Before I share this post I feel the need to say, I wrote this on August 11th 2018. I’ve debated on sharing this. As time has passed, I feel these are emotions I want to share. The purpose of my blog is to push myself when it comes to sharing my feelings, thoughts or emotions. With so many people asking why we are moving, and others not understanding why it is I need alternative health care options; this should help clarify that.
Welcome to my blog, I hope you have the moment to read my blog to check out the latest’s updates on my CRPS treatments, plus a bonus story “Its Okay to have a bad day”. I am getting personal regarding an emotional break down. The more we talk about it, the more it is desensitized then maybe one day, emotional/mental struggles won’t be something people treat as voodoo or fictional.
On top of the day to day aches and pains, this week was significantly more debilitating than how my normal routine typically. I am having so much difficulty with handling everything from this week, and things leading up to the future.
Since I was diagnosed with Complex Regional Pain Syndrome we learned that there was a great likelyhood of the disease spreading through my body. I’ve begun having swelling, pulsing, pins and needles, sharp or even burning sensations in my right upper extremity. It didn’t take me long to realize that the pain I was the same pain I’ve come to know very well. I am met with bewilderment with reluctance to accept the fact that my condition is spreading. My Doctor has always been concerned that it would spread, due to how advanced it was spread with in a small amount of time.
Its It’s a terrifying thing to comprehend, I have been living with this disease for almost a year, the only answer I have gotten is a diagnosis, I still don’t know why my abductor hallucis developed the necrosis. At this point no one is looking into how that happened, furthermore there is a lot of speculation if at one of my 2 surgeries caused me to develop the CRPS. Truthfully I have never been more frightened in my life.
I often find myself contemplating which type of pain is worse, physical pain or emotional/mental pain aka behavioral health pain. One of the biggest obstacles that I have when dealing with the emotional challenges is trying to carry the weight of the pain from those emotions while still having to deal with the physical pain. I have observed that the more exacerbated things are emotionally I have a habit of putting those emotional problems on the back burner, never confronting them, never to be seen thought or heard of again, or so I thought.
For those who are new reading, or those who aren’t aware the full list of my medical conditions; I have also included my mental health conditions. Ito help you understand upcoming story.
- Medical Conditions
- Complex Regional Pain Syndrome
- Chronic Illness
- Chronic Pain
- Nerve Pain
- Polycystic Ovarian Syndrome
- Chronic Kidney Infections
- Chronic Kidney Stones
- History of Gallstones
- Behavioral Health Conditions
- Major Depressive Disorder, recurrent and moderate
- Adjustment Disorder with Depressed Mood
- Post Traumatic Stress Disorder
- Personal/Past History
- Spousal Violence
- Spouse Psychological abuse
- Personal/Past History
- Insomnia Disorder
- Anxiety Disorder
As a result of the fact that you can see chronic pain, nerve pain, or any emotional pain, I have noticed however because of this in my experience people often find it difficult to believe that pain exists for these problems because it’s not like it’s a broken bone, you can’t just put on a cast to fix it, no pins for a contraption to fix in if all. For me I’ve found it’s difficult to determine which of these is the most painful.
There are times when the weight of the CRPS, PTSD, Major and Minor Depression, Anxiety and more start piling, one on top of the other until I can no longer endure it. The weight began to make me feel suffocated, like I couldn’t breath, handling the pain seemed inconceivable and that’s when I lost it.
The weekend of August 2nd and 3rd was a very difficult, as the pain submerged difficulty sleeping became more out of control until, Tuesday I began down a dangerous slippery slope, I’ve never been more thankful to have the love and support to get through this.
This weeks provoking sleep schedule
Night of the Week
- Sunday: 6:45am to 9:00 am
- Monday: 4:30am to 6:00 am
- Tuesday: 3:00am to 6:30 am
- Wednesday: 7:30 am to 10:00 am
- Thursday: 5:45am to 8:00 am
- Friday: not in the near future
There are 144 hrs in 6 days, based on average sleeping hours I should have gotten 48 hrs of sleep total instead I have slept a total 13hrs that’s barely 1/4th of the average suggested sleeping times. I am so exhausted almost all of the time.
When you take someone who has medical problems, specifically the CRPS, PCOS, unidentified cause for necrotic muscle, new type of foot pain, then adding behavioral health/emotional challenges and top it all of with someone who is truly has no more energy.
Its OK to have a bad day
It all started Tuesday afternoon, after I got home from my therapy appointment, I was feeling very overwhelmed emotionally, we hit a few really hard topics. As I was relaxing outside I received a phone call and inevitably turns into an emotional phone call, resulting in uncontrollable tears streaming down my face. Tears mixed with Sadness and Happiness, in discussion of my upcoming move to North Carolina, the frustrations I have had the past view weeks with my health, including issues with treatments and not really having things go my way.
Another discussion, that caused even more sadness and tears rolling down my cheek, going through everything I have this past year I have had to struggle with consistent bad news habitually. A perfect example is the appointment I had on August 2nd with my Pain management Dr. Edward Poon. Before I say more I do want to specify that he is the doctor who was able to diagnose me, start treatment with me. He has always been honest and realistic about the fact that every treatment they provide for me is somewhat experimental, high risk and of course a lengthy process at times when trying to get any of the procedures covered by the insurance because of the high risk.
This summer I completed a trial of sympathetic nerve block injections. To say they were painful was an understatement. Every time they would have to use if not more than 2x the amount of lidocaine just to be able to put the large nerve block needle in me, because the numbing agent wasn’t strong enough, by the time it was finally enough for them to proceed, you feel a pinch and then a large amount of pressure, it feels almost as if through a steel pipe was being pushed on your back, as he starts to inject the anesthetic into the L2 of my spine I begin to feel a heavy amount of pressure on your spine, hips, and even the pelvis and bladder areas. Then in an instant stinging of my entire right leg, as if I had just been shocked by a taser, this feeling lasts for about 5 minutes the sting starts to calm down but the pressure continues, and worsens until the needle is taken out of your spine. After completing 4 rounds of sympathetic nerve blocks Dr. Poon stopped the trial being that I had 4 nerve blocks over the summer and received no improvement or relief so I was more than happy to comply.
We met to discuss the next steps in my search for remission, I am determined to get a second and even turtsary opinion, I will never stop fighting for remission. There are only 2 more options available to me as far as medical treatment goes. The first being a Low-Dose Ketamine Infusion during a 5 day inpatient stay, being closely observed in the hospital. Due to the fact that not only is this a high risk procedure, it is also a very expensive procedure, I am not sure quite why but I instantly felt let down when I next found out that in NM there is only 1 provider who is willing to do that procedure however he does not take my insurance, and it would take months to even get the 1st visit approved for an evaluation to determine if he is even willing to complete the procedure. Then if he would be willing Dr. Poon said that again, it would take another few months to get medicaid to even approve the procedure due to the fact that The side effects of ketamine noted in clinical studies include psychedelic symptoms (hallucinations, memory defects, panic attacks), nausea/vomiting, somnolence, cardiovascular stimulation and, in a minority of patients, hepatotoxicity. So the insurance and the doctor both have to outweigh the benefits from the procedure to see if they outweigh the risks and the costs.
The Secondary option for me is a Spinal Cord Stimulator. It is an electrotherapeutic device that would be implanted into my body in my back, Wires are connected from the device directly to the spinal cord by making small incisions on the spine to connect it and a hand held remote is used to control the device. Prior to this procedure, I would be required to complete a trial period where everything would be connected on my body and spine, and if I feel relief from it, they would proceed with trying to get approval for the device and procedure from the insurance. One of the difficulty in getting approval are the high risks involved in this procedure as well, so they have to continue seeing in the benefits outweigh the risks and costs of the procedure. Since the wires are placed on the spine there is a risk that cerebrospinal fluid could cause leak during the surgery. In addition it can cause the pain to be worse than it originally was, headaches, nausea which should subside quickly but not only do you have a large number of restrictions post op are quite extreme (but also necessary given the procedure). In continuance, there are more high risks and concerns, such as infection, my body rejecting the device, paralysis caused by spinal cord trauma, machine malfunction, pain at the site of the device and where the wires are, allergic reaction to the device, battery failure or leakage and my worst fear of all, excessive scar tissue formation reducing the effectiveness.
I left that appointment knowing a few things. It doesn’t matter if we proceeded because by the time I would be able to do something I will be in North Carolina. Dr. Poon was not confident that either treatment option would work but feels it would be harder for the insurance to approve the ketamine than it would be to get the spinal cord stimulator. I don’t care how much easier it is to get the insurance to approve the spinal cord stimulator, for me the spinal cord stimulator is the absolute last option. As soon as I get to NC, I need to start getting all my doctors set up after i get health insurance there my plan is to meet with another pain management doctor, they have a few in NC that are in the top 10 of doctors with patients who have CRPS.
Currently the only treatment options being used consist of a change in my AntiDepressants that parse well with my Anticonvulsant that I take to manage the nerve pains, these 2 medications are supposed to pare well for nerve pain control, the use of medical marijuana, and the use of prescription painkillers, despite what I am doing now whil it helps it doesn’t fix the problem, sure they may alleviate some of the pain but that is only a small portion of the time. If I use medical marijuana, there are times where I am so high, you would think that I would be pain free, but there are moments no matter how much weed I smoke or eat, the pain is still there. Moving forward I am dedicated to doing whatever I can to improve my quality of live.
As soon as I get a new PCP setup I am going to push to see every specialist that there is until I have an answer as to why my muscle in my foot died. I want to learn more about CRPS from what I have read and understood, is that people like me with CRPS Type 1 have a version of CRPS that can migrate, the symptoms that have migrated consist of the same nerve pain, pins and needles, sharp pain, burning sensations, pulsing, swelling, change in temperature of the limb, and change in color. So far this has spread throughout my entire Left Lower Extremity, into my Lower and Mid back area, and the newest addition is my Right Shoulder, arm and hand, symptoms started off slowly in my right arm over the past 3 – 4 weeks, the migration of pain is even more difficult to comprehend yet alone accept.
I am willing to do absolutely anything once Nate and I move to North Carolina. Being that I don’t work, I have medicaid, which I am not ashamed of, i need it to survive. It is my intention to attempt every method I can find in the hopes I can get 1 step closer to a remission. The methods I am considering are Acupuncture/Acupressure, Aquatic Therapy, Antioxidants and Nutritional Supplement, Chiropraxy, Diet, Herbal Medicine, Holistic Remedies, Lymphatic Massage, Medical Meditation, Moist Heat, Naturopathic Medicine, Occupational Therapy, Osteopathy, Photonic Stimulator, Physical Therapy; QI GONG: Recent studies with chronic CRPS patients show Qi Gong can play an effective role in pain management by calming, relieving stress and engaging the parasympathetic system; Reiki is a Japanese technique for stress reduction and relaxation that also promotes healing; Relaxation Techniques, Restorative or Gentle Rehab Yoga, Tai Chi and Therapeutic Touch To be honest, I don’t care if I am only in remission for 1 year, I would take it. Even if it means once a year I need to repeat whatever the treatment, or remedy in order to maintain as normal and happy of a life as I can.
I apologize for the drift away from the story a bit, but I felt those details are important perspective. After we discussed the next steps I need to take for treatment, I had a moment of sadness, I am not upset that the treatment with the doctor didn’t work out and its ok because I won’t be in new mexico for that much longer anyways. So i know it is silly but I couldn’t help but be upset, because had I not been planning to move, the next steps weren’t that desirable to choose from. I am so lucky that I am in this relationship, and it is almost as though fate is smiling back at us every time I find a new specialist experienced with people who have CRPS, every time I think about all the new adventures. There comes a time when the excitement, and joy for this new adventure Nate and I will be embarking on, but it’s bittersweet. I will miss my family, my Mom especially, I’ll miss my best friends, I’ll miss this place I’ve grown to love and appreciate. I do get a little sad about leaving but I feel like that is a normal feeling to have, being that I’ve practically lived in New Mexico my whole life. I couldn’t help while on the phone with my mom, getting emotional talking about events coming up in the next month and a half.
It has been so difficult dealing with the CRPS, through out the past year I have been bedridden/couch ridden for what feels like 95% of the time. The majority of the time I leave my house is for either Therapy or a Doctors appointment, with the pain it is difficult for me to go places, and because of that I have missed out on so much, so I find myself now hoping I can get some good one on one time with as many people as I can before I leave. I feel like you can have a home anywhere, it’s the people you can’t replace.
For some reason this caused me to become more emotional than I usually am. I didn’t want to cause nate any more worry or concern, so by some miracle I was able to compose myself until just after he fell asleep, and I spend the rest of the night crying myself to sleep. There was this sadness inside of me that I couldn’t sake. I spent most of the 3 hours of sleep I got that night, tossing and turning, At some point I dosed off for but eventually I woke up choking on the tears dripping down my face, no matter how I tried, it’s like the tears were impenetrable. I feel as though the full weight of all my physical and emotional pain has just weighing me down, as though each emotion is a little weight attached to me, slowly pulling me down, underwater intending to drown myself in tears and sorrow. As I continued to wake up, the tears continued to fall down my face, and the harder I cried. I would continue to cry for hours on end, the worst part of it all was i found myself feeling weak, broken, lonely, vulnerable, empty and defeated. For the first time since I have had CRPS I found myself understanding why this is called the “suicide disease”.
I don’t make this statement for attention, I make it in order to encourage the conversation. For me, when I woke up wednesday and at first as the morning went I continued carrying this feeling of loneliness and impending doom, all I could do was think about how I can’t keep living this way, I can’t keep living day after day experiencing so much excruciating pain. Knowing how I was feeling, the first steps I made were notifying my Mom, Nate, my therapist and my PCP regarding how deep and dark my depression was making me feel. As the day went on more I still found myself crying so heavily the tears were almost violent. I did my best to use my breathing tools to calm my panic and every now and then I would finally cease my tears, but unfortunately for me it never seemed to conclude because sure enough 15 to 30 minutes later I would be crying, it wasn’t until about 4pm when Nate and I went to run errands where thankfully while we were preoccupied with errands for the most part the tears ceased. However once we returned home as the night settled in, so did the tears.
This was so scary to me, never in my life have I ever cried so much. I didn’t know that much crying was even possible. When I was crying it wasn’t like a teardrop here and there. I had times where my body would be so tensed from crying so hard, there were times when whimpers and yelps would make it out through the rumbles of the tears at some point I even began to lose my voice. Throughout out the day and night, one thing was consistent, even from my PCP and Therapist perspective. We were able to figure out that even though my cries of me complaining about my pain, the hurt I feel everyday, begging to know why this has happened to me, what did I do to deserve it the most frustrating one of all, why can’t I get better yet. I’ve since then I have learned the likely reason for this breakdowns is because of all the pain I have packed away and ignored with in the past 10 years. These tears are tears I held back and never cried. Tears from problems I never addressed, still need to address, etc. From what I am told is that will not be the last time I can expect this but honestly I am OK with that. As scary as it experiencing such passionate and intense emotions I feel like this was a huge breakthrough. I am so excited to start digging deeper.