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

I took a DNA test…

Turns out I’m 100% that impatient.

I spit into the tube, I put it in the mailbox this morning. Now we wait. I still have a headache and more neck/back pain this morning. I am going to be anxiously awaiting these results.

I also looked into filling my migraine medication, as I have a prescription at the pharmacy. I thought maybe if it was reasonable I’d just pay it out of pocket. That was a big fucking nope. The price was outrageous and that was even using GoodRx. So I’ll wait till Friday, have my neurologist get it preapproved again through insurance and then hopefully have a reasonable cost on it.

I’m just sitting down to work so for the next 8 hours I’ll be working on a project simultaneously while doing my regular work. I’ll of course post this project here later once it’s done as it’s for you all and me.

Have a rad day x

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

Dr. Man Bun and the diagnosis

So I had the long awaited and anticipated neurology appointment today. I was so nervous I couldn’t shut up when I got there but thankfully the doctor was a talker. I plan to call him Dr. Man Bun, yes he did indeed have a man bun and it was fabulous. I really enjoyed his direct approach to things and his “theories”. He immediately said he believed I had Cervical Dystonia which is a rare neurological disorder that is characterized by involuntary muscle contractions in the neck that cause abnormal movements and postures of the neck and head. In some cases, the abnormal contractions may be sustained or continuous; in others, they may be present as spasms that can resemble tremor. Mine are present as both, I do get random spasms in my neck that last for long periods of time that are creating mass discomfort and migraines. It’s almost as if my neck muscles are made of steel lines and they are fighting against each other to pull be the way they want to.

I know I have mentioned before the headaches / migraines that originate from all of this muscles pulling and generalized pain. That is one of the major things that we want to take care of first along with reducing the strain and tension on some of the muscles in my back and next. To start looking for some relief in regards to the migraines he has me sampling two migraine prescriptions:

Topiramate (Topamax, Trokendi XR, Topiragen)

The official use of Topiramate is used in regards to seizures, however the version I am taking is used primarily to treat migraines. It is a once a day pill that I take before bed that is supposed to reduce the number of attacks I have. We counted them up and I have about 5-10 migraine days per month with about 20 normal headache days. There are some pros and cons with this medication.

PRO: So I added not drinking alcohol to both categories. I have recently given up alcohol as it is not something that I feel contributes to my overall health and that is my main focus at this point. The next pro is it is just one pill per day, right before bed. Awesome sauce. I am good with that. Lastly the reviews for this medication are overall positive. I have had so many people mention it to me over the past couple of years and the doctor strongly recommended this one as well.

CON: Alcohol… yes it’s on both lists because what if I want to have a drink in the future, say at a company party or a holiday. You can consume alcohol just not within 6 hours before or after of taking this medication. The other con is some of the side effects: dehydration, vision issues, trouble concentrating, kidney stones, acidosis, weight loss, a “cold/flu” like feeling, changes in taste, and tingling sensations.

Overall it should be interesting to see where this goes with this medication.

================================================================

Aimovig

This once a month self injection is a monoclonal antibody that blocks the activation of a certain protein that can produce a migraine attack.  This protein, called calcitonine gene- related peptide (CGRP), can cause blood vessels to dilate and cause inflammation and migraines. This is a self injection medication that is used one time per month and is stored in the refrigerator when not in use. Once you use the injection you simply throw it away. There;s not really much to add to a pros and cons list for this one. It is a fairly newer product, the only side effect listed can be constipation, but like I have said several times it is a self injection and for those that don’t like needles that could be a turn off.

================================================================

The last medication we are in the works to start is Botox, we will use this in the muscles in my neck and my back to help them loosen their grip and allow the tension and pain to subside, at least that is the goal. Botox has proven to work with many patients that have Cervical Dystonia and I am really trying to be positive it will work for me. Dr. Man Bun is a very decent man and seems like a very enthusiastic doctor. He listened to my concerns and questions, he came up with several treatment ideas and said if I had any I wanted to try we would discuss it, and lastly he took the time to explain each medication and process and what our ultimate goal was for them. Cervical Dystonia does not have a cure, but it is something that can be managed with the right medications and therapies. It is not a sentence, it is not an ending, having this diagnosis is a stepping stone to ultimately finding relief with this pain I feel.

Appointment Eve

So we have made it to the night prior to my big neurology appointment. I feel like the wait and anticipation is not only making me anxious but it is getting my hopes up for something awesome to happen to only be let down. I have been having nightmares about going to the doctor the past couple of days. I know, I know this sounds terribly cliche but I keep dreaming that I am roaming the halls of a hospital looking for my doctor and not being able to find him/her.

I spent most of my day at work today creating a sort of resume about my illnesses and pains. Yes, apparently I am going to be that patient. The one who overly does everything but I can’t help it when I am anxious. Here’s my make shift resume I created:

On a second page I typed a detailed history of my maternal and paternal known diseases and disabilities, along with my maternal grandmother’s information. I felt it help me to put everything onto paper and in one spot so I won’t forget anything. I also have my pain journal, my records from previous spinal interventions.

I am so nervous but I am crossing my fingers that I will receive encouraging and helpful information and it will be a step in the direction towards less pain in my daily life.

Self Doubt is a bitch

Welcome back or just welcome if this is your first post of mine.

I thought I would go into a bit more detail following the xrays I posted over the weekend. I am very very happy with the quality of them. I am still slightly in awe that that is my spine, part of me thinks “eh that’s not so bad, you shouldn’t be in pain” and the other half is yelling “See! I told you there is something wrong!” I still have this nervous energy the closer I get to my appointment that I will be dismissed about my pains. It is an all too common practice in the chronic pain world for patients to experience rejection and mistreatment or lack of belief from doctors on multiple if not every occasion.

Honestly it probably goes back to my mentality of always having to hide my pain and spinal curvature. I remember when I was first told I was going to HAVE to wear a back brace for 21 hours a day when I was a preteen. That was essentially the worst thing anyone at that time could ever do to me. I was active in basketball and a cheerleader. I refused to do it. I had seen the other kids at school bully another girl at school with scoliosis who had had a spinal fusion. They were so mean to her and I know there is NO way I could ever be the subject of that negative attention. I dismissed and hid my disability. I didn’t let anyone know when I was hurting or that I even had scoliosis. I only wore my brace at home and that was only when I was not being a horrible teenager.

I have always shied away from my diagnosis from the stigma that comes along with it. It’s a diagnosis that is associated as something “my sister’s friend has and she is just fine” or the nerdy girl that gets made fun of in movies because she is in a full body brace. I have never had good self esteem and scoliosis definitely has not helped that. When I look in the mirror I see how the curves of my neck are uneven and one shoulder is higher that the other, I see that one of my breasts is very different than the other from my body pulling, I see that my hips don’t sit level with one another. I always turn to the side and see how far my shoulder sticks out and how ugly I look from the back in anything I wear.

I think the moral of the story is my self doubt. I doubt the way I look, I doubt that I will be taken seriously, and I doubt that I will find relief. I really hope someday I have all of these things, until then I guess I will fake it till I make it.

The tale of the never ending migraine and some other random shit

It has been a hot minute since I posted. The reason for that is because of my never ending migraine. 5 DAYS! 5 DAYS of the left side of my head from the base of my skull to my teeth. 5 days of blurriness, pain, nausea, unable to comprehend thoughts or remember words. 5 days of shying away from any and all lights. 5 days of torture.

Monday – Day 1

I am trying to keep everything as documented as possible, from using a daily pain journal to pictures. I have my neurology appointment coming up and I am sure many more appointments after that. I have to tell you, because I have essentially hidden my pain my whole life from people, that I am getting skepticism from some. I figured this was going to be my lot in life, pain forever. You know what, it still probably will be, but I am proud of myself for speaking about it now and seeking help.

Migraine Day 3

Midway through the week, I was still pushing myself to get up and go to work everyday. I was useless at best there but I have no PTO or the time that I do have is already set aside for doctors appointments so I pushed through. It has been one of the hardest weeks I have had in a long time. By Thursday I was desperate for relief, I didn’t care in what sense but I needed the pain to stop. Unfortunately that relief would be short lived, I am not sure what made my brain stop trying to escape from my skull but I got about 3 hours of relief on Friday morning and was so excited that the pain had broke. It was short lived though, by Friday afternoon I felt like tearing my hair out .

This was Friday on my lunch break. I went to my car and just laid down.

Saturday we had a lay in day with the kids. Pajamas, movies, and board games and naps. It was what I needed. One day of “relaxing” or as relaxing as life can be with 3 kids (11, 8, 7 ). I have to say it certainly was a rough week, ending it on a nice note made me happy.

I have been struggling with self doubt. I know physically the pain I feel but I keep having nagging thoughts “What if the doctor doesn’t believe me? What if they don’t help?” It is scary that this upcoming appointment may not be helpful. The what ifs are what keep terrified. I wish I could stop them, but I don’t think they will stop until I actually get there and have the appointment.

I am not sure how to end this post. It is very much a hodge podge of thoughts and word vomit. Sorry for that I have had a tough go of organizing my thoughts recently. I hope your week is fab!

Mobility Aid Babe vs Lack of Mobility Babe

This past weekend has been a myriad of ups and downs. Starting with Saturday, I woke up and we had our weekly soccer game for our 8 year old to be at. It was about 32 degrees and I was worried about the cold messing with my joints. Thankfully it went okay and I didn’t have any additional pain from the elements. I was okay so I had the crazy idea to go to a local festival. It was a Native American festival that involved dancing and drum competitions, tipi’s, vendors, food, pottery, etc. I also figured I would use my cane for the first time. It had arrived in the mail on Friday and I thought this would be a great opportunity to try it out and see if a mobility aid would be something I could benefit from.

We get to the festival and I get out of the car with my cane, who btw has been named Ilene. I was nervous and self conscious. Which hindsight is incredibly stupid because I highly doubt anyone would flat out tell me I didn’t need to have a cane or question my using it but nevertheless I was anxious about it. I also was really worried it would not work for me. I am always so anxious to find relief for my pain that I am willing to try anything. Lately it seems as though I shy away from going out and doing things as a family or with the kids because I KNOW it will cause pain.

Anyways back to Ilene, I started using her on my left side, as my larger curve in my spine causes my body to lean left. After about 5 minutes it felt natural, I didn’t even think about it, I just used it. We stood in line for about 15 minutes for tickets and I used it to put my weight on instead of my knees and feet. I used it when we stood to watch some of the presentations and of course used it when I was walking around. We were there for about 3.5 hours. As we were leaving I could have literally danced, but probably would have injured myself. I had minimal pain, no throbbing pain in my hips, no sharp pain every time my knees bent as I walked, no constant achenes in my ankles or back. It was mind blowing.

Ilene had literally made it possible for me to walk around with my boyfriend and kids and leave in minimal pain. I was able to enjoy my time. Normally the pain causes me to become grumpy and snappy. It lowers my patience with the kids and with the world around me. I find myself snapping and speaking angrily towards everyone and everything. I end up with resting pain face. Having a mobility aid is literally life changing. I saw a quote last night that really hit home…

“If you are questioning if you need a mobility aid, you should probably already have one”

I know that this is just one experience and may have days that it just doesn’t work but I have hope. Hope that I can experience life as a more able bodied person. Hope that I won’t always feel as though I am letting my kids and boyfriend down. Hope that I can have good, pain minimal days. I also realized that many people in the chronic pain community are not nice to themselves. We expect so much from ourselves and think that we don’t need help. We push until we break. We need to stop doing this. We should listen to our bodies and our symptoms. We need to give ourselves allowances and be gentle with our bodies. It is the only body we have.

SUNDAY

Ohhh Sunday. Sunday has really been the definition of “You win some, you lose some”. I woke up energized from my very big win on pain yesterday. I am not sure if I overestimated my ability to do things, or if yesterday caught up with my body, or it just was always going to be a bad pain day.

I started the morning making waffles for the kids, it is basically a Sunday morning tradition in our house. Usually Mark, my boyfriend, makes them but I gave it a go this morning. While standing there cooking them I got a chair to sit in to keep weight off the lower half of my body. I could feel the aches setting in at that point. After breakfast we did our normal clean up and had the kids doing chores and I cleaned up my room, it was at a snails pace but I did it. I really started to feel the sharpness in my knees and acheness in my hips. I pushed myself more though. I had such a good day yesterday I wasn’t ready to give up on today.

I eventually realized I needed to sit and rest. After sitting for about 10 minutes I knew I needed more than just a sitting rest. I headed up to bed, where my heating pad was and proceeded to sleep for about 2 hours after crying about my frustration with the pain. I woke up still in a good bit of pain. I used Penetrex on my knees in a feeble attempt to rid me of pain, which is comical. We had to head to the grocery store and I walked around there, half laying on the buggy as I pushed it. Grocery shopping or really shopping of any kind is like my kryptonite. I hate it. The walking, the standing, the long hours some people can spend “just looking”, none of this is for me. Then throw 3 kids into the mix and it is enough to drive anyone batty.

We made it home, groceries were put away and here I am. Mark is cooking dinner, as me doing it would result in cereal for the masses. I was so confident yesterday, I was soo happy. Today was a complete 180. Some days I can accomplish everything, much to my surprise, and other days I have just enough energy to move from my bed to the couch. I really hope that my upcoming week allows more good days than bad. I really, really hate the bad days and get frustrated with myself on these days. Which brings me back to what I mentioned earlier about needing to be more gentle with myself and giving myself more leeway when it comes to my abilities. I need to practice what I preach.