Author: aWildAndFlakyGuy

advocacy, conditions, thoughts

I made this decision in 2011, and i now have more conditions. Do i quit? NO! I push on and help more people with more issues as i learn them myself. I have to say Thank you for the awesome words Tiffany.

After reposting this on my facebook page i was thinking about it. My conditions….

Chronic Migraines

I can remember migraines as far back as i can remember. I think i was 3 or 4, mom gave me tylenol. At some point a doctor said ‘sinus headaches’ I saw another doc in my 20’s who said classic migraines. I looked it up. Yes. He was afraid to give me meds as i have some bad allergies. Told me to goto the hospital, and as a result i ate extra strength tylenol for years. Sometimes every 2 hours for weeks. This can seriously damage your liver, i had no idea. I have since got them in check.

Asthma

I really dont know how long ive had it for but i can remember having a couple attacks in the 80’s/90’s and i had no idea what was happening, or what it was. I started jogging in my early 40’s and got winded. Told the doc and well it was obvious when i started hearing the symptoms….

Psoriasis

Two major disasters happened in my life in 2005. By 2006 i broke out, tried everything. Saw a derm and was diagnosed in 2007.

Psoriatic Arthritis

Starting in 2009/10 i would wake up in pain. I blamed the dog as he always fell on my and pushed up against me when he was sleeping. If you have never experienced this a 70 lb pittie is like a rock. One day in 2012 i looked at my fingers to see if it was time to cut my nails. My fingers are crooked. I went to a Rheumy he said ah! ya have a little Osteo, relax. I walked out the door and found another Rheumy. I was right, Psoriatic Arthritis. The 1st doc had run blood tests, no xrays, nothing, quack….

Raynauds

Routine visit to see my Rheumy, its 90+F outside. Cooler than 70 inside (im pretty sure) He starts the exam and sees my toes. Do your toes always turn colors like that? Um yes? Raynauds. Thx.’

Nickel Allergy

I was on Stelara for about 1.5 years and my knuckles arent clearing on my right hand. Doc asks for an allergy test. I quit eating oatmeal every day and i clear up 100%

Brain Aneursym

Seeing my neurologist. I had an MRI, now he asks for an MRA. Guess whose not right in the head? Yea its a small one, we just have to keep an eye on it. When they first saw it my blood pressure was high due to no longer eating oatmeal everyday. Now its 4 BP pills a day. Thx. Also cholesterol went through the roof so onto statins.

Massive Muscle Spasms

Yes. onto statins and now massive spasms.

3 Herniated discs

Quite common with Psoriatic Arthritis, these are also great for muscle spasms as well as numbness/tingling, i haven’t felt my thigh in years.

Sleep Apnea

My ex girlfriend told me i had apnea. When we split i went for a test. Guess who has severe sleep apnea. Yes this train wreck right here…

Tactile Allodynia

Not diagnosed by a doctor yet but i see the symptoms. Its me 100% i need to move to a warm climate and join a blind nudist colony. Anybody sees this body they’re gonna faint or run.

Fibromyalgia

Also not diagnosed yet but ill bet my last dollar, and it seems to be associated with…. Yes you guessed it Allodynia.

so even with this laundry list thus far (there maybe things i dont know or dont think about like high blood pressure high cholesterol etc) one thing holds true, and thats what was said for the 2020 HealthEVoices virtual conference, and that is Advocacy doesnt stop!

Another thought….

So after writing about Tactile Allodynia i was thinking about how i could never wear socks to bed….. Yep! In the past i had thought that my socks were too tight or whatever but no. Even those stupid things that you get in a hospital will bother me.

last week i was starting to write down the things that have happened so i have a list for the doctor. My fingertip felt like it was burned. I scratched my head and it hurt. It felt like someone had hit me with a bat. It was sooo sore.

Last night i was cooking dinner when i jumped backwards because i felt something running up my leg. No nothing there. Later i went to bed i couldnt fall asleep rolled over and the sheets ran over my big toe. I literally jumped 3 feet in the air. It felt like i just dragged something over burnt skin.

Fun fun. Every day its something new. I guess this keeps life interesting. You know like your blindfolded playing darts, something else will break but who the hell knows what and where.

Light Bright Migrainy Day

So i woke as normal at 530 this morning and i felt a little off. Pressure on my right temple, then im sneezing. Blow my nose like 50 times. Hmmm i left the air purifier off because i had the windows open the last 2 days, but had to turn the a/c on yesterday afternoon…. That could be it, yea yea thats it…

Coffee, more runny nose etc. Pressure is building, now its 7am. Aura sets in. Im looking around the room and yea i turn my head and i see trails. Wonderful. So i throw a couple eggs in a pan put on another cup of coffee and pop a fioricet. Just as im starting to feel nauseous i eat an egg sandwich, and start on that second cup of coffee.. I drink strong coffee. As dark as i can get it.

Now the pressure sets in, like someone pushing on my head, crushing it. Please medicine, please work for me.

Its been an hour, ive eaten and i can still taste the fioricet. Heads gettng worse. I grab a medicated honey lozenge (weed thank you etain these are awesome!), pop on my cpap mask and head back to bed.

Two hours later im back up. At first no pain. Hmmm maybe….. I move my head. ooops no its still there. damn. Get up, grab another cup of coffee. Munch on a couple cashews.

Damn! Its noon. Ok ill grab a piece of cheese as thats good for the nausea. Ok shower. Hmmm ill go outside and sit with the sun on my back for a few. Collect some D3…. Back inside. Back out…

Back in. buttered noodles for dinner i can’t do much more. More coffee more fioricet, and eventually more weed. Now its 10pm. The day is finally over and i pray this is gone tomorrow…

Allodynia

Yes you read that right. Over the past several years getting very bad at the moment i cant stand wearing a necklace and the waistband on my pants/underwear, my watch after a couple hours drives me nuts. It hurts! Since my daughter has said she wouldn’t be surprised if i had fibromyalgia i was talking to a friend and said hey does this sound familiar? She pointed me here: https://www.verywellhealth.com/allodynia-definition-and-types-fibromyalgia-715929 yes its very much Tactile allodynia.

The only issue i have is that i must wear the necklace. Well when im out anyway. You see its a medic alert necklace, without it im about good as dead if i have an accident as im allergic to Morphine, penicillin, aspirin and nickel so far. Ive checked the chain theres no nickel in it so i couldnt figure out why it hurts so much. Nickel is in the button on your jeans and literally burns when it touches my skin. For years ive either bought pants where the button is sewn on or painted the back of the snap on my jeans with clear nail polish. Simply wearing a tshirt thats tucked in will help but thats not always wanted.

Ill tell you, having a broken immune system can be exciting you are constantly getting new issues, learning things you never knew existed!

Asthma sucks

So i saw my PCP on friday. I haven’t been there in quite awhile, so i explained how this year it has been hard to breathe. Last year i carried boxes up the hill while moving in and i was fine. It was hot but i was ok. This year however i walk to the mailbox and i’m dying. I need my inhaler. I had tried Symbicort over the winter and it wasn’t helping. I did however have some advair so i’ve been using that in the mornings and its been, ok. Don’t get me wrong i walk to the mailbox and i still cant breathe but just sitting here it doesn’t feel like a weight on my chest like it had.

She decided to try me on Singulair. First dose on friday. Saturday i was lost. Dazed and confused. No energy and i had planned on doing about 100 things. Nope no can do. I lied there watching YouTube all day. Went outside sat in the yard, then back for more youtube. Was it really the Singulair? Or had ai taken too much medical marijuana because my back was bothering me?

Here it is sunday evening and i think i am feeling better. My chest is still a little heavy but the information with the medicine says it doesn’t work immediately so….. also, I didn’t need the weed today. We will see.

what a week its been

so.. the week started of just fine, then tuesday night i finish work prepare dinner but not cook it. have happy hour with my team, then i have 20 minutes before a meeting for my volunteer stuff. i cook and jump on the pc. turn off the camera so i may eat. food was awesome conversation great, i love these people for what we do. fighting for patients rights, changing insurance laws, you know, fun stuff. while on the call i get a twitter dm from someone who has been wanting to get started with the national psoriasis foundation for awhile. we chat for awhile, then im so tired i sit down and fall asleep. the time? 7.55pm. at 2.30am i awake, goto the bathroom and lie back down, cant sleep. toss, turn etc.5am? hell i have to get up in 20 so yes ill make coffee. as im getting coffee i get my mornng round of meds and….. realize i forgot last nights. unfortunately i take 4 blood pressure pills a day. 2 morning and 2 at night. i take everything at 5….

ive done this a couple times in the past, rushing out of the house for a 6am appointment an hour away, ive never forgotten my evening meds. doesnt matter, im affected the same way, my head in the clouds, spinning no energy, cant think straight. i push my way through. then i lay there until after 11pm cant fall asleep. i thought all was well when i woke at 520….

i fall asleep thursday night at about 10, then im up at 2.12. bathroom, yes ok. i lay there, i lay there, my head starts pounding, yes now its headache time. fioricet and coffee time. That sort of held my headache at bay, it didn’t get worse, but it didnt get better either.

so friday morning i know this has to end, i placed an order at the dispensary and planed for a noon pickup. i was so tired i couldve fallen asleep but i made it there and back, and then dozed off for about 60-90 minutes. friday night i triple checked that i took my meds, then popped a capsule and took some tincture. went out like a light until 4am.

Now here it is sunday and im starting to feel more normal. Its been rough, how was your week?

Everyone has a story

Since becoming an advocate i have participated in many events. Most where there are other psoriatic patients, however i have participated in advisory board panels and it seems that everytime i do the ones putting on the event share their stories as well. They may not have Psoriasis or Psoriatic Arthritis, like i do, however they either have a family member with it or someone is battling another auto-immune issue or mental health etc. It never fails, everyone shares their stories and that opens the floor before we start sharing our personal experiences. Ive done this many times but this last meeting really made me think. Either everyone in the world is affected by something either through themselves or family, or because of the illnesses in their family they got into the fields they are in, helping patients. This kept going through my head all through the meeting, and after. I keep thinking about it because i believe its the former.

Think about it. Ill bet you know someone with some form of health issues. It could be depression, cancer, alzheimer’s, mobility issues etc. Yes everyone has been touched by something.

So… The next time you meet someone remember they too probably have a story to tell, they too maybe going through something as well.

Its spring, i think…..

So we finally had some good weather, 70-80F. No pain, unless i stand for a long time, all seems to be going well. I went through a bunch of things, decided to do some spring cleaning there were 2 boxes to store, 2 to give away so far, nice. I carried them to the garage, put the air conditioner in the window, then puttered around the house a bit more, and helped my landlord who lives next door (we bolted the power line back to the side of his house) . Some truck was driving down the street you know the ones with the canvas top? He had the top, with the metal bar UP. Ripped the power and cable lines and the power meter right off the house. This happened Thursday at 2:03 PM. I know the time because i jumped on a WebEX meeting, said hello and my screen went blank.

Utility company was out here and power was back on sometime between 4 and 5. Incredible they had a new line up meter mounted and power restored. I was already on another call, this one by phone, as far as internet? We are scheduled for Saturday…. Hence the cleaning etc no internet no life right? LOL

Ok internet was restored just after 4pm nice. i decided at that point to get online and rest a bit.

I fell asleep sometime just after 10pm. I woke at 330am. I had to goto the bathroom but it was 4:19 before i got off the couch. Thats where i had fallen asleep and now my back hurts like hell. Knowing full well theres no way i can lie back down i put the coffee on, did my business then slathered some CBD cream on my back.

Had coffee, more coffee and bacon and eggs, and guess what? Pain is gone. I swear i love this stuff. I was going to take a gelcap or some tincture but the cream did it. Ive tried a number of other brands that did nothing for me but this ones gold. Please check it out here if you are interested. http://bit.ly/2BRqYDr

Full disclaimer that is my affiliate link. i will get a small percentage of your purchase if you buy something today. I would not send you there if i didnt fully believe in the product or if it didnt work for me.

So… How is your spring going?

A long time ago…

When i was a teen i wasn’t interested in working on cars. I wasnt interested in anything but girls and computers. Since i wasnt turning a wrench, wasnt building houses, chopping wood etc i didnt have many of the calluses that many men my age had. All the ladies told me how soft my hands were, yes i was a geek, always on the computer.

In 2005 i was 39 and I was starting to get Psoriasis. In 2007 my hands looked like they had an argument with a cheese grater, and lost. Below is a pic when it was about 1000 times better.

My hands were destroyed. My life changed forever. I thought i would never be the same.

I have since met many other patients advocates i am now clear but i hadnt thought of this until this last April. I was at Healthevoices when another Psoriasis advocate was walking by and we held hands for a second. She then told me i had the softest hands.

She made my day, my month, my year.

Even though Psoriasis has taken so much from me, hurt me so bad, i finally feel like i am winning this battle.

Most painful year of my life….

While its true ive encountered some bad times in my life, but this past winter has beyond a doubt been the most painful year. Why? I dont know, it wasnt cold at all. It hardly snowed. So why?

I understand when it gets really cold and dry in the winter that my joints hurt, but it didnt get that cold. I dont think it was all so dry, but my right hand hurt throughout the winter. It started early on, in the winter. My fingers were throbbing. I put on my thermoskin gloves. Then another day i covered my hand with diclofenac gel. An hour later i did it again, then put the gloves back on. On top of this i took pain pills without knowing that i wasnt supposed to with the gel. Luckily it didnt hurt me but the pain never went away.