The Week-Long Migraine & Hating The Word “Normal”

I have struggled with migraines for years. Initially we were able to pinpoint that they were primarily triggered by hormonal shifts so I was able to take preventative medication during the times my migraines would primarily peak. After my hysterectomy, I definitely experienced a decrease in migraines because obviously there were no longer any hormonal shifts to trigger them.

Unfortunately, in the last year or so, my migraines have returned with a vengeance. My doctor has checked my hormone levels just to be certain there wasn’t anything wacky going on (such as the possibility of a piece of ovary being left behind from surgery) but everything came back normal.

The last day I was in VA with Abby visiting my family, I was hit with a massive migraine. I could hardly lift my head because of the pounding and extreme nausea. I had absolutely no idea how I was going to survive the drive back to NC the next day. Thankfully I wasn’t the one driving but being in the car for 5 hours was definitely not a pleasant experience.

Usually my migraines pass within a day or two but this one hung out for a week. I wanted to go to the ER but the last two times I visited the ER (once for a migraine, once for extreme abdominal pain), I ended up with the same doctor who refused to treat because I was a pain clinic patient. Pretty sad scenario, huh? I had an appointment with my rheumatologist and my pain specialist that week so I tried to just stick it out.

In addition to the increase in migraines, I have had a major increase in joint point and fibromyalgia flares were now accompanied by low-grade fevers and butterfly rashes. My rheumatologist decided to do blood work to check for lupus (and other similar autoimmune illnesses).

While we waited for test results, I had my appointment with my pain specialist and when I told him about my week-long migraine, he was able to give me a shot to help knock it down. I honestly think that syringe must have been filled with liquid fire because it was honestly one of the most painful shots I think I have ever had. I had to bite my tongue in order to keep from blurting out some unladylike comments. Thankfully, the pain was worth it as my migraine finally started to fade.

A few days later, my lab results came in: all normal. I am really beginning to hate that word. The list of symptoms and their impact on daily life is growing but answers are few and far between. I have spent most of 2014 bouncing between my doctors searching for answers and it seems that every test, scan, or procedure comes up inconclusive. We know that there is scar tissue causing abdominal/pelvic pain and GI complications but we don’t have the cause of the increase in migraines, joint pain, fevers, rashes, dizziness, or heart rate issues.

And they wonder why I have anxiety.

After every test, I feel like I hold my breath hoping that maybe this time, we will find the answer. Maybe this blood work will reveal the missing piece of the puzzle. Maybe we will find a definitive diagnosis.

Its pretty sad when you pray for abnormal results. A new diagnosis could mean the possibility of new treatments which could mean the possibility of relief.

Normal results means we have nothing and everything stays the same.

I spent some time pondering the word “normal” and the name of this blog. When I started blogging, my “new normal” was living with chronic illness. Maybe now that is my “old normal” and my “new normal” includes more excitement and fulfillment than I am allowing myself experience because I have to let go of the old in order to embrace the new.

Maybe its time that I embrace my inner Elsa and let it go.

A New Direction: Redefining Life With Chronic Pain

Redefining My Life With Chronic Pain

As I have mentioned 2014 has not been off to the greatest start and honestly I feel like I have spent most of my time passed back and forth between my doctors with one saying the other was the problem. The pelvic specialist thought that my Celiac was the problem. My GI thought that scar tissue was the problem. My pain specialist just thinks I am falling apart. Needless to say I have struggled staying positive and often wondered if I was just a lost cause and if chronic pain would continue to define my days.

Last week I had an appointment with my primary doctor so we could just lay everything out on the table and come up with a plan. We were able to look at all of the test results and procedure results along with my history. She has been my doctor from the beginning so after almost 11 years, she and I had quite a bit of history. I know that God had designed for our paths to meet as He knew the type of support I would need for my journey. As a scared college kid, I sat in the office of the new doctor who had just come to town. Coincidence? I think not. Within three months of my initial exam, I was diagnosed and began treatment for endometriosis (some women have to suffer for years before nailing down the diagnosis). In all of the time since then she has never once made me feel like I was crazy. Never once has she doubted or brushed off my experience. Never once has she made me feel like I was just a number. Over the last 11 years, she has laughed with me and cried with me so when I felt like I was at the end of my nope, I knew that she could help pull me back in.

So last Thursday she and I along with my husband (and the NP student who just happened to be shadowing my doctor), we laid everything out. Surgery was definitely not an possibility because I am so high risk because of my history of adhesions and obstructions. At this point surgery would only be an option in an emergency (like another total bowel obstruction). I felt relieved (as I still have nightmares about my last surgery) and overwhelmed (as I wasn’t sure what other options we had).

We decided that the next step should be getting a second opinion from a pain specialist. If you have read my blog for awhile, you may have noticed that I am not too fond of my current pain specialist (and I happened to find out that the other doctors in the area aren’t fond of him either) but being in a small town and knowing all of the restrictions involved in seeing a pain specialist, I was too worried that attempting to find a new one would cause problems (such as looking like I was shopping for prescriptions).

With the assurance of my doctor, we knew that the time had come to get a second option. My current specialist only wants to treat the pain with medication and honestly at this point, we aren’t sure if they are helping or hurting so it is time to explore new options (such as a nerve stimulator).

While it may not look like we made great strides in that appointment, I feel very positive about the direction we are taking and more confident that I will not have to continue to live with this amount of pain indefinitely. I feel like there is hope that I regain some type of normal for my life. Pain will no longer define my days and that feels awesome.