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

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.

1 in 8

Today I made a big decision. I had genetic testing done to look for cervical and breast cancer genes. Do you remember several years ago when Angelina Jolie had that testing done and then had a double mastectomy as a preemptive measure? Well it’s that test. I am also being scheduled to have my first mammogram. However lets rewind a bit….

I just moved from Florida to Atlanta last year, so I am in the process of getting all new doctors. I also FINALLY have healthcare which is a feat within itself in this country. In the past three weeks, I have developed a sharp, burning pain in my right breast. It comes and goes but it is consistent once it starts. The first week it was annoying, the second week it was tiring, the third week I have started to worry. My grandmother had breast cancer when she was 28. She did survive it and then went on to die from a different type of rare cancer later on in life.

It is reported that, 5% to 10% of breast cancers are hereditary. There has been advancements in technology that allows scientists to look at our genes and detect if there are any abnormalities that could end up being cancer. Most inherited cases of breast cancer are associated with mutations in two genes: BRCA1 (BReast CAncer gene one) and BRCA2 (BReast CAncer gene two).

You are more likely to have a genetic abnormality linked to breast cancer if:

  • You have blood relatives (grandmothers, mother, sisters, aunts) on either your mother’s or father’s side of the family who had breast cancer diagnosed before age 50.
  • There is both breast and ovarian cancer on the same side of the family or in a single individual.
  • You have a relative(s) with triple-negative breast cancer.
  • There are other cancers in your family in addition to breast, such as prostate, melanoma, pancreatic, stomach, uterine, thyroid, colon, and/or sarcoma.
  • Women in your family have had cancer in both breasts.
  • You are of Ashkenazi Jewish (Eastern European) heritage.
  • You are African American and have been diagnosed with breast cancer at age 35 or younger.
  • A man in your family has had breast cancer.
  • There is a known abnormal breast cancer gene in your family.

If one family member has a genetic mutation linked to breast cancer, it does not mean that all family members will have it. So just because your sister or mom tests positive does not mean that you will test positive as well.

The average woman in the United States has about a 1 in 8, or about 12%, risk of developing breast cancer in her lifetime. 

Women who have a BRCA1 mutation or BRCA2 mutation (or both) can have up to a 72% risk of being diagnosed with breast cancer during their lifetimes

I made the decision to have the testing done. I am one of those people that would rather know answers so I can thoroughly research my options. I am not scared of the results. It is just another piece of a puzzle and one less “What if” in my life. I also will be going in for a mammogram hopefully in the next week. My doctor sent in a referral for me to have one. We have a double purpose for this, one to check on the pain in my breast and two because I should have started getting them at 18 and need a baseline mammogram.

My super fancy and VERY PINK doctors office

If you have a 1st degree family member with a history of breast cancer below the age of 50, you should be getting a mammogram ten years prior to when your relative developed breast cancer. So I know that sounds a tad confusing, but as an example if your mother had breast cancer at 37, you would start getting mammograms at 27. One thing my doctor said today that really stood out to me was this:

“Don’t ever let anyone tell you that you are too young to get breast cancer”

All in all my appointment today went well. I will post an update when I go to get my mammogram. I am in limbo with the genetic testing waiting for results for 2-3 weeks. I also had a pap smear done to round out my annual physical. I’ll have those results soon as well. In the meantime i’ll be preserving my spoons for other adventures.

They gave me a super comfy robe to wear instead of a paper dress!