Category: Spoonie ChroniceLife

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.

Working From Home

Unless you’ve been living under a rock, you pretty much know that americas workforce is working from home minus the essential people. Medical staff, grocery stores, truckers, police, fire, i hope im not missing anyone if i am please forgive me, the rest of the people are being laid off or simply being paid to sit at home to try to stop the spread of Covid-19.

While i know this will help a bit i know it wont completely stop it as there are too many idiots who think they wont get it, its a cold or a conspiracy thing.

I know this isnt typically what i write about but hey its on my mind why not.. Ok enough of the intro and onto the show.

Monday: I setup my laptop at the kitchen table and had a beautiful view of the street and the farm across the street. The sun was shining in and felt, oh so good. Then the sun was shining on the table and i had to put a towel there as it was blinding. Next close the blinds. Not sure when it happened but i started getting a headache maybe from the sun… Later as the sun was overhead i could open everything back up. This setup didn’t work as my kitchen chair is wooden and uncomfortable to sit on for 8 hours. I threw a pillow on it, that helped a little but now enough.

Tuesday: I decided to use my mobile computer cart. I disconnected the desktop and connected my work laptop. I sat on my comfortable Ikea poang. This was much better but i had to sit forward or reach for the keyboard and mouse. Also im using a 32″ TV as a monitor and it was seriously bothering my eyes.

Wednesday: I setup the cart in front of the couch. Much much better. I noted that i may have to visit the office and pickup a monitor this is still bothering my eyes. I am comfortable on the couch, i put the heating pad on my lower back and yes this is better. BOOM! My computer crashed and rebooted. Whats this? The screen looks better? AH! Dummy i said, i need to start the laptop while connected so it picks up the proper resolution. Gotchya wont do that again. 🙂

Thursday: Feeling a little lazy and tired today. Im not going to closeup the couchbed ill just sit at the edge and work. At lunch i fixed it because my back started really hurting trying to sit up that long. Damn. Everything else is good and my headache is finally starting to subside.

Friday: Oh yes. I think i figured this all out everything is working well. Its been a very long week though. My migraine is gone, im comfy on the couch, and to add to it work has quieted down a little.

Friday evening I had some groceries ordered from an online service i use and they cancelled. I was really looking forward to the fresh fruit and veggies i get, so i looked and my local grocery store had a spot open up for pickup. I placed my order quickly. Why was i waiting for pickup/delivery spots? Because I am #immunocompromised and my life counts. #HighRiskCovid19 so I dare not take chances.

So ive actually been trying to order groceries online. they dont have any open slots for pickup or delivery. so since i use heres a code if you want COOKWME-SY4GZN and code: the 1st save you 25$ (i think) and the 2nd 10$ the 2nd has more options. These links will save us both money. Please if you are going to check them out do us both a favor.


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?

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…

After last weekend…..

Since i didnt have and energy and was in so much pain last weekend i decided to call my Rheumatologist and get an appointment, as i hadnt seen him in awhile. I was greeted by the answering service informing me that the doctor was out on medical leave. I was stumped, what do i do? Thankfully i had an appointment with my PCP, so i asked her. She immediately sent me for xrays of my lower back and right knee as they are bothering me alot. I have been taking pain pills but we decided to try a different pain pill and some stronger stuff for those really bad days. Next week i shall be getting those results and contacting another rheumatologist, as well as possibly starting Physical Therapy. I hope my insurance is good enough that i can go 2 or 3 times a week without a ton of out of pocket costs. My PCP says i will learn exercises there that i will need to continue to practice for the rest of my life. Wow what a thought eh?