CRPS Type 1 Sufferer 

             It’s been a hot minute since I posted. I’ve done a lot since posting. I had gone a few steps forward learning to live life with limitations. I was able to plan life around pain and halfway manage it.

            However, nursing school had started again. Yesterday, I had my first clinical. The pain progressively got worse throughout the day, but settled down a bit when I got home. Whelp, this morning is a different story for sure. I’m laying on my couch getting repeatedly shot at and stabbed it with fast fasciculations /muscle twitches. It’s as if I hadn’t just had a few months or downtime. It’s as if I got this condition yesterday. I’m trying very hard to not scream in agony, but it feels as if I’m dying. It’s feels as if someone is trying to kill me and I’m dying, but I just won’t fully die. My body just won’t give in, so I’m just sitting here in rapid shooting and stabbing leg pain. 

         I had an ortho appointment on Monday and they gave me the official CRPS Type one diagnosis. I’m starting gabapentin today and god I hope it helps at least SOME of this pain goes away! It just won’t stop today. I refuse to give up on my goals even if that means I have to suffer the next 8 months in nursing school. I can’t give up now. 

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Fighting for Answers 

       I’ve spent the past few months making several trips to chiropractors, ortho doctors, general practitioners, and now physical therapy and neurology to try and get some sort of answers and pain relief. It’s been such a long journey and still on it awaiting some answer as to why I have such bad nerve pain in my leg. Today, I had an ortho followup appt to see how the prednisone pack and physical therapy had helped.

        First thing, they sent me to get more X-rays of this stupid leg. I’ve have multiple X-rays and MRIs done on this crap leg with no answers, but some inflammation/joint effusion. Of course, I followed their orders as told and of course, nothing is broken. 🙄 The doctor tried to elicit my pain, but to no victory. It’s very frustrating living your life in pain, but when you actually need it to be painful, it’s no where to be found. However, he used a tuning fork and almost instantly, my leg started twitching. So there’s something. He said I need to get a nerve conduction test done to see what’s up with the nerve and that neurology would be calling to schedule. I asked for a nerve pain medication like gabapentin and he claimed my symptoms were too severe to do any good, but could be something to try. However, he prescribed a few weeks worth of volteran (sp) instead, so I’ll see if that helps any.

        Fast forward a few hours and neuro calls to schedule. Their first available appt in NOVEMBER 7!!! Seriously!! I was at the beach and went ahead and scheduled it not being able to think much. When I got home, I panicked. Another 4 months of this crap before I can even get a clue of what’s wrong? I called back begging for an earlier appt and the lady claimed there wasn’t one. A few minutes later, I got another call from the original lady who said I could get on September 6….. TWO MONTHS EARLIER! Of course I took it, but still, it’s crazy to me how backed up these specialties are. It’s crazy how I can randomly be scheduled months apart from each other. I’ve learned that you have to advocate for yourself to get any assistance. I realize I’m poor and there are a lot of other poor people with health problems, but I still have a right to be seen in a timely manner and treated for my condition. Most people genuinely don’t care. They want to do their job and go home. Very rarely, do I find someone who half way cares about helping my condition. Currently, that person is my PT. He is so sweet and wants to do anything to help. The only slightest clues I’ve gotten have been from him and I’m thankful for him!

      I’m in pain every damn day and for the past week, it has really flared up for whatever reason. I’m thankful for my PT. I’m thankful to get an earlier appt into neuro. I’m trying so hard to be positive about this. I hope I will receive some sort of answers with the nerve conduction tests and hopefully they can get me on a medication to manage it or treatment to heal it. This journey has been crazy and it’s not over yet. I’m lingering around rock bottom, but I’m still here. 

Finding “the spot”

       Whoever reads this may not know, I got engaged to my soulmate in November 2016. We were in the Tennessee smoky mountains heading to a waterfall when I pulled a ring out of my mitten. We planned on getting married shortly after I graduate from nursing school. We were looking at areas in south-ish Florida because my fiancé loves it down there. We took a trip down last weekend to look around and happened to stop at this specific area to snorkel! It was beautiful! The beach has a bunch of limestone rocks and when the tide is high, the water hits the rocks! Chris asked me about getting married here! I figured why not? It’s gorgeous! 

    There was this little gift shop next to a life guard look out and I got curious. There were a few buildings in this little area and turns out, its a museum! I looked them up online and they have weddings and receptions all the time! They have a big brick patio overlooking the ocean on one side and the lagoon on the other side. They have public restrooms and “the quarters” building to get ready in or help with set up the day of! They supply tents, tables, chairs, etc! It’s so absolutely perfect! You can’t really beat the price either! I really couldn’t believe we stumbled upon it and Chris actually suggested doing it here!

     I’m so excited and nervous! I’ve been still battling my injury, anxiety, and depression, but this gives me so much hope. I have so much hope for a future with the man I love and for now, that’s enough for me. ❤️

Good Days and Good Vibes 

      Yesterday was a good day. Yeah I’ll admit it. It was actually a GOOD day. I can say that even though I had some pain, but it was definitely more manageable yesterday. I forced myself to go to the beach even though it was sprinkling (later pouring down rain 😂). I was able to walk over 30 minutes and look for shells at high tide. The beach usually makes my day better. I always feel calmer at the beach. I love watching surfers and paddle boarders. Sometimes, I see dolphins in the waves playing and flipping around in the crashing waves. Overall, it’s such an uplifting experience for me to make it to the beach. 

      Anyway, after that I figured I would go to the store and find some summer tops and was actually successful! I got gas and picked up a redbox movie. When I got home, I ordered my background check and drug screen for my last year of nursing school. I googled current nursing jobs and specifically looked for home health jobs and jobs slightly less physically strenuous than the common 12 hour hospital job. I reminded myself that even if I’m still fighting this pain after graduation, I should be able to find a job that I am physically capable of doing! Then, I watched Netflix and scrolled social media and did my calf stretches throughout the evening. Chris finally came home and we had some couple time. It was just a good day. 

     Lately, my days have been very very dark. I find myself feeling extremely isolated and alone. I feel like life isn’t liveable and I can’t possibly enjoy it, BUT, and that’s a big but, yesterday was good. Yesterday gives me hope that I’ll have more yesterdays and if I can have more yesterdays, then I can fight through the bad days. ❤️

Faith in Pain 

      Today makes 4 months of nerve pain, muscle fasciculations,  and the inability to live my previously active lifestyle. Thanks to one long run, I’m always on the edge of having shocking, shooting and throbbing pain my lower leg. I modify my life to try and reduce this pain, but that leads to depression and days of inactivity. Many days, I’m lead to tears, either due to the actual physical debilitating pain, or due to the mental stress and anxiety placed upon me dealing with the injury. 

      I have many days where plans are messed up and I don’t enjoy life due to this pain. Simple things like long drives, trips fishing, going out to dinner, grocery shopping, or kayaking becomes completely torturous, as I just want to get home and  get in bed. I have lost a lot of joy and contentment in my life and everyday, it gets harder and harder to think of the positives. I have frequent thoughts of “Will this ever end? Will I really be in this much pain my entire existence? And if I am in this much pain and it keeps me from doing almost everything I enjoy my entire life, is it really worth existing? Is life worth living when handed such a physically painful experience?” I haven’t had the strength to answer those questions and I don’t have knowledge of the future to answer them. 

      With this physical pain, comes my struggle with faith. Believe me when I say my faith has gotten me through a lot of traumatic experiences growing up. I remember many times on my knees in my bedroom pleading with God about life’s circumstances and my family’s mental illnesses. It just seemed like God got me through it. He always opened doors to give me a future. Two of those doors was a full scholarship to college and acceptance to my school’s nursing program. Now, im seriously doubting my physical capability to be on my feet in clinical, community centers, class, and all of the other obligations that comes with being a nursing student. I mean, of course I can do it, but it’ll mean more frequent debilitating pain attacks, which leave me nauseated, breathless, and forever exhausted and hopeless. 

       So naturally, it leads me to question this plan. To question my faith. Does God want me to suffer? I keep getting suggestions like “well look at how you live your life and change things and maybe things will get better.” These “suggestions” sound like this is my fault, like I caused all of this, like God is letting me suffer because I’m such a bad person. I didn’t realize God was so cruel to let his child be in so much suffering because she didn’t follow every condition set for his love and care… a love that’s supposed to be so unconditional. As you can see, my faith is wavering. I still listen to my faith based music. One song I try to hold onto is “Trust in You” by Lauren Daigle. I try to keep the faith that God still has a plan for me even in the midst of so much suffering. It’s just so incredibly hard to walk (well more like hobble) into church with all of these happy looking people asking me the same questions wondering how I’m doing, how I could still be in so much pain, assuming I’ve gotten better and have no reason to complain or miss church, wondering where I’ve been, why I won’t come to church, etc. It’s honestly so overwhelming to be in such an overwhelmingly positive place when my life is so dark right now and people just expect me to remain so happy and joyful when I question how I’m even going to get through another week, day, or hour in this position. It’s so hard to just “let go and let God” when hour to hour, my existence changes from relative normality to excruciating suffering pleading with life to just stop. 

     And then I think about how selfish I must be to think God should heal me… or expect to somehow be healed by God. I mean, millions of people live in chronic pain, chronic illness, get cancer and die, and all sorts of debilitating ailments and God doesn’t heal them. People kill themselves everyday because they beg and plead for some sort of relief, only to be knocked down again by their physical and emotional pain. This is where I get discouraged. Should I really pray for healing. Should I really pray at all? Does it really change anything if God is God and he does as he pleases anyway and if you don’t completely fall in line with every rule of Christianity, then obviously it’s all your fault and you deserve to suffer in pain?

      If anyone is still reading this and is a severe chronic pain survivor and still manages to have a strong faith in healing and perseverance, please give me your thoughts because I’m so incredibly hopeless that I’ll be able to live a fulfilling and joyful life and actually be thankful for it. 

       

The Art of Thinking Positive 

        I’m sure you’ve heard it before. I know I have many times. Someone asks how you’re holding up and instead of that false “I’m fine”, you decide to open up, only to receive the dreaded response, “well you just have to think positive.” Uggghhhh barf…. puke…. logically, this response is true, maybe even helpful if used in the right set of words. However, most of the time, I hear this rehearsed response and it just goes right over my head and into the trash can of other stupid phrases like “just be happy” and “keep your chin up” and “God always has a plan” and oh that lovely “I’ll keep you in my prayers.” 

        Now I know we all have a share of suffering in this world. I don’t deny you’ve have a rough existence. However, I feel people are so quick to throw out these meaningless phrases to those who are suffering without really seeing them or listening to them. People open up to us and we just hash out these phrases like they are the ultimate answer. Sometimes, there are no answers. Sometimes, there would never be a response to calm someone down or make everything okay again. Sometimes, the best a person can do is listen and receive. Sometimes, the best response (if I really had to think of one), is “I will never claim to know what you’re going through, but I know pain and darkness, and I see you. You are not alone.” 

      So back to thinking positive, instead of telling someone to simply change their thought process, how about responding in a manner that initiates a cycle of positive thinking? You say I should think positive, but how? However, when I go to counseling, my counselor never just tells me to “think positive.” She listens to me. She doesn’t try to match suffering like it’s some huge competition of who suffers most. She just sees me and acknowledges my suffering and makes me think of ways to be present and have gratitude in the midst of sucky situations. After leaving those appointments, something changes, if even for a little while. I start having this feeling of hope. I don’t feel as isolated. I actually smile and it’s not a mask. I find myself laughing at things and just enjoying the present moment. This, right here, creates positive thinking.
        Everyone’s needs are different, but for me, having people who actually empathize with my situation helps much more than someone spitting out a “quick fix” method for depression/anxiety/chronic pain/child abuse/etc etc etc. So if you’re in a shitty situation, I just want you to know that, while physically, you may indeed be alone, you are not. You have my support and encouragement. If you ever need someone to talk to or vent to, I’m always open. I do not have all of the answers unfortunately, but I do have a heart for people who hurt. 

Life in Pain

       Cheers to another day of pain. Pain in my leg. Pain in my back. I often question if this will ever end, but week by week and month by month, my hope for healing slowly declines. Monday will make four months of leg pain, of doctors brushing me aside and giving me the run around, of fighting for my health, physically and mentally, of being told, “You’re young. You have youth on your side and you’ll heal.” Meanwhile, NO ONE can give me an answer. It’s so incredibly invalidating and isolating to constantly be told this will just go away with time and just “keep your chin up.” It’s so frustrating to hear that from people who aren’t trudging through a shit show everyday of physical and emotional suffering.
        By now you probably think, “Oh lord. Look at her begging for pity.” Well maybe? Or maybe I just want people to know I’m not perfect. You look at me smiling and think my life is great. I’m in school. I have a great fiancé. I have a promising future. 

      However, you don’t see my daily struggle to force myself out of bed. How I slowly walk around to losen the tight pressure I feel in my leg (that same pressure that results in stabbing taser pain) after simple movements to increase strength. You don’t see how I wobble to my couch for another day of TV because it’s the only thing that takes my mind off of my worries. You don’t see how much I fear about not being physically capable of going back to school for a year and countless hours of standing, walking, and lifting people in hospitals when I can hardly stand myself for minutes at a time. You don’t see how much of a failure I feel like for not living up to everyone’s expectations of me to be successful. You don’t see the physical pain. You just see my scrunched up face to hide tears. You just see my tears when my emotions finally take over and I can’t take the pain anymore. You just see how my foot turns a cool shade of purple when simply resting on the floor. You just see someone with a blank face who worries so much, just to completely feel empty and emotionless a few minutes later. 

      I am doing the best that I can. I’m reaching out for support. I am fighting so hard for my health and my life even though I feel like I’ve given up. I got myself into counseling and art therapy. I go to all of my DR appts and now PT. I do everything asked of me, yet I’m in so much suffering that the good in life gets completely splattered with black and darkness. Hopefully this back pain will ease up in a few days. Hopefully, I can get a treatment plan for my leg that’ll actually help me. 

     I don’t feel like I ask for much in my life. I just want to finish school and give back to society as a nurse. I want to have a lasting marriage to my fiancé. I want to travel and explore this beautiful planet. I just want to do it without constant pain. 

       Before I end this sad posting, I’d like to end with some positives to put things into perspective for me. I have a cat that likes to cuddle. Furry friends always make things better. I have a roof over my head and a car to use if I need it. I have food to eat. I have a partner that is so supportive of me. Who loves me in the midst of my suffering. Who accepts me completely and I’m so so thankful for him. I have a family who is trying to reach out and support me as well even though they have their own struggles in life. I’m usually able to fall asleep easily and stay asleep the whole night. I have a few friends that’ll reach out occasionally to check up on me. I’m thankful for y’all. I’m just so tired. 😴 (PS sorry for the grammar and punctuation errors)