SOC(k)s and Spoons for Christmas

A huge Christmas gift came early this year…the end of exam week to be exact. Against all odds—through the grace of God, understanding professors, my ever-accommodating academic advisor, unreal parents, Perfect Paddy, and an unbelievably supportive boyfriend—I was able to complete all but one of my classes. With a month of classwork to make up, I was swamped and stressed for the majority of the second half of the semester. It took an absurd amount of patience from everyone around me, and mostly from myself, to get through it and crawl my way to the other side. I usually tell people, when they ask me how I am able to persevere, that I have to take it “one day at a time.” At one point last month I used that line on a doctor and she looked me square in the eyes and said, “I am so very sorry, but that is not going to work anymore. You need to take it one minute at a time.” So that’s what I did. Thankfully that was the moral of every pep talk I received from Mark or my parents. I’m embarrassed to admit how many times I needed to hear it. However, instead of “Cognitive Development”—the course I had to drop in order to stay afloat in my studies, I was schooled intensively in patience.

As I prepared myself for an exam that was worth over half of my grade in Developmental Psychology, I was intrigued by a theory developed to model how the elderly deal with the effects of aging. I immediately recognized this as a strategy I have employed for years. Selective Optimization with Compensating (SOC) is used to define the way older adults alter their lives to declining physical and psychological stamina. According to the SOC model, successful aging encompasses focusing (Selection) on a small number of the most important and attainable goals and abandoning all others. It entails “accentuating and reinforcing those capabilities impacted only slightly by the aging process (Optimization) and generating new ways of sustaining function in those aspects which are greatly impacted (Compensation).” The ultimate purpose of this practice is to continue living a satisfying life with the restrictions placed upon the individual by the physical and intellectual deficits caused by aging, or in my case: illness. Adjusting to a life of chronic illness and the limitations it has placed on me has been a gradual, sometimes painstaking, process. It was an evolution that I found myself fighting against relentlessly at times. I still today occasionally grieve the loss of function and normalcy, but reflecting on the way I learned to adapt to my “new normal” reminds me of the magnificent resilience that resides within each of us. To be able to change one’s habits and mindset is an invaluable strength. In a lot of cases it is the only option that lends itself to victory. There is nothing special about me that allowed me to persevere through this troubling process. Instead, it is in the constitution of everyone’s being, through uniting one’s soul (and Will) with the great source of Love that enables us to overcome what seeks to destroy us. The power of that capacity lies in the trenches of patience. I’m thankful to have been lying face first in the dirt of those ditches recently.

I am particularly grateful to have developed the SOC strategy so early in life because it is what has enabled me to continue narrating my own story. I have been slapped in the face with the knowledge that so much of this universe is beyond our control, but I am also privy to the awareness and appreciation for the aspects of my experience,…over which I do have clout.

I consider raising awareness to be the single most important consequences of my blog posts. For that reason, I am immensely grateful for everyone who continues to take the time to read what I share. It gives me such hope to think I play even the smallest hand in increasing others understanding of those struggling with chronic invisible illnesses, especially those like my own that elude diagnoses and relief from treatments. A woman by the name of Christine Miserandino is a hero of mine because she has done immeasurable good through her simple, but poignant, way of teaching others what it is like to live the way we “spoonies” do. My Christmas wish this year would be for everyone to please take a minute to read the Spoon Theory: https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/.

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A boy who is very special to me (the one with two legs, not four), gave me the most beautiful Christmas gift to represent Christine’s message, which I shared with him very early in our relationship. I will be honored to wear it around my neck because it stands for all the uphill battles and silent struggles conquered by countless heroes and heroines disguised as able-bodied individuals. Anytime anyone wonders of the meaning behind the utensils hanging from my necklace, it will give me the opportunity to spread knowledge and compassion for the extraordinary efforts, usually unnoticed, to persist in spite of bodily pains.

The trials of the world may dictate how many spoons I have on a given day and when those resources are stripped away seemingly unfairly, but God’s ultimate gift of Free Will granted me the power to choose where I allocate those precious spoons. For as long as I possess the faculties to select, optimize, and compensate, I vow to do my best to use my spoons for Good….but when I falter, I beg for patience, from others and myself.

So this starry Christmas night I reflect with a thankful heart on that for which I am most thankful: SOC(k)s, spoons, and the people that surround me in my days of sickness and of health. My goal for the New Year is to always remember to pray for everyone who keeps us on his or her prayer list. May God keep you all safe and secure in His Love. Sending everyone the merriest of Christmas wishes and hopes for an infinitely happy New Year!

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p.s. May rich blessings reach, in a very special way, those who so generously donated to my fundraiser for my doctor’s ALS Clinic. It was an honor to be able to present Dr. Heiman-Patterson with a check that she assured us will take their efforts and research far in the new year. She was humbled and speechless, but asked me to express her pronounced gratitude to everyone who pitched in to make the online campaign such a success. 

Razoo was so impressed with how successfully and quickly we brought in money using their platform that they approached us to do a “case study” and publish what they learned in hopes of helping others who seek to fundraise for their own causes (https://blog.razoo.com/how-a-personal-fundraiser-raised-13-000-in-10-days-65ff4ce5728f#.uoi3n0lc3).  Thank you to everyone who made this possible!

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Surviving the Aftershock

Today marks one week since I was released from the hospital following my 5-day Ketamine treatment. I owe an overwhelming amount of people extraordinary thanks for the way my family and I have been cared for, prayed for, supported, embraced, encouraged, and unconditionally loved throughout this experience. All I can do at this point is offer my humblest and profoundest appreciation to everyone who has reached out in any capacity. This is perhaps the hardest blog-post I have ever attempted to compose due to how inadequate any expression of gratitude feels. 

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I pray my thankfulness rings through the short message I am about to share. 

Thank you to Mark for not only giving up as much of his Fall Break as he did to spend time with me throughout the week in the hospital, but for so graciously taking the time and energy to assuage concerns, respond to inquiries, and relay information. Without the thoughtfully crafted updates from “Paddy” and the countless questions my family and Mark have patiently answered for me over the past week, I would have very little knowledge of anything that happened after the first day checking into Hahnemann Hospital.

As anticipated, due to the sedative nature of the protocol, I have practically no recollection of how the week transpired. However, what I have is a painfully raw, upsetting, and terrifying aftermath. My “transition” could not have been more dramatic or jarring. I have dealt with a novel aspect of illness, mental distress requiring immediate medical action. Post-treatment I was bombarded with severe anxiety and an acute state of depression that has shaken my loved ones and me to our cores. This dreaded possibility, a most unfortunate outcome, has proved to be the most daunting and trying cliff I have ever been forced to ascend, as my ability to continue existing has been perceivably impossible over so much of the past week. To describe these effects as seeming “earth-shattering” feels like a pathetic understatement. 

Now seven days “out,” I am no where near “out of the woods;” in fact, I have never felt so “in the thick of it.” However, with an aching body, throbbing heart, and tired mind I am eternally thankful to be able to say that I’m still here for seven reasons:

  1. The unending and unconditional devotion of my parents.
  2. The steadfast care of my sister and brother.
  3. My loyal side-kick, the most loving Paddy-boy. 
  4. My rock and best friend, Mark. He walked into my life a year ago and has become such a special member of my team. He courageously and selflessly rose to the challenge of seeing me through this dark time as the most noble knight in shining armor I could imagine. 
  5. All the kindness and prayers of my support system. 
  6. My team of doctors who rose to the occasion of seeing me through every day. 
  7. A Higher Power….Who miraculously appeared as an inner voice that whispered “don’t give up, you might get through this if you give it one more try” and has accompanied me across the country to receive treatment in California from a special practitioner who hopes to help detoxify my body of all the physical toxins, cleanse my mind of the psychological turmoil, and restore my soul from the emotional trauma. 

My current trip to San Diego is inspired by a reaction to the drugs having such detrimental effects on my Central Nervous System, and, therefore, we are especially grateful for your continued prayers for the stability of my body and peace of my mind.

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I sign this off with nothing but appreciation for the gift of life and miracle of Love,

Francie

 

Days 6-8: No Place Like Home

Hey everyone!

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My apologies for the tardiness of this final update on mommy…I’ve been so excited to have her home and caught up in the recovery of her treatment. I appreciate everyone’s patience!

This past Saturday morning was filled with anticipation about when mommy would be getting out. She woke up after a patchy night of sleep and exhausted from the long week of the IV Ketamine protocol. The original plan was to start weaning her off the drug on Saturday evening and leave on Sunday morning, but after Mr. Fitzgerald and her doctor spoke on the phone, they agreed it would be good for mommy to see me sooner and sleep in her own bed that night. As a result, they began weaning down off the Ketamine starting at 1:00pm on Saturday afternoon.

Marky was with her that morning, and after getting the go-ahead from Mr. Fitzgerald, he communicated with the nurses to begin winding down the treatment so Francie could go home that evening. Upon hearing the news, Francie held her hand up for a high-five, wearing a smile, and immediately fell asleep for most of the afternoon with the comfort of knowing she would soon be heading home.

Later in the afternoon as mommy’s Ketamine was being titrated down every two hours, her parents arrived and began packing up the room in the ICU. At around 8:30pm, my mommy left the hospital, physically and emotionally drained from a week which is yet to manifest positive results from a pain relief standpoint.

As mommy wrote in her blog before the treatment commenced a week ago from today, the hope of the IV Ketamine protocol was to sedate her, allow the drug to “reset” specific neurological receptors that have been inaccurately communicating with her body, and grant her some relief from the intractable pain that has plagued her for over 6 years. Going into the treatment, one of her doctors hypothesized that there were factors specific to Francie that pushed her on either side of a 50% chance of it working. To Francie and her team’s disappointment, we are now of the belief that the treatment had little positive effect on her pain levels. As she continues coming off the drug, her body has not shown the signs one would hope to see at this point to indicate a degree of success from the Ketamine. While it is still possible mommy will receive some relief in the coming weeks, the likelihood of that remains low.

With a heavy heart, I welcomed my mommy home on Saturday night with her parents and Mark. I immediately had to share additional saddening news with mommy – my sister Matilda, the Fitzgerald’s 7 year-old St. Bernard, was suffering greatly from a recurring bout of Lymphoma. Francie and her family shortly shifted focus to Matilda, taking her to the vet that night and making their way back home prayerfully hoping for a miracle on her life. That night proved difficult on many fronts, and as the phone rang at 7:00am on Sunday morning with news that Matilda had passed, our hearts sank further.

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With Sunday off to a grieving start, my mommy began evaluating how to approach the remainder of the semester with her family. The likely failure of the Ketamine protocol exhausted Francie even further, and it has continued to weigh on her over the past few days as she hopes to look forward for the next step. As one might expect, however, her body has continued to go through withdrawal from the drugs and leaves her despondent, saddened, and defeated from a week gone awry.

Being with her most waking moments of the past few days has been difficult, but as we all know, her strength and the resilience of her family will help pull mommy up. The process will take time and patience, so I would ask that we all do our best to support her through thoughts and prayers. This exhaustion has made it difficult for her to communicate about how she is doing, so as we look to slowly step forward one day at a time, please consider affording her the space to do so. She has told me how much your support and care mean to her, and she is appreciative beyond explanation for how each of you continue to play a unique role in her recovery.

With the long week behind us, my mommy and her family will begin evaluating the next steps at a thoughtful and prudent pace. Francie will be taking this week off to recover and gather herself before deciding on whether to continue her semester at home or back at Notre Dame.

So here’s to two tremendously strong girls in the Fitzgerald family – Francie and my sister, Matilda.

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May we turn to the comforts of family, faith, and home as sources of strength and hopefulness for better days ahead. As she always has, mommy will regain her footing with the help of family, friends, and faith – but for now, let us all hope and pray that Francie and her family recover physically and emotionally from what is certainly a difficult time.

What is also certain is the meaningful impact that her support system has had on her and her life. I see it every day, and all of you who know her are aware of her gratitude for your thoughts, prayers, and hopefulness. So here’s a thank you from me – thank you all for your well-wishes and continued support, care, and love for Francie. God knows she deserves it.

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With tremendous love and appreciation,

Paddy

P.S. A tribute to a great matriarch in the family, Matilda Fitzgerald —

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Day 5: Field Trip Friday

Hi everyone!

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Today was a super special day! Not only is Francie nearing the end of her treatment, but she even got to go for a field trip today — The nurses in the ICU agreed to put mommy in a wheelchair for a brief amount of time and take her out of her room…to see me!

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After school today, Teddy and Gabby brought me over to Hahnemann/Drexel University Hospital where mommy has been staying since Monday. There, I was able to meet mommy in the waiting area on the first floor. Tails were wagging and smiles were abundant as the loving relationship between me and mommy was obvious to everyone on the floor. What a wonderful treat! Leave it to us to find a loophole…no way were we going a whole week without seeing each other.

In regards to mommy’s treatment, she had a bit more of an active day, in part due to the stimulation of seeing me. Mr. Fitzgerald spent the night last night and informed me that Francie didn’t have the best night’s sleep, but has remained in good spirits with smiles, jokes, and a much-improved appetite. She also had some family and friends briefly visit throughout the day, and Mark will be spending the night with her as well.

As Francie approaches the final full day of her IV Ketamine protocol,  we remain hopeful that positive results are manifested through pain reduction. However, the doctors have informed us that because each patient responds quite differently to the treatment, it will be hard to know the extent to which the treatment helped grant Francie relief until the days and weeks after it concludes.

Whether mommy is discharged from the hospital tomorrow night or Sunday morning is still to be determined, so the doctors will need to decide what is best for her. I’ll keep you posted on that.

Finally, another huge thank you to all who have supported the fundraiser this week. “High-Five for Heiman-Patterson” has continued to development into one for the record books, as we have now raised $12,520 for ALS research from 106 donors! This amount will also be matched to fund POTS research at Vanderbilt University!

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Mommy and I are both getting a little sleepy, but please stay tuned for another update tomorrow on her status. She has expressed such gratitude for all of your support!

Very sincerely,

Paddy

Day 4: Turning the Corner

Hi!

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Back again to update you all on how mommy’s doing — Today concludes her third full day of the IV Ketamine protocol, which means only a few short days before she’s resting in the comfort of her home with me and the rest of her family!

Last night was a very good night for Francie. She had her best night of sleep and dealt with the fewest side effects from the Ketamine. Her anxiety and paranoia were held to a minimum, and she largely slept through the night. Mark was there with her in the hospital and remained there throughout the morning and afternoon today. He told me that the additional medications given to her to combat the side effects were helping mommy remain drowsy and at a lower activity level – positive signs that she’s giving the Ketamine its best shot at helping reduce her pain.

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Teddy and Gabby arrived in the early evening, followed by Mr. and Mrs. Fitzgerald shortly after. Francie will continue to have someone by her side overnight as Mr. Fitzgerald will keep my mommy company. At this point, my mommy’s days are a little more routine. Every few hours, the nurses administer a combination of certain drugs in order to mitigate the side effects while also ensuring that her vitals are within the ranges that the doctors are comfortable with. Her daily labs have again come back this morning, positively indicating that her kidneys and liver are functioning properly and that her Ketamine levels are at a good place. Overall, today was quiet and restful for mommy, a theme we hope to continue until she is discharged either late Saturday evening or Sunday morning.

The big news today is that Francie’s fundraiser for her neurologist’s ALS research, “High-Five for Heiman-Patterson,” has exceeded its goal of $10,000 by raising $11,040 and amassing 92 total donations! Please also keep in mind that every dollar raised towards this fundraiser will be matched to fund POTS research at Vanderbilt University! Francie and her entire team are tremendously grateful for all of your contributions to this important cause.

These days without mommy feel long, but I’m doing my best to trust and remain hopeful that she will experience some relief from her pain. To all of you thinking of, praying for, and supporting Francie in your own ways…thank you. We are all so grateful for your generosity and thoughtfulness during this time.

For me, it’s getting close to my bedtime…

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Goodnight everyone!

With a full heart,

Paddy

Day 3: Overwhelming Support

Hello again! Guess who?

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That’s right, the cutest service dog on earth…or as mommy calls me, an angel. Not trying to stroke my ego or anything, though. Anyway!

Mommy’s great – she was actually a little more active throughout the day after having now been fully dosed for over two full days of the Ketamine treatment. In order for it to have the fullest effect, though, it’s important that my mommy stays as sleepy and inactive as possible. Slight side effects have grown marginally more consistent, such as spells of anxiety, but all is within the realm of expected behavior of the protocol. The nurses have been prudent in administering additional medications as needed to counteract these side effects. She has a great team here.

Speaking of her team, Francie was accompanied by her mom for the night yesterday, and throughout today had her mom, dad, Teddy, and now Mark keeping her company for the rest of tonight. The true highlight of the day for my mommy, however, has been the incredible support pouring into her room in the ICU in the form of flowers, photos, messages of support, donations to the fundraiser for Dr. Heiman-Patterson’s ALS research, and the continued thoughts and prayers of all those who know and love my mommy. Francie and I both thank you from the bottom of our hearts for all of this support!

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Quick break from the serious stuff. Check out this wonderful memory of me and mommy in Avalon!

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Wait, where’s the water? ….

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Ah, there it is! Swimming on Cape Cod with mommy and her siblings is the absolute best. My life jacket definitely makes me the coolest.

Okay, back to an important note: unfortunately,  my mommy will be in the hospital longer than we originally understood going into the treatment. Because it’s a five-day process, Francie will actually need five 24-hour periods of IV Ketamine and will then be weaned off of it gradually. This will mean that she’ll likely be dosing down Saturday evening and heading home for good on Sunday morning. We will keep everyone updated on this, though!

As I mentioned earlier, the theme of today has been support — from family and friends to the strangers inspired by her blog and commitment to fighting her chronic illness, it has been truly touching. Francie’s attitude has been nothing short of inspiring for me. And she calls me the angel…

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As mommy sleeps tonight, I’m sure she would like me to also update everyone on our fundraiser! We are very nearly at our goal of $10,000 with $9,475 raised up to this point. If you have not already done so, please consider supporting Francie’s doctor, Dr. Heiman-Patterson, and her ALS research using this link: https://www.razoo.com/us/story/Ext4hg

Francie is currently fast asleep (…hopefully dreaming of me), so I’m going to do the same. I look forward to updating you all again tomorrow evening!

Thank you all for your continued support of my hero and best friend.

With a hopeful heart,

Paddy

Day 2: All is Well

Hey there!

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Me again! Despite the crazy hospital policy that prohibits service dogs from staying in the Intensive Care Unit, I’ve been kept well-informed on how my mommy is doing and would love to share her progress with everyone (Mark has decided I’m the better writer. And much cuter).

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It’s now been over 24 hours since Francie began the full dosage of her IV Ketamine protocol, so she is very much in the full swing of the treatment. Last night, my pal Marky slept there to keep Francie company, and he told me that she remained asleep for most of it. Around 5:30am this morning, Francie’s neurologist, Dr. Heiman-Patterson, checked in on her for the first time. Her gracious words of admiration for my mommy helped her crack a smile in the midst of a strong bout of cloudiness, but Francie proceeded to thank her doctor and have a brief dialogue about how she was feeling — mild pain in her extremities and general fogginess in between her periods of sleep.

Later this morning, Francie was able to stand up largely on her own to brush her teeth, a positive sign of her strength. Around 9:45am, Mr. Fitzgerald arrived and kept my mommy company for the remainder of the morning and early afternoon until Mrs. Fitzgerald came to spend the rest of the night with her.

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Generally, I’ve been told my mommy’s symptoms are in line with what is to be expected, and the nurses have done a good job of administering additional medicines to help with sleep and the anxiety induced by the Ketamine. I’ve been promised she is in good, attentive, and especially loving hands as she concludes her second day at Hahnemann/Drexel University Hospital.

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Finally, we’ve currently raised $6,585 out of our total goal of $10,000. As you continue to think and pray for Francie throughout the week, please also consider supporting her fundraiser, “High-Five for Heiman-Patterson,” to the extent that you are able. This money will go towards her doctor’s groundbreaking ALS research. Please follow the link to read more: https://www.razoo.com/us/story/Ext4hg

Again, thank you for your continued support for my mommy as she approaches her third day of treatment. Your thoughts, prayers, and contributions to the fundraiser are especially well-appreciated.

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I’m getting sleepy, but I’ll be back tomorrow with another update!

With great hope,

Paddy