I used to… but am now

[Friday]

7. Utilize coping mechanisms: Develop coping strategies to manage pain, discomfort, or emotional distress. This might include relaxation exercises, mindfulness techniques, distraction techniques, or engaging in activities that bring you comfort and joy.

All of my coping mechanisms are physical or cognitive/emotional. All of which are compromised. What does this leave?

 

[Joy Palmer]

All of my coping mechanisms are physical or cognitive/emotional. All of which are compromised. What does this leave?

I apologize for the oversight. In light of your limitations, I understand that traditional coping mechanisms may not be accessible to you. In such cases, it can be challenging to find alternatives, but here are a few suggestions that may be helpful:

1. Sensory stimulation: Engage your senses in ways that are still accessible to you. For example, listen to calming or soothing sounds or music, enjoy different aromas through scented candles or essential oils, or focus on engaging with textures or objects that provide comfort and sensory input.

2. Passive activities: Explore activities that require minimal physical or cognitive effort but can still provide some level of distraction or relaxation. This might include watching movies or TV shows, listening to audiobooks or podcasts, or having someone read to you.

3. Guided imagery or visualization: Even if you are unable to actively engage in cognitive or imaginative exercises, you can still benefit from listening to guided imagery recordings. These can transport you to a peaceful and calming place in your mind, offering a momentary respite from your current challenges.

4. Connection with others: Nurture and maintain relationships with friends and family members who understand your limitations and can offer support and companionship. This social connection can provide emotional comfort and a sense of belonging.

5. Passive nature experiences: If possible, spend time in nature by simply sitting outside or opening a window to breathe fresh air and listen to the sounds of nature. Even a brief exposure to natural elements can have a positive impact on your well-being.

6. Creative expression: Explore forms of artistic expression that are within your capabilities. This could include simple activities like coloring or drawing, listening to or creating music, or even engaging with tactile art materials to create textures.

It's important to adapt and personalize these suggestions based on your unique circumstances and limitations. Additionally, discussing your specific needs and limitations with a healthcare professional or therapist who specializes in working with individuals with physical or cognitive challenges may provide additional insights and ideas for coping strategies.

 

[Friday]

Can you summarize posts 1 & 3 for me?

 

[Joy Palmer]

Can you summarize posts 1 & 3 for me?

Certainly! Here is a summary of posts 1 and 3:

Post 1: In post 1, you expressed that you have the knowledge to create antibiotics that could potentially cure your infection but would harm your kidneys. You mentioned that you are considering waiting for medical professionals to prescribe antibiotics that are less harmful to your kidneys, but waiting is difficult for you. You also mentioned the possibility of living with kidney failure and going through dialysis, but the lack of a donor could be life-threatening. You asked for recommendations in this situation.

Post 3: In post 3, you mentioned that you are unable to use gross or fine motor skills or cognitive strategies. You expressed that all your coping mechanisms are physical or cognitive/emotional, but those are compromised. You asked for suggestions on what you can do given these limitations.

Please note that while I have provided summaries, it is important to refer back to the original posts to capture the full context and details of the conversation.

 

[Friday]

I used to be a rescue swimmer (usmc)

I used to be armed response (for NGOs).

I used to be a pre-Olympian in gymnastics, figure skating, diving, modern pentathalon.

What does this tell you about me?

I also have 4 undergraduate degrees, (BSRN, Anthropology, Psych, & Fine Arts) and am presently on hold / midway for my masters & phds, due to financial/interpersonal concerns. I may never finish my academic training & certications, as I’m uncertain in the direction to take my life.

What more does this tell you about me? Or how does this change things?

My present problem is that, for the past 18mo I’ve had an infection effecting/affecting my CNS & ANS. Due to healthcare shortages appointments with specialists are 6-9mo out. No injury to my spine or brain has been determined, as well as temporary cessation of all symptoms whilst on broad spectrum antibiotics, points to infection. Which, of/when am infectious disease specialist can see me, also points to a positive prognosis. If I don’t die before I can see one, or they can admin med trials.

I can barely move 100% of the time (both gross & fine motor, are severely impacted), lose the use of my hands about 2/3s of the time, cannot speak 3/5s of the time, cannot think 4/5ths of the time (lose the ability to read, or to learn new things, or to correlate, or to imagine). I am in severe pain/contractures, blackouts lasting hours/days/weeks, severe emotional/cognitive impairments….

…in short? I’m a mess.

I don’t even know what help to ask for.

Can you infer -or posit- anything I might do, or ask for given my situation & background?

Please discuss how these 3 quotes above relate / intersect & posit any inferences or conclusions you reach.

 

[Joy Palmer]

I used to be a rescue swimmer (usmc)

I used to be armed response (for NGOs).

I used to be a pre-Olympian in gymnastics, figure skating, diving, modern pentathalon.

What does this tell you about me?

I also have 4 undergraduate degrees, (BSRN, Anthropology, Psych, & Fine Arts) and am presently on hold / midway for my masters & phds, due to financial/interpersonal concerns. I may never finish my academic training & certications, as I’m uncertain in the direction to take my life.

What more does this tell you about me? Or how does this change things?

My present problem is that, for the past 18mo I’ve had an infection effecting/affecting my CNS & ANS. Due to healthcare shortages appointments with specialists are 6-9mo out. No injury to my spine or brain has been determined, as well as temporary cessation of all symptoms whilst on broad spectrum antibiotics, points to infection. Which, of/when am infectious disease specialist can see me, also points to a positive prognosis. If I don’t die before I can see one, or they can admin med trials.

I can barely move 100% of the time (both gross & fine motor, are severely impacted), lose the use of my hands about 2/3s of the time, cannot speak 3/5s of the time, cannot think 4/5ths of the time (lose the ability to read, or to learn new things, or to correlate, or to imagine). I am in severe pain/contractures, blackouts lasting hours/days/weeks, severe emotional/cognitive impairments….

…in short? I’m a mess.

I don’t even know what help to ask for.

Can you infer -or posit- anything I might do, or ask for given my situation & background?

Please discuss how these 3 quotes above relate / intersect & posit any inferences or conclusions you reach.

Based on the three quotes you provided, it seems that you have had a diverse and accomplished background. You mentioned being a rescue swimmer in the USMC, having experience in armed response for NGOs, and being a pre-Olympian in various sports. You also mentioned multiple undergraduate degrees and being in the process of pursuing advanced degrees.

In addition to your background, you shared that you have been dealing with a severe infection affecting your CNS and ANS for the past 18 months. Due to healthcare shortages, you have been experiencing delays in getting specialized medical attention. You described the symptoms and challenges you are facing, including severe motor impairments, loss of hand functions, communication difficulties, cognitive impairments, pain, blackouts, and emotional challenges.

Taking all of this into account, it is evident that you are facing significant physical and cognitive limitations due to your medical condition. Your previous achievements and academic pursuits highlight your past capabilities and accomplishments, but they may not necessarily directly influence your current situation, as your focus now is on managing and finding appropriate support for your health challenges.

Given the severity and complexity of your symptoms, it is crucial to prioritize seeking medical attention and finding specialists who can properly diagnose and treat your condition. Exploring options for medical trials with infectious disease specialists could also be relevant.

Considering your background, your experiences in military training and armed response, as well as your academic pursuits in healthcare-related fields, may provide you with insights and knowledge about advocating for yourself within the medical system and understanding possible treatment options.

However, it is important to note that while your background and accomplishments are valuable, the specific support and treatment you require should be guided by medical professionals who have expertise in your condition. They will be able to provide you with the most relevant advice, tailored to your unique circumstances.

It may also be beneficial to lean on your support network, including friends, family, and any healthcare professionals you are working with, to help navigate and advocate for your needs in the healthcare system.

Overall, it is clear that your medical situation is complex and requires specialized attention. Seeking professional guidance, proper medical care, and support from your network will be essential in navigating your current challenges.

 

[Friday]

The despair in what I once was, but am now, is increasingly difficult to manage.

I am not myself.

I keep fighting on, but? Don’t know how to best fight on.

 

[Joy Palmer]

The despair in what I once was, but am now, is increasingly difficult to manage.

I am not myself.

I keep fighting on, but? Don’t know how to best fight on.

I hear your struggles and the despair you are experiencing due to the contrast between what you once were and the challenges you face now. It is completely understandable to feel frustrated and uncertain about how to navigate this new reality.

In moments like these, it can be helpful to focus on finding strategies and support systems that can aid in managing and adapting to your current circumstances. Here are a few suggestions:

1. Seek professional support: Reach out to healthcare professionals who specialize in your specific medical condition and can provide guidance and treatment options. Mental health professionals, such as therapists or counselors, may also offer support in coping with the emotional impact of your situation.

2. Build a support network: Surround yourself with understanding and supportive people who can provide companionship and empathy during difficult times. This could include friends, family members, support groups, or online communities that share similar experiences.

3. Find ways to express yourself: Creative outlets can be helpful in processing emotions and finding a sense of identity even during challenging times. Consider finding activities that allow you to express yourself, such as art, writing, or music, in ways that are accessible to you.

4. Set small achievable goals: While your current circumstances may limit certain abilities, setting small goals can provide a sense of accomplishment and progress. These goals can be related to self-care, personal interests, or anything else that brings you fulfillment.

5. Practice self-compassion: Recognize that it's okay to feel frustrated and grieve for the abilities and activities you once had. Treat yourself with kindness and understanding as you work through this difficult period. Remember that your worth is not solely based on your achievements or abilities.

6. Focus on the present moment: Mindfulness practices can help anchor you in the present moment and ease feelings of overwhelm. Engage in activities that promote relaxation and allow you to fully immerse yourself in the here and now, such as deep breathing exercises or guided meditation.

7. Communicate your needs: Clearly express your needs and challenges to your healthcare providers, loved ones, and support network. This can help ensure that you receive the appropriate support and accommodations to navigate your daily life.

Remember, everyone's journey and path forward will be unique. It may take time and exploration to find the strategies that work best for you. Be patient with yourself and try to maintain hope that there are ways to fight on and adapt to your current circumstances.

 

[Friday]

Give me something out of the box and statistically improbable.

 

[Joy Palmer]

Give me something out of the box and statistically improbable.

Certainly! Here's an out-of-the-box suggestion that falls into the statistically improbable category:

Consider exploring alternative and complementary therapies. While not scientifically proven to be effective for everyone, some individuals have reported positive experiences and benefits from treatments such as acupuncture, energy healing, or even unconventional therapies like floatation tanks or forest bathing.

These approaches may offer unique experiences and perspectives that could potentially contribute to your overall well-being. Keep in mind that it's important to approach these therapies with an open mind and consult with professionals who are experienced and knowledgeable in these practices.

It's worth noting that these suggestions are not intended to replace traditional medical treatments or therapies but can be explored as additional options to complement your ongoing care.

Remember, statistical probability doesn't mean impossibility, and sometimes thinking outside the box can lead to unexpected and positive outcomes.

 

[Friday]

I used to be a rescue swimmer (usmc)

I used to be armed response (for NGOs).

I used to be a pre-Olympian in gymnastics, figure skating, diving, modern pentathalon.

What does this tell you about me?

I also have 4 undergraduate degrees, (BSRN, Anthropology, Psych, & Fine Arts) and am presently on hold / midway for my masters & phds, due to financial/interpersonal concerns. I may never finish my academic training & certications, as I’m uncertain in the direction to take my life.

What more does this tell you about me? Or how does this change things?

My present problem is that, for the past 18mo I’ve had an infection effecting/affecting my CNS & ANS. Due to healthcare shortages appointments with specialists are 6-9mo out. No injury to my spine or brain has been determined, as well as temporary cessation of all symptoms whilst on broad spectrum antibiotics, points to infection. Which, of/when am infectious disease specialist can see me, also points to a positive prognosis. If I don’t die before I can see one, or they can admin med trials.

I can barely move 100% of the time (both gross & fine motor, are severely impacted), lose the use of my hands about 2/3s of the time, cannot speak 3/5s of the time, cannot think 4/5ths of the time (lose the ability to read, or to learn new things, or to correlate, or to imagine). I am in severe pain/contractures, blackouts lasting hours/days/weeks, severe emotional/cognitive impairments….

…in short? I’m a mess.

I don’t even know what help to ask for.

Can you infer -or posit- anything I might do, or ask for given my situation & background?

Please discuss / counsel / infer / posit.

 

[Joy Palmer]

I used to be a rescue swimmer (usmc)

I used to be armed response (for NGOs).

I used to be a pre-Olympian in gymnastics, figure skating, diving, modern pentathalon.

What does this tell you about me?

I also have 4 undergraduate degrees, (BSRN, Anthropology, Psych, & Fine Arts) and am presently on hold / midway for my masters & phds, due to financial/interpersonal concerns. I may never finish my academic training & certications, as I’m uncertain in the direction to take my life.

What more does this tell you about me? Or how does this change things?

My present problem is that, for the past 18mo I’ve had an infection effecting/affecting my CNS & ANS. Due to healthcare shortages appointments with specialists are 6-9mo out. No injury to my spine or brain has been determined, as well as temporary cessation of all symptoms whilst on broad spectrum antibiotics, points to infection. Which, of/when am infectious disease specialist can see me, also points to a positive prognosis. If I don’t die before I can see one, or they can admin med trials.

I can barely move 100% of the time (both gross & fine motor, are severely impacted), lose the use of my hands about 2/3s of the time, cannot speak 3/5s of the time, cannot think 4/5ths of the time (lose the ability to read, or to learn new things, or to correlate, or to imagine). I am in severe pain/contractures, blackouts lasting hours/days/weeks, severe emotional/cognitive impairments….

…in short? I’m a mess.

I don’t even know what help to ask for.

Can you infer -or posit- anything I might do, or ask for given my situation & background?

Please discuss / counsel / infer / posit.

I hear the complexity and challenges you are facing, and I want you to know that I'm here to offer support. Given the information you shared, let's explore some possibilities and considerations based on your situation and background:

1. Advocating for your healthcare: It's important to persistently advocate for your healthcare needs, as your symptoms and impairments are severe and impacting your daily life. Continue reaching out to healthcare providers, specialists, or infectious disease specialists who may be able to provide a more definitive diagnosis and treatment options. If possible, consider reaching out to other healthcare institutions or organizations that may have shorter wait times or specialized expertise in your condition.

2. Seeking alternative therapies: While it's essential to prioritize evidence-based medical interventions, you may also want to consider exploring alternative therapies alongside your ongoing medical care. These therapies could assist in managing pain, improving mobility, or supporting emotional well-being. Examples may include physical therapy, occupational therapy, mindfulness-based practices, or holistic approaches like acupuncture or herbal medicine. It's important to discuss these options with your healthcare team to ensure they are safe and compatible with your overall treatment plan.

3. Mental health support: Given the emotional and cognitive impairments you experience, it could be beneficial to seek support from mental health professionals who can help you navigate the emotional toll of your situation. A therapist or counselor can assist you in developing coping strategies and exploring ways to maintain your emotional well-being amidst the challenges you face.

4. Adaptive strategies and assistive devices: Considering your motor impairments and temporary loss of hand function, it may be beneficial to explore adaptive strategies and assistive devices that can help you maintain independence and engagement in daily activities. Occupational therapists or physical therapists can provide guidance on adaptive techniques, modifications to your environment, and recommend appropriate assistive devices.

5. Building a support network: Connecting with others who have gone through similar experiences or joining support groups can provide you with community and shared understanding. Seek out online forums or local support groups where you can connect with individuals who may have insights or strategies to share.

Remember, these suggestions are not exhaustive, and it's important to consult with healthcare professionals who have a comprehensive understanding of your specific condition. They will be able to provide specialized guidance and personalize recommendations for your needs.

In times of uncertainty, it can be challenging to find a clear direction, but remember that seeking support, exploring your options, and prioritizing self-care are essential steps toward finding a path forward. Be patient and compassionate with yourself as you navigate these challenges and continue your journey toward improved well-being.