chronic illness, domestic violence, mental health, Self-Esteem

Let me re-introduce myself…

It’s been a month since I last worked on my blog.  Things have been a bit rough with my health and life, in general. For those who know me, or get my blog in your email (thank you!), you know I suffer from at times, debilitating mental health symptoms.  The downs and the “what does it even matter any more” feelings have been rampant. This recent bout really startedtowards the end of November/beginning of December. As has the CRPS/RSD pain. It’s been terrible in the past 3 weeks. But there will be an update on that below. Below is “my story.” A relatively concise version I posted on a new site I joined for people with chronic pain. Below that is an update I just did tonight. I’m hoping that I can get “back on the horse” and blog more regularly again. I’ve been dealing with so much and have been feeling so useless that I honestly, really, didn’t think anyone would care or miss me. I’ve had to let some things and people go that were not benefitting my wellness. I’ve also been having tremendous nightmares related to the issues that brought the C-PTSD diagnosis to my ever-growing (it seems) list of problems.

My revised and concise story:

I am a 43 yo survivor of domestic violence. I am a “retired” Certified Veterinary Nurse and ballerina….thanks to my chronic illnesses. I have been dancing since 1980, and even taught from 2005-2009 with the migraines, severe IBS bouts, and Fibromyalgia issues. After underlying trauma to my right foot from my ex-husband and a severe sprain when I was about 17, I endured a horrible and severely debilitating sprain in 2008 in dress rehearsal in my solo. Since then I had to give up dancing multiple classes during the week and teaching. I had my first reconstructive surgery 8/11 and another one just in 10/17. I have also had other traumas to that foot that led to the diagnosis 2/17 of CRPS/RSD. I had a Sympathetic Trunk Nerve Block last April and in October after my foot surgery. I am currently waiting the psychological review/application for a Dorsal Root Ganglion Spinal Cord Stimulator. I and my Pain Mgmt doc are hoping that it will help with the migraines since….maybe? 1989 (it was early high school) and fibromyalgia pain, as well. What kept me going since my diagnosis of fibro in about 2001/2002, was ballet and lyrical dancing, along with some tap and acrobats. In 2011, after my surgery, I joined the worship dance team in my parents’ church. It was great to share that gift with people and wasn’t too hard on my foot, seeing that alot of the movement in the sanctuary is with the arms. Unfortunately, in 2016 the minister and his wife, the leader, moved away. At that time I was having issues with a malignant adrenal tumor and really had no desire to be a leader at that time. Now I’m exhausted alot and just plain pooped.
I enjoy researching health and nutrition and alternatives to Big Pharma medications. I’d like to go to an on-line school for nutrition and herbal/mineral supplementation, kinda like a naturopathic doc kinda track, but, alas…The Office of Vocational Rehabilitation won’t go for that. I am very limited with how exhausted I get. It’s horrible b/c I was very active outside of my 40-60 hour work week between a regular vet practice and the emergency vet hospital I worked for on the weekends. I’d exercise alot (I was actually addicted to it, and I am a recovering “diagnosed in retrospect” bulemic).
I have a few mental health challenges….which are fun because the psychiatrist doesn’t seem to care about how the chronic pain influences depression or anxiety.
In December I started a high-quality CBD oil and have seen a reduction in insomnia, anxiety, migraines, pain, CRPS spasms…or maybe spasms from the recent surgery…we’re not sure, I’m a little happier and it seems easier to deal with things, and a few other changes in the past 3-4 months. (Link to my Hempworx site.)
I have also found the International Fibromyalgia Institute and Tami Stacklehouse and through her page discovered Chronic Babe and Jenni Grover. Among other functional medicine docs through the On-Line Health Talks. I was trying to get OVR to let me go to the IFI, and had even tried to get info for Tami to be able to accept funding from OVR, but that didn’t seem to go anywhere. I live in PA, which has really asinine laws about all sorts of occupations and other things. Just got turned down from Hawthorne University (CA) because PA doesn’t “recognize” their on-line school for nutrition education.
OVR did send me back to school for Professional Massage Therapy in 2005-2008, but it was incredibly hard with the fibro, carpal & cubital tunnel syndromes in both hands, migraines, ibs, and mental health issues. I ended up graduation Summa Cum Laude, but I don’t think it was worth it.
OVR also sent me for training for Certified Peer Specialist training in 2012. I worked in the field until 2015 (Human Services/Mental Health Recovery), but got burned out by the enormous amounts of paperwork and emotional vampires.
I want to be able to help people, but can’t seem to find a job that tolerates my “dis”abilities and will let me work at my own pace and time frame.
I live with my commonlaw husband, who has gotten me through so many tough spots in my life! He is amazing! We also have 5 cats, 3 of which are special needs kitties, a Guinea pig, and 2 fish. PLUS, I have a prescribed Emotional Support Animal….Simon, our 4yo Shih-tzu, Maltese, & Yorkie mix. He has been to the medical center I go to for some of my specialty problems so many times, that there are certain staff members who get really excited to see him!!! He has helped with alot of the pre-surgery & procedure anxiety. He is a talking point, which helps keep my mind off the severe anxiety I have experienced with several health problems and concerns.

Tonight’s update and ramblings:

Hello. It’s been over a week since I started my profile here and uploaded my story. My right foot/leg with CRPS has been pretty bad in the past, going on, 3 weeks, now. I saw the Pain Management CRPN last Tuesday and will see the foot surgeon for a 6 month post-surgery recheck on Thursday. I took 4 hot baths/soaks today for mainly my foot. I swear there are frost-bitten snowflakes in place of bone marrow in there. It’s so cold it burns. And turns colors. At the big toe joint, on the ball of the foot, where the one sesmoid bone and a “surprise” neuroma were removed 10/13/17, really hurts badly. It hurt to walk 3 or 4 streets over to my therapist/psychologist. And then I had to do it in a few inches of snow. We got about 4 inches after midnight, and this was after 9:30am. While I think, in my mind, that everything is fine and dandy, and I can just go throw those toe shoes back on and pirouette and jete my way around the ballet studio….this year will be 10 years, at the beginning of June, when I did a grande jete (running split jump, this one with the right leg forward) in my solo, in dress rehearsal, and my foot/ankle couldn’t correct and I crumpled with all my (excess at that time) body weight on my foot that was still sideways, instead of being planted firmly on the stage.
The CRNP called me on Friday to tell me I had been approved from the pain psychologist for the Dorsal Root Ganglion Spinal Cord Stimulator surgeries. I am relieved that I “passed” the psychological exam and personality disorder tests, but unsure what to do. Because this is permanent. In my spine. Forever. And ever. And ever. I used to be in a facebook group for chronic pain sufferers, and the one administrator who suffers with CRPS, Fibromyalgia, and some other things suggested back in December the Oska Pulse. It is not a personal TENS unit, that uses electrical impulses. This uses PEMF, or pulsating electromagnetic frequencies. I explained what I knew to the Pain Management Nurse and Doctor and they suggested I try it first before going for the surgery. It is FDA-approved for pain, so I’m hoping my insurance company will pay for some or all of it. It is $400. They will divide payments into three monthly payments, but that is still $135 for three months in a row. I can’t work a normal job, so I really have to look this week and see if I can swing this for the next three months. The relatively short history of this new (& amazing) pain relief product is pretty cool, and involves a koala named Oscar that was burned in a forest fire in Australia! Anyone can buy this scaled-down PEMF device. It is at the Oska Wellness site.
This CRPS is serious business. I thought the Fibromyalgia was rough. I was diagnosed with that around 2002/2003. I was finally diagnosed last February with CRPS. It seems to be getting worse, but yet I feel like I don’t “have it as bad” as others. I just want to get back to ballet class and lyrical. I feel like a blob because I seem to just sit in bed with my foot elevated or am in the tub soaking my foot. I’ve lost the “want” to even get dressed and look nice. It’s like I wear the same jeans and tees for forever. I miss going out and doing things and looking nice. But I just don’t feel like it’s worth it anymore. It’s too painful most of the time. Sigh…..

So that’s it…..that’s where I’ve been. I hope to blog more regularly now. I just needed some encouragement from friends that let me know they were there for me.

Take Care, Be As Well As Possible, And Until Next Time…

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2 thoughts on “Let me re-introduce myself…”

  1. I am so happy that you are blogging again and you are able to get your thoughts out. I know you said they could do payment plans of $135 but could they work better with you to do something more doable? Perhaps less $ and more months? Be AWAP!

    Liked by 1 person

    1. I highly doubt it….I’m surprised they are doing a three month payment plan. I’m hoping to get somewhere when I call my primary insurance company, but I doubt it will go anywhere, since it is a brand new product. I’m not sure if “FDA-approved for pain” will mean anything to them.

      Like

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