Half way to my crucial medical trip
Donación protegida
Overall goal: Raise 3000 dollars by mid April, so I can attend my crucial medical appointment/assessment in May, in MD USA.
The need;
Hi, I'm Rose. I'm a loving wife, mom of two young guys whom I love so much, music artist , writer, producer/advocate and passionate person. I'm hopeful about life and dreams, in spite of fighting a complex, unusual and vicious illness (Ehlers-Danlos syndrome) with limited access to the right treatments and care for it. I have developed a serious and very debilitating complication called CCI and it's getting worse. In 2016 an upright MRI of my c spine showed some problems, and I've been getting worse since. I need to see a specialist doctor in the USA, about this. He is a specializing neurosurgeon and EDS specialist. He took my case, but I still have to pay because it's not in Canada. My appointment is May 3 of this year, in Maryland, USA.
This doctor is the only person able to help me as he can diagnose what type of CCI I have, what must be done to help, and what I'm at risk for (CCI is very hard to properly diagnose.) I should have my whole life ahead of me. I'm 32, with two wonderful kids and a wonderful husband, just released a music album, but my life is slipping away from me. I'm raising funds to cover half the cost of this appointment, in Maryland, USA, on May 3rd. Thanks to the help of a very kind person who prefers to remain anonymous, I have the other half raised already. Now, I am half way there. :)
Attending this appointment has become urgent and crucial. My pain levels have become extremely high, to the point meds barely help. Imagine feeling like a wisdom tooth is impacting in the back of your head :( I am having other really alarming symptoms like being completely off balance. I have briefly blacked out on a few occasions. Sometimes I feel 'out of it' and cannot communicate my thoughts in words very well. Sometimes my vision goes blurry. I get really nauseated. I'm weak and fatigued. Sometimes I tremor and it's hard to use my hands (for fine motor activities especially.) My risk of things like stroke, sleep apnea and serious intercranial hypertension episodes (when the head pressure gets really high) is also present, too. I'm on a steroid spray to try and prevent the IH, but it's no longer working that well. I have occasional better days, where I can dress nice and go out, but it's only occasional, and I'm always sick after pushing myself. I often pay with severe head pain, and what I call the "spigraine" (spinal migraine.) I do use neck collars, but it's no longer enough to help, and I may not be using the right ones individual to me.
Two years ago, I was told by an opthamologist that there was a lot of pressure behind my eyes. This is only getting worse as it seems. The Upright MRI in 2016, which I did in WA, showed I had cerebral tonsillar compression (brain stem compression.) The doctor who read the MRI said it was poor quality pictures, but that he could see the compression and an overly mobile neck, much more than it should be, on the rotation picture. He suspected something called Atlantoaxial instability , but could not confirm it based on those pictures, as they did not do "coronal views." All this only gets worse, and the brainstem risks to herniate. Based on how my pain level's been lately, we believe that it is herniating now. In addition to this, my neck is unstable, and the two problems together are extremely painful.
My appointment was originally in March, but I've postponed it 7 weeks ahead, to have more time to try and fundraise. The costs include the assessment itself, medical imaging, the hotel stay, flights. food, incedentals. I will have to bring one escort to help me, also. Everything has been tentatively set up: My appointment is set, MRI and CT scan appointments are set for the two days before. A week at Holiday Inn has been booked. It can all be cancelled if necessary, but I hope not to cancel it. Thanks to kindness and generosity, I've been able to raise half of the required costs. I'm hoping to raise the other half, 3000 dollars by mid-late April. (*receipts for expenditures on the trip will be posted.)
Our healthcare system is limited in offering the kinds of help I need for complications of my condition, some of which can be serious. So things have been really hard for me, and my family. This has been a painful experience for us, and continues to be. We hope the assessment with Dr Henderson, a renowned specialist, will give a clearer prognosis and important suggestions to my doctors, regarding my care. CCI isn't only very painful, it's dangerous, especially because it can interfere with breathing, circulation (which can affect heart rate too), as well as the stroke risk.
I try hard to rise above and express my passion for life, and I often put on a good front, but the truth is I'm living with severe pain, weakness and unpleasant, sometimes scary symptoms. The truth is that it's very hard for me to live like this, especially without the right information to keep me safer. Dr Henderson is one of the only doctors who can really help me and diagnose exactly what's going on, because no case of CCI is the same. He's not only a neurosurgeon specializing in CCI, but is also an EDS expert in general. He can offer some important information overall. This is also very important.
EDS:
The healthcare system here is currently uneducated and unfamiliar with EDS and most of it's complications, in spite of how serious they can be. EDS is a mostly invisible, but very painful and complex systemic illness (affecting many body systems.) It involves weakened collagen (your bodys' 'glue'.) Presenting features are very soft skin that is sometimes quite stretchy, and hyper mobile and/or loose joints. It affects the joints, bones, tissues, heart and circulation, digestive systems, spine, brain, organs (especially hollow organs) and autonomic nervous systems. The lack of education and resources for EDS has had a brutal impact on many people with EDS, including me. There are only a few doctors out there, who can help. Many EDS patients have had to take extreme measures, like public campaigning/fundraising, to get to these doctors. EDS advocates are working on trying to change all this, but it'll take time.
My husband and I are trying to get into a better financial position, so we can meet more of my medical needs, and for the sake of the boys' futures, but it's taking time. We consider this upcoming appointment, focussing especially on CCI, to be the most important concern right now, and we're reaching out for your help - to help me get there in May. Please consider pledging and /or sharing this around with your friends circles, and suggesting they may consider sharing, also. :)
*I'd like to offer all those who pledge (any amount they can) a download of my recently released music album, as a gift, if they're interested. The album is otherwise only available on Itunes or Bandcamp (my previous writing/advocacy and poetry books, otherwise sold on kindle, are also available to those interested*.
(note; if you aren't able to pledge using the payment methods GFM uses, but you wish to donate another way, please contact my personal email: [email editado])
About me in a few paragraphs:
My name is Natalie Marie Rose Guedes, and I'm called by my second middle name (Rose.) I'm a 32 years old, I love my family so much, I love my friends, and I'm passionate about what I do. Over the years I've done a lot of advocacy and awareness raising work in my own way, especially for autism, health and social related matters. It's felt good and satisfying to hear from people who tell me that my work has been helpful to them. As of late, I've been more involved in my music, which has been my biggest lifelong passion. I'm excited and proud to mention that, after a lot of hard work and dedication, I was able to complete and release my debut music album, Live To Dream. I feel very proud of being able to accomplish this, in spite of my major challenges. This is a huge check off my bucket list, and I'm happy to say it turned out pretty great! It's received some very positive feedback from others who enjoyed it, and it's message, a lot.
However this, and anything else I do, is always a real feat for me. I've been fighting a very intense and trying uphill battle with EDS and it's complications, in the face of limited resources in this country. I am living with serious health concerns, especially the CCI, and other problems too. I'm considered (by the geneticist who diagnosed me) to be 'more severely affected." My EDS has been getting a lot worse for the past few years. It's been a very painful, challenging and sometimes scary experience. Unfortunately I went undiagnosed for a long time, but I'm not the only one. It's happened to many people with EDS.
Over time, I've learned to self manage EDS - including becoming psychologically braver, and better at advocating for myself, in spite of unrelenting challenges and limited access to the right care and therapies for them. I often don't talk about the details of what I'm experiencing anymore, because I find it easier (on everyone) not to - but inside I'm hurting more than I say and present. I'm a strong, determined and (admittedly) stubborn person, trying to do what I can and get what I can out of life, even though I've become painfully limited. It's to the point where I can hugely 'mask' just how physically weakened I really am, and how much pain I'm really in, when I'm out, dressed up, and about trying to get the most fun out of being 'out' that I can. This is because I don't always get to go out, so when I am out, I try to practice a concept I call "stealing joys." But the truth is, when I go home from being able to do that for a little bit of time, I'm mostly in bed, and sometimes totally incapacitated. :( I will soon be using a stronger mobility aid (rather than just a cane) which was donated to me, so I can go out a little more, while conserving energy and not injuring.
I've fought, and am still fighting, to access care that benefits me, so I can get some of my quality of life back. Barriers have made this really hard ie. limits within the system. After a lot of fighting and advocating for myself I've managed to get somewhere and improve things a little, but it's still not enough considering what I am dealing with. All this has been nightmarish and exhausting, but I won't give up. I've survived through many trying times. Luckily I've become more learned about managing and living with this doozy of an illness, but it's a mysterious one and it's never easy. I use a combination of meds and natural methods to manage as much as I can. However, financially attaining what I need most is either almost or definitely 'above my head.' It's a constant battle. I'm hoping this appointment will help provide more specific information - which can in turn help me get some more help within the system. Right now I feel like I'm constantly playing the role of 'my own medical/naturopathic team" just to keep my head above water.
About CCI:
Now, EDS is causing my C-spine (my neck) and craniocervial junction (where the head and neck connect) to become unstable, and this is also compressing my brainstem, especially when I'm upright. It's been very painful, life limiting and imprisoning for me, and is gradually getting worse.
CCI is extremely painful and sometimes, the pain is really unbearable. Unfortunately I've had to use some pain medications, to cope, which aren't too good for my body. At times I have alarming experiences due to CCI; Sometimes I experience heart arrhythmias and breathing problems, when my head pressure is high from too much exerting or improper positioning (easy to do.) Occasionally this happens at night and I wake up gasping for air. This can be really scary. More recently I have been having problems like blurred vision, tremors, vertigo, nausea, severe pressure headaches caused simply by exerting or chewing crunchier/tougher foods, not even being able to turn on my side in bed, or bend forward to pick something up, to go into the fridge, etc..
Because of how difficult the CCI is becoming for me, it was becoming crucial for me to get professional guidance for it - but there are none available where I live. So my concerned doctors supported referral to Dr Henderson and he took my case.
Info notes on CCI:
- CCI is to do with weakening of the necks' ability to hold up the head on it's own (as the head is heavy.) This is because of weakening of the ligaments in the craniocervical junction, all around the head and going into the jaw, as well as compression and possible herniation of the brainstem itself.
- There are many variations of CCI, each persons' case and medical need is individual.
- CCI, and each patients individual case and best treatment options can all be difficult to diagnose, and a doctor who specializes in it is required for this.
- CCI can get worse at different rates, some are gradual, others are rapid, occasionally some stay the same. Mine is seeming to progress. It has been gradual but it seems to have become a little more rapid, recently.
- CCI causes severe pain, weakness, and forces one to be very careful and limited with mobility. It also limits the amount of energy one can use, especially when upright.
- Doing too much (which is, doing almost anything) backfires and causes a "CCI headache' and other symptoms which can sometimes last for days and make a person bed ridden. It is very imprisoning. :(
- Neck collars help; I have to use neck collars, to help, and they partly help me - but not fully, and it's still very painful (this may be to do partly with not having the ideal collar I need for my type of problem, yet.)
- CCI is a very life limiting condition to experience, because of all the problems it can cause
- CCI can also cause problems with the autonomic nervous system (including heart rate and circulation), breathing and eating (including chewing and digesting.) This can be risky.
- People with CCI can become so disabled that they end up needing a lot of help from people around them. Quality of life can become very poor. Some people end up having to be fed through an intranasal tube because of CCI, and some end up needing oxygen, because the brainstem compression deprives them of it.
- When a persons' medical system does not recognize and/or understand the level of seriousness of CCI, such as risk factors and that a person needs certain interventions, this can end up being dangerous. (this is why I need to see an expert doctor who can put down, in writing, what my medical needs are.)
- CCI also increases the risk of stroke, and can cause these awful "mini stroke like" episodes. (I used to get these too, though they have seemed to settle for most of the time, with a medication I now take.)
- It's hard to find and expert in and get help CCI, yet it's one of the most painful and risky complications of EDS.
- Help for CCI may include various therapies, surgery (decompression fusion), certain medical devices and certain medications, and this depends on each individual case, because everyone is different.
I'm trying to take things day by day, and continue to promote and share my music and artivism work, but worsening CCI is my biggest threat, hanging over me. I worry that it could gradually take away most or all of my functioning, be too painful to bare, and even threaten my life. I can't predict how soon or how quickly this could happen, because this can vary person to person. All I know it for me it's been gradually getting worse. I need to know more information about the nature of my case.
I'd like to thank all those who donated to my last fundraiser, for helping to bring me to the halfway mark. I'm extremely grateful to all of you, and I would like to do a special shout out to the anonymous donor who helped to bring me up to that halfway mark significantly. I wasn't sure what I was going to do before then, and I considered cancling this crucial appointment. I really shouldn't cancel this appointment.
I find fundraising difficult because I don't like to seem like I'm "begging", and I regret being in this position. I'd like to emphasize that I work as much as I can to produce quality content, and offer appreciation gifts to all donors in return for their generous decision to pledge a little to this cause. I try to give back in any way I can. My husband and I are working on improving our finances in order to meet my future complex needs, and also, information from Dr Henderson should help to advocate.
Why did I switch fundraisers?
I made the decision to change over to Go Fund Me to raise the rest of what I need, because the last fundraiser would not allow me to lower my "goal" amount to only what I need for the trip specifically. Originally, I had a higher goal limit in hopes to raise funds for a few outstanding needs I have. However, I have faith that those needs, which are not quite as important as the CCI issue is right now, can be met over time. My husband and I hope to (and are working on) improving our financial position, for the sake of our futures, but it will take some time. Luckily, the Doctor I hope to see for CCI is also an expert on EDS, so he can help provide me more insight. I also changed back to Go Fund Me because it is trusted and true, and known to receive more visibility.
Thank you so much for reviewing my campaign. Please consider sharing this around, so I can hopefully make my goal, and get to see Dr Henderson in MD, in May. Below I added a few extra paragraphs about EDS. Check them out if you like, and consider signing the petition. Thanks!
A few paragraphs to sum up EDS (and link to EDS support petition .)
EDS is to do with weakened collagen, your body's glue, so as a result the sufferers connective tissues are weakened. EDS is a connective tissue disorder. (info brochure here ) It causes many complications, some which can be managed with medications and lifestyle, and some which can become quite serious and need more intensive medical intervention. EDS causes problems with joints, bones, and tissues, the spinal chord and nervous systems (especially dysautonomia ), neurological function, heart and circulation, and digestive systems. Many people with EDS suffer with various problems with these systems. I have dysautonomia, which is very common with EDS, and it is partly controlled with meds.
Many people with EDS have to receive regular IV fluid infusions (I go once a week to the hospital) and some end up on feeding tubes. It's amazing what the weakening of collagen can do to the body! To talk about all of it in detail is easily overwhelming. So I'll try to refrain from too much of this. If you're like to learn more about EDS, I encourage you to google it, there's currently lots of info out there.
Since there's a lack of access to EDS-literate medical care where I have, many of us (especially when financially limited) have had to deal with and manage many of the issues caused our disorder, one our own. Patients shouldn't have to do this to the extent that people with EDS do, ever. Over time we become wiser, braver, better at managing, and more self assured in terms of advocating for ourselves - we have no choice. I can say that I'm a survivor and my spirit has been, and still is being, tested by my experience with EDS - especially as it's worsened in the past few years. This has changed me - though it's been a painful experience in more ways than one.
Many people with EDS aren't diagnosed properly for years, if ever. This is a huge problem. It is hard to get a diagnosis - doctors seem very averted to diagnosing it. It is almost as if they're 'phobic' of it (which is why I called my petition 'Stop The Zebraphobia.') We need this to change. Like I shared, I wasn't diagnosed properly with EDS, for many years, even though I felt more unwell and tired than other people. In school I was even called "lazy" and having an 'attitude" because I didn't want to participate in sports (due to how easily we get injured.) I learned to push myself hard at things, over the years, but this eventually did damage. I wish I'd known about having EDS, earlier. I'm not the only one in this position. There are many people who could echo this. EDS is poorly understood and under-supported by most medical systems. Many people with EDS are diagnosed too late, and suffer lack of access to proper EDS literate healthcare.
Currently people with EDS and it's similar or related co-morbid disorders are having trouble accessing the help they desperately need, including me. It's a serious issue in most parts of the world right now. There are many people with EDS, dysautonomia, CCI and related conditions in dire need of the right help, which they cannot seem to attain. Instead, many are enduring unfair and unethical treatment by doctors and medical personnel. I've experienced my fair share of pain and trauma in this regard. It's a heavy and painful issue to discuss here. For more information on this and if you'd like to learn and support, please visit my community petition, here and sign/comment.
The need;
Hi, I'm Rose. I'm a loving wife, mom of two young guys whom I love so much, music artist , writer, producer/advocate and passionate person. I'm hopeful about life and dreams, in spite of fighting a complex, unusual and vicious illness (Ehlers-Danlos syndrome) with limited access to the right treatments and care for it. I have developed a serious and very debilitating complication called CCI and it's getting worse. In 2016 an upright MRI of my c spine showed some problems, and I've been getting worse since. I need to see a specialist doctor in the USA, about this. He is a specializing neurosurgeon and EDS specialist. He took my case, but I still have to pay because it's not in Canada. My appointment is May 3 of this year, in Maryland, USA.
This doctor is the only person able to help me as he can diagnose what type of CCI I have, what must be done to help, and what I'm at risk for (CCI is very hard to properly diagnose.) I should have my whole life ahead of me. I'm 32, with two wonderful kids and a wonderful husband, just released a music album, but my life is slipping away from me. I'm raising funds to cover half the cost of this appointment, in Maryland, USA, on May 3rd. Thanks to the help of a very kind person who prefers to remain anonymous, I have the other half raised already. Now, I am half way there. :)
Attending this appointment has become urgent and crucial. My pain levels have become extremely high, to the point meds barely help. Imagine feeling like a wisdom tooth is impacting in the back of your head :( I am having other really alarming symptoms like being completely off balance. I have briefly blacked out on a few occasions. Sometimes I feel 'out of it' and cannot communicate my thoughts in words very well. Sometimes my vision goes blurry. I get really nauseated. I'm weak and fatigued. Sometimes I tremor and it's hard to use my hands (for fine motor activities especially.) My risk of things like stroke, sleep apnea and serious intercranial hypertension episodes (when the head pressure gets really high) is also present, too. I'm on a steroid spray to try and prevent the IH, but it's no longer working that well. I have occasional better days, where I can dress nice and go out, but it's only occasional, and I'm always sick after pushing myself. I often pay with severe head pain, and what I call the "spigraine" (spinal migraine.) I do use neck collars, but it's no longer enough to help, and I may not be using the right ones individual to me.
Two years ago, I was told by an opthamologist that there was a lot of pressure behind my eyes. This is only getting worse as it seems. The Upright MRI in 2016, which I did in WA, showed I had cerebral tonsillar compression (brain stem compression.) The doctor who read the MRI said it was poor quality pictures, but that he could see the compression and an overly mobile neck, much more than it should be, on the rotation picture. He suspected something called Atlantoaxial instability , but could not confirm it based on those pictures, as they did not do "coronal views." All this only gets worse, and the brainstem risks to herniate. Based on how my pain level's been lately, we believe that it is herniating now. In addition to this, my neck is unstable, and the two problems together are extremely painful.
My appointment was originally in March, but I've postponed it 7 weeks ahead, to have more time to try and fundraise. The costs include the assessment itself, medical imaging, the hotel stay, flights. food, incedentals. I will have to bring one escort to help me, also. Everything has been tentatively set up: My appointment is set, MRI and CT scan appointments are set for the two days before. A week at Holiday Inn has been booked. It can all be cancelled if necessary, but I hope not to cancel it. Thanks to kindness and generosity, I've been able to raise half of the required costs. I'm hoping to raise the other half, 3000 dollars by mid-late April. (*receipts for expenditures on the trip will be posted.)
Our healthcare system is limited in offering the kinds of help I need for complications of my condition, some of which can be serious. So things have been really hard for me, and my family. This has been a painful experience for us, and continues to be. We hope the assessment with Dr Henderson, a renowned specialist, will give a clearer prognosis and important suggestions to my doctors, regarding my care. CCI isn't only very painful, it's dangerous, especially because it can interfere with breathing, circulation (which can affect heart rate too), as well as the stroke risk.
I try hard to rise above and express my passion for life, and I often put on a good front, but the truth is I'm living with severe pain, weakness and unpleasant, sometimes scary symptoms. The truth is that it's very hard for me to live like this, especially without the right information to keep me safer. Dr Henderson is one of the only doctors who can really help me and diagnose exactly what's going on, because no case of CCI is the same. He's not only a neurosurgeon specializing in CCI, but is also an EDS expert in general. He can offer some important information overall. This is also very important.
EDS:
The healthcare system here is currently uneducated and unfamiliar with EDS and most of it's complications, in spite of how serious they can be. EDS is a mostly invisible, but very painful and complex systemic illness (affecting many body systems.) It involves weakened collagen (your bodys' 'glue'.) Presenting features are very soft skin that is sometimes quite stretchy, and hyper mobile and/or loose joints. It affects the joints, bones, tissues, heart and circulation, digestive systems, spine, brain, organs (especially hollow organs) and autonomic nervous systems. The lack of education and resources for EDS has had a brutal impact on many people with EDS, including me. There are only a few doctors out there, who can help. Many EDS patients have had to take extreme measures, like public campaigning/fundraising, to get to these doctors. EDS advocates are working on trying to change all this, but it'll take time.
My husband and I are trying to get into a better financial position, so we can meet more of my medical needs, and for the sake of the boys' futures, but it's taking time. We consider this upcoming appointment, focussing especially on CCI, to be the most important concern right now, and we're reaching out for your help - to help me get there in May. Please consider pledging and /or sharing this around with your friends circles, and suggesting they may consider sharing, also. :)
*I'd like to offer all those who pledge (any amount they can) a download of my recently released music album, as a gift, if they're interested. The album is otherwise only available on Itunes or Bandcamp (my previous writing/advocacy and poetry books, otherwise sold on kindle, are also available to those interested*.
(note; if you aren't able to pledge using the payment methods GFM uses, but you wish to donate another way, please contact my personal email: [email editado])
About me in a few paragraphs:
My name is Natalie Marie Rose Guedes, and I'm called by my second middle name (Rose.) I'm a 32 years old, I love my family so much, I love my friends, and I'm passionate about what I do. Over the years I've done a lot of advocacy and awareness raising work in my own way, especially for autism, health and social related matters. It's felt good and satisfying to hear from people who tell me that my work has been helpful to them. As of late, I've been more involved in my music, which has been my biggest lifelong passion. I'm excited and proud to mention that, after a lot of hard work and dedication, I was able to complete and release my debut music album, Live To Dream. I feel very proud of being able to accomplish this, in spite of my major challenges. This is a huge check off my bucket list, and I'm happy to say it turned out pretty great! It's received some very positive feedback from others who enjoyed it, and it's message, a lot.
However this, and anything else I do, is always a real feat for me. I've been fighting a very intense and trying uphill battle with EDS and it's complications, in the face of limited resources in this country. I am living with serious health concerns, especially the CCI, and other problems too. I'm considered (by the geneticist who diagnosed me) to be 'more severely affected." My EDS has been getting a lot worse for the past few years. It's been a very painful, challenging and sometimes scary experience. Unfortunately I went undiagnosed for a long time, but I'm not the only one. It's happened to many people with EDS.
Over time, I've learned to self manage EDS - including becoming psychologically braver, and better at advocating for myself, in spite of unrelenting challenges and limited access to the right care and therapies for them. I often don't talk about the details of what I'm experiencing anymore, because I find it easier (on everyone) not to - but inside I'm hurting more than I say and present. I'm a strong, determined and (admittedly) stubborn person, trying to do what I can and get what I can out of life, even though I've become painfully limited. It's to the point where I can hugely 'mask' just how physically weakened I really am, and how much pain I'm really in, when I'm out, dressed up, and about trying to get the most fun out of being 'out' that I can. This is because I don't always get to go out, so when I am out, I try to practice a concept I call "stealing joys." But the truth is, when I go home from being able to do that for a little bit of time, I'm mostly in bed, and sometimes totally incapacitated. :( I will soon be using a stronger mobility aid (rather than just a cane) which was donated to me, so I can go out a little more, while conserving energy and not injuring.
I've fought, and am still fighting, to access care that benefits me, so I can get some of my quality of life back. Barriers have made this really hard ie. limits within the system. After a lot of fighting and advocating for myself I've managed to get somewhere and improve things a little, but it's still not enough considering what I am dealing with. All this has been nightmarish and exhausting, but I won't give up. I've survived through many trying times. Luckily I've become more learned about managing and living with this doozy of an illness, but it's a mysterious one and it's never easy. I use a combination of meds and natural methods to manage as much as I can. However, financially attaining what I need most is either almost or definitely 'above my head.' It's a constant battle. I'm hoping this appointment will help provide more specific information - which can in turn help me get some more help within the system. Right now I feel like I'm constantly playing the role of 'my own medical/naturopathic team" just to keep my head above water.
About CCI:
Now, EDS is causing my C-spine (my neck) and craniocervial junction (where the head and neck connect) to become unstable, and this is also compressing my brainstem, especially when I'm upright. It's been very painful, life limiting and imprisoning for me, and is gradually getting worse.
CCI is extremely painful and sometimes, the pain is really unbearable. Unfortunately I've had to use some pain medications, to cope, which aren't too good for my body. At times I have alarming experiences due to CCI; Sometimes I experience heart arrhythmias and breathing problems, when my head pressure is high from too much exerting or improper positioning (easy to do.) Occasionally this happens at night and I wake up gasping for air. This can be really scary. More recently I have been having problems like blurred vision, tremors, vertigo, nausea, severe pressure headaches caused simply by exerting or chewing crunchier/tougher foods, not even being able to turn on my side in bed, or bend forward to pick something up, to go into the fridge, etc..
Because of how difficult the CCI is becoming for me, it was becoming crucial for me to get professional guidance for it - but there are none available where I live. So my concerned doctors supported referral to Dr Henderson and he took my case.
Info notes on CCI:
- CCI is to do with weakening of the necks' ability to hold up the head on it's own (as the head is heavy.) This is because of weakening of the ligaments in the craniocervical junction, all around the head and going into the jaw, as well as compression and possible herniation of the brainstem itself.
- There are many variations of CCI, each persons' case and medical need is individual.
- CCI, and each patients individual case and best treatment options can all be difficult to diagnose, and a doctor who specializes in it is required for this.
- CCI can get worse at different rates, some are gradual, others are rapid, occasionally some stay the same. Mine is seeming to progress. It has been gradual but it seems to have become a little more rapid, recently.
- CCI causes severe pain, weakness, and forces one to be very careful and limited with mobility. It also limits the amount of energy one can use, especially when upright.
- Doing too much (which is, doing almost anything) backfires and causes a "CCI headache' and other symptoms which can sometimes last for days and make a person bed ridden. It is very imprisoning. :(
- Neck collars help; I have to use neck collars, to help, and they partly help me - but not fully, and it's still very painful (this may be to do partly with not having the ideal collar I need for my type of problem, yet.)
- CCI is a very life limiting condition to experience, because of all the problems it can cause
- CCI can also cause problems with the autonomic nervous system (including heart rate and circulation), breathing and eating (including chewing and digesting.) This can be risky.
- People with CCI can become so disabled that they end up needing a lot of help from people around them. Quality of life can become very poor. Some people end up having to be fed through an intranasal tube because of CCI, and some end up needing oxygen, because the brainstem compression deprives them of it.
- When a persons' medical system does not recognize and/or understand the level of seriousness of CCI, such as risk factors and that a person needs certain interventions, this can end up being dangerous. (this is why I need to see an expert doctor who can put down, in writing, what my medical needs are.)
- CCI also increases the risk of stroke, and can cause these awful "mini stroke like" episodes. (I used to get these too, though they have seemed to settle for most of the time, with a medication I now take.)
- It's hard to find and expert in and get help CCI, yet it's one of the most painful and risky complications of EDS.
- Help for CCI may include various therapies, surgery (decompression fusion), certain medical devices and certain medications, and this depends on each individual case, because everyone is different.
I'm trying to take things day by day, and continue to promote and share my music and artivism work, but worsening CCI is my biggest threat, hanging over me. I worry that it could gradually take away most or all of my functioning, be too painful to bare, and even threaten my life. I can't predict how soon or how quickly this could happen, because this can vary person to person. All I know it for me it's been gradually getting worse. I need to know more information about the nature of my case.
I'd like to thank all those who donated to my last fundraiser, for helping to bring me to the halfway mark. I'm extremely grateful to all of you, and I would like to do a special shout out to the anonymous donor who helped to bring me up to that halfway mark significantly. I wasn't sure what I was going to do before then, and I considered cancling this crucial appointment. I really shouldn't cancel this appointment.
I find fundraising difficult because I don't like to seem like I'm "begging", and I regret being in this position. I'd like to emphasize that I work as much as I can to produce quality content, and offer appreciation gifts to all donors in return for their generous decision to pledge a little to this cause. I try to give back in any way I can. My husband and I are working on improving our finances in order to meet my future complex needs, and also, information from Dr Henderson should help to advocate.
Why did I switch fundraisers?
I made the decision to change over to Go Fund Me to raise the rest of what I need, because the last fundraiser would not allow me to lower my "goal" amount to only what I need for the trip specifically. Originally, I had a higher goal limit in hopes to raise funds for a few outstanding needs I have. However, I have faith that those needs, which are not quite as important as the CCI issue is right now, can be met over time. My husband and I hope to (and are working on) improving our financial position, for the sake of our futures, but it will take some time. Luckily, the Doctor I hope to see for CCI is also an expert on EDS, so he can help provide me more insight. I also changed back to Go Fund Me because it is trusted and true, and known to receive more visibility.
Thank you so much for reviewing my campaign. Please consider sharing this around, so I can hopefully make my goal, and get to see Dr Henderson in MD, in May. Below I added a few extra paragraphs about EDS. Check them out if you like, and consider signing the petition. Thanks!
A few paragraphs to sum up EDS (and link to EDS support petition .)
EDS is to do with weakened collagen, your body's glue, so as a result the sufferers connective tissues are weakened. EDS is a connective tissue disorder. (info brochure here ) It causes many complications, some which can be managed with medications and lifestyle, and some which can become quite serious and need more intensive medical intervention. EDS causes problems with joints, bones, and tissues, the spinal chord and nervous systems (especially dysautonomia ), neurological function, heart and circulation, and digestive systems. Many people with EDS suffer with various problems with these systems. I have dysautonomia, which is very common with EDS, and it is partly controlled with meds.
Many people with EDS have to receive regular IV fluid infusions (I go once a week to the hospital) and some end up on feeding tubes. It's amazing what the weakening of collagen can do to the body! To talk about all of it in detail is easily overwhelming. So I'll try to refrain from too much of this. If you're like to learn more about EDS, I encourage you to google it, there's currently lots of info out there.
Since there's a lack of access to EDS-literate medical care where I have, many of us (especially when financially limited) have had to deal with and manage many of the issues caused our disorder, one our own. Patients shouldn't have to do this to the extent that people with EDS do, ever. Over time we become wiser, braver, better at managing, and more self assured in terms of advocating for ourselves - we have no choice. I can say that I'm a survivor and my spirit has been, and still is being, tested by my experience with EDS - especially as it's worsened in the past few years. This has changed me - though it's been a painful experience in more ways than one.
Many people with EDS aren't diagnosed properly for years, if ever. This is a huge problem. It is hard to get a diagnosis - doctors seem very averted to diagnosing it. It is almost as if they're 'phobic' of it (which is why I called my petition 'Stop The Zebraphobia.') We need this to change. Like I shared, I wasn't diagnosed properly with EDS, for many years, even though I felt more unwell and tired than other people. In school I was even called "lazy" and having an 'attitude" because I didn't want to participate in sports (due to how easily we get injured.) I learned to push myself hard at things, over the years, but this eventually did damage. I wish I'd known about having EDS, earlier. I'm not the only one in this position. There are many people who could echo this. EDS is poorly understood and under-supported by most medical systems. Many people with EDS are diagnosed too late, and suffer lack of access to proper EDS literate healthcare.
Currently people with EDS and it's similar or related co-morbid disorders are having trouble accessing the help they desperately need, including me. It's a serious issue in most parts of the world right now. There are many people with EDS, dysautonomia, CCI and related conditions in dire need of the right help, which they cannot seem to attain. Instead, many are enduring unfair and unethical treatment by doctors and medical personnel. I've experienced my fair share of pain and trauma in this regard. It's a heavy and painful issue to discuss here. For more information on this and if you'd like to learn and support, please visit my community petition, here and sign/comment.
Organizador
Scarlit-Rose Ashcraft
Organizador
Victoria, BC
