Category: Psoriasis Psoriatic Arthritis

Followup on Terrible Tuesday

So…. Its been a month and a half since that horrible day i think its time to follow up. First off i saw the hand surgeon who indeed said the only thing we can do right now is cortisone injections into my hands, since the diclofenac gel is not helping. Since it had been 2 weeks since the last occurance i decided lets wait. I mentioned finger splints and i got 3 of them. I now wear them at night and it seems to help somewhat. This is another reason i advocate. If i didn’t ask i wouldn’t have received the splints. You have to do your research before seeing any doctor. That was friday night.

Saturday morning i went for Acupuncture. I started on Acupuncture in April of 2018, i started every week moved to every other week and now im at every third week. My back still bother me from time to time but the 3 week intervals is pretty much keeping it in check. If you are thinking of trying or or you are skeptical please read my story here: https://psoriatic-arthritis.com/living/acupuncture/ If you have tried and it didn’t work you probably need to see another doctor. Anyway i mentioned my hand and she said that i probably hurt it carrying laptops, monitor or just too much typing and using the mouse. Yes guilty on all charges…. She took my arm placed her thumb just below my elbow and pressed and rubbed. I could feel the knot in there omigod it felt like there was a rock there. It hurt for a minute but as the muscle relaxed under her massage the pain in my fingers disappeared. Yes gone. Completely. This further solidified the need to write about Acupuncture for Psoriatic-Arthritis.com. Now when my finger are bothering me i rub the same spot and i feel better. I do still wear the ringsplints at night but its great to have options.

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Terrible Tuesday…..

Tuesday was absolutely horrible. Psoriatic Arthritis sucks.

Lets start at monday. I went to the office my fingers hurt a little. I put some pain cream on them and they felt a little better. Then came tuesday. they hurt. Pain cream. More cream. Pain pill. Then i put on my Arthritis glove just on the right hand. My middle and ring fingers were throbbing. All day long. I pushed my way through the day, trying to focus away from my hand but hey, i work on computers so yes that is my dominant hand stroking the mouse, click click, swipe swipe. It didn’t stop all day, i emailed my rheumy, he said next stop is the hand surgeon, i can get some cortisone shots, fair warning, it hurts like hell, i told him to sign me up, i now have an appointment on October 1st. Hurts like hell. Hmmm that sounds good, so it wont hurt as bad as it does now im thinking.

Well its friday now and the pain has gone down. Ill still see the surgeon, and possibly a hand therapist, as i found ring splints. https://www.arthritis.org/living-with-arthritis/pain-management/joint-protection/ring-splint.php

I’ll let you all know how i make out.

I was asked recently, Why do you volunteer?


This is a 2 part answer, and I would like to give a little background. First, in February 2007 I was then diagnosed with Psoriasis. I got a second opinion in 2009. It was around August or September. It was then that I googled Psoriasis and clicked on image search. Boy that scared the crap out of me, it was then that I read there is no cure, this is a lifetime thing, your life as been changed….

In that same search, I also saw ads for the National Psoriasis Foundation. Talk to a mentor, someone who has already been through what you are going through, and get a free book bag with a few items inside. Hmmm. A mentor I thought…. Yes, I would like that. I signed up, a mentor was assigned to me, and we talked, texted, emailed. I thought, wow this dude has had it for 20 years, he’s been covered with Psoriasis, has Psoriatic Arthritis. I’ve never been that bad, I felt better already. It also helped that he is in my state, is within a couple of years of my age! This is crazy.

About a year later they asked my mentor if he knew anyone who would be a good mentor, he gave my name. You see being in IT I know what to google, and I’m good at avoiding snake oils and separating fact from fiction, plus now I also have personal experience, almost 5 years of this uncomfortable disease. When the National Psoriasis Foundation called and asked I immediately said yes. I felt it was fair as I got a lot out of the program and felt I should give something back. Fair yes?

I then took the training and became a mentor. Some mentees were only there for the free book bag or whatever. I signed up and never replied to emails. Ok I understand, no problem, but then I got a couple of mentees thanking me for my help, telling me they felt better, this made me feel good. It is addictive actually. The feeling you get when someone says thanks, I feel better. Or thank you, you changed my life. Whoa. I can’t tell you how good that feels. The feeling never gets old. It feels awesome every time, and it doesn’t matter if you talk to someone for a minute or a month. You helped them, and that is what matters. 

This is now my life. If I’m not in the office I am wearing some kind of Psoriasis t-shirt and people will stop me and ask questions. I sometimes see doctors and tell them about the new medications coming out or other advances we have seen. Once while seeing my dermatologist I was joking, hurry doc I need my fix, give me that needle! He laughed and said he wished all patients were so willing to be on biologics. I asked for an explanation to which he said, people are afraid of the black box warnings (side effects, etc on the label). I handed him a couple of my business cards and said have them call me. 

Now if he feels that they need the biologic I can talk to them. Once again a month and a half after talking to someone I got a call, ‘DUDE! You changed my life! I went from 90% to almost clear!’ That totally made my day! 

Ugh!

Being chronically ill is quite like being on a rollercoaster, One minute you feel great full of energy and the next weak and drained, it usually doesnt go the other way around for me. I dunno how about you?

Last year was quite rough as friends and family passed away, i guess thats what happens when you get into your 50’s, but seeing people much younger go isnt easy.

I was hoping for a better year this year. Unfortunately its not working out that way… The place i am renting is up for sale so i need to find a new place to live. On top of that i started working at dressbarn in July of 2009, we later formed the ascena retail group i was then supporting dressbarn, now i support all the brands dressbarn, maurices, catherines, lane bryant, ann taylor, etc. This year we sold maurices and a decision was made to close dressbarn for good. This was a gut wrenching feeling. We are halfway through and i have no energy, i just hurt my back not 1 not 2 but 3 times within a month. What did i do you ask? I was walking, i was washing my hair, i was getting dressed in the morning. Nuts.

You see, on memorial day weekend, Sunday, i went to look at an apartment, it was ok, a bit small, and there was something i didnt care for. It was 30 minutes to get there, but because of parades and other road closures it too over 2 hours to get home. (i also took 30 minutes to grab some groceries) When i got home i put away the groceries went in the livingroom, walked back into the kitchen and i felt something tear or pop in my back. The rest of sunday and all day monday i was on muscle relaxers and vaping so i could sleep and relax. Literally all i did was lie on my heating pad and sleep. Went to work tuesday and tried to stay off my feet a bit. I was okay for 2 weeks, then on thursday morning i felt something in my back and boom i was in pain again. This time more muscle relaxers more heating pad (i have a battery powered one for the office) lots of rest and i was feeling better. One week later on friday morning i get up im walking into the kitchen as i raised my right foot to take a step i felt a pop. Ouch, there it goes again. I stood there a couple minutes moving slowly to assess the damage. Hmm not bad, just a little sore ill be careful. 20-30 minutes later i am washing my hair and i feel a riiiiiiiiiiiip. I scream. This really hurt, OMG. More pills more CBD, more heating pad. Ok so now i made an appointment, i dont know what the doc will be able to do but damn. I AM SOOOO tired of this.

So…. I will see the doctor on friday and get the doctors opinion, i do NOT want another epidural they are pretty much worthless.

I am really hoping the second half of this year gets better. Pray for me?

Its amazing

Its truly incredible how many people are out there that have chronic illnesses. Any day of the week i may share somethng with someone and *BOOM* they are fighting the same battles. One day im in the office and its warm outside and i see someone wearing a heavy coat. Turns out she too has Reynauds and two minutes later she also has Psoriatic Arthritis! Another day im talking about a trip im going on and i share that i have Psoriasis, migraines etc etc and so does she! Its crazy that if i dont say anything i would never know. The next day someone sent an email and asked if they could talk to me. Something personal. Their daughter has Psoriasis. This person was asking questions and to me it sounded like their dermatologist was more of a cosmetic dermatologist. My dermatologist is on another level. His office does everything. Yes they will do that cosmetic stuff but they do clinical trials and are fully versed in the latest and greatest medicines. For me after being on a biologic for 1.5 years he refused to believe the medicine wasnt clearing me at 100% and thats how he found my nickel allergy. I love my doctor! So i referred them to my dermatologist. Im praying that this helps the young lady.

By the way you can read more about my nickel story here

the power of CBD

Early February 2018 i became a medical marijuana patient. Yes THC will put me to sleep even though i was in tremendous pain. The different strengths etc at the dispensary were good and all, i learned how to take less THC more CBD during the day and then more 50/50 or higher THC at night. Its amazing.

After awhile i started thinking about this and realized, if this kills pain (and i originally decided to try this because the Tramadol stopped working) that i could probably replace other things as well. I started doing some research. Yes its an anti-inflammatory, so no more daily NSAIDS (aleve, etc). Its a muscle relaxer, no now im off 2 muscle relaxers as well. While i am at it, lets get off the nerve pain drug Gabapentin as well.

Results? Im down 20 pounds and i feel alot better. The only problem is the price. Medical Marijuana costs a small fortune and the insurance companies wont pay for it. So i started looking online. CBD is legal. I found Herbstrong =>> HerbStrong

I started taking the drops, i started at one drop and some vaping. Moved onto 2 drops etc. I currently take 5 drops in the morning 5 at night and vape a couple times during the day as needed. It just melts the pain away.

What do you think?

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.”

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?