Headache Camp: From Mom’s Seat

I’ve written about my several in-patient stays at Thomas Jefferson University’s Headache Center, AKA “Headache Camp.” Those articles are from my point of view. But those around me experience my hospitalizations differently. My Mom wrote the following after I had gone to Headache Camp for my first Ketamine infusion. For me, I just remember her always being there, knitting or bringing cupcakes. It was comforting. She even crocheted one of my pregnant nurses a baby blanket. My first time at camp, I purposefully did it by myself. I quickly realized that you are never too old to want your Mommy, so I asked her to come with me for part of the next two stays. I am so grateful to my Mom and my boyfriend who swaps babysitting duties with her after a few days. It can’t be easy to sit in a hospital room and watch me go through this. Here is the view of Headache Camp from my Mom’s seat.

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“Mom? Is today Tuesday?”

“Yes, Katie. Today is Tuesday.”

“O.K. Just checking.”

It is very unfair to say that migraines are headaches. Headache implies that you can take two aspirin and it will go away in 20 minutes. They don’t. Having a daughter that has suffered from migraines since the age of five and seeing how they affect her quality of life, I call migraine a disease. The Merriam Webster Dictionary defines disease as a condition that prevents the body or mind from working normally. That is how I see it. When you watch your child’s life change because of migraines or any other disease for that matter, you just want to get them back to normal. You want them to go outside and play with their friends or be able to go back to school or work after a few days of debilitating headaches. You just want them to smile and laugh! You want the normal that was there before the migraine. Sometimes normal comes back and sometimes it doesn’t. As a parent, we all wish we could take away the pain or suffer it for our child. It is difficult to stand by and watch the migraine play out.

Being with my daughter during round two of Headache Camp was a little different than other hospital stays and in some ways just like all the other times. I was in a city I was not familiar with so Katie and I walked around the first day to get the lay of the land. As it was not practical to drive my car four blocks in the city and try to find a place to park, I walked back and forth from the hotel to the hospital and back again each day I was there. Old Man Winter was not kind those few days in Philly but I did what any mother would do. I trekked to a local bakery in the snow and ice every morning to pick up Whoopie pies and cupcakes for our afternoon snack.  Since Katie couldn’t tolerate noise from the T.V., I brought my crocheting to keep myself busy. Katie just slept most of the time. She would wake up and ask what day it was. She was afraid she had slept through a day and didn’t know it.

“Mom? Is today Wednesday?”

“Yes, Katie. Today is Wednesday.”

“Was the doctor in to see us this morning?”

“Yes, the doctor and his minions have been in today.”

This went on several times each day I was there. Every time she woke up from a nap I would have to reassure her that she hadn’t slept the whole day away. It taught me patience that I don’t always have. She was asking the question as if it was the first time that day and I answered as if it was the first she asked the question.

Sometimes just being there is all you can do for a loved one but sometimes that is all you NEED to do. Whether she remembers or not, Katie and I have made new memories like Whoopie Pies and Lavender Cupcakes. I started crocheting an afghan while she slept. It will be hers when I’m done and I hope it will give her warm and loving thoughts on those days when her head hurts.

“Mom? Is today Thursday?”

“Yes, Katie. Today is Thursday.”

“Did Doctor Young come to see me this morning?”

“Yes, he was in after breakfast.”

“The pain management doctor was in this morning, too?”

“Yes, you remembered correctly.”

“Is today Thursday?”

“Yes, Katie. Today is Thursday.”

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (11)
  • Emilie
    3 years ago

    Your mom sounds amazing! She sounds so much like my own mom. I am scheduled for an inpatient stay at the Jefferson headache center in about a month. Jefferson Headache Center is about 4 1/2 hours from where I live and my mom would like to stay with me for atleast some of the time. I was wondering what hotel your mom stayed in and if she would recommend it to some one else. The busy city driving really stresses my mom out so I’m sure she would prefer a place where she can park at the hotel and then walk to everywhere she needs to go. Thank you!
    -Emilie

  • Andrea
    4 years ago

    I was in a three week headache treatment program at The Cleveland Clinic – IMATCH (Interdisciplinary Method for Assessment and Treatment of Chronic Headache). The firs week we received infusions for five hours daily, then had to go to the gym to get physical therapy and work out for an hour. No excuses. The second and third week we were in groups and individual sessions from 8 AM to 4 PM, then another hour in the gym each day. Migraines were not considered an excuse for being absent. No sleeping, no staying in bed. It changed my life over a year ago. I still get them, much less severe and less frequent. I now get treated with quarterly Botox, monthly nerve block injections, Toprimate for preventive and Imitrex injection for abortive. If you want to know more about IMATCH, google Cleveland Clinic IMATCH program. Saved my life.

  • Jkr
    4 years ago

    I have been getting Botox now for almost 5 years it helps tremendously but when it wears off, they become a bear. We always have to wait for the insurance to approve the next round which usually leaves me 20 days past due. I am a single mom now and the areas of knowing that I don’t have time for them now definetly makes them come on much more. It’s a catch 22. My pain dr was just discussing the ketamine infusions with me. Did you find that they work? Do they knock you out? I’m not sure what to expect or how much help I’ll need with my 4yo after. I want to make sure it’s worth it before I do it. I’ve had them for 20 years now and have really been put through the ringer. I know my parents can relate to this article. My 4 yo autistic son just started getting some and being on the other side, it’s truly heartbreaking because I know what he’s going through. All I feel is guilt because I know I’ve passed them down to him. Luckily once we get Benadryl and Motrin in him it helps, but lesson up to that it’s just awful. I hope he doesn’t go through what I’ve been going through and sadly it’s just me that will help him with them being that his dad tries to stay as far away as possible when the word migraine comes up. Hence why I’m a single mom now.
    Please let me know how the ketamine infusions have worked. And thank you for this amazing letter. It truly hits home.

  • Mishmash97
    4 years ago

    Dear Katy’s Mom,
    I wish all migraineurs had a person like you to keep them company when logic deserts them and their brains go into overdrive. The neurological effects of migraine are so frightening, so to have someone near who undestands and does not judge is a very special gift. Bless you.

  • Writermom
    4 years ago

    Excellent item by your mom, Katie. Sometimes, no matter what the illness is, it is helpful to just be there. When my husband had his brain hemorrhage, he had to be in darkness with no sound. Just my sitting there with him, sometimes holding his hand, helped him so much.
    You are very blessed to have a mom who helps you this way.

  • LAnnSmith
    4 years ago

    I worried so much as I raised my son that he’d get my migraines, so far so good. He’s 34 and has only had about 5 so I hope he’s mostly clear of them. He did get mild color blindness, not the best, but so much better.

    You and your mother are sweethearts together, so gentle and caring. I don’t think there’s anything like that in Denver, at least my doctors have never hinted at it. Maybe I should bring it up. I’m in my 12th day of a 7-8 level and trying hard to remember all my tricks at this point, brain is exhausted.

  • Jkr
    4 years ago

    Have you tried Botox yet? It’s been a life changer

  • Abby
    4 years ago

    Thanks for sharing your story from both your mom and your perspective. I go to Jefferson as well and I am currently receiving botox treatments but I’m not noticing much difference. My neurologist had discussed the headache camp with me but she wanted to try the botox first and I was a little nervous about staying there for a week. It was nice to actually know what to expect down there. Thank you!

  • RobertCan
    4 years ago

    Hi Abby – It took a couple of treatments before Botox worked its magic for me. Having said that, it reduced the number of headaches in half for about 2 yrs, then became less effective over time. Hoping it works out well for you. Take care, robert

  • Tammy Rome
    4 years ago

    As a migraineur and mom to 2 migraineurs, her story brought me to tears. Your mom is an angel. You are so very blessed to have her. Thanks for sharing.

  • Katie M. Golden moderator author
    4 years ago

    Tammy,
    Thanks so much. It has to be incredibly difficult to watch your child in pain and not be able to do anything. My mom is an amazing caretaker.

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