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.

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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.

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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.

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!

Some days the pain wins

Days like today I feel less than myself. I get upset that I have to deal with so much pain, on such a regular basis. It’s 7:30 pm and I’m falling asleep on the couch from pain and exhaustion while my kids and boyfriend eat dinner and watch a movie. I miss out on family moments because the pain steals me away. I know they understand and are used to it but that doesn’t make it any better.

I’m only 30. If I’m this exhausted now how tired will I be at 40 or 52. I don’t want to have this pain. I don’t want to have the responsibility of this disability. I know it’s the pain talking but sometimes it’s too loud to stop it.

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!

Boob. Breast. Tit.

So while I am dealing with this daily pain, a new pain has arisen out of nowhere. I started having sharp, severe pain in one location consistently in my right breast. I have of course done the thing that no one should do and have googled the hell out of it. The first thing that always jumps out is cancer, but really what did I expect from the internet.

Some other legitimate options are a cyst, a clogged duct, or a pulled muscle (but I don’t feel this one is likely based on the type of pain). I have actually learned a good deal about the endless searching I have done recently. First of all there are two types of breast pain, cyclic and noncyclic.

Cyclic breast painNoncyclic breast pain
Clearly related to the menstrual cycleUnrelated to the menstrual cycle
Described as dull, heavy or achingDescribed as tight, burning or sore
Often accompanied by breast swelling or lumpinessConstant or intermittent
Usually affects both breasts, particularly the upper, outer portions, and can radiate to the underarmUsually affects one breast, in a localized area, but may spread more diffusely across the breast
Intensifies during the two weeks leading up to the start of your period, then eases up afterwardMost likely to affect women after menopause
More likely to affect women in their 20s and 30s before menopause as well as women in their 40s who are transitioning to menopause 

Breast pain is a very common symptom for many things but when it is time to be concerned is when it lasts for more than a couple weeks, it is in one particular section of your breast, seems to be getting worse instead of improving, starts to interfere with your daily activities.

For me, I am experiencing all of the above. Now to top it off I have to add on the fear that my grandmother had breast cancer at the age of 28, and believe it or not certain genes can be passed through family members that cause breast cancer when those genes become mutated. My mom has had mammograms since she was in her 30’s, as have my sisters. Naturally I have quite a bit of concern with my centralized pain. It feels like someone is poking me with a burning, sharp poker whenever I touch or accidentally hit my breast. Over the past weeks I have poked and prodded them in a almost excessive attempt to find a lump. Thankfully I have not found anything yet.

I have an appointment tomorrow afternoon to meet with a GYN and figure out what the heck is going on. It’s just really one more pain that I don’t need right now. I will definitely keep everyone abreast of the situation.