go and do anything today”. Like hell I can’t, I have a cane, a battle stick, a sword in my fight. I don’t plan to use it forever but it does help, sometimes.

Yesterday I won, I beat back CRPS, Today I lost the battle, but Tomorrow and maybe the next day, I will beat it again.