It was a smashing hit. Those men showed up and showed out. For the first time, I bought something from every single chef. Congratulations to everyone who contributed to making it a success.
Koskel Times (They official now with name and ting)
All the chefs for doing such a good job and keeping us fed
The winners – competition was fierce but you obviously had the edge
The volunteers – I know that the Koskel Crew couldn’t do it all without you
All the patrons/the limers/the nyammers (eaters) – old and new…thank you for your unwavering support to make this the event to look forward to every year in September
Koskel had branded cups, a backdrop for pictures and the team just made some upgrades in general that took the event up a couple notches. In my opinion, this year had the most people I’ve ever seen in attendance and things can only get better going forward.
For many months now I’ve felt like my disability is worsening. I still do everything I’ve always done but as far as I’m concerned, I’m moving slower. Sometimes, tasks are just not as easy and/or “seamless” as they used to be. Now, I will admit that I’m certainly not as active as I used to be. After the ‘vid, (early last year maybe?) I reached out to the personal trainer I had prior, and she told me that her schedule just didn’t allow her to continue training. I had to start my search for another. Long story short, I had 2 trainers who were with me for a month or two each and for some reason or other, they had to stop. I always try to do things at home on my own but that NEVER works out long term – NEVER. Last year I joined an online “MS Gym” (it’s actually targeted training exercises for MS patients) and started hot and heavy…started. At the beginning of this year, I actually signed up for an exercise research study that was targeted to African Americans with MS. I jumped at the chance to do it because I would be accountable to someone (which, alas, is what I need to stay on the exercise bandwagon) albeit for a specific length of time. I met with my coach weekly at first and then as the study progressed, time between meetings lengthened which was fine because I still had to track my progress etc. At the end, I promised her that I would continue…I did. For a while…at this time, I couldn’t tell you the last time I did any of those exercises. sigh. Now and again, I’ll do a workout I found online but I’m not consistent with it. The one thing that I have been doing consistently is climbing with my Catalyst crew, which is good but it’s not enough.
Anyway, I say all that to say that I didn’t know if my worsening state was related to my inactivity or the disease itself doing its thing and running its course. I scheduled an MRI – 2 actually, my brain and my cervical spine. The last time I’d done either was in 2021 so it was good timing and probably due anyway. I was happy to hear from Gilbert that there’d been no significant changes from the last one which is great news. The last time I’d felt that things were changing (back in 2015), we found that I actually had a new lesion at the base of my neck that could have explained what’d been happening (the disease doing its thing!). That’s great news but I really do need to start back working out consistently. I’m going back on the hunt for a personal trainer. How pathetic am I that I need to be accountable to someone to keep on track with working out?!? To be honest, there was a time that I didn’t enjoy going to the gym and such but that changed some years ago. If I could go by myself, we’d be having a different conversation right now, but I dare NOT do that because of the potential disaster that could be. GASP!!
Switching gears…Men Who Can Cook, the annual fundraiser thrown by Aunty P and crew is happening on Sunday. If you are in the Atlanta area, this is a beautiful, well-planned event that gets better every year. The event name went from “Men Who Think They Can Cook” to “Men Who Know They Can Cook” to definitively and just simply :-), “Men Who Can Cook” and it is true. All the chefs go all out, and all the food is delicious. Looking for something to do on Sunday? make your way there for a good time, scrumptious food and a fantastic cause!
I can say that definitively and will shout it from any rooftop. They say it takes a village to raise a child…well I couldn’t deal with and handle my situation without my village; my circles – inner, outer, family & friends and otherwise. I seriously don’t know what I would do without them. I’m pretty independent all things considered, I do what I need to do when i need to do it but there are times when MARTA, Lyft/Uber and all the other services I use just won’t cut it. Sometimes I feel bad asking for something but then when I actually voice the thought, I usually get a good bouf before we move on to the point of the conversation. Having people around you who care just makes things that much easier to deal with. I wish that I can remember telling everyone around me about my diagnosis but I have absolutely no recollection, and for the most part, I’m not alone. It was new territory for all of us and I had to figure things out as I went along and everyone was there with me for the ride. I wrote this paragraph last month sometime and 2 weekends ago, I was talking to QueenY and she used this exact phrase, “…we are all along for the ride.” Someone told me once that she was amazed that I was always everywhere with my friends and one of the things that I told her was that I didn’t think that they’d have it any other way. I feel comfortable saying that my friends will be along for the ride whether good or bad.
When I speak about my circles, I’m also referring to people whom I don’t even know on a personal basis. I am a loyal customer – I’ve been going to my barber since 95ish, the nail salon just as long, my eyebrow place? since the early 2000s. I have a friend who will stop anywhere when she needs to have something done – that’s not me; I stick with who I know will do a good job. Anyways, all of these people knew me as a “normal”, regular person and they’ve seen me progress from walking “funny” with no assistive devices, then using my canes, now using the walker and if I’m by myself (majority of the time), I’m in my scooter. While they all may not understand the disease itself, they all know that I have something and each time I’m in the various stores, they go out of their way to ensure my comfort and/or safety.
If I didn’t have these circles in my life, I cyah lie, dealing with all that this disease throws at me at times would be unbearable. Truth be told, there still are times when I’m bewildered at how positive I am handling everything because that just wasn’t my nature all along. I think it’s the positivity and my amiable manner that help those around me to stay positive and upbeat as well. If strangers or someone new is helping me, I tell them specifically what to do but I also instruct in a way to make them as comfortable as possible while smiling and joking when I can because I know that most times, it probably is more uncomfortable for them than whatever the situation at the point in time is for me. I was having a conversation with another disabled person the other day and they told me that I was so much better at it than they were. In response, I told them that I was lucky to have a good support system and that really goes a long way. I was saddened when I asked about their support system and the response was, “ha! almost no system at all.” I cannot even imagine what it must be like to navigate our lives with little or no support.
I love my circles – inner, outer, peripherals, toutebagai! If you are reading this and you know that you live in said circle – I appreciate you, not sure what I’d do without you. I love you!
I started back rock climbing. The ‘vid stopped it in 2020 and 2021 and I just didn’t have a way to get to the gym last year; using Lyft woulda be too much money even though it isn’t far. This year however, I discovered that it is on the MARTA line, so early March I decided to go back since I could take advantage of MARTA. Iehgolie, never in my wildest dreams would I have thought that I’d be taking public transportation to go a gym but here we are – every Wednesday without fail. Now, I haven’t actually climbed a wall yet because of the number of Catalyst volunteers and climbers who show up, but I’ve been using the Wellman (a “chair” on a pulley system that is suspended from the ceiling) so essentially, I pull myself up to the ceiling of the gym.
old picture but that’s me hanging out there
The first day back when I entered the gym, I was actually filled with excitement and felt like “I’d returned home”; it really felt good to be back. Luckily for me, all the other participants climb the walls so I’m the only one who uses the Wellman so it’s made my progress really easy to track. The first day, I didn’t even make it to the ceiling. The night I eventually made it all the way up, I took an hour and a half. Last week, I took 16 minutes the first time (it would have been a complete waste of time to NOT go again after only 16 minutes)! I completely shocked myself and was convinced that the volunteer who was belaying me (holding the rope on the ground) was helping and was also pulling – he wasn’t. WHAAT!! This activity really is rewarding…especially when you look up and see just how high you’ve gone. The only Wednesday I’ve missed so far, is one where I had to work late. I continue to enjoy it and every Wednesday I’m grateful that I never started climbing in my “normal” days because I would have been consumed with what I used to be able to do – it is what it is, most times I just can’t help it. The bus is picking me up at 6:00 this evening :-). Anyhoo, this now brings me to another point and a most mundane activity.
I yearn to be able to use a knife and fork!
Yup…it’s true. Lil side story…when I came to this country, I was appalled at how many people didn’t (or didn’t know how to?) use a knife and fork properly. Most people I saw held the fork like they were stabbing whatever was in their plate and it completely baffled me. So much so that once I went on a date with an American and saw him cutting his meat and I blurted out, “Oh wow! you know how to use a knife and fork!” Funny tho, I observed that he’d cut whatever but then put the knife down and switch the fork to the other hand to actually eat but as usual I digress!
I yearn for the ability to use a knife and fork!
When I go out to eat, I generally order something that I can easily eat with just a fork. If I can’t and I’m alone, I ask the waiter for whatever to be cut up when I place my order and I make sure to show them my poc hand. If I’m with friends, they know what will be coming once I get my food. Truth be told, it annoys me to no end that I cannot do it – it’s not even a task that I can do slowly – and usually if I see someone using their knife and fork, I know that I look at them wistfully for a second or two too long. It’s not as far as being depressing or frustrating but if I had one day to be disability-free, everything I ate that day would need to be cut into bite-sized pieces and I’d be using both utensils to eat at all meals. Go figure…it’s the little things!
Anyway, I gone so…’hol it down till next time. Oh. Before I go…I know that no one will be surprised to read that 2 days after I got my supply of pills from Mark Cuban’s pharmacy, my insurance approved the prescription, and the pharmacy started contacting me. “Please contact us urgently and as soon as possible to schedule your medication shipment” steups! I ignored them for a few days and then eventually told them that I wouldn’t need more pills till June so stop calling me! UGH!!
I’ve had experiences and phone calls that have tested my patience, pissed me off, bewildered and amazed me in the past week. I have my medication but just to be clear, up to now I haven’t gotten the authorization from the insurance company, so of course it wasn’t filled by my regular pharmacy. In fact, I learned on Friday that the authorization was denied again on Wednesday 29th. I am a member of a Facebook group that consists of women who’ve been diagnosed with MS and sometime last weekend I was scrolling thru and reading one or two posts. I came across one where the person was saying that her insurance denied the same medication and she used Mark Cuban’s drug company and got it. I remembered watching a Daily Show episode where Cuban was the guest and he and Trevor Noah talked about this website that he’d either just started or was about to launch, that offered drugs at little cost to consumers. At the time as interesting as it seemed, I had no use/need for it so, of course I never looked into it. Fast forward to last weekend, I looked it up, saw that the drug was available and read thru the requirements to get it.
Monday started with conversations with my doctor’s office to write a prescription to submit to the site so that I could get my pills from them. On Tuesday I should have known to set my expectation bar very low when it took 4 tries to finally get Freddy on the phone from the patient advocacy group at work. By the time Freddy answered, I was done and laughing to myself at the ridiculousness of the situation – 4tries!! Anyway, Freddy was very helpful, took all my info, the drug info, all the details; I couldn’t ask for a more thorough associate. At the end, he told me that my information was submitted to the advocate team and someone will contact me in 48 hours – not sure when the 48hr clock starts cuz I’m still waiting for a call. On Wednesday, I ordered the pills from Cuban’s site, Cost Plus Drugs. Thursday, I spoke to a rep at my pharmacy, the most helpful person there, who told me that the authorization was denied again the day before and the reason was that my doctor hadn’t sent something they’d requested. Sigh! Later that day, Gilbert’s MA left me a message that said, “Stacey, I’ve given them everything they asked for, they know that you’ve been on this for 12 years and need it. I don’t know what else they want.” Friday, I got an email that the medication had been shipped from Cost Plus Drugs and was scheduled to be delivered on Monday.
By Wednesday or Thursday, I’d started doing a deeper dive into Mark Cuban’s site reading their FAQs and other articles etc. that I found online. What he offers is incredible and EVERYBODY should look into the site to determine if it is a viable option for them. The company was started because “every American should have access to safe, affordable medicines” and that is exactly what they appear to be offering. Now, there is a limited number of drugs available, but it appears that they update and add regularly. You can search for your medicine or you have the option to drill down by “ailment” to find what you need. The first time I accessed, I just searched by drug name but as I started exploring the site, I drilled down by MS and saw that there are 3 drugs available. That’s where you see the costs and the savings for each – and this is where they can blow your mind:
For a 30-day supply: The retail price of my drug: $1,394.30 Cost Plus price: $11.40 The retail price of MS drug#3: $13,067.14 Cost Plus price: $293.03
Now I always knew that it was all about the money (hell, we all know that and I said so myself in my last post) but how the hell do these people sleep at night?!? How do you in good conscience do this to people??? And guess what? There is actually a 15% markup added to the cost of each drug on Cost Plus- WHAT? It is absolute madness…everybody who can, needs to start using this website. And they don’t even take all insurance right now; they only accept a few plans and mine isn’t one. I had to pay that whopping $53 out of my own pocket. I took my last pill on Saturday and while the feeling of being out of sorts and lethargy eased up, my movements have been quite laboured. I got my package yesterday, took a pill and I’m back on my regular schedule today. I also got a 90-day supply so I’m not even stressing over whatevertheass my insurance company and pharmacy have to say right about now. Big Pharma – it’s just a whole big racket taking advantage of ordinary folk who are just trying to survive!
