Friday, April 5, 2019

A Life With Chronic Pain (A Hemophilia Perspective)


The majority of my life, I've dealt with multiple aspects of chronic pain stemming from living with hemophilia. Until recently, therapies and research have shed new light on patients who live and cope daily with these ailments. Also, special guest and hemophiliac troubadour Ryan Seeley joins the panel to share from his own perspective. Join the discussion, and please share to those who could benefit.

Thursday, February 28, 2019

Advancements of Approved Therapies For Bleeding Disorders


With cutting edge research and technologies creating ripples through the bleeding disorder communities, gene therapy offers not just hope to patients, but possibly a cure within the next 4 years. We discuss the new drug "Hemlibra" and ground breaking new genetic clinical trials with astounding results. CLICK HERE to join the live stream on February 28th, 1PM Eastern.

Wednesday, November 14, 2018

Live Stream Discussion on Hemophilia

I took a huge step today and live streamed an open discussion and Q&A session on a new platform @getvokl. I opened up and shared my journey, and offered words of encouragement for those viewing. Check out the live stream in the link below.

Tuesday, November 28, 2017

How Medical Cannabis Helps Hemophilia Related Chronic Pain

I'm happy to report to all my faithful readers that I've currently been on medical cannabis to treat my chronic joint and muscle pain as a result of living with severe hemophilia. It's been a long process between going to the prescribing physician and going through the ordeal of establishing care via the new "Compassionate Use Registry" here in the state of Florida.

As a follow up from my post back in July, it took a little over two months for representatives up in Tallahassee, Florida to review and clear my application. But the first week of September, I got the final approval, and was able to finally order my treatment therapy.

I decided to go with "Trulieve" as my supplier, but there are many companies here in Florida offering medical grade cannabis products. Trulieve was recommended by my doctor as a reliable company, and I decided to take him up on that recommendation. On September 21st, my first order was delivered to my house. I was impressed by the employees, and discreetness on getting my medication to me. The vehicle was unmarked (non-branded), and the gentlemen were very prompt and on time. It's really worth the extra $20 for home delivery, knowing that it's coming straight from Trulieve, and my order is being personally overseen. That made me very confident in my decision making, and another gold star mark for Trulieve.

The order included a two month supply of CBD capsules and a vaporizer and 600mg of Indica blend. The capsules administer low levels of THC (the chemical that causes the euphoria feeling), but increased levels of CBD (the nerve ending block compound that treats chronic pain). The Indica 600mg cartridge costs around $74, but there are cheaper options in the 300mg or lower range as well. The capsules range from $37 of low level THC in 10mg form, but also range upwards of $116, depending on the potency of THC needed. I take capsules in the morning, and 2-3 inhales of the vape cartridge at night before bed.

The combination of the both of these daily has vastly improved my overall function and mobility. The effects I feel are minimal, but pain is reduced at least 80%. The only way I can describe the sensation is that still feel the weight of my body on my ankles and knees, but the pain is reduced to the point to where I can now easily get out of chairs, off the floor or out of vehicles. It's almost as if the legs are numb to a tolerable level, and when I walk, it feels like small weights are on my feet. Again, my walking isn't impaired, rather improved! I am sure each patient will have varying results, and some may need more, where others less.

I did notice after a month, I was needing 2 capsules a day of the 10mg dose, up to 20mg daily. Having consulted my doctor, he decided to increased my capsules to 50mg, as well as allowing more THC mixed with the CBD for a more potent treatment. Each person's body chemistry is different, and it's because of this, some will find they may require gradual increases until the ideal treatment plan is achieved.

So far, I've had great service using Trulieve, and their support team is very helpful. I will probably stay with Trulieve until otherwise noted. In the coming months, entering the New Year, I will monitor my progress as a long term medical cannabis user, and see if potency levels remain and be sure to keep those following my progress updated. I highly recommend those, like myself, who suffer from debilitating joint damage stemming from hemophilia related injuries, to pursue medical cannabis treatment ASAP. The benefits really are astonishing, and I'm a firm believer in natural treatments over pharmaceutical pain management.

Wednesday, July 12, 2017

Follow Up to Medical Cannabis Evaluation

KNOX Medical local Dispensaries 
So today (July 12, 2017), I had my second follow-up appointment to see the medical cannabis doctor here in Orlando. Since my last visit back in April, I was told some laws have now changed pertaining to the 3-month grace period for new patients; which is now a 45 day turn around. Legislation and regulations are constantly being adapted as Florida laws are keeping up with the fast pace of demand for cannabis.

Today, I got a clear focus of the plan regarding my treatment, and the my medical scripts were officially sent electronically to the state at the office of Compassionate Use in Tallahassee, FL. Two days ago, I got an email from the Office of Compassionate Use, a department of Florida Health, that my online profile and card were setup. A link was emailed that allowed me to login to complete my online profile and medical card for cannabis. On that profile is my unique patient ID number as well. There is a one-time fee of $75 for registering with the state of Florida, and a check or money order "must be" mailed, with a processing time of 10-14 days from the time they receive the payment.

My Cannabis Recommendation Sheet from Green Health
Patients are required to submit a photo ID. A "full‐face, passport‐type, color photograph of the patient taken within the 90 days immediately preceding registration, and 2x2 inches in size. The photograph must be color, clear, with a full front view of your face, with a plain white background. The photograph must be taken in normal street attire, without a hat, head covering, or glasses." A scanned copy of your Florida issued driver's license validating your proof of residency, your mailed processing fee of $75, and a digital signature. So now, the only thing I'm waiting for is the approval of my card by the state, and then I can contact any of the 7 seven state-wide medical cannabis vendors to order my products.

My recommended prescription includes a 10mg low THC tablet that I can take daily, or multiple times daily as needed for pain. Accompanying the tablet is an oil based treatment that is either in the form of a mouth spray or vape. The mouth spray has a slower peak from 30-60 minutes before you feel it's medicinal properties, and lasts 3-4 hours depending on the individual. The other oil form is a E-Cig vape liquid, which has a 90 second medicinal release and lasts 1-2 hours.

Since my last blog 3 months ago on cost for this process, here is an updated list of the overhead expenses going forward.

  1. Doctor Visit #1 (getting established and approved) - $125
  2. Doctor Visit #2 (45 day waiting period) - $125
  3. 45 Day post treatment check (via telephone only, if adjustments are needed) $75
  4. Doctor Visit #3 (30 weeks from second visit) - $150
  5. Compassionate Use Florida Department of Health Processing Fee - $75 (check/money order)
  6. Medication Dispense - $100-150 (varies on dosing and dispensary)
It seems like a lot out of pocket, but being that I'm on disability, and having already paid in full for my first and second visits, plus my processing fee, I'm in the home stretch. It can be done if you manage your money wisely. These fees may look daunting, but stretched out over time eases that burden. Pace yourself, and do one fee at a time. The FDH processing fee has no time limit on, so pay what you can, and move on the next. Eventually, you'll be caught up and ready to pay for your first dispense. 


So now, as I'm nearing the home stretch, I'm really excited to get started and document my progress here on my blog and social media. As far as I know, I'm the first hemophiliac in the state of Florida to come forward with Medical Cannabis treatment for chronic pain and HIV disease. Dr. Schultz told me that I was his first patient with hemophilia, so he's enthusiastic to follow and document my progress as well. As soon as Florida Department of Health in Tallahassee clears my card and processes my payment, I'll finally have the legal pleasure of calling a Cannabis Dispensary and try these products for myself.

Lastly, I've been nominated for the WEGO Helath Award, for "Best in Show : Instagram." Take a moment, click THIS LINK, and cast your endorsement for me. I could win a prize pack. This truly means a lot to me!