Chronic pain

Finding Love Again: Marriage During a Chronic Disease.

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When my husband and I got married in 2005, we were all bright eyed and bushy tailed. We had a very traditional wedding- with traditional vows; “in sickness and in health, for richer or poorer, etc”. But, never in a million year did we ever believe that these vows would be put to the ultimate test 8 years into our marriage.

My husband and I were best friends before we ever became anything more. We told each other EVERYTHING. He was exactly what I looking for in a spouse; but, we both were in committed relationships when we met in graduate school. So we settled for best friends, study and drinking buddies. It was about a year into our friendship (and my last boyfriend was LONG GONE), that I finally got up enough courage to tell him how I felt. To my surprise, he felt the same way ; and from that point forward we were inseparable. We only dated 3 months before becoming engaged and less than a year after that we were married. We KNEW that we were destined to be together—living all of lives adventures by each others sides. He is my soul mate- my person who I would do anything for.

We spent the first half of our marriage living the dream- being young, finally having some money and being able to do things. We had no strings tying us down. We traveled, and even decided on a whim to pick up and leave the South for the West coast–for a truly amazing adventure.

It was a year and half after we moved to Oregon that I became sick. Being that our entire family lived in the Southeast- we clung to each other for support, like we were a life raft at sea. This experience made us ultimately stronger as a couple. But as time went on and the illness lingered it began to grind us down- it became harder and harder to cling to each other.

As I got sicker, and prospect of neurosurgery was on the horizon–we were filled with so much hope–This surgery would fix me and I would be, well again….I could be ME again. But that surgery came and went and all the recovery that came along with it. And yet, I still wasn’t well. The fractures in our strong foundation begin to surface around the time of my second spinal surgery. We were CERTAIN that this surgery would “fix” me–and poof my chronic migraines would go away.

It was at this point in our marriage and life that I distinctly remember thinking so this is what our vows meant “in sickness and in health”–not just when you get a cold or are running a fever–but the kind of sickness that takes your soul and drastically changes the person you once were…the person that your husband had married. Our wedding vows were being stretched to the ultimate limit during these 4 years of utter hell. I remember us having a conversation one day about how, “we had never imagined that the “in sickness and in health” portion of our vows would occur at such a young age”, that we had both assumed that portion of our marriage would take place much later in life; when we were closer to death.

Between the constant chronic migraine, pain from spinal surgeries and the desire to have children–we pressed forward with our lives to endure another deeply emotional process of IVF. By this point, we had been “trying” for almost 8 years with no pregnancy. We knew we needed an intervention–and we found one with an amazing fertility clinic. Just when we felt like NOTHING in our lives was going right–we had our first round of IVF (just 6 months after my last spinal surgery); and became pregnant with a baby boy. A MIRACLE by all sense of the word. We believed that our “bad luck” was maybe over and we could return to our “life plans” of raising a family and doing all the things we love with our son.

But, God had other plans for us—my husband was offered a job that we couldn’t turn down while I was 5.5 months pregnant. So in the midst of packing our home, leaving our dear friends and defending a dissertation to complete my Ph.D–we moved back south. Truly believing that THIS would be our next chapter. The new beginning that we had hoped and dreamed of for so long. A chance to get back to “us” again. Something we both so desperately craved.

But, to our surprise; the final surgery did not “cure” me of my attacks–if anything the attacks became worse and more intense after the birth of our son. The attacks intensified so much so that it is difficult for me to put into words the amount of daily pain I was living in. It wasn’t just the physical pain that was wrecking havoc on me, but the mental and emotional pain. Here I was a new mom, in a new town, with no support system and essentially unable to care for my “miracle” baby basic needs. I lived my life in a dark room. Family from all over the South had to swoop in and help us–we were a quickly sinking ship. My dear sweet husband, was doing all he could to help–but being the only income for our family–was constantly busy with work and helping out at home when he could. Our relationship at this point was nothing more than two ships passing in the night. I could barely care for myself–let alone a newborn and save enough “spoons” for my husband. I quickly slipped into a DEEP depression–why would a God who loves us so much give us a baby that I could not care for, and place us in a situation such as this..

All of this changed, when I presented with an opportunity to attend an inpatient hospital program for chronic migraine.Its been one year since I got to push the reset button on my life. I was fortunate enough to have a headache specialist who deeply cared for me and my well being and sent me to an inpatient hospital program to try to come up with some sort of management plan for me–so that I could have some sort of a life. When I entered the program in late December 2018–I was a shell of a person I once had been, I was depressed, under weight and living at daily pain levels of 5/5. I was an utter mess.

Thankfully, the inpatient program was able to help to put my train back on the tracks and provide me with lots of tools for my tool belt to manage and triage attacks. The reality of this all is that this is likely my forever. It has taken me some time to come to terms with that idea–and how can I still be ME and live inside the confides of this disease.

The transition has not been smooth for my husband and I . I am going to be honest, our marriage has basically seen more in the last 6 years, than many see in a lifetime. But how do we recover from this? How do we learn to love the new versions of ourselves. Neither one of us are the person that entered in this union 15 years ago. The words that keep coming to me are: Where do we go from here? How can we learn to love each other as the people we are now and still live out the dreams we set forth 15 years ago.

I was listenting to a podcast earlier today with Katherine and Jay Wolf—if you have not heard of them–immediately stop what you are doing and google them—they are a truly amazing example of a complicated, but ever so sweet marriage. Brief synopsis of their live–College sweethearts, and Katherine suffered a massive brain stem stroke at age 26. They had only been married a few years when this occurred, and had a 6 month old little baby. Again, their story is amazing —GO READ IT- Their first book Hope Heals- really opened my eyes to what living life completely different than you ever imagined could look like and how wonderful it could be DESPITE having a chronic condition.

What Jay Wolf said in this podcast resonated with me—he said that essentially after Katherine was home–they had to look at each other and make the decision of how to love a person that they barely knew–after such a horrific trauma Katherine nor Jay would never be the same people they were before. Chronicness has a way of doing this to people.

This is the point we are at right now in our relationship—divorce is off the table—we’ve already decided that —but how can we look at each other and make the decision to love the person standing in front of us despite all the years of hurt and trauma. We are in a place where we really do not know much about each other anymore–which breaks my heart–WE as a couple have lost sight of our vows and WHY they are important to us. I love my husband with all my heart–and as time goes by and I get stronger and able to do more things, I know things will get better between us; but some days right now —its JUST HARD. Its not just hard–its DAMN HARD.

Living behind the veil of a chronic disease does more than destroy your body, dreams, careers, relationships; but it can also, IF YOU LET IT, destroy your marriage. I am a fighter and I am not going to let this marriage slip away without a fight. I fought hard for my health, my surgeries, my son, and now my healing—there is no way in HELL I am going to let this ugly disease take my love. I recognized the road we face is long and painful–probably having to relive some of the hurtful things we have said to one another, or felt towards one another–which are ALL NORMAL reactions to a situation such as this.

I share with you my story because I believe that there are others who are managing similar situations. That they too are unsure where to go to next, and by bringing light to this situation–we can begin the healing process associated with it. THIS is the REAL, RAW, UNFILTERED LIFE with chronic illness. Its messy and beautiful all at once. I honestly believe that there is not enough written on this aspect of chronic illness. Yes, the patient is the one in the pain–but so is the caretaker/husband/partner. They deserve just as much support as the person who is enduring the illness. Because not only are they caring for someone that feels awful; they are often holding down a job and trying to care for additional responsibilities.

I hope what you take from this blog post is sincere appreciation for all the caregivers in your life–and for all the HARD work that both the patient AND the caregiver have to put in to continue to make the relationship keep going. Its not like this for all people, but I am certain that many can identify with these feelings.

Adios 2019 and Hello 2020…

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As this decade comes to a close, I have found myself spending a great deal of time reflecting on what the last ten years has meant to me. These last ten years of my life have been the hardest, most rewarding and painful (physically and mentally), that I have ever experienced in my adult life. This decade has been quite honestly, the decade of pain–for it was during this last ten years that I had three spinal surgeries, developed chronic migraines, endured countless infertility and medical treatments, completed my Ph.D, and gave birth to my son.

I am really not one to jump on the “new year’s resolution ” train; but this upcoming year has me pausing and really looking inward to what I wish to achieve over the next year. As someone who suffers from a chronic illness, It can be a bit daunting to try to set “BIG” goals for a year–because sometimes you just can’t meet them. The first half of my life I was a go getter, self motivated, strong willed, type A personality who could accomplish ALOT in a year’s time. But now, with this chronic neurological disease that I battle every day, its hard to really set the bar VERY high for expectations for this upcoming year.

If I have learned anything in the last decade, its that NOTHING in this life can be taken for granted–if you do not have your health–you have nothing. So as we ease into this new decade–I too will be easing into my “New Year’s Resolutions” which include things such as more time with family, more pacing and management of my attacks and setting an intentional mindset to focus on the joy and happy things in my life. Because, this illness is not going anyway anytime soon, and, I have to learn to better manage it so that I can one day set lofty goals for myself.

But for now, I will spend my days settling into my routine of writing, meditating, practicing yoga and spending LOTS of time with my son. Being a stay at home mom was never something I sought out–in fact, I always imagined myself as much more of a career driven person–but God had other plans for me–and over this next year’s time, I plan to seek out his purpose for my new found life, hold tight to the good/low pain days, and soak up all the precious time with my son.

May you all have a restful and wonderful 2020! Happy New Year!

Five Tips to Help Prevent and Combat Caretaker Burnout.

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As a someone who suffers from a chronic illness, it is common to need your own “support tribe” to help manage your day to day life. Often this falls on the spouse or partner (if you are in a relationship). But this could be anyone including a friend, or other family member.

Since my chronic illness diagnosis six years ago, my husband has been my main caretaker. At the time, we lived over 3,000 miles from any family…so we had to lean into each other and ride the waves of the “chronic life” together. After we became pregnant with our son, we made the decision to move closer to family—so while I was 6 months pregnant we made the move across country to North Carolina for my husbands job.

Being in a new town, with a new baby; we quickly discovered that; yes we were (somewhat) closer to our families–but we were faced with an even more daunting situation than before—we now had a newborn (that never slept more than 30 mins at a time for the first 6 months of his life), a new job (for my husband), and my chronic migraine attacks; which coincidental became MUCH more severe after giving birth. Family did come and help as much as they could, but my husband became the main emotional, physical and now financial support for our family. I was completely unable to work- which to be honest we had decided prior to moving, that it would be good for me to take a year to enjoy being a new mom and get acquainted with our new town. When we lived in Oregon, I worked full time most of the 5 years that we lived there and juggled surgeries, chronic migraine attacks and infertility treatments.

When we took our wedding vows 15 years ago, we never imagined the “in sickness and in health” part would happen so early on in our marriage. All in all, my husband has done a fantastic job of juggling the last two years. These past two years have been significantly more challenging than the other four years since being diagnosed with chronic migraine, because we now have another human to care for; our son. Being a “chronic parent” is hard, and being a caregiver to a “chronic parent” is an even more daunting task. There have been some REALLY hard days in our marriage–and there will be more–but we are both extremely committed to our relationship and making this marriage work. We love each other, and take our vows very seriously.

Since having our son; the emotional, physical and mental strain has become increasingly hard for my husband. He is our main source of financial income, since I am currently unable to work. He also helps me out often with trips to the doctors, and juggling his schedule to step in as primary caregiver for our son, when I am having a bad attack. Furthermore, he is my emotional support when I fall apart from having a major setback or a really bad flare day (week or month).

A few months ago, it became apparent that he was at his breaking point and was beginning to experience Caretaker Burnout. After six, long and hard years of surgeries, infertility, pregnancy, losing loved ones, moving cross country, starting a new job, inpatient hospitalization and relentless chronic migraine attacks; the weight of being the #1 caretaker began to take a toll on my husband mental and physical health.

Signs of Caregiver Burnout

There are some great articles out there on the internet that address this topic, but I found this comprehensive list here. The signs include:

  • You no longer find pleasure in things you once found enjoyable, or you have no motivation to participate in previously enjoyed activities
  • Friends and family have expressed concerns about your well-being
  • You’re getting negative feedback at work
  • You’re having problems with your spouse
  • You experience intense and recurrent feelings of anger, sadness, worry or fear
  • You have difficulty concentrating, trouble sleeping, notice drastic weight changes (significant gain or loss), or unexplained health problems
  • You find yourself using a substance to cope with, manage or suppress uncomfortable or painful feelings.

The author notes that there are also signals caregivers should know that indicate they’re at risk for developing caregiver burnout in the near future. These include:

  • Regular thoughts of anger or resentment toward the person you’re caring for
  • Irritation toward others who aren’t helping with your loved one’s care
  • Isolating yourself from people who aren’t involved in providing care to the person
  • Consistently arriving late to appointments or to visiting the person receiving care, or often leaving early

Since November is National Family Caregivers Month; I felt the need to address this issue. Caretaker burnout is 100% REAL; do not be fooled, it happens and when it does the wheels can quickly start falling off the bus. I felt it was extremely necessary to highlight some key areas in assisting in caretaker burnout. So I have compiled five strategies/tips that could benefit others who are in a similar situation to our family.

TIPS to Navigate Caretaker Burnout:

Communication, Communication, Communication: In any relationship communication is a KEY to success, but in a chronic health/caretaker situation it is VITAL. Ensure that caretaker and patient are in constant communication with each other about their needs. It is 100% ok for the Caretaker to say, “I need a break”–or “I am feeling overwhelmed”.

As the chronic patient, it is important that you DO NOT take this personally ( I know I always do and am working on this :)). My husband and I have had many a disagreements over this-which usually ends with me spiraling into an attack. We are still navigating the best way to communicate this information to each other- there is no right or wrong way. But keep the lines open–however you decide to communicate with each other.

Caretakers SHOULD TAKE TIME FOR THEMSELVES: THIS is a must! The caretaker absolutely SHOULD take some time for themselves. This could be some time to read, go to a movie, relax watching TV–anything that they are not 100% in charge of anything. Caretakers should communicate their desires and BE flexible if something is to come up (as it often does with a chronic health condition). If it is something that they can not be flexible with, make sure the call in back up to help the patient. Caretakers 100% deserve time to themselves. My husband for example enjoys smoking a cigar and reading after the baby and I are asleep–this is HIS time to do whatever he likes–this gives him more time to recharge and to be even more present when I need him.

ASK for HELP: Often, asking for help is perceived as weak. But, what I have learned through this entire chronic process is that asking for help is actually STRONG. If the caretaker needs help, make sure they feel comfortable asking for help. This could be for extra hands to help with our son, or for mental help such as therapy or counseling.

If the caretaker is skeptical or nervous about making that call to a therapist there are now online therapy apps that can be used. For example, one of these apps is called Talk Space. This is a great way to be able to have that third party to talk with without ever having to leave the comfort of your home.

Gratitude/Meditate: Meditation and journaling on things I am grateful for has been a serious GAME CHANGER for me as the chronic pain sufferer. It is just as important for the caretaker to emulate these things if they feel as if they are burning out. It will look different for everyone–for some it could mean getting outside and walking/getting exercise, for others it could be downloading apps such as insight timer or calm; to help them meditate.

Finding the good things in your life can flip your entire perspective of your situation. Taking 5 minutes to write down 5 things you are grateful for, can completely change your attitude.

Acceptance and Education: One of the hardest things about taking care of someone with a chronic illness is accepting that this could be their AND YOUR forever. Acceptance takes time, so dont force it, work through the feeling either through journaling or talking with someone OTHER than the person suffering with the illness. The chronic illness suffer is going through their own levels of acceptance–which are different than yours–so its important to talk to someone else or journal about it. GET THOSE FEELINGS OUT. Again it is a process, so do not expect to be 100% on board over night.

The other piece to acceptance is education. Yes, you probably feel like you know EVERYTHING about the chronic condition; but I guarantee you that YOU DO NOT. Educate yourself on the condition, what it feels like (put yourself in their shoes), talk with others with the same illness, join a support group, READ, etc. The more you know, the more you will feel in control and the ability to help. Which at the end of the day is all most caregivers want to do is to HELP. But many aren’t sure HOW.

These are just a few tips on Caretaker Burnout prevention but there are MANY other articles out there…here are a few of my favorite:

Enduring Infertility Treatments and Pregnancy while Managing Chronic Migraine

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Our Story

When my husband and I got married in 2005, we decided to wait until we were 30 to start trying to have a family. That would give us 5 years to enjoy being a couple, explore and travel; before embarking on the family adventure. It never occurred to either one of us that we would encounter problems with infertility. I had always been a regular lady with my menstrual cycles and as far as we knew all systems were go on his end. So when we turned 30, I went off the birth control pill and we began to start our family.

After a year of trying, we began to get a little worried; was there something wrong. My OBGYN assured me that from what he could tell, all seemed good, and that sometimes it takes longer to get pregnant for some women. So we stepped up our game by taking ovulation tests and taking my basal temperature (you body temperature rises a few tenths of a degree when a woman ovulates).

At year two, and still no baby; we were like OK, something is up–BUT–we also had just decided to embark on an amazing adventure and move cross country to Oregon. So, for several months until we got settled into our new home, the family making was put on the back burner. By this time, I had established an OBGYN in Oregon , who said that they could put me on some medications that would increase our chances each month–we said sure that sounds great. Then in 2014, we had a MINOR car accident, and that is when the Chronic Pain Chronicles began.

After the car accident (again minor and no one was visible injured) the wheels on my health bus started to fall off. My first cervical surgery was in 2014. Six months later, all the symptoms came back and my second surgery was in 2015. At this point, we were trying different things to help with getting pregnant in between my surgeries, recover and working full time. I was a HOT mess. I was in constant chronic pain, but was determined to get pregnant. In 2016, it was discovered that I had yet another issue that would require surgery. This surgery was a success!

It wasn’t until I had my final surgery in 2016, and had begun the healing process from that; that my husband and I decided to try IVF to become pregnant. At this point we were both 36 years old, and figured if we gave this a try and it worked GREAT; if it didn’t work, we could say we had “given it the college try” and then we would hang up our “parent hat” and move on with our lives. To be honest, emotionally, physically and financially we were both at our breaking point.

All in all it took my husband and I, EIGHT LONG years to conceive our son. Of the eight years when we were trying to conceive our son, I was in chronic pain for four of those years. During these four years, I lived with a chronic migraine EVERY DAY—It was HELL on earth. Those four years, where the hardest and most painful years of my life; both physically and emotionally. But having a family, and getting pregnant was SO much a part of who I was that I did not care; chronic pain and all–I pushed thru each month with fertility treatments to get pregnant.

Diagnosis/ Treatment/Medications

Enduring the stress of infertility treatments without having a chronic migraine is stressful enough. Tack on EVERY DAY searing migraine pain, and it was down right brutal. We were diagnosed with “unexplained infertility”–which basically means there was nothing wrong with either one of us–just for some reason we were not getting pregnant. The most viable option for us was IVF. We of course, took a while to come to the decision to do IVF–for the cost, medications and how they would effect me, as well as the unrelenting stress–which was MORE than a chronic migraineur can handle.

Before going through with IVF–I endured 8 rounds of IUI with clomid or femara. The ONLY reason we did that many IUI’s is because our insurance covered it–and we were up to our NECK in medical bills from all my spinal surgeries and not ready to take on a $20,000 bill for IVF. After my 8th IUI which was unsuccessful, our fertility doctor said–you guys can keep doing this OR move on to IVF—its up to you. At this point as I mentioned above, I had just healed from my final neck surgery. And thought OK, maybe my body, the chronic migraine and ALL the stress my body had been under for 3 years will relax now and we can embark upon doing IVF. Decisions were made and we decided to move foward.

The medications associated with the IVF process ARE BRUTAL for migraine. I felt like I was on a merry-go-round of hormones and pain. I couldn’t be on any of my preventative meds or take any abortives while we went through the IVF process. It was SUCH A PAINFUL time- physically and emotionally. I relied heavily on ice packs and ginger gum to get me through the HARD pain days.

We went through our IVF cycle in March 2017–which would have been almost 7 months post surgery for me. I felt pretty good–still had daily migraine attacks but was in such a better place pain wise than I had been in years–so we rolled the dice and started the process. Our fertility doctor told me that most women who have migraines, will no longer have them while they are pregnant—so I hoped, prayed, and thought good thoughts that I would be “one of those women”. We had our embryo transfer on March 23rd–then waited the dreaded TWO WEEKS to find out if it had worked. On April 1st, I went in to take my beta blood test—it came back positive…I WAS PREGNANT. All the years, tests, drugs, and pain quickly became a blur, as the excitement of FINALLY being pregnant overtook my husband and I.

But, as the months went by—the chronic migraine NEVER WENT AWAY. I endured 9 LONG months with a migraine every day–varying in intensity. But still every DAY. I prayed and prayed that when I delivered the baby that my migraine would disappear. Unfortunately–it did not. And here I am two years later–6 years now of chronic migraine–and a Mom to a toddler.

Enduring infertility treatments and pregnancy with a migraine was HELL on earth. Like I mentioned earlier–you can not take anything for the pain. Yes, it was hard, but I like to think that during that time is when I developed some of my best pain management tools (accupuncture, massage, biofeedback training, emotional freedom tapping, deep breathing, journaling, yoga, meditation etc). Which have come in handy now that I have a toddler and still managing chronic migraine.

If you are going through infertility or considering getting pregnant and you have chronic migraine, I would say follow your gut–for me, my Son has given me purpose to keep going, keep pushing, keep advocating to find a cure for this disease. It is SO SO hard being a parent with a chronic disease with no cure. But I am SO much stronger for enduring all that I did. I am glad I took the path I did, I wouldn’t change it for the world.

If you have further questions regarding fertility treatments and pregnancy while managing chronic migraine please feel free to email me at: the.mindful.migraineur79@gmail.com , or feel free to DM me on Instagram. I am happy to help any way I can.