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    • #35292
      Jen Cueva

      Unless you live with a chronic illness or care for someone with one, it isn’t easy to wrap your head around how much time it takes to manage it daily. There are endless appointments, calls, tests, procedures, and hospitalizations.

      What makes your health a full-time job? What aspect of your PH takes the most time to manage? Any tips on shortening that time?

    • #35297
      Colleen Steele

      Oh boy, this is a topic that really hits home for me @jenc.

      When Cullen had PH I worked full-time, still attended Aidan’s sports practices and games, maintained the house, did the shopping, etc. etc., and of course, took care of Cullen.

      When I look back on those 6 years I don’t know how I did it! The year Cullen was listed I think I was reaching my breaking point. Started experiencing melt downs and feeling more and more overwhelmed.

      I never really thought about it in this way until I read your topic…I was working 2 full-time jobs!

      I top advice that comes to mind is the value of routine. A day in the life of PH can be unpredictable but when you can, keep a routine. Block out certain parts of the day for the things that must get done such as meals, housework, and when you can even schedule medical appointments during a time that works best for both patient and caregiver.

      The other things is use your lunch hour for you!! If I could go back in time that is what I would do differently. I almost always used my lunch hour to order prescriptions, schedule appointments or pay bills. That is not a “break” in any sense of the word!

      • #35305
        Jen Cueva

        Wow, @colleensteele, I applaud you because I don’t know how you did all of that either. All I can say is you must be supermom. But then I think about it and know we tend to do what is needed and don’t think about what it’s doing and entails until later.

        There have been times when I’ve needed Manny to be my full-time caregiver, and he also was trying to work and take care of KK and any pets at the time. Thankfully, this has only been periods and not all of the time. But he pushed through and, like you, never took time for himself, even when I suggested it when I napped or mom or someone was visiting.

        I love your tip about the routine and making things work to fit the patient’s needs and the caregiver’s. Working through lunch is common, I have noticed between patients and caregivers.

        Manny still calls me every day from work to check on me. I usually text him, so he doesn’t worry if I have a call or appointment.

        Although Cullen is older and starting to take over much of his care, you’re still doing some caregiving for him and your husband. Are you now taking those lunch breaks or Starbuck drives for yourself?

    • #35306
      Jen Cueva

      For me, I think it’s the calls that seem to take much of my time. Some weeks I am done about halfway through and decide to take breaks from calling insurance or specialty pharmacies, etc., and start the following week again.

      It can be overwhelming between the calls, filling my med box each week, and appointments. But I try to have a system where I specify days for specific tasks now. But if my body doesn’t cooperate- which can often be, this goes out the window, and I’m backed up.

      I’ve been inspired by a colleague to start using my Google Calendar more and color-code my appointments and tasks. But being a bit old-fashioned, I prefer my paper desk calendar and notes. I want to work towards the Google one because I can have it on my phone, Ipad, etc. when I am not at home and need to schedule something.

      PLanning and finding a system to keep track of everything is my best suggestion. Try new things and see what works best for you.

      I was overly organized pre-PH; now, I’ve let that fall through the cracks and want to get things more organized. It helps in many areas of life.

    • #35403
      Jen Cueva

      I thought this topic would get some more feedback. We learn from one another. So, why do you believe PH is a full-time job, my PHriends?

      , @dawnt, @carol-alexander, @nancy-mcsweeney, @auntlizzie, @valerie, and others.

    • #35405
      Carol Volckmann

      I retired early from my career – I was 55 and ready for being youbg enough to now have a life of traveling, sailing long trips, skiing, volunteering, just enjoying all the adventures Dick and I wanted to embark on and not having time restraints.

      A couple years later was diagnosed with PAH caused by Scleroderma. I was no longer retired! We both now had a new career – managers of these chronic lifetime diseases! We became partners in this new corporate disease world.

      At first it was totally overwhelming, scary. These new treatments were daunting, dealing with insurance companies, special pharmacies, organizing appointments and learning to accept what I was no longer able to do and finding ways to adapt – had to – this was life threatening!

      It took me a couple of years to figure out I could use my organization skills to prioritize making sure I took time to have some vacation moments. Looking ahead on the calendar and saying OK next week we have nothing on the calendar so … we will take next week off – no appointments, get all my meds ready, leave the follow ups with insurance to next week and take time for ourselves.

      Like any full time job though you try to free up some time, crisis happen and you have to deal with it – emergency trips, catch the flu, meds don’t arrive on time, Dick become sick … so now I need to be the caretaker.

      Dealing with lifetime chronic disease does become a full time job. As I read others in this forum I have learned how others have not only coped with their PH and other medical issues along with PH, each person, each caregiver has adapted their lives to live their lives, to enjoy the simple pleasures, to live meaningful lives and support those when there is a need.

      When you get down to the nitty gritty what’s the alternative? Life for both of us is precious. We will enjoy each and every moment we have with each other and fill it with appreciation, laughter and love ❤.

      • #35423
        Jen Cueva

        Wow, @cdvol3gmail-com, your response to this one has me feeling warm and fuzzy. I love how you talk about you and Dick’s “partners in this new corporate disease world.”

        I must say, I’ve not thought of it like that, but so true. You have the skills you utilized in business for many years that help you organize and plan well. Your life working in sailing and the water, in general, gives you the coping skills to “ride the waves,” as I call it with PH and scleroderma. Your navigation skills are inspiring and show through your resilient nature and compassion.

        Your vacation time is on point; I may write a column and interview you about these thoughts and how you address things. Would you like to do that? If so, email me, and we will plan to work on this together. Many can learn from you, my PHriend.

        Your closing paragraph seals the deal- life is so precious—hugs and love to you and Dick.

    • #35411

      Hi @jenc. The first 4 years or so after my diagnosis of ph, limited scleroderma, and the other issues they found during the search for a diagnosis felt like more than a full time job. So many appointments, tests, getting set up on medications, fine tuning medications, getting used to the changes in my life, let alone the multiple trips to Johns Hopkins. It was absolutely exhausting, but I guess in the beginning it was also sort of good to be so busy with it all because it kept me from thinking too much about all the what-ifs and changes in my life – except when I was alone, then my mind was constantly working overtime.

      With my medications working well, and a good rhc result last year, appointments and tests have slowed down nicely. Still a lot to keep track of, but the thing that I think still surprises me is how much I have to plan doing anything away from the house due to the oxygen. I know how many tanks I need when I work in office, go to the farm, do shopping, etc.  I also need to plan to leave myself enough time to refill the tanks, since I only have 5 tanks.  It’s very hard to be spontaneous about going anywhere/doing anything where I’ll need my tanks. I’m getting better at thinking ahead since I can’t just go without oxygen, but it’s frustrating.

      • #35427
        Jen Cueva

        Hi @dawnt, great to see you respond again and share your experience. I can relate that earlier in my diagnosis, it was much busier. Throughout my long PH journey, it waxes and wanes as far as how busy I am with appointments. But a stable period almost feels like I’m “normal” to some extent. Does that make sense?

        It sounds like you have your routine down now and can do the usual plans without too much shift unless PH or scleroderma, shines through and causes havoc. How long has it been now since your PH diagnosis>? I forget so much nowadays.

        I can also relate to your statement about being spontaneous. It is challenging. I try and have a backup battery for my POC charged at all times. I forget that too, but I’m pretty good with that for the most part. “It’s very hard to be spontaneous about going anywhere/doing anything where I’ll need my tanks. I’m getting better at thinking ahead since I can’t just go without oxygen, but it’s frustrating.

        Take care, and know we always love hearing from you – your shares offer great resources for others.

        • #35457

          It’s hard to believe, @jenc, but it’s a little over 4 years since my ph diagnosis. And between 4-5 years prior to that in getting to a diagnosis. I think I was in such a whirlwind throughout the period of being diagnosed, getting medications, trips to Baltimore for my ph doctor, a new doctor for the limited scleroderma, test upon test, it was exhausting. Now that things have calmed down some, I’m handling things better I think. Sometimes I accept it all better than other times, but it is what it is. I’m really working on not letting my medical issues take more from me than what I have to. Remember that even though I need to do things differently or slower than before, due to the breathing etc., the important thing is to still do as much as I want to.

        • #35460
          Jen Cueva

          Wow, @dawnt, yeah, isn’t it crazy how time flies once you get the diagnosis? I will be 18 years with PH in February. That’s surreal to me. I was telling someone that yesterday evening. Also, that life with PH is challenging but can be enjoyable with some adjustments.

          It can be busy, and some days, like you, I don’t do as well as I think I can, mentally and emotionally, but that’s OK, too. We all have those days and need a little help.

          I loved when you said, “I’m really working on not letting my medical issues take more from me than what I have to. “– that’s a great tip for us all.

          Do you have any plans for the weekend? Will you be with the horses? I am assuming your warmer weather has arrived, which also offers a boost. I’m sending you hugs from San Diego.

        • #35462

          I’ll be at the farm tomorrow, although it’s supposed to rain. It’s been warm, and very humid here lately, which I never liked even before ph!  I just pace myself. We desperately need the rain, so I can’t complain about that. The horses need some grass growing in the pastures!!  They get hay as well, but the pastures are pretty well chewed off.  Sundays I do (or don’t do…) whatever I want.

          Have a great rest of  your day, Jen, and a wonderful weekend.  Hugs back to San Diego as well!

        • #35464
          Jen Cueva

          Aww, yeah, we need the rain too, and Sunday, it said 25%, which is fine with me. I love how you describe your Sundays; my dad says the same, LOL.

          Enjoy your time at the farm, and please take breaks. I don’t like humidity either hence why I am in SD.

          We are having a relaxing weekend after being busy with my niece last weekend. Thanks for the hugs, my friend; take care of yourself. Great to see you in the forums.

    • #35416

      I thank you all for the reminder that my husband has a full time job of dealing with the disease. These days I feel like my full time job is practicing patience and deep breathing hahaha. I am very blessed that my husband is still pretty independent and capable and I am certainly blessed to have him!!! but I think he forgets that sometimes I can be the one struggling on a particular day and I have had to learn to be direct and not just suck it up .. Communication has been vital for us both through this process, that, and remembering that we are both human when we fail at the communication part hahaha

      Advice: 1 set auto alarms for medications (especially ones that have to be taken at certain intervals) we have them on both of our phones so that I can double check on him if he’s in the middle of something. (we do the same for dr apts. with a day advance notification reminder) 2 pace yourself, when you do travel, plan a down day in-between activities, (my husband argued with me on this last trip and I told him if your up to something I will find you activities for the day. we ended up walking the historic downtown and he napped most of the day while I read by the pool and kids went swimming.)  3 if you can afford it get the portable oxygen concentrator and an extended battery, it’s so nice not to have to cart around big tanks everywhere!  4 research your destinations and know the elevations this will have a large impact on your vacation! 5 MAKE MEMORIES!!! Sending you all love and light PHriends!

      • #35429
        Jen Cueva

        Hi @kygon, I love that you share about communication. At times we don’t communicate our needs as we should to our caregivers. I know I’m guilty of that so often. Manny knows what I need at times much sooner than I voice them. But I know it also affects him physically, emotionally, and mentally.

        Without such loving and supportive caregivers, I don’t know what we would do. But caregivers go through the ups and downs right beside us, and we often do that part. It’s never easy to watch your loved one suffer or struggle to breathe.

        I also keep my alarms for medications on my cell phone. Manny knows the time. Although he doesn’t have his set, too, he reminds me if we are out, and he knows it’s about that time.

        Planning and taking those down days after your adventures together is a great reminder, too. It’s OK to have those days. I had two days and ordered grocery delivery after my nice left, and I was exhausted. I stayed in my PJs for the first 2 days and slept a bit later than usual. On the first day, Manny was adamant that I rested after we dropped her off, although I told him I would love to float in a tube in the bay downtown. He knew I needed rest. He was right; don’t tell him, but I crashed when we got home, and I changed into my PJs.

        Yes, making memories is what I always tell. y friends and family, we are doing. Life is too short and precious not to enjoy and have some fun.

        The extra POC battery saves my butt many times. Thanks for adding that in.

        You’re a kick-butt caregiver, wife, mom, and friend. Never feel unappreciated. Bryan loves and appreciates you even when he doesn’t seem to like your suggestions of rest, etc.

        I’m sending you much love, hugs, and light, my PHriend.

    • #35422
      Carol Volckmann

      Hello ky, I applaud you! Honest and open commuication is crucial in any relationship. When talking about dealing with chronic diseases such as PH it is even more important as it IS a full time job for the person who has the disease as well as the partner, caregiver.

      My husband is my caregiver and helping me through all the can dos, cannit dos, appointments, meds is a full time commitment.

      It was difficult in the beginning of my diagnosis for him to admit the emotional roller coaster he was going through. Always trying to be the strong one, saying “… hey, this is what I do …”

      It is emotionally and physically exhausting for him at times. Like you and your husband we have learned to talk about what he, as caretaker, is going through. There are still times I need to let him know he needs a break.

      I have learned I have to take responsibility for many of the things he helps me with. One of my medications involves mixing seven cassetts of remodulin for my IV hickman line. He is my mixer, but I had to let him know, I need to do it myself also so when he isn’t feeling well, I am able to do it. It would be easy just to depend on him, but that is not fair to let it all fall on his shoulders.

      Your post is such an important lesson for all caregivers and patients- thank you!

      • #35430
        Jen Cueva

        Thanks so much, @cdvol3gmail-com, for your thoughtful post to @kygon.

        Your point about taking responsibility to care for many things that Dick helps you with is essential. I take responsibility for ordering, filling my meds, scheduling my appointments, and recently, going to some appointments without him. I love to have him there but also know he has work, so some he misses, not my PH appointments.

        I love this closing- “Your post is such an important lesson for all caregivers and patients- thank you!”

        Take care, my PHriend; love and hugs are coming your way.

    • #35440
      Gayle Ward

      This is a great topic. Scheduling appointments, ordering g drugs, scheduling tests all takes time and patience.  I’ve been dealing with chronic illness for 11 years. I’m not complaining because I see myself as very lucky. The one thing I did was try to organized my tests and appointments all in the same month every three months. I have now gotten access to order my drugs on line and order them all on the same day. This has helped me get my things done with time left to focus on the joys of life.

      Chronic illness is tough but surely beats the alternative. My organizational plan doesn’t always work depending on how I’m doing but when it does it helps me feel more in control.

      I am so impressed with the PH Community and the support they offer

      warm wishes to you all

      • #35444
        Colleen Steele

        @gward I’ve tried to cram as much as I can into one day before but not into a month. If possible that is a nice idea. I like the concept of basically getting it all done in a clump then “getting on with your life”. Thank you for sharing your scheduling goals!

      • #35448
        Jen Cueva

        Hi @gward, like you, I find this all time-consuming and what I think of most as a full-time job. It must be the nursing brain, LOL.

        I can now order one of my PH meds online, and for the other, I have to speak with Accredo. I’ve tried to get my local CVS to get all of my other meds to refill every 90 days around the same time, so I’m not picking up meds each week, but they are not doing the best job with this so far. They are new for us, so, hopefully, I time.

        A few times, I have lab appointments and do several doctors’ labs at once. But this isn’t usual for me.

        I also find the My Charts much less time-consuming than a phone call when I need something. I will always call if it is more urgent; otherwise, using that communication system helps. Do you use any MyCharts or similar to communicate with your medical team?

        Thanks for sharing your organizational tips. I’ve noticed a trend here from several of you; organization is key. Now, I’ve been trying to find the best way for me to keep all my dates, appointments, and reminders organized. I started trying to use my Google Calendar, with color codes for different doctors, etc., but I’m so old school I need to write it down, it seems. I have my older desk planner, which is too large for my purse, so I think I’ll look for a smaller one. Any suggestions of how you keep appointments and reminders? I use my cell phone for med reminders and, at times, task reminders.

        • #35469
          Colleen Steele

          @jenc thought I would jump in here about MyCharts. It took me a while to really utilize it but I do go to it so much more now for myself and Cullen. I like the feature where you can message your doctor. I’ve done that a number of times when I wasn’t sure I needed to be seen but had a concern. There have been times she was able to prescribe an antibiotic through a MyChart conversation.

          I like reading the appointment summary notes from there instead of a hard copy. It’s a great appointment reminder and reminder of how to take a prescription if not exactly as written on the bottle.

          I could go on…I just really like and recommend using it.

        • #35476
          Jen Cueva

          Thanks, @colleensteele, for sharing how well you like to use MyCharts. They do make communicate non-urgent needs to my medical team. I will call if it’s an urgent matter.

          Yes, I prefer reading my labs and other reports via MyChart versus the hard copies. Plus, I don’t have all of that wasted paper.

          I’m happy to hear that you use that for yourself and Cullen. Since you’re also a caregiver for your hubby, do you use his, too, or does he tend to his medical care from that perspective? How is he doing, BTW? How about you? Grab a water bottle and rest up.

    • #35466

      @Carol @Jen you kind words warm my heart and made me smile! I send all my love! I hope you All have a wonderful weekends and listen to your body when it says “excuse me but can we just slow down” My husband hates that part .. so I get to annoy him every weekend!  hahaha

      • #35477
        Jen Cueva

        LOL, thanks, @kygon. My weekend was spent primarily on my couch. I missed dinner with friends, but my PH body and Manny told me I needed to recharge.

        Like Bryan, it annoys me too when I can’t do as I want, LOL.

        Saturday morning, I did clean out my fridge and freezer. Then I showered and got dressed yesterday. That and ordering groceries online was it for my weekend. But I took several naps on Saturday; my body must have needed it.

        Of course, as Manny left for work this morning, he reminded me to “take it easy” today- I can picture you doing the same to Bryan on your way out the door.

    • #35491

      @Jenc, I am glad you got to relax this weekend, we went camping at a lake with friends and I tried to convince my husband Not to paddle at that altitude and just relax but I felt like a broken record on repeat, so I gave up and rented him a little boat with a motor so he would stop pushing so hard and that worked hahaha.. men cannot resist things with motors.

      I was fairly nervous and initially I declined the invite because of the lake’s high elevation, but we haven’t seen these friends since before the pandemic and Bryan refused to miss out on the fun, so after my best negotiating tactics failed, I packed my nerves along with all the medical gear and gave it my very best effort to not nag him to death hahaha. +You caught me, I did tell him to take it easy this morning and last night I convinced him to let ME unpack the trailer. I try to let him decide what he is capable of, but sometimes I can still put up a good enough argument to get him to just take it easy (I often feel like Just that is a full time job! hahaha)

      • #35496
        Jen Cueva

        Hi @kygon, you and Manny would be two peas in a pod. He sounds like you and vice versa; hehe.

        I have a Groupon that will expire in a few months for a Kayak Cave tour in La Jolla; He thinks I will exert myself too much. I’m like, I’ve been doing my arm exercises to prepare. Like you, we will end up going, and he will pack his nerves and probably a few cold ones to survive the trip. At times, I think I feel like he can be overprotective, but then again, he does know me extremely well, and he is who takes care of me when I am done. Do you and Bryan ever discuss this same topic?

        I hope to travel to Lake Tahoe eventually; of course, the altitude is much higher. I already agree to keep my O2 on during that trip to enjoy it when the opportunity arises.

        I bet Manny would agree that trying to get his point across is also a full-time job, especially on the weekends. Because I rested this past weekend, I already said we would go to the beach this coming weekend. Hehe. That’s my bargaining skills. He usually will give in as long as he thinks I won’t try to be SuperWoman- who me? LOL

        Cheers to a new week ahead, to you and Bryan.

    • #35500

      @JenC Yes Manny and I definitely have a lot in common (although I think you and I would be a lot of fun trouble in the same garden)  and yes we do talk about it, as I have said communication is what makes this whole thing work for us. And when Bryan or I say hey tonight I need a break from “the hard topics” we listen and that is JUST AS IMPORTANT!!! After losing our daughter we really had give each other pause when needed and use friends and family if the other needed that outlet … Its been a long walk on a very high slack line without a safety net… when the wind blows we are both good to just pause and HOLD ON!!!

      Your kayak trip sounds amazing and I am sure Manny can handle the paddling for any time you need a minute … just a tip save Your energy for going against the current … one person can easily carry several on the current but any help against the current is very appreciated hahaha I look forward to hearing all about it and hopefully you post some pictures!

      • #35516
        Jen Cueva

        LOL, @kygon, it sounds like we could have loads of fun in the garden; hehe.

        I love how you stress the importance of discussing opening the hard topics. These are the ones most want to sweep under the rug. I have extended family members who enjoy doing this, and I’m all about getting it out in the open and talking about it.

        Hitting pause is a skill that many of us don’t practice enough. I wrote a column about how difficult this can be at times.

        It sounds like you and Bryan have learned the right tools that work for y’all. I love it!

        Thanks for the kayak tips; it’s been many years since I was in one, LOL. Hopefully, we will schedule that within the upcoming weeks. I think it’s been busy with schools out for the summer.

        Are your boys getting ready to go back to class already, too?

    • #35525

      Great column @Jenc!! Pausing is so important as well as sniffing the flowers I often pause to smell my flowers or just sip my wine and watch all the little birds hustle about, Bryan often joins me or goes and soaks in the hot tub our other pause is scenic drives or relaxing in a hammock.

      I think what gives Bryan and I an edge is that we were best friends for YEARS before we ever dated

      our youngest is going into Jr high… I think I am more nervous about his transition into multiple classes, but I am hoping he is ready! Our other two boys opted to find jobs and not enroll in collage… I have hope for the 18 yr old but not so much the 24 yr old LOL … The 18 year old is really wanting to move out yesterday so we will see how fast that happens .. little worried that if he does he may never go back to school… but adults are hard to manipulate when they are 18 and taste freedom. And my daughter in law just started fertility treatments so hopefully that is successful, very excited and hopeful to have grandbabies!!




      • #35528
        Jen Cueva

        Thanks, @kygon; speaking of hammocks, Manny is looking to buy me one to put on our patio and maybe take it to the beach or mountains when we go. Is yours portable?

        That’s so cool that you and Bryan were best friends first. I know that makes a difference, and y’all make such a lovely couple.

        Aww, Jr. High is a big change; I bet he will do great. They often surprise us when we least expect it, right?

        Yep, it sounds like the newly graduated 18-year-old has a taste of freedom. As I reminded my 18-year-old niece, everything costs so much; stay at home as long as you can. But I know how that first taste of freedom often comes to bite you.

        Well, sending some positive vibes to the 24-year-old and DIL. Grandkids, wow, so fun. My daughter says she isn’t ready for that; not so sure I am either, LOL. When the time is right, sure, I’ll be prepared.

        Have a great day. Any plans for the coming weekend? Did y’all order takeout for your lazy anniversary?

    • #35531

      @jenc, yes our patio hammock has a case and our mountain/camping hammocks are super portable in little pouches. Grandbabies are just a hope still but its hugely exciting that they are finally getting answers after trying for 2 yrs so hopefully in next year (my oldest is 27 and been married for 5 yrs now)… I barrow some of our friends littles bc I just love those itty bitty humans, hahaha

      I actually made my husbands fave pasta (chicken carbonara) but we did get sushi to go the day before, last night we hung in the hot tub and vegged out on the porch swing to dry and smooched like teenagers and did a champagne toast to more years, more memories and more adventures.

      No plans this weekend really .. we were at the lake last weekend and I need to do some yard work and catch up on house and get ready for school starting next week but I am sure we will sneak in something fun hahaha

      Do you and Manny have any plans this weekend?

    • #35536
      Jen Cueva

      Hi @kygon, I am so happy that your kiddos are getting some answers and help with their ongoing fertility struggles. You could have a little one running around more often before too long. Until then, keep borrowing them. LOL.

      I’ll check out the different hammocks. Manny has mostly been looking, so I want to try them out before we buy one or at least read reviews.

      Your special celebration for your anniversary sounds romantic and a tad lazy. Well, except you cooking and all of that smooching.

      What did y’all have with the pasta? Salad and garlic bread? I love pasta; we were planning to make pasta last night but made grilled Pollo Asado instead. Manny grilled the chicken, and I threw together a bagged salad and air-fried some diced sweet potatoes, red potatoes, and carrots. It was some of my veggies leftover in the fridge.

      I don’t know of any big plans. I hope to make it to the beach since I didn’t last week. Plus, we were invited to Happy Hour drinks and dinner tonight with friends, so waiting to see how well my body behaves today.

      Aww, busy weekend for you, even at home as you prepare for the new school year.

      I hope you and Bryan enjoy a nice weekend, don’t forget the breaks and wine in between your tasks.

    • #35548

      @Jenc we just had salad with the pasta, your dinner sounds soooo good I might have to try that this weekend hahaha.

      I hope you get to go to the beach and have so much fun at happy hour! We got dinner plans this weekend last min with my Russian friend who is a gourmet cook hahaha SCORE, she makes Everything from scratch and she always makes a dessert too… we make the drinks and my hubby loves mixology so it makes for this awesome evening of gluttony hahaha

      I hope you also have a wonderful weekend!

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