Monday, December 19, 2011

The "Book"

This Blog is a "Warehouse" storing my thoughts and experiences related to "Living with AIP".
Then to turn my Blog into a Book...
As time has passed it has become really really hard for me to try to pull it all together. I feel eroded from the inside out.
Editing, formatting, publishing and marketing a book feels like mission impossible with my current challenges.
My nervous system has taken a serious hit from the chemical corrosive nature that chronically Active AIP creates. After trying to "push through it" and battling with denial... I am learning to accept that I have to respect my limitations... and try hard to make the most of better days.
Finishing a well written book that will help others navigate their rare disease is still my personal goal!!

But...
I think that I need to consider re-investing in regular Blog Writing...
Because it is therapeutic... it is good for me.

My family is as supportive as they know how to be... but writing allows me to vent and sort my thoughts in a calmer... more organized... less dramatic... more healthy fashion.

Since October 2011 I have reached out to "Modern Medicine" in hopes that they could help me feel better... I had done that multiple times in my life with statistically poor help to stress benefit. This time has turned out to be little different... now what???

More Spirituality...
More Alternative and Cognitive/Mental Therapies...
Daily Vegetable & Fruit Juicing???

I am tired out...
but soldiering on in hopes of learning to dance well with my health situation.

December 2011 Letters to Doctors

December 1, 2011
Dear Doctor__ (a letter faxed to my primary Care Physician),
First, I want to wish you and your family a very happy holiday season. You have been a kind, invested partner in my health journey and I sincerely appreciate you. Next, I want to update you on my ongoing health situation. Since our last meeting I have continued to struggle with daily health issues that inhibit my quality of life. I remain unable to work. I now regularly see you for Primary Care (Q6ms), a Hematologist (Q2wks), a Hepatologist (Q6ms), a Psychiatrist (Qmo), a Therapist (Qwk), an AIP Specialist (PRN) and an Endocrinologist (Q12ms). I also participate in monthly SKYPE meetings as part of my participation in the Mount Sinai NYC long-term AIP clinical study. I follow a gluten free, dairy free diet (reality= 90% of time). I avoid all AIP triggers within my control. Regarding current treatment… I take Gabapentin 300mg TID, Phenergan as needed for nausea and agitation, Estrace QWK, Naproxen PRN for moderate pain, and weekly Dextrose infusions the day after Estrace . The Hematologist is collaborating with Mount Sinai regarding AIP Tx Mgmt… we are considering regular Hematin infusions… but are trying the dextrose first because I seem to have good improvement with dextrose alone (1 to 2 days of lasting benefit vs little to no lasting benefit with Hematin). Prior to Thanksgiving I went to the hospital’s Out-Pt Special Procedures Unit to have an Ultrasound Guided PICC Insertion… they tried 3 times and failed x3. I have been getting peripheral lines each Dextrose infusion at present. I have follow-up visit with the Hematologist tomorrow (12/02/2011), hopefully we will make a new plan.
The daily neuropathy pain in my limbs has significantly decreased with the Gabapentin. My mental health and cognitive ability continue to be a challenge. The Psychiatrist has been following me with monthly visits and I now see a good Therapist weekly.
With a “heavy heart” I went to the Social Security Office 11/23/2011 and officially applied for long-term disability.
I am scheduled to see you again in January 2012, but wanted to connect with you to let you know where I am in my health journey now.

Best Wishes & Blessings~
T. Suzanne Jaynes-Emmert

December 2, 2011
Dear Dr. ___ (a letter read to my hematologist at office visit),
At times I have trouble finding my words when I need them. I have found that writing out my thoughts ahead of time can greatly improve the clarity of my communication. Please hear me when I say how much I admire your knowledge and medical insight. We have partnered in my health journey for almost 4 years now. I respect you and trust you to take care of me when I am at my worst. Due to the neuro-corrosive nature of my illness, my intellectual stability has become unreliable. It is becoming increasingly difficult to manage my disease as independently as I use to. I am at a point where I must rely on others to help navigate my path. The problem is that I have a growing lack of confidence due to multiple human errors and a lack of both investment and thorough follow-through. My anxiety and stress level have been negatively impacted by seeking medical help. I feel scared and lack the confidence that I want to have in the medical profession.
Examples:
-Medical Providers that I am entrusting my emotions, my physical body and my very life to, cause me great anxiety due to a significant knowledge deficit related to the Pathophysiology of Acute Intermittent Porphyria… the Porphyria Drug Database is rarely referred to without my prompting and I fear receiving a drug that will cause me further problems… improper porphyrin tests are ordered and incorrectly gathered during acute attacks… I am not sure if staff are aware of the risk of respiratory paralysis when inpt… I don’t feel heard when I say something makes me feel worse after trying a new treatment… I try to provide educational resources (CEUs, brochures, scholarly articles) but I feel my attempts to educate fall on deaf ears.
-Plan of Tx discussed at office visit differs from executed medical follow up
-Ultrasound Guided PICC Placement Failed x3 with significant pain
-Lack of Care Planning Re: PICC teaching/management after 4 nurse:pt discussions
-Direct untruth Re: Home Health Referral to Amedysis… not done

Positive Action Steps I have taken:
-Set up Case Management through my Health Insurance
-Started a medical coordination log
-Engaged a new Therapist with AIP experience (2 patients)
-Monthly Psychiatry Appointments
-Write out organized thoughts for medical appointments prior to visit

Idea for Treatment Plan:
-Discuss potential impact of 1 or 2 dextrose infusions qwk… Diabetes risks… other risks… monitoring protocol… what if Diabetes develops? How to manage both???
-Arrange Port placement in January (consider liver biopsy?)
-Request a 23hour obv to receive Hematin and dextrose after placement… to follow up anxiety and stress of procedure
-Continue weekly dextrose the day after Estrace at infusion center with a peripheral line until port in place
-After port… if advisable 2x/wk dextrose… infusion center or HOME infusions???
-After port… Hematin as advised

-??Wt management thoughts to minimize diabetic risk? Current GF/Dairy-free, ~1800 cal/day, exercise QD as tol, conscious of glycemic index, thyroid goitergens and liver: protein relationship

Thank You for valuing my situation and allowing me to be heard.
I look forward to your thoughts and comments.

Respectfully~
T. Suzanne Jaynes-Emmert
AIP Patient

December 2, 2011
Dear Dr. ___ (letter read to Psychiatrist at office visit),
At times I have trouble finding my words when I need them. I have found that writing out my thoughts ahead of time can greatly improve the clarity of my communication. Please hear me when I say how much I admire your knowledge and medical insight. I am glad that we have partnered in my health journey and I appreciate your investment in assisting me in the management of a rare medical situation.
The gabapentin continues to help ease my everyday neuro-sensory hypersensitivities and peripheral neuropathies.
I have found the Klonopin is something I cannot take… my Porphyria is too sensitive to small triggers at present and I would feel more comfortable with a PRN antianxiety medication that is safe for AIP people.
I have been using the Phenergan for nausea, agitation and restlessness. How do you feel about a low dose pill form that I could use more regularly for the agitation and restlessness?
Action Steps I have taken:
-Set up Case Management through Health Insurance
-Started a medical coordination log
-Applied for Social Security Disability
-Engaged a new Therapist with AIP experience x2
-Write out organized thoughts for medical appointments prior to visit

Tentative Treatment Plan:
-Change PRN Anxiety Med to AIP Safe
-?Phenergan pills for agitation/restlessness
-Therapist Qwk

Thank You for valuing my situation and allowing me to be heard.
I look forward to your thoughts and comments.

Respectfully~
T. Suzanne Jaynes-Emmert
AIP Patient