Round 2!

I went in for my second round of Botox injections into my neck and shoulders. I always think I’m prepared when I go in for the mix of pressure, pain, and burning feeling. It has caught me off guard both times now. Don’t get me wrong it is so worth it when the injections kick in. Just the first couple days and the actual injecting into my muscles suck.

They used 200 units this time. They used 110 units on just my left capitis muscles and the left scalene. Then put 70 units into my right trapezius, and 20 units into my right levator.

I always take my boyfriend with me to appointments because…

1. For moral support.

2. Because of brain fog, I forget things

3. Because on the days I have injections I don’t physically want to move afterwards due to pain.

Also he’s nice to look at when I’m in pain

The next couple days to week will be telling as to how well it’s working. I’ll feel like I have the flu for a couple days and then the good effects will kick in (hopefully). I could really use some good effects right now.

In the meantime I’m also try to get the rheumatologist on the line to schedule an appointment. My joints have been so angry lately. I came home from work a week ago and went straight to bed, even my finger joints were hurting. That absolutely terrifies me. That was the first time I had finger joint pain. I’m scared. I don’t want this pain forever. I want answers. I’m hoping I’ll get some soon.

Be kind. Be Helpful. Be the force of good you want to see in the world. #BlackLivesMatter

Back by popular demand

So I know I mentioned in the first post that I am HORRIBLE at remembering to post on a daily… weekly… or even monthly basis. I am telling myself I will be better at this. So here we go. Things that have happened since the last post….

I got the Botox injections into my neck and shoulder. 100 CC, the lowest dosage. The effects lasted for about 3 weeks maaaaaaybe 4 weeks and now I am back to daily intense pain and even mind splitting headaches. I need to remember to write down my daily problems.

I also had my 4 month check up with my PCP and he tested me for RA. It came back negative which was very disheartening. My joints have definitely gotten worse in the past year (my knees, my elbows, hips, and ankles). I did just purchase one of those 23 and Me for the health testing. I curious to see the results it gives.

I am still going to work everyday, as I am considered essential. I am working in medical records in a Cardiology office. Unfortunately for me and fortunately for anyone who goes to a healthcare provider it is against HIPAA for me to work from home and have any HIM out of the facility.

I know this update isn’t much but it is where I am. Also my head is killing me today. I have been off of my Amovig and Trokendi due to switching jobs and now I am waiting for my new insurance to kick in (May 1).

If you have ideas of posts you would like to see or questions post them below. I hope you all have a safe and happy week x

Curves in all the wrong places

I am a spoonie. I know you are probably thinking, “What the heck is a spoonie?” and before we go any further I will assure you I do not have some strange obsession with spoons. A spoonie is someone who has a chronic illness or disability, they measure their daily tasks in spoons. You are allotted a certain amount each day and each task you accomplish takes away a certain amount. Essentially like a battery being drained of energy. This theory was the brain child of Christine Miserandino, and frankly it is totally on point.

I have S curve scoliosis. I know when you hear scoliosis you think, oh my friends sister had that and she is just fine. Well I am very happy for her but mine is a severe case. It affects my every movement. I am in pain every moment of everyday, from a minimal amount to hysterical tear inducing pain. It affects my breathing, my ribs, my ability to walk or be mobile, my hips, my back, my neck, it causes headaches (daily), numbness and tingling in my hands and feet, nerve pain in my legs and arms, knee and joint pain, and severe exhaustion. My PCP has preemptively diagnosed me with fibromyalgia and I am soon going to be tested for dystonia.

My last x-ray in 2016

I am 30 years old. I have been in and out of doctors offices since I was born. I was born with 2 VSD’s, these are holes in my heart. I saw a cardiologist until I was 18 and they were assured I was okay. I started having severe migraines at the age of 7 and had my first MRI then as well. They found my scoliosis at age 10. I was diagnosed bi polar depressive at age 27.

I have tried everything so far short of major spinal surgery for my scoliosis with no relief and it has only gotten worse. I have tried bracing, physical therapy, massage, and seeing a chiropractor. Medications don’t touch my pain, I still take them with hopefulness but they just don’t work. Heating pads, rest, not being active, pain relief creams, etc help to mask the pain for a bit but it is a never ending battle.

I am starting to actively search for a plan for the rest of my life in reference to my spine, my body, my pain. I have a neurology appointment in December and new scans coming up soon. I want help, I am tried of the daily pain I have been fighting for most of my life. So that brings us to the reason for this blog and me sharing all of the above with you. I deal with this everyday and have for almost 20 years, if even one thing I say can help someone or allow someone to realize they are not alone then I will be happy. I plan to share my life on here, the good, the bad, the pain, the doctors, the experience of being a spoonie.