Author: aWildAndFlakyGuy

UGH! – stop it now!

The news is full of everything about corona/covid-19. Sooooooo many people who have Psoriasis/Psoriatic Arthritis and are on biologics keep asking, ‘should i stay on my meds?’

My answer… my thoughts and i heard this from a doctor.

My thoughts? Yes definitely. I have both PsO and PsA. Without the medicine it attacks the joints and i can plan on an early retirement and being unable to walk. No thanks. Treat it naturally? Im not taking chances i like to walk.

What a doctor told me. On a scale of 1 -10 10 being the best immune system in the world, superhuman if you will, and 1 being none (think of ‘the boy in the plastic bubble’ i liked that movie) a normal persons immune system is a 5. Being Psoriatic means im at an 8 or a 9. So taking treatment only knocks it down to a 6 or a 7, my immune system is so superior. Ive had the flu, for a couple hours. Ive had colds that didnt last a day. I cut myself and its gone the next day.

So… Why would i stop my medication? I wont willingly.

What will i do? I will eat right, wash my hands properly, and take my vitamins as i always do, and in addition Ill be careful, and self quarantine.

Please be safe dont shake hands touch your face and sneeze on people. Dont travel unless absolutely necessary. Dont have house parties. Just plain dont be stupid.

A quick update

I have started writing for Health-Union.com. I will be posting both on PlaquePsoriasis.com and Psoriatic-Arthritis.com. Ive written 2 articles so far and you can find them here https://psoriatic-arthritis.com/author/aWildandFlakyGuy/ I plan to update my blog and when i write for the other sites, ill be linking to them so you wont miss anything, plus i want to update my blog to show where i can be found what im doing etc. Unfortunately i had to move in August and just after finding out the company i started here 10 years ago , and it will be going out of business. Its extremely depressing watching your friends (actually these people are more like family) leaving constantly for the last 6 months.

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.

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.”