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!

Thursday, April 6, 2017

Going Green, a Journey of Medical Cannabis

On November 8th, 2016, Florida voters went to the polls and cast their ballots to pass medical marijuana as an alternative chronic pain treatment option. Amendment 2 under new Florida law states, a person may possess and use marijuana if he or she is doing so to treat a "debilitating medical condition," which includes but not limited to: PTSD, cancer, epilepsy, glaucoma, HIV, AIDS, ALS, Crohn's or Parkinson's disease and multiple sclerosis. Amendment 2 passed with an overwhelming 71% vote, and for the first time granting the state of Florida and board certified doctors to prescribe low-THC cannabis and other medicinal forms of the cannabinoid. Even though the 5 page document which embodies amendment 2 is relatively small, a lot of ground work is still needed by lawmakers and legislation to prepare the state for medical marijuana distribution. Patients with a valid state issued ID, medical documentation of "debilitating medical condition," and no previous drug/criminal history are eligible. This is where I come in.

I waited a few months after January 3rd, 2017, when the law took effect in Florida, to search for a certified doctor who prescribed medical marijuana that I felt comfortable with. The main reason for my delay was to follow up with my own research into the process, and understand how this new system works for patients from the outside. I am documenting my complete journey, in hopes of offering educational value and assistance to patients who are seeking the same level of care as I. After hours of my own investigating, I was finally able to settle on my doctor here in the Orlando, FL metro area. He is Dr. Jason Schultz, an Orlando based emergency medicine physician, and his practice under the Florida state-wide organization is called "Green Health." Green Health has multiple offices currently in Tampa, St. Petersburg, Orlando, Jacksonville, Miami, West Palm Beach and Fort Lauderdale.

So what exactly is the process for the state of Florida in obtaining a "medical marijuana" card? Getting an appointment is relatively easy, as they accept any appointments as new patients. The key, however, is that you must provide a primary or specialty doctor's summary stating your diagnosis on the outlined approved medical conditions for the state, which are outlined above. Let me be 100% clear, your medical insurance WILL NOT cover any of the treatment guidelines offered by the medical marijuana doctor's office. All visits to this office are $125 per visit, but we'll cover up front expenses later.

So, what does a medical marijuana doctor's office look like? If your first initial response was like mine, a 'hole-in-the-wall' building that just serves to hand out marijuana cards, you're poorly mistaken. Upon entering the building, which is home to many other medical companies like Vista Labs, and Simon Med radiology, I noticed it was very clean, and well maintained. Green Health is located on the second floor here in the Longwood, FL office. Upon entering the door, you're greeted with a Green Health insignia, and a rahter pristine establishment. I seriously had no gripes about the facility itself, and was very relieved to see the Green Health clinic office was actually more modern and upscale than I originally anticipated. One never knows what ordeals you're getting yourself into in going to these types of unknown and new places, especially one that prescribes cannabis.

The waiting room was very pleasant with low-lit ambient lighting, which was a perfect environment for those battling light sensitivity ailments. Again, very clean and modern. All patients fill out a 5-6 page questionnaire which are generalized insight into your medical conditions and the reason of your visit. The staff and nurses were all warm and welcoming, and greeted every patient with the same level of respect and sincerity. They also request your state issued ID which is used to determine your criminal status (if any), and validate your residency and home address. I had no hesitation in handing them my Florida state driver's license.

The exam rooms also followed suit with a modern feel, the floors were spotless. With any doctor appointment, I always can determine the caliber of establishment based on the overall cleanliness of the facility. Again, I'm thoroughly impressed with Green Health and the building facility. The nurse took my vitals, and politely asked me to wait as the doctor would be in shortly. The wait was less than 5 minutes, and Dr. James Schultz greeted me with a friendly smile and hand shake. His bedside manner was just remarkable, and super easy to talk to. He encourages patients to ask as many questions as you want, and that the time spent with him is truly valued. We spent about 20 minutes discussing my potential treatment plan and combination therapy for chronic pain management. I asked so many questions from cost, protocol, medical delivery etc.

So, let's get down to the real meat and potatoes of how Florida handles medical marijuana. Each doctor's visit with Green Health is $125 out of pocket, no insurance accepted. A minimum of two visits are required. Upon the second visit after 90 days, the physician can then legally recommend medical marijuana to patients. The 90 day waiting period is mandatory from your first visit. Every 45 days, a follow phone call is required to discuss dosing adjustments and any alterations to the treatment plan needed. This phone "check-in" is $20, and required every 45 days for medical delivery and marijuana card membership. After 90 days, the physician will then order the desired medications from one of the dispensaries located nearest to you within the state.

My local dispensary happens to be Knox Farms in Winter Garden, FL. So how much is it to purchase non-insurance based medical marijuana? A little more pricey than you think. With a limited number of dispensaries starting out, only seven currently in Florida, the prices are higher starting out. My doctor informed me that he would start me on a 24-hour chronic pain low-THC treatment plan. The regimen would be comprised 1 cannabis pill daily that lasts 12 hours for daytime activity, mouth drops for nighttime and a vapor for breakthrough pain related episodes. With these three medications from the dispensary, my total will range from $100-150 every 45 days out of pocket expenses for the first month. There is also a $20 dispensary deliver fee, in which my prescriptions will be delivered discretely to my house from Knox Farms. Dr. Schultz did advise me that I won't have to purchase some of the medications upon my follow up dispense, as some items are "as needed." Like the vapor, which is a 1-2 hour short acting treatment for breakthrough episodes. The main focus is the pill forms daily.

So, here we are. First visit is over, and I now await my post 90 day doctor visit to actually be able to purchase medical marijuana for my chronic pain. Let's recap all the overhead expenses you need to know about if you plan to pursue this treatment option for your medical conditions.
  1. Doctor Visit #1 (getting established) - $125
  2. Doctor Visit #2 (post 90 day approval) - $125
  3. Every 45 day Check-in (to maintain card as patient) - $20
  4. Medication Dispense (first shipment) - $100-150
  5. Medication Dispense (post first shipment) - $45-55
I do hope this helps to shed some light on the whole process here in Florida. It does have some intricacies to it, and the second 90 day waiting period is a bit of a pain, no pun intended. To keep your medications arriving monthly will generally cost about $70-100 according to the information I received at today's office visit. These prices, though on the higher end now, will gradually decline as more and more patients register, and more dispensaries arrive in the Sunshine State. 

I can't imagine a world living in little pain, and not having to rely on harmful opiods to manage my conditions. I truly excited to give this new option an try, and I plan to document everything here in my blog. 

Monday, January 23, 2017

2017 Update on the New Medications

As you may recall back in December, I set out on a new journey to better my overall well being, lifestyle and treatment regimens for my chronic illnesses. First and foremost, I began by seeking new therapies for my Hemophilia treatment. Having been on the former treatment for 14 years, I was horribly overdue for a fresh set of eyes on my case.

I'm happy to report since I started Adynovate in December, I haven't had any break-through bleeds, and I'm physically doing better. Though I have permanent joint damage and partial muscle atrophy, the twice a week injections are working exactly as the doctor said they would. I have noticed a slight increase in overall activity including walking, doing more around the house and being just overall more active in my day-to-day routine. I realize my case and situation isn't everyone else's, but I can speak now on behalf of the newer generation anti-hemophiliac factor VIII concentrates that they do work. I was skeptical, like most at first, but now seeing the results of these drugs first hand, I realize the benefit they offer. I haven't really noticed any side effects as a result of the new treatment plan.

Also, being on a new HIV drug called Triumeq, which I began taking on December 15th, 2016, has also been part of a new overall health treatment upgrade. After a month of taking just one pill a day, from my previous 5 pills a day, I officially got my lab work back this morning to see how the new drug was working in my system. View the results below.



I don't expect everyone to understand what those results indicate, but "Not Detected" or "Undetected" status on an HIV viral load test indicates the medication is working, and my HIV is controlled to a non-readable status by modern tests. This is great news, because if the test were to show a viral load number result, that would mean the drug is ineffective and I would have to try something else. I don't regret changing my anti-virals after 12 years to more refined and modern drugs, and the results speak for themselves.

So there you have it, a 2017 update on my overall health and well being. I'm doing wonderfully! And just a side note, I have been following up with a liver specialist at my new Hemophilia Treatment Center, and I'm undergoing two scans next month in February to see how my liver health has improved since being cured of Hepatitis C in 2014. Since I'm a hemophiliac, I cannot undergo a liver biopsy, rather a FibroScan and standard abdominal ultrasound. This will determine if I have any liver issues like fatty liver or scarring that I've inherited over the past 30 years of living with a HCV and liver inflammation. That's all for now, see you soon!