Help Marisa Recover
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Marisa Marinelli is one of the strongest people I know.
As a close friend, I have had the pleasure of getting to know Marisa over the past year. I run a theatre arts organization on Mount Desert Island in Maine, to which she has so generously given so much of her time, expertise, and boundless energy. Now, it's time to give back to her.
Over the past two months, Marisa has been battling for her health and for her life. Diagnosed with Ulcerative Colitis back in 2003, she has been enduring the worst flare-up of the disease since her diagnosis. Two-thirds of her colon have been inflamed and she has been unable to properly ingest and disgest food since mid August. As a result, she is suffering the effects of starvation -- weak from lack of nutrients and severly underweight.
After 22 days in the hospital and full-time at-home care, Marisa is finally on the long road to recovery. She is able to retain more food and is slowly gaining strength, but the healing process will be long and expensive. Marisa is in the middle of a 12-week unpaid medical leave from her job. Between the medical bills not covered by insurance, necessary supplements, essential bodywork sessions, and general living expenses, she is deeply in debt. Every little bit of support will help her as she heals.
I have been blown away by the strength Marisa has summoned to fight this disease. The financial part of this battle, however, is one that she can not presently win alone. Please read the personal letter from Marisa below for more about her story, and thank you so much for your help.
-Brittany Parker, co-producer of the Barn Arts Collective
From Marisa:
On August 31st, I went into the hospital. I did not know I would be spending 22 days there. Each day that I did not improve I feared what my future would be and I feared for my life.
Most people know that I was diagnosed with Ulcerative Colitis back in 2003. I made my illness public in order to share my journey and inspire others to seek further guidance in their own illnesses. I truly believe there is always hope past what western medicine has to offer. We don’t need to be much reminded of that these days and that movement becomes stronger and stronger. All of my recovery story was true and I’m forever grateful for what I accomplished in the last 12 years and the life I’ve been able to live medication-free for so long. I was able to recover from my colitis through natural remedies and making drastic changes to my life in the sense of mind, body and spirit. Of course recovery is only what you make of it. It’s consistent commitment to yourself. If you start to loose that commitment, you can re-create your illness.
I truly believe that people should never give up in seeking true health and happiness. Fear of loosing people’s hope makes writing this all the more difficult. I guess I’ve allowed a great deal of fear to overcome me lately, as I feared sharing my most recent struggles would put doubt that my past recovery was successful. This fear also made me keep myself closed up to those that I should have reached out to for love, guidance and support during this difficult time. Rather then reach out and let people know what the real truth is, I feel as though I’m hiding and retreating inward. Well, I don’t want to do that any longer, it’s time to let go of fear for we cannot move forward with it. Whatever the outcome of people’s thoughts may be, I need to finally feel as though I can be open and truthful about what is happening in my life. I’m putting myself out there in a way I have not ever done before and I ask, please do not give up hope for illness recovery, and please do not give up hope for me.
My current flare was a result of my own actions and lack of attention. Starting in late July, I began having some symptoms, which I knew needed to be addressed urgently. Unfortunately, life happened and led me to not be able to grasp hold of the symptoms and give it the proper attention in time. I can talk about the numerous things that were happening in my life at the time, but I think better not focus on the things I cannot change, and only focus on the things that move me forward from here. The real trouble started when symptoms manifested to the point where eating any food at all was nearly impossible. Each person diagnosed with IBD will have symptoms that manifest in different ways, for some reason, my manifestation prevents me from ingesting any food. Whether it’s emotional, physical or both, that then becomes the scariest part of my illness because I’m dealing with the issue of starvation as I watch and feel my body deteriorate each day. That is the point where I need extreme medical attention to keep me alive. At this point, in addition to my colitis symptoms, I began to starve to death.
The decision to go into the hospital was necessary but also caused major setbacks. Without going into details of the current medical system, I was not able to get the treatment that I believe would have sped up the inflammatory recovery process. My disease progressed to the full two-thirds of my colon. In previous diagnosis, it had only let up to about one-third. I can’t explain why this was the case and probably never will.
My determination turned to saving my colon and saving my life. With limited options from the doctors, I have no choice but continue to move forward in seeking answers that I have not yet found, or not have used well in the past. I prayed every day and trusted that God still wanted me here in this world and that I just needed to hold on and each day will get better…just keep holding on and believing.
Turning to the positives, I made it through the most fearful of times. I’m finally home eating a little more each day, pushing as much as I can, while symptoms slowly change. I have a very long road of recovery ahead of me. The only thing that will heal my colon right now is time. I wake each morning with patience that my insides are healing and normal bowel function will return. Each day gets just a little better than the previous, however healing is never linear and there will be ups and downs. My body needs a great deal of recovery as well. I’ve lost over 25lbs along with most muscle. I spend each day on a couch with little movement to control the pain and the urgencies. I’m not strong enough to walk up and down stairs and in need of someone to be with me full-time to cook and help me do daily tasks.
The next step of my recovery is to travel to Nashville, TN where I will be living with a very special caretaker who specializes in IBD recovery. I’ll be able to stay there at least a month where I can be cared for and nourished back to health. This is the only place in the world where I know I will get the special care to recover fully.
I believe it’s times like these when angels appear in your life. Two very dear, and now extremely close friends, Brittany Parker and Peter Logue, have offered to create this GoFund page together on my behalf. I can’t possibly begin to express how grateful I am for them during this time. I never in my life thought I would have to ask for personal assistance. As you may know, I am a fundraiser for other organizations to help people in need -- so the thought of asking on behalf of myself has a feeling of awkward discomfort. However, when I started to address the thousands of dollars that were required to be used just over the last month, I realized I am in serious trouble will no resources to pull from. I have to be honest with myself that I’m in a serious state of not knowing how I will be able to get through these next weeks.
As this flare began I had to take an FMLA (Family Medical Leave of Absence). This is 100% unpaid. I am also responsible for paying for my insurance payments during this time. My FMLA is limited to 12 weeks and I’m hoping to be able to have enough strength to be able to return, however I’m already half way through that time frame with a long road ahead of me.
After maxing out credit cards, I’ve been completely leaning on my parents for financial support to pay rent, utilities, food, hundreds of dollars in necessary supplements, essential bodywork sessions, doctors visits which are not covered by insurance, and pet care for my little Freja. They are doing the best they can with their resources however they should not have to deal with this detrimental burden I know they cannot comfortably take on.
In mentioning angels, I must mention my incredibly strong mother in this journey. I currently live on Mount Desert Island in Maine. My mother has been living at my home on the island for a month where she would drive (3 hours round trip daily) to Eastern Maine Medical Center in Bangor. Each day she would cook and bring me food to try to get me to eat something that would nourish and help reduce symptoms. At 63 years old, I never expected my mother to have to care for me in the way she has been. We only imagine us being able to take care of our parents as THEY age. I would give anything to repay her for what she has been doing for me. I don’t know what I would have done without her in my life.
In finishing this letter, it still feels unreal. We never expect our lives to lead us on paths with so much incredible hardship. Yet, here I am. I’m beyond humbled and appreciative of any support that you would like to give during this time. Truly from the deepest place of my heart, thank you.
Thank you for believing in my journey. I will never give up.
-Marisa
As a close friend, I have had the pleasure of getting to know Marisa over the past year. I run a theatre arts organization on Mount Desert Island in Maine, to which she has so generously given so much of her time, expertise, and boundless energy. Now, it's time to give back to her.
Over the past two months, Marisa has been battling for her health and for her life. Diagnosed with Ulcerative Colitis back in 2003, she has been enduring the worst flare-up of the disease since her diagnosis. Two-thirds of her colon have been inflamed and she has been unable to properly ingest and disgest food since mid August. As a result, she is suffering the effects of starvation -- weak from lack of nutrients and severly underweight.
After 22 days in the hospital and full-time at-home care, Marisa is finally on the long road to recovery. She is able to retain more food and is slowly gaining strength, but the healing process will be long and expensive. Marisa is in the middle of a 12-week unpaid medical leave from her job. Between the medical bills not covered by insurance, necessary supplements, essential bodywork sessions, and general living expenses, she is deeply in debt. Every little bit of support will help her as she heals.
I have been blown away by the strength Marisa has summoned to fight this disease. The financial part of this battle, however, is one that she can not presently win alone. Please read the personal letter from Marisa below for more about her story, and thank you so much for your help.
-Brittany Parker, co-producer of the Barn Arts Collective
From Marisa:
On August 31st, I went into the hospital. I did not know I would be spending 22 days there. Each day that I did not improve I feared what my future would be and I feared for my life.
Most people know that I was diagnosed with Ulcerative Colitis back in 2003. I made my illness public in order to share my journey and inspire others to seek further guidance in their own illnesses. I truly believe there is always hope past what western medicine has to offer. We don’t need to be much reminded of that these days and that movement becomes stronger and stronger. All of my recovery story was true and I’m forever grateful for what I accomplished in the last 12 years and the life I’ve been able to live medication-free for so long. I was able to recover from my colitis through natural remedies and making drastic changes to my life in the sense of mind, body and spirit. Of course recovery is only what you make of it. It’s consistent commitment to yourself. If you start to loose that commitment, you can re-create your illness.
I truly believe that people should never give up in seeking true health and happiness. Fear of loosing people’s hope makes writing this all the more difficult. I guess I’ve allowed a great deal of fear to overcome me lately, as I feared sharing my most recent struggles would put doubt that my past recovery was successful. This fear also made me keep myself closed up to those that I should have reached out to for love, guidance and support during this difficult time. Rather then reach out and let people know what the real truth is, I feel as though I’m hiding and retreating inward. Well, I don’t want to do that any longer, it’s time to let go of fear for we cannot move forward with it. Whatever the outcome of people’s thoughts may be, I need to finally feel as though I can be open and truthful about what is happening in my life. I’m putting myself out there in a way I have not ever done before and I ask, please do not give up hope for illness recovery, and please do not give up hope for me.
My current flare was a result of my own actions and lack of attention. Starting in late July, I began having some symptoms, which I knew needed to be addressed urgently. Unfortunately, life happened and led me to not be able to grasp hold of the symptoms and give it the proper attention in time. I can talk about the numerous things that were happening in my life at the time, but I think better not focus on the things I cannot change, and only focus on the things that move me forward from here. The real trouble started when symptoms manifested to the point where eating any food at all was nearly impossible. Each person diagnosed with IBD will have symptoms that manifest in different ways, for some reason, my manifestation prevents me from ingesting any food. Whether it’s emotional, physical or both, that then becomes the scariest part of my illness because I’m dealing with the issue of starvation as I watch and feel my body deteriorate each day. That is the point where I need extreme medical attention to keep me alive. At this point, in addition to my colitis symptoms, I began to starve to death.
The decision to go into the hospital was necessary but also caused major setbacks. Without going into details of the current medical system, I was not able to get the treatment that I believe would have sped up the inflammatory recovery process. My disease progressed to the full two-thirds of my colon. In previous diagnosis, it had only let up to about one-third. I can’t explain why this was the case and probably never will.
My determination turned to saving my colon and saving my life. With limited options from the doctors, I have no choice but continue to move forward in seeking answers that I have not yet found, or not have used well in the past. I prayed every day and trusted that God still wanted me here in this world and that I just needed to hold on and each day will get better…just keep holding on and believing.
Turning to the positives, I made it through the most fearful of times. I’m finally home eating a little more each day, pushing as much as I can, while symptoms slowly change. I have a very long road of recovery ahead of me. The only thing that will heal my colon right now is time. I wake each morning with patience that my insides are healing and normal bowel function will return. Each day gets just a little better than the previous, however healing is never linear and there will be ups and downs. My body needs a great deal of recovery as well. I’ve lost over 25lbs along with most muscle. I spend each day on a couch with little movement to control the pain and the urgencies. I’m not strong enough to walk up and down stairs and in need of someone to be with me full-time to cook and help me do daily tasks.
The next step of my recovery is to travel to Nashville, TN where I will be living with a very special caretaker who specializes in IBD recovery. I’ll be able to stay there at least a month where I can be cared for and nourished back to health. This is the only place in the world where I know I will get the special care to recover fully.
I believe it’s times like these when angels appear in your life. Two very dear, and now extremely close friends, Brittany Parker and Peter Logue, have offered to create this GoFund page together on my behalf. I can’t possibly begin to express how grateful I am for them during this time. I never in my life thought I would have to ask for personal assistance. As you may know, I am a fundraiser for other organizations to help people in need -- so the thought of asking on behalf of myself has a feeling of awkward discomfort. However, when I started to address the thousands of dollars that were required to be used just over the last month, I realized I am in serious trouble will no resources to pull from. I have to be honest with myself that I’m in a serious state of not knowing how I will be able to get through these next weeks.
As this flare began I had to take an FMLA (Family Medical Leave of Absence). This is 100% unpaid. I am also responsible for paying for my insurance payments during this time. My FMLA is limited to 12 weeks and I’m hoping to be able to have enough strength to be able to return, however I’m already half way through that time frame with a long road ahead of me.
After maxing out credit cards, I’ve been completely leaning on my parents for financial support to pay rent, utilities, food, hundreds of dollars in necessary supplements, essential bodywork sessions, doctors visits which are not covered by insurance, and pet care for my little Freja. They are doing the best they can with their resources however they should not have to deal with this detrimental burden I know they cannot comfortably take on.
In mentioning angels, I must mention my incredibly strong mother in this journey. I currently live on Mount Desert Island in Maine. My mother has been living at my home on the island for a month where she would drive (3 hours round trip daily) to Eastern Maine Medical Center in Bangor. Each day she would cook and bring me food to try to get me to eat something that would nourish and help reduce symptoms. At 63 years old, I never expected my mother to have to care for me in the way she has been. We only imagine us being able to take care of our parents as THEY age. I would give anything to repay her for what she has been doing for me. I don’t know what I would have done without her in my life.
In finishing this letter, it still feels unreal. We never expect our lives to lead us on paths with so much incredible hardship. Yet, here I am. I’m beyond humbled and appreciative of any support that you would like to give during this time. Truly from the deepest place of my heart, thank you.
Thank you for believing in my journey. I will never give up.
-Marisa
Organizer
Marisa Marinelli
Organizer
Goose Cove Rock, ME