Category: Psoriasis Psoriatic Arthritis

HealthEvoices18

This was my 3rd year at healthevoices. There are so many advocates out there that do such amazing work. I have been lucky enough to be here for 3 years and i have met so many amazing people. If you passed any one of us on the street you would never ever know what we face each and every day. Everyone here has a smile on their faces we are genuinely happy. We are its the one place i can say damn i hurt so friggin bad, i walk into the ‘social’ room and guess what? There are comfy chairs and heating pads. OMG just what i needed.  I talk with an advocate that i met just last year and we talk for about an hour, we have alot in common. We think alot alike. I step out and run into and old friend and we chat for awhile. Then during dinner im posting on twitter and i remember there was someone who wanted to meet me. I wanted to meet her but i havent yet. I tweet hey where are you? The reply…. 2 tables away! Success! Its her first time here and shes having a great time. Its great hearing that, as this is THE best conference an online advocate could goto. Why?

Well…. I advocate for Psoriasis and Psoriatic Arthritis. She advocates for MS. Another for Lupus, another for HIV, and yet another for Diabetes. Wait? Type 1 or type 2? They are all represented here. Actually this year there are 122 advocates representing over 40 different conditions. We have 1 thing in common. We set aside our problems to help others as much as possible. This is a part time job for alot of us and a full time job for others. We all share a common bond. We all advocate, wait did i say that yet? 😉

I was talking to Caroline (who runs healthevoices) and i said this is a family reunion. The bonds that are formed here carry on throughout the year, we then meet up next year and strengthen the old bonds and form new ones. Then only bad part of this conference is Sunday. Saying goodbye is never easy. Its so hard. Just thinking about it gives me chills. Im going to stop here as its only day 1. Ill share more tomorrow night. Oh wait maybe not, you may have to wait until i get home. Talk soon. Much love.

P.S. The legal folk tell me i have to put this disclaimer. My friends know me better though. I am truthful. I do not lie. If something is good i will tell you. If something is not, i will tell you. There is no amount of money that could change my opinion. With that being said the crew at Janssen, JnJ, TonicLC and everyone of our sponsors that allow for this conference to be possible are some of the nicest people i have ever met. They truly care.

Note: I typed this while at HealthEvoices and it was in a notepad saved on my computer. I never published it, just saw it. OMG im losing my mind..

 

“Janssen covered my travel expenses to attend #HealtheVoices18. All thoughts and opinions expressed here are my own.”

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So its been 2 months already! also STIGMA! UGH!

Wow!! Times flies! I am looking here and seeing that i haven’t posted since i started on Medical Marijuana. So here goes…..

I am now sleeping like a baby. I have pretty much learned (the hard way) on how to and how not to vape. LOL. I take a capsule at night then vape. The vaping will relax me enough that i can get comfortable, then the capsule kicks in somewhere about 60-120 minutes after consumption. It then lasts about 8 hours. I have fallen asleep in my chair watching TV many times now. Whats insane is i wake up 8 hours later and i haven’t moved at all. I fall asleep with my phone and TV remote on the arm of the chair and my arm is literally an inch away from them. I wake up in the exact same position. I wake up fully refreshed and with only a little pain in my back. Sometimes i’m in such pain by the time i am getting to work i need to take a quick hit beforehand, and only twice did i truly overdo it. I try to be as careful as possible as i work in the tech field and i need to be quick in the thought process, and getting too much could possibly slow me down. It hasn’t but it could.

It is really helping with the pain, so i may sleep and thats awesome. I was taking Tramadol (an opiod) and with the news lately im sure you have heard many negative things going on there, now add to that the tramadol stopped working for me, which means i would’ve had to 1) take a stronger dose, or 2) Take another stronger pill which ‘could’ lead to addiction, so i just dont want to go there.

Ok onto other thoughts…. Stigma! OMG! When you say im taking medical marijuana people will start to either judge you (in a very negative way) OR if they are into alternative medicine they will be happy you are going that route. So…. For the record Medical Marijuana is NOT there for people to get high walk around in a stupor and munch Doritos all day long. You see its truly thought out and prescribed by a licensed pharmacist (in the state of New York anyway) and explained to the patient. You can use something with high CBD, high THC or any combination of the above. CBD no NO psychoactive component to it just the THC does. So if you take something that balances the 2 like 1 thc to 1 cbd you wont get the ‘high’ feeling just the relief. High CBD is awesome for muscle cramps, pain relief and its an anti inflammatory. The higher THC with little or no CBD will make you feel that ‘high’. I DO take high THC to sleep i dont usually get to the stage where i feel stoned i just feel my eyes close then awake 8 hours later this is AWESOME. During the day i take the ones that are balanced to maximize relief and i can still concentrate and work.

Yesterday i saw my primary care physician. She doesnt prescribe medical marijuana so she has never seen the products. I went over explaining some of this to her and she was all for it. She mentioned she did have a patient that told her it was cost prohibitive. And that other patient was right. In the great state of new york the prices for medical marijuana are way too high for alot of people. Those of us chronic pain sufferers pay ALOT of money anyway. I see at least one doctor a month. I have tried many things. This stuff works BUT the insurance company will not pay for it, but they would be happy to pay for opiods. I think they are 8$ copay for a 1 month supply of 4 pills a day. Medical Marijuana is however about 2 or 3 hundred dollars a month. So for 8$/month i could OD trying to stop the pain, but instead i pay out of pocket 300$/month and noone has EVER died of a pot overdose. Its not possible. Yes too much THC can make you flip out, hundreds of people call 911 thinking that they are dying, when all thats needed is for them to take some CBD (it counteracts the THC as i mentioned before) or they can eat a bunch of carbs. That will slow down the absorption and help a bit, but the fact remains the same its impossible to die from it.

Ok back to my PCP. I told her i want to wean off the muscle relaxers, and NSAIDS, and she agrees 100%. This is awesome as i already got off my nerve pills (gabapentin) which if you look up ANY of the medicine i take, the side effect of 99% of them is weight gain. If i can get off everything, i should be able to lose a few pounds and hopefully get off the 3 blood pressure pills i need to take everyday.

I really hope you have enjoyed reading this as much i have enjoyed writing. I feel if i have helped just one person a day its been a beautiful day.

If you have read this much this far please please please comment. If you dont want your comment publish i will keep it private. I am an advocate and i understand the health laws and never mention names etc. Thank you.

I wish you all peace love and happiness.

 

 

New medicine 4 me…. MediJuana

Having PsA is not easy. Being in constant pain really sucks. Having to ask my 13 year old daughter to open a can because i couldnt turn the opener at age 47 was something i couldnt do. I just could not do it. I mean here i am a grown man once strong as a horse now falling apart. It hurt. It hurt inside where no-one can see. It brought me to my knees.

To top this off i have 2 herniated discs in my lower back. This has caused my right thigh to go numb. Now and then it feels like someone just held ice cubes to my leg at other times i get a burning sensation, almost like someone held a lit cigar to my leg. I have actually jumped because of the pain.

Now…. add a ton of nights where i fall asleep only to wake in a couple hours and lie there the rest of the night (about 4 or 5 hours) then have to goto work. I am truly falling apart. Well this has got to stop……

I found out last year my neurologist now prescribes medical marijuana. My daughter and her partner both use it for their ailments with great success. I would like to try. So i got certified, and went to the dispensary. After speaking with the pharmacist i decided on 2 items to try.  I am pleased to say the sleeping is no longer an issue. Every night at bedtime, 2 or 3 hits on the vape and sleep comes quick. If i do wake up at 1am like before, i will try to get back to sleep, but if like before i cant get comfortable, or my back hurts that bad,  2 more puffs will do the trick. I have a spray for daytime use that doesnt give you the high so i may concentrate at the office. OMG… This is life changing. Next i need to bring my medicine list into my next appointment. Lets see if we can know a few pills off by replacing them with a little weed. Did you know its anti-inflammatory, kills pain, can be used for muscle spasms. Yes its got a LOT of uses, ill keep exploring , reading and let you know. Have questions? Please dont be afraid to ask. 🙂

Sweet dreams all…

reflections and ramblings

Its absolutely incredible. I bought my 1st computer in 1982. Back then the internet as we know it today didn’t exist yet, but there was quite a bit of information out there. Through the years its changed quite a bit and a lot more information exists. Much like the way the internet has changed a lot so have i in the last 36 years.

As my life has changed and i have been challenged in many ways i have become stronger in some areas, weaker in others and i have learned many things. Such as learning that as long as there has been snake oil salesman, snake oil has been sold. Having Psoriasis i have searched the internet for ways to help myself without the need for drugs. I tried a few things that seemed to help a little, but then i was diagnosed with Psoriatic Arthritis i knew then and there that a biologic is the only way to go. How did i know? I had searched high and low for all the information i could get. Being a computer tech all my career i knew how to search and weed out the snake oils. Reading reading reading i knew that it was now a lifetime decision. Should i want to continue to walk in a couple years the only way is to block the disease. Stop it in its tracks. So that’s the way i went about it, what was weird is my right hand never cleared, and as i explained in an earlier post that was due to a nickel allergy. Since finding that out i have been 97 – 100% clear for the past couple years. I continue to search this and i keep finding more and more information. Im finding more food allergy bloggers and i know their findings can help alot.

thoughts?

International Symbol of Access – Whats YOUR opinion?

International Symbol of Access – Whats YOUR opinion?

When i received my first ISA (International Symbol of Access) badge for my car, it was a temp and red and showed the wheelchair, the newer more modern design that i received in November 2016 shows a person moving in the chair. I like the newer design much more as it shows activity rather than someone stuck there. I wondered when it changed so i looked it up here. https://en.wikipedia.org/wiki/International_Symbol_of_Access and now i am angry as the ISO

7001 thats in charge of these symbols has rejected the newer image. As a person with a permanent disability would like to vote and have my say so.

another year

its hard to believe another year has passed, it was here and now its almost gone. It was a good year overall. It started off on a bittersweet note, after splitting up with my girlfriend of 13 years, it was sad but i was also happy to be able to spread my wings and breathe some fresh air for a change.

In 2017 i went to congress to as for money to be allocated for the CDC, went to a truly phenomenal HealthEVoices.com event in beautiful Chicago, had some awesome Lou Malnati’s pizza, then returned to the same hotel for the National Psoriasis Foundations volunteer conference, and tried Giordanos pizza as well. According to my palate Lou takes the pie. They were both excellent pies but i truly loved the crust on Lou’s butter crust pie. Met up with my Psoriatic family “I know PsO”, volunteered at the NPF’s bike ride as well as the walk, attended a world psoriasis day event…. Im sure i did more but thats all i can think of at the moment, and i cant wait to do it all over again this year, plus more!

Some days aren’t worth opening your eyes

December 30th was an awful day. i woke up about 4am and couldn’t fall asleep. i had planned on doing so much this weekend as on the 8th i am getting my 2nd epidural (1st one was Feb 20th so not too bad)

I have been able to strengthen my back somewhat since the 1st one so i am feeling better but not 100%. I can now stand at the sink a little longer maybe? And since i have a standing desk and standing chair a the office i have literally stood all day just sitting to eat breakfast and lunch.

Anyway i got up made breakfast (i actually sat at the stove while making sausage/eggs) as i have no energy. Every joint ever muscle everything ached. God i HATE PsA, When the fatigue sets in you are done. And try explaining this to someone who doesn’t have it. NO ONE understands. I napped after breakfast then napped after napping. I ate lunch and just sat there watching TV. I finally showered about 4 and was ready for another nap.  Sounds like fun huh?

I felt totally useless all day. Hence this post today.

If you have PsA, how do you manage these days?

 

Its such a small world!

i was in the office friday when a co-worker approached me. “I see on your facebook profile, something about Psoriasis, do you have it?”, she asked. Yes, yes i do was the reply , we must talk, ill be back later she said.

I have worked with this girl for about 5 years now and this was the 1st time we talked about Psoriasis. i first explained that i am an advocate, mentor, and that i have worked with the pharmaceuticals to help make our world a better place. She then removed the sweater she was wearing over the short sleeved top, and there she showed me her arms all covered. So typical, that everyone hides their P, i had no idea she had it until she approached me. She asked about the medicines i use etc then said she wants to modify her diet rather than use the medicines. I assured her that it works for some people, not everyone, and said that i am one of those especially since i have a nickel allergy. She says, you too?! both of us were shocked. How crazy huh? So i started talking about how we discovered my allergy and how it affects me. I eat oatmeal everyday my right hand becomes inflamed gets the rash, cracks, peels, bleeds. I stay away from Oatmeal, Kale, Spinach and other foods that are high in nickel and im fine. (the Stelara will keep me clear as long as i dont overdo the nickel.)

I then told her about Selectivor.com , they have an app plus website access for those of us with food allergies or sensitivities. When in a restaurant or shopping i can open the app and clearly see what foods are or and which are really bad for me. Plus i can share my profile and others can share with me (like my daughter and i share) so we are sure what we can make for each other. This gets “Best app of the year” vote from me.

Stelara Day!

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1 awesome dermatologist + 1 shot Stelara = 1 happy patient! (Repeat quarterly)

Since getting on Stelara 4 years ago i have been 100% clear 90+ % of the time. They few times i havent were due to me getting close to the 90 days or the atopic dermatitis caused by my allergy to nickel (it looks ALOT like Psoriasis but with a huge difference, that its only on 1 hand not both)

I also saw my Rheumatologist on monday as well and he sees 0 inflammation on my blood markers. This is extra awesome to me as that means my joints arent deteriorating as fast as the would without the Stelara. Man if i praise Stelara alot its because when i started on it, it was the latest and greatest drug on the market, and here 4 years later its still a super awesome drug.

And a little disclaimer here, although i have worked and will continue to work with Janssen Pharmaceuticals (maker of Stelara) all this praise has nothing to do with that. My opinions in my blog are just that, mine. If i try something and it sucks. I will tell you plain and simple.

 

Professional Cleaning

I was recently asked to try a new toothbrush (ClickHere) They are amazing! Made of natural bristles, when you are done brushing your teeth have that just cleaned feeling of being squeaky clean! Absolutely amazing i love these things they are better than my electric toothbrush!