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.

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.

Coping with a Chronic Illness

Honestly, I don’t think one ever does fully cope. I think we just more so adjust to the lifestyle because we don’t have a choice.

For years, I have been battling Anxiety Disorder, Bipolar Disorder, PTSD, and other mental illnesses. Every day is different. The ups and downs. The highs and lows. Not being able to go to the grocery store some days because of the anxiety and the feeling that something bad will happen. The trembling. The weak knees. Hiding from people and not letting them know how you really feel because you feel so stupid for feeling like this. This is something that I’ve never been able to control no matter how hard I try.

Now put a Chronic Illness on top of that. I have had Complex Regional Pain Syndrome (CRPS) since September of 2017. I’m sure people are tired of hearing me talk about it at this point, and I would totally understand if they are. Sadly enough, I can’t talk about anything else. They say not to let your illnesses define you, but this is something I fight every day, and I’m only getting worse. So it’s impossible for me not to talk about it. I’m tired of acting like I’m okay when I’m falling apart. I’m not the person I used to be. My entire life has changed.

Today, I got my third nerve block treatment. These treatments, if effective, are supposed to temporarily block the pain receptors that are constantly being sent to the brain. If they are effective, you will feel NO pain for a little while. When the pain receptors come back on, they are not supposed to be as strong.

This is not the case with me. With every nerve block, I still feel the pain, and they only flare me up and intensify the pain, or give me new pains (like in my back). When my Anesthesiologist asked me how I felt today, I told him, “Bad as always.” He asked how the last nerve block went, and I told him that I was still in a lot of pain, but that I felt a little, tiny bit of relief for only about an hour and a half or so. He looked so concerned and said, “Oh, no. That’s not good.” I also told him how the CRPS spread to my right leg, and I elaborated. He was even further concerned, and wants to see me next week. I am running out of options. My body has rejected every treatment thus far and continues to do so. I expect that when I meet with him next week, he wants to go to Plan B, which will be a Spinal Cord Stimulator implant in my back and spine. I absolutely don’t want to do this as there are a lot of things you have to be careful of when doing when you have one of these implants. Also, it may not even work for me. However, if it will help me, then I will have no other choice.

What they say is true: Cold CRPS is way harder to treat, and the prognosis isn’t good. I am learning this by experience. At this point, mine has been impossible to treat. And I only get worse. My muscles have atrophied. I’m scared bone loss may happen next, because that is a possibility. It has spread to my other leg, and at times, it feels like it’s spreading to my arms as well. I already can’t walk, but I don’t know how much longer I’ll be able to use my “good” leg. People tell me I’m so strong, but honestly, I don’t feel strong because this is killing me. I am chronically depressed.

I am completely at a loss for everything – especially a loss for hope and words. My life was stolen from me. I want it back and it’s gone. Just like that. From tripping over a shoe and having my kneecap dislocate.

I am a broken person. Am I coping? No, I am not. I am trying to adjust to a new life. A broken life. A handicapped life. However, I truly hope and wish for better days. Days that I can take those first steps with two legs again.

What is Pain?

Pain is “physical suffering or discomfort caused by illness or injury.” Pain is entirely subjective, meaning that every person has a different perception of pain.

To really grasp the fact that pain is subjective, you should know what pain tolerance is. Pain tolerance is the maximum level of pain that a person can tolerate before breaking.

Say that you’re at the park with your kids. You’re watching the two of them run around and play. They both fall down and bust their knees open. One of them comes crying and screaming to you, and you’re expecting a trip to the ER is needed. The other kid seemed to brush it off, and because his/her knee looks cut up really bad, you’re repeatedly asking him/her, “Are you sure you’re okay??” And they assure you they are. I really do have a point here.

My point is that what may be extremely painful to one person may not be to another due to pain being completely subjective. (I have another point similar to this that I will get into later.) One person can get shot in the leg and still be talking to you, while another person can get shot in the leg and pass out from the pain. They both endured the same experience and the same level of pain, but handled (or tolerated) it differently. They just both “perceived” it differently.

However, this is not the case with CRPS. We sufferers all feel the same pain. At all times.

(Trust me, I still have a point about pain tolerance.) People have told me before, “It can’t hurt that bad because you’re sitting here talking to me.” Have you ever been with a woman going through childbirth? At times, she is talking and laughing with you, and others, she has her eyes closed with the most unbearable look on her face due to the pain. The human body can only tolerate 45 del units of pain. Childbirth is 57 del units of pain, and CRPS is rated a higher pain than childbirth.

I know I may seem all over the place, and this blog would probably make much more sense if I weren’t sleep deprived. I only sleep when passing out from exhaustion, so bear with me. Think again of a woman going through childbirth. At some point, she acclimates to the pain. Now bear in mind that every person has a different pain tolerance, so some women may not acclimate for those short periods of time.

My point for saying this is, this analogy is kind of what it’s like to live with CRPS. Just because we may not be currently screaming does not mean that we are not in pain (and honestly, you more than likely will not be around when we are screaming out in pain). Think yet once again of the woman in childbirth. She may have a contraction and not be able to speak, but when that contraction goes away, she acclimates a little more to the pain. The flare ups with CRPS are similar to this. We acclimate to the pain in the sense that our brain is saying, “Okay, the pain isn’t leaving, so we must endure this.” That doesn’t mean the pain is tolerable, and it doesn’t mean that it diminishes. It is always there. And it often feels worse.

As I’ve stated in my first blog, I really write for my own therapeutic purposes, but I also write to describe what it’s like to live everyday life with CRPS so that others can fully understand just how severe it is. If nothing else, I also wish to inspire others and spread awareness.

Wearing a Daily Mask in the Facade That is My Life

Every one wears a mask at some point. You know, for instance, like when you just got in a bad fight with a family member, but you go outside to check the mail, the neighbor stops to talk to you, and you laugh and tell him or her that you’re fine when they ask how you’re doing. Now take that feeling and multiply it by 100 because you are living with chronic pain every single day. No one feels what you are feeling physically, mentally, emotionally, and psychologically (and spiritually, for that matter) . . . every single day. I cannot reiterate this feeling enough.

Before I opened my eyes today, the pain was as strong and present as always. I had an appointment with my Chiropractor for yet another Cold Laser Therapy (CLT) and Sound Therapy treatment that I had to get ready for. I didn’t want to wake up living another day like this, let alone move.

The first thing I did was take a shower. I miss the days that I could take a relaxing shower. Like the warmest showers that you can so peacefully stand under and think about the long day you’ve had. Now I dread them. Not only is it the hardest task getting myself in and out since I cannot walk, but the water that touches my skin feels like fire and acid. The softest washcloth has turned into the roughest sandpaper that I rub on what feels like raw skin that has been severely burned. I could go on and on but won’t, as I could write a series of books of what daily life with CRPS is.

After getting ready for my appointment, I already had numerous flare ups. The pain is absolutely unbearable, but I had to get myself together. This is where I put my mask on.

(I don’t let people see me without my mask. They don’t see me when I’m curled up into a ball due to the pain. Or crying. Or sometimes screaming out in pain. I literally have gone into shock screaming a couple of times before because my body can no longer tolerate it.)

Back to putting my mask on. My mom picked me up to take me to the Chiropractor. I tried keeping a somewhat pleasant face to not further drag her down into depression and helplessness because she just wants me to get better, and I’m not. I forced myself to use my crutches today for the first time in two weeks. My back flared up, and I regret doing it now, but I have gotten extremely weak from being wheelchair bound and not being able to use my crutches. I’m also due for my third nerve block this Thursday. I won’t be able to use my crutches after that, so I tried finally using them again while I can. My mask stayed on the entire time at the Chiropractor as well.

We ended up going out to eat, which was a bad idea. I just want my old, normal life back, so every now and then, I try to do the things I used to be able to. Bad idea. The flare ups only get worse. I am accepting the fact that my old life is now merely a memory. I have a whole entire new life and am unable to do almost everything that I used to be able to. The CRPS has spread to my left leg (and back). It already spread to my body in the sense that everything feels like it’s being set on fire, but the physical and visible symptoms are now prevalent in my left leg. The shoe that I have actually been able to wear on my left “good” foot now feels like a firey clamp with thousands of needles. My arms and hands also often feel tingly, firey, pins and needles sensations.

When I walked back into my house after being out today, I ripped my mask off and threw it away because it was all used up. One can only wear a mask for so long. I fell down into my rolling chair (that is the only way I can get around at home outside of my crutches). I took my shoe off, and the pain only rushed acidic tears down my face.

I write this because it feels so therapeutic to let out the feelings that I try my damnedest to hide from others. No one feels the pain. The agony. The torture.

The worse I get, the worse I feel. The worse I feel, the more masks I obtain as a collection in my closet. Masks are not only to hide one’s true feelings, but they also protect loved ones from really seeing how you’re doing. From seeing how worse you truly are getting.

As I write this, my mask(s) are locked up in my closet. This is me. This is how I truly feel on a daily basis. I am not okay, and I face the facts for what they are. Nothing has helped me thus far. I continue to worsen, and I accept that I may always be like this.

With acceptance comes peace.