I May Not Be Superwoman, but I’m Fighting CRPS/RSD so Close Enough

I live by this motto every single day. No one understands the struggles one goes through while fighting or suffering from Complex Regional Pain Syndrome, formerly known as Reflex Sympathetic Dystrophy. In my old life, I used to strive for the best and punish myself if I feel like I didn’t do good enough or accomplish my goals because I’m a perfectionist that has OCD. Now, I have learned to love myself and be proud of myself for any and every thing that I can accomplish because at times it’s almost impossible. I went to the store today, bought me some BlackBerry wine (which is delicious, by the way!) and I got a card for my beloved grandmother because her birthday’s coming up.

I also accomplished curling my hair and painting my nails, so cheers to that.

As always, fuck you CRPS. I may have you, but I refuse for you to have me.

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The Day That I Got Diagnosed

You know how you hear or see of really bad things happening to people? I think I can speak for everyone when I say this; you honestly never think certain things will ever happen to you.

The day that I was diagnosed with CRPS, I thought it was some “dinky ass pain syndrome” that would go away within a couple of weeks to a month . . . even though I was in excruciating pain and knew something was drastically wrong with my leg.

After researching about my diagnoses and starting to become more familiar with what Complex Regional Pain Syndrome really is, I lost myself. The day that I acknowledged that I have an incurable nerve disease that makes the nervous system malfunction, it felt like someone took a sledgehammer and broke me into a million pieces. I lost myself that day. There is no word to describe what it’s like to “cope” with something like this, but I can say that every now and then, I find one of those scattered broken pieces and try to figure out where to put it in the puzzle that is now my life.

Will it be better tomorrow? No. Will it get better five years from now? I sincerely hope it does.

We sometimes don’t get enough credit for the chronic pain/chronic ailments that we struggle with. To me, it’s not just about the pain. It’s the fact that no matter how hard I try with everything in me, my leg will not work. It always feels like someone cut my leg off and stitched on something new that I don’t know what it is, or how to use it. The more I try to use my leg, the more it becomes numb and tingly, and the more it feels like a foreign object to me.

Out of this entire experience, I can only say that I’ve tried to love myself more. However, it’s incredibly hard to love yourself when you basically see your leg (and/or other affected limbs/body parts) wasting away in front of you. The temperature changes, the color changes, the muscle astrophy/dystrophy, etc..

With all that being said, I refuse to give up. I refuse to not love myself. I am so grateful to still have my legs, and I just hope that I will one day be able to use them again.

What Not to Say to a CRPS Sufferer

Things like:

  • “Is what you have contagious?”
  • “Can’t you just get your leg amputated?” First of all, this would only make matters way worse than what they already are. Second of all, what an incredibly insensitive thing to say. We’re not talking about cutting my hair that can grow back . . . this is my leg. How would you feel if people always asked you can you just get your uterus removed because the period cramps hurt?
  • “Ugh! I’m in so much pain today! Stupid sinuses.” I’m not trying to sound like a cold-hearted, unsympathetic bitch, but please realize who you’re speaking to when you tell me how bad your back, your stubbed toe, or your stuffy nose hurts. At least you are dealing with a “trivial,” temporary pain. I feel chronic burning, crushing, stabbing, gnawing unbearable pain every day of my life, and I ache for a cure. If I could deal with a temporary pain, such as a stuffy nose, a stomach ache, etc., I would trade CRPS for that any day.
  • “You act like you’re the only one going through something.” Well, I’m not. Everyone has their own problems they have to deal with, but I am the only person in my personal circle that is dealing with this. The only one. You couldn’t possibly imagine how or what I’m truly feeling.
  • “You just have to try harder to walk.” I give it my all every single day. No one wants to go through/be like this. Believe me. It’s not just the pain causing me the inability to walk; my nervous system malfunctioned, which causes the nerves to constantly misfire. The nervous system is the most important system in the body as it deals with motor skills i.e. moving your legs, walking, using your hands, tying your shoes, speech, etc. This is why I cannot walk. My brain currently doesn’t even know how to use my leg, so I don’t want to hear I just need to “try harder.”
  • “You’re gonna be just fine. I know it.” I’m not currently fine, nor have I been for the past half year, so don’t give me false hope . . . and especially don’t “reassure” me that I’m gonna be fine when you’re not in my shoes.
  • “All you need to do is try this . . . . and you’ll be okay. It’ll totally work for you.” I have tried everything. What works for one person doesn’t always work for the next. This is incurable. Everything one tries is trial and error; and unfortunately, everything I have tried is nothing but error.

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Rehab Today

Physical Therapy, or in my case, Rehab, only makes me flare up worse. Ugh. I pushed myself so hard today. I regret it somewhat from having a more swollen leg and from being in even more pain now, but I’ve never been a quitter.

Today, I did some weight bearing exercises. I stood between those two metal bars (not sure what they’re called). One of the PTs put a gait belt around me and stood directly behind me in case I fell. My left leg stood on some type of “block,” while I had the right leg on a scale so we could see how much weight I was bearing on it. While doing this, I looked in a mirror. It is highly important to rewire your brain and become so in-tune with your body when having CRPS. I wouldn’t explain it right, but I’ll just say that the “mirror therapy” is very important with this.

I looked down at the scale every now and then. I first saw that I was bearing 5 pounds worth of weight on my right leg/foot. I ended up seeing 30 and 40 pounds of weight bearing on the scale. Though it may sound dumb to some, I am beyond proud of myself. I haven’t borne that much weight on my right leg in almost six months.

My session ended with both PTs telling me how awesome I was doing. At times, one of them had to tell me to slow down some. She also said that she could tell that I’m extremely strong-willed and driven. Compliments really do help. 😊 Especially when I can tell that I actually deserve it.

I feel some type of happiness right now. Even though I’m in worse pain coming out of Rehab, it feels so good to be doing something. I turn 27 next month, which sucks because I won’t be able to really celebrate. However, I really hope I can be walking again by my 28th. That would be the best birthday present ever.

Staying Strong

Today I was more than entitled to down some wine. Today I was more than entitled to laugh and have a good day with my loved ones. Today I was more than entitled to feel happy . . . or as happy as I could be in this situation.

If one doesn’t live with CRPS, then (s)he doesn’t know what I mean. Believe me when I say I want more than anything for there to be a cure. I hate my life now. I’m tired of searching for something impossible. However, I refuse to give up my happiness. I refuse to give up me. I may have CRPS, but I don’t want it to have me.

I’m tired of being down on myself, or otherwise feeling like I’m bragging when I state something good I’m doing. All I know is, I live daily with CRPS. I’ve been “reborn” with a new life, and my name’s motherfuckin’ Superwoman. I feel this monster every day, and I’m tired of it stealing my life from me.

Today, I lived my life as best as I could and I’m fuckin’ proud of myself.

To all my CRPS Warriors, we are the shit. Never forget that, and in the midst of the pain, stop and realize how strong you are. There is no struggle like it, but we can do it. Every day is truly different, but one can only take a day at a time.

God only gives the hardest battles to His strongest soldiers. ❤

Peace.

Depression is the New Black

What’s really new? I’ve been depressed for years . . . I’m Bipolar; and I’ve had PTSD, severe anxiety, etc. since I was a young child/teenager. Depression comes hand in hand with all of these disorders. However, the depression I feel now is definitely pushing me to my limits, and I honestly have no idea how I haven’t cracked entirely yet.

I got my first Calmare Treatment today, and it may just be my last. It has flared me up so bad, and I feel even worse now than I did before. I’ve already been through this with the nerve blocks. Sadly, this treatment was my last hope. When I say I’ve tried it all from herbal to medical, I shit you not. I have had nothing but adverse reactions to what should be helping me.

The only thing left is to really tackle nutrition. Anyone that truly knows me knows I absolutely hate taking pills no matter what kind they are. However, I have been taking 21 pills a day (vitamins, herbal supplements, probiotics, etc. – nothing pharmaceutical as of late). I’m trying to eat better, because with any disease, nutrition is typically key to actually getting better.

I drown in depression as everyone goes on with their lives and mine gets worse. All of the babies that are being born now will we walking before me . . . . and that’s if I’ll ever even be able to walk again. The CRPS is in both legs (and I’m assuming my back because the pain never went away from the nerve blocks), and most days my hands hurt so bad it’s all I can do to use them. I drop things all the time.

Most days I feel like a broken record. What else can I say? I feel the same all day every day, and some days I feel way worse. I’m not being negative. I’m stating facts and feelings.

Fuck you, CRPS.

When the Doctors are Hopeless . . .

True story.

I saw my Pain Management Specialist today. Sadly, for the last time, but I can still go to him if I ever need to.

This past week has been a nightmare. My third sympathetic nerve block went awry as usual – except this time, I ended up being hospitalized for two days due to the steroids in the nerve blocks putting my White Blood Cell count and lactic acid level at septic levels. That is a whole ‘nother story, but it resulted in my being discharged and the Infectious Disease Specialist telling me, “Sepsis is no child’s play, and that’s what we treated you for. You responded very well to the treatments and everything we did for you, and you’re so lucky to still be alive and be here with us.”

Anyways, back to seeing my Pain Management Specialist today: I discussed the past weekend with him and conveyed to him that my pain is the same as always (actually worse because the blocks made my back flare up; the pain hasn’t subsided, and it’s all I can do to use my crutches so I’ve been wheelchair bound for the past four weeks). Originally, Plan B was to try the Spinal Cord Stimulator (SCS) if the nerve blocks didn’t work. Now, he said since the blocks have my back so bad, he wouldn’t recommend the SCS. He also said if I did want to try it, which he wouldn’t advise, he would want me to get a second opinion, and then he more than likely would have another doctor do the surgery. He looked utterly hopeless while he told me that I have “moderate/severe CRPS,” and in so many words, that there’s nothing he can do for me because my body isn’t responding to the treatments the way that we hoped it would. Imagine having your doctor tell you this. He looked so hopeless, and it makes me feel even more hopeless as nothing can be done due to my body rejecting everything. He also wants me to see a Pain Psychologist because he said he wants to help the whole me, not just part; and, “I know if I were going through what you are, I would be really depressed.”

However, next week I go out of state for my first Calmare Treatment to see if it will help me. There’s only 22 locations and 10 certified doctors in the USA that do this. This treatment is similar to the nervous system in the sense that it deals with electric pulses and currents. It’s a non-invasive procedure. I would have a ton of electrodes attached to my body, which would send electrical pulses to the nerves and basically “rewire” them. The doctor says that we will know if it will/can help after the first procedure has taken place. The only thing is, it costs thousands of dollars to do, so I’m hoping that a door will open.

Meanwhile, I sit in my usual pit of depression . . . just waiting for this new treatment. I try to be hopeful, yet I face the facts that my body hasn’t accepted any treatment thus far, so I’m not sure if it will work or not.