chronic illness

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.

chronic illness

My Turn Being The Spouse, Not Patient: Importance of Caregiver Support

Importance-of-Caregiver-Support

 

My husband and I are both spoonies. John has been type 1 diabetic since he was 8  years old and has spent every summer for the last 20 years at Camp Carolina Trails, a summer camp designed to educate and empower young people with diabetes. He started out as a camper and is now the assistant director. One of the things that inspires me the most about my husband is his dedication to raising awareness and and support for those living with diabetes. His motto is “diabetes is a gift, not a curse” as he sees his diabetes as a way to minister and serve others. Health activism is something we feel deeply passionate about and it is awesome to share this passion and support and encourage one another along the way.

In the 12 years that John and I have been together, we have been lucky to not encounter any major scares outside of the “normal” highs and lows that accompany life with diabetes. No passing out from blood sugars that are too low or hospitalizations from ketones. We have never even had to visit the ER.

Until last week.

After entering the wrong bolus amount on his insulin pump, we were very concerned about the possibility of a dangerous low so we headed to the ER to be safe. Thankfully other than Zofran for nausea, John did not require any other intervention but were glad that we made the trip just in case.

Even though it was only an IV, I absolutely hated seeing John poked and prodded and not feeling well in the hospital bed. I just wanted to make him feel better and would have easily taken his place if I could have.

It was in that moment that I realized what John has had to endure during my many surgeries and hospitalizations over the last 12 years. It hurt to watch my husband get an IV but in the scope of things, I had it easy.

I never had to kiss my husband goodbye and watch him get rolled away to the OR. I never had to sit in the waiting room for hours waiting on a call from the doctor to give an update on my husband’s surgery. I never had to sleep in those unbelievablely uncomfortable chairs while my husband was in a hospital bed and hooked up to machines. I never had to get a phone call telling me to get home as soon as I could because my husband had just been readmitted due to complications.

I cannot even begin to imagine what it must have been like to be in his shoes not only once but time and time again.

I know what it felt like to go through countless appointments, treatments, surgeries and hospitalizations. I know what the physical pain felt like. I know how emotionally, mentally, and spiritually exhausting chronic illness can be. I know what it felt like to be the patient.

When you are the patient, I think it is easy to overlook the experience of the caregiver because we can so easily become wrapped up in our own. It is easy to underestimate the burden and exhaustion that comes with being a caregiver and the helplessness one feels when you have to see a loved one suffer and not being able to fix it. It is easy to not see the loneliness that comes with the job of caregiver. The pain and grief of chronic illness is not limited to the patient.

Last week served as a powerful reminder of the importance of caregiver support and deepened my already vast appreciation for John as my husband and my caregiver. I am positive he never imagined that it would be  a role that he would have to take on so early in life but the love, attention, and support he provides is what gets me through the day. I am so thankful for him every minute of every day and thank God that He gave me such an amazing partner to walk through the journey with me and even carry me when I couldn’t move forward on my own. There are not enough words to describe how lucky I am to have him as my husband, how proud I am to be his wife, and how inspired I am by him each and every day.

Have you ever had to take on the role of caregiver? If so, how has it changed your perspective of chronic illness?