- This topic has 40 replies, 8 voices, and was last updated 1 month, 2 weeks ago by Jen Cueva.
February 7, 2020 at 12:04 pm #22934
This could apply for parents, caregivers of PH, or anyone that is going to appointments with their PHer or the PH patient themselves: My biggest question lately is, how do you balance appointments and work at the same time? I know that when I was in my prior job as a teacher there was NO WAY I would have been able to make many of the appointments that I have. Most of my appointments are during the day time or morning hours and I just wouldn’t have been able to take all that time off without getting penalized for it.
There are so many days that my mom has to take off too in order to drive me to appointments since I have driving restrictions right now. I think about the time that she is missing, but luckily she has accumulated sick time over the years of teaching.
I am just wondering how everyone balances work life with appointments? Sometimes going to appointments (on a busy week) can really feel like a full time job and by the time I come home I am just too exhausted to do much of anything.
February 8, 2020 at 6:41 pm #22968
Hey Brittany, I have found myself asking this exact question. This is a tough balance and I wish that I knew the answer. Lately, I have been struggling with time management. I have been trying to set boundaries because I have found that my body has been beyond exhausted.
I have been trying to schedule my writing and work hours for a few hours each day. Some days my body is too exhausted to tackle much of anything. But, as you mention, weeks like this coming week, with 3-4 plus appointments it does not work. I will go to my appointments and work when I can in between rest periods. The appointments will suck most of the energy that I have.
I hope that we have some better tips as I need them, too. ????Now, if only I was better at setting boundaries and rest when I first notice that my body needs to rest. Giving myself that permission is something that I am working on.
February 10, 2020 at 12:03 pm #22983
@jenc totally true. And it’s important for both of us to remember that we can run on an empty battery and we reall’y can’t pour from an empty cup. If we keep giving everyone else our last drops of things then we will be stuck with nothing. As much as that says a lot about who we are as people and how caring we are, it also shows that we are just doing the exact opposite for ourselves and that is not self care. I guess we can both learn as we go and share tips and tricks when we find ourselves getting there or notice things that seem to work.
February 11, 2020 at 12:07 pm #23005Anonymous
I am having a rough time with that also. Bronchoscopy result is sarcoidosis. Waiting for appt with new cardio re the PH and now my knee has given out. Going to ortho today. In between pcps so original cardio dr did paperwork for fmla for me but I hate missing time – using my pto up and it’s just a pain . Wish I could retire but not there yet but worrying about work and health is a major pain. Brittany you are so young to deal with all you are .No answers here but right there with you on this issue.
February 11, 2020 at 1:29 pm #23009
Lynn, it sounds like you have been through a lot lately too. I’m so sorry that on top of it all your knee is giving you pain. I wish you luck with your new doctor. Let us know how things go.
February 12, 2020 at 9:47 am #23018
What exactly is sarcoidosis if you don’t mind me asking? Are they thinking that this is what is contributing to your PH? I know that it is so hard to miss time. It is good that there are programs so that we don’t get penalized when taking days out of work. When I was teaching and had to miss so much time one of the major things was that I couldn’t get paid during that time because I didn’t have tenure as a teacher because I was new. People were offering to donate their sick days to me so I could get paid but it just wasn’t allowed.
February 13, 2020 at 4:37 pm #23044ChrystalParticipant
I am very fortunate and the hospital and all my doctors are between 15-20 minutes from my work. I try to schedule my appointments as close to lunch as possible or the last appointment of the day. That way it is less noticeable at work. It is tough in a corporate environment wearing Oxygen 24/7. You don’t want it to be noticed that you are also running to doctor appointments all the time. Taking a long lunch or slipping out a bit early is not really noticed. I also try to schedule multiple appointments in one day (back to back if I can) then take a vacation day. Unfortunately most of my doctors want to be seen in order. (so they have time to see the previous notes)
February 13, 2020 at 4:48 pm #23047
@chrystal-eckman I am sure that helps you out a lot. It works out that your doctors and appointments are pretty close to your work. I used to teach and when I would have a longer break period I would try to schedule an appt that I knew would be quick enough or I would schedule my breaks so that I would just leave at lunch and have the free period after lunch in case it took longer. But the more appointments I had and the more testing I needed done the harder this was for me to do. Luckily I worked with great people who would cover me if needed but I just couldn’t do it anymore and it was really hard for me to admit that.
April 14, 2022 at 11:25 pm #33961
@traceyaustralianmigration-co-za shared the good news yesterday that she now has 100% ownership of her business. Congratulations Tracey!
I thought this topic would fit well with her announcement.
How do you balance medical appointments and work?
April 15, 2022 at 12:41 pm #33967
Excellent reminder, @colleensteele, and I wish I had figured the solution out by now. Unfortunately, at times, this continues to be a struggle with PH. It’s challenging to find a balance that works when things pop up unexpectedly often.
I’m learning to allow my body to rest, but I c=find that I continue to push myself some days. @traceyaustralianmigration-co-za, maybe you can help offer some of your suggestions? Working and doing the work for 100% of any business must be more challenging to balance. How the heck are you doing it?
I try and limit my work hours to before 2-3 PM; this helps most days. But if I have appointments, this may be a challenge. But, I’ve noticed that I will ask for help. I’m thankful that my FWW and co-moderator, @colleensteele, always helps me out.
April 15, 2022 at 10:31 pm #33971
@jenc I think you have gotten better at making time for yourself and resting when you need to. Hmm, sometimes you need reminders and a little nudge…LOL!
When Cullen had PH I was caring for him, also raising Aidan, working full-time and seeing to other life responsibilities. When I look back on those days I honestly don’t know how I did it. But for the most part, my health was good. I think about PHer’s like you and @traceyaustralianmigration-co-za who are working and I’m in awe of your strength and commitment.
Tracey, is it an option and do you plan on hiring people to help with your business? How are you at delegating? It’s so important to do that when you can.
April 18, 2022 at 1:15 pm #33984
LOL, thanks, @colleensteele, but I am also stubborn at times like you. Delegating is something I’ve never been great at doing. But, I’m learning to try this at times, especially when I have a busy schedule on top of a lousy PH day. I appreciate your support and thoughtfulness.
Hi @wheeldog, I hope you and Mary Ellen made the live mass on FB. Manny and I attended a new church Easter service and enjoyed it.
You do have an advantage since you run your own company., But I would think at times, since it all depends on you, it can be stressful when you have a bad day. What other things can you do besides having other trucks take the loads? Do you have any employees on standby? Have you in the past helped when the business becomes busy?
April 18, 2022 at 4:01 pm #33997
I used to have an employee and another truck, but I sold that truck so it’s just me. I have friends with trucks and we help one another out out. If I get a job where more than 1 truck is needed, I call them to help. When the other companies need more trucks they call me. It works out pretty well.
My job is like any other, there are mostly good days and some bad ones.
April 19, 2022 at 12:21 pm #34003
Hi @wheeldog, I’m happy to hear that you and your local friends help each other as needed. When the season becomes busy there, it sounds nonstop for months. Is that the norm for y’all in Alaska in the dirt and gravel world?
You mention how you all help each other out. I love the fact that you men are asking for help when needed. That’s an important reminder with any job and also daily life. Do you find you are more inclined to ask for help with work but not with chores at home?
Your last statement, “My job is like any other, there are mostly good days and some bad ones.” says it well. Although, I’m happy that most of my days are the good ones. Thanks for sharing.
April 15, 2022 at 10:07 pm #33970
Guess I am lucky with that aspect. I take winters off, so not a big deal. In the summer I am self employed doing gravel deliveries. I try and book deliveries around my appointments. If I get into a bind where a good customer needs something, I find another trucking company to cover for me.
April 15, 2022 at 10:34 pm #33972
@wheeldog you do have a rather sweet arrangement. Not only does your schedule make time for appointments it probably also find yourself enjoying work more because of it.
How are things going? Any Easter plans?
April 15, 2022 at 10:53 pm #33975
Well I am doing better than I should be and VERY happy about it. I posted about it in another thread.
Didn’t know Sunday was Easter till today. Was on “geezer patrol” and a car slowed down and the driver said “Happy Easter”. I looked at the other geezers and asked when was Easter. We kinda guessed and figure it was this weekend???? Had to look it up when I got home. So no real plans. Our local church has Sunday Mass on FB…….guess we will probably catch that.
April 18, 2022 at 3:08 pm #33995
@jenc @colleensteele I sure don’t have the magic formula. What I do know is that I have to support myself and the 5 families of my employees. It puts a super amount of pressure on me, like I know in 10 days time I have to pay salaries and I don’t have the money yet. I am getting better at taking more breaks and not working on my old regime of having to get everything done in a day because you don’t know what’ll happen tomorrow. I accept now that things will take as long as they need to take so I give myself breaks for about 3 hours in the arvo and then work a few hours to supper time and then to bed. I had a lot of things to organize this weekend, but I’m feeling pretty grotty, so I haven’t even made a.start and the world will not end if it only gets done next week. Only thing that can’t wait is chasing money. But I have a wonderful lady who works for me, Michelle. She is so supportive and really takes a big share of the work and supervises the other staff. But there is stuff that only I can do. Michelle is the only one of my friends (and she is a friend despite being an employee) that has bothered to try and understand PH. She is a real gem.
April 20, 2022 at 12:38 am #34029
@traceyaustralianmigration-co-za we all need a friend like Michelle! It makes me so happy to hear that you have someone like her in your life. I hope the rest of your staff will understand that since taking full ownership you need time to work through trial and error getting your ship running at a productive but reasonable pace for all of you. Wishing you the best my friend!
May 13, 2022 at 11:44 am #34356
Hey @traceyaustralianmigration-co-za, how are things going for you and managing the business and life with PH? I haven’t seen you post in a little while.
April 19, 2022 at 12:27 pm #34004
Hi @traceyaustralianmigration-co-za, I’m happy to hear that you have help from other employees. It sounds like you are doing better with accp[ting what you can do now and making rest a priority, too. But, I can only imagine the pressure you are under when dealing with pay and the responsibility of your employees’ families. You are such an incredible business owner who truly appreciates your employees.
Michelle sounds like an amazing employee and friend who supports you. Do your other employees know about PH, or do you only discuss this with Micelle since she’s also a supportive friend?
I’m proud of you for reminding yourself to take breaks and that you can only do so much in a day. I struggle with this some days.
April 21, 2022 at 3:52 pm #34075
I own a kitchen store. In addition to the behind the scenes work, I am on the floor helping customers. This is my favorite part of the job, but also my hardest part (walking and carrying products). I have a full time employee (my daughter) and the best part-time employee who does the things my daughter and I can’t. I’m thankful that we all work together so well. I physically work in the store after 2pm. Mornings are difficult for me. My body moves slow and then the diuretic kicks in. I schedule all appointments in mornings though. I don’t have more than one appointment/week unless it is just a blood draw. I have had all day back to back appointments, so I’ve made sure to have the next day off. I currently take Tuesdays and Wednesdays off each week. They are my “do something extra” days – grocery shop, clean out a closet, etc.
Having a small staff it is difficult to take time off, so I keep a huge calendar with appointments, scheduled work time, and anything else that will exhaust me. I know I only have 2 -3 hours a day of energy. If the calendar looks overwhelming then it’s time to cancel or move some things.
I have found working to be difficult not so much because of scheduling but the day-to-day physical work. I love my store, but I don’t know how much longer I’ll be able to run it. It is a small store in a small town, so hiring more people is financially out of the question. I have talked with a few interested buyers, so we’ll see.
April 21, 2022 at 9:14 pm #34080
@debbie thank you for sharing your work experience. Even thinking about selling must be emotionally taxing on you. If the time comes for you to make the hard decision I hope you will think about what you have told us. You have done your absolute best at balancing PH with your career. I admire your organizational skills, willingness to delegate responsibilities and even penciling in time to focus on “extra” things. You have done well and I hope you never forget that.
I what kind of store do you have?
April 22, 2022 at 8:47 am #34085
I have a kitchen store (Farmhouse Spits and Spoons). I do have locals for customers and my tourists seem to love it. Some returning tourists put it at the top of the list of places they want to go to shop. Gives me a big head!
April 22, 2022 at 2:23 pm #34091
Hi @debbie, is this your cute store? Farmhouse Spits and Spoons It’s such a cute place, I would love to stop in and shop.
I do think owning your place and knowing you may need to consider selling is tough, I’m sure. But, it sounds like you have your schedule set and take extra time as needed. But instead of taking that time to make those additional “to-do” lists at home, have you tried using some of that time for rest and recovery? Although I know as a business owner, wife, and mom, plus PH, it must be challenging to balance it all.
Kudos to you, Debbie!
April 22, 2022 at 10:10 pm #34108
Oh geez @debbie you mentioned in the beginning of your post what kind of store you have. Sorry that for some reason my mind didn’t catch that.
You are living my dream. I have always wanted to run a little store like yours, either a bookshop, antique/nicknack kind of place, or a downsized type of Hallmark store.
Love the name, “Farmhouse Spits and Spoons”!
April 27, 2022 at 10:39 am #34155
@jenc @colleensteele That is my store. It was my dream too. I’ve always wanted some type of retail store; I don’t know why (my background is chemical engineering). One day my husband and I were driving from Augusta, GA to Mount Airy, NC and I told him Mount Airy didn’t have a kitchen store on Main St. and every little downtown had to have a kitchen store. So he asked me if I was going to open one and I said yes! I do love it. This old PH had to get in the way! On to new adventures!
May 13, 2022 at 11:46 am #34357
Hi @debbie, how are things going for you? You’ve been on my mind as I think about the struggles of owning your own business and managing PH. But more importantly, the decisions and need to sell and move on to the next chapter in life. How are you feeling emotionally?
May 13, 2022 at 3:16 pm #34365
@jenc Life is good. I just finished pulmonary rehab and they were amazed at my progress, and frankly so am I. So I’m excited to keep it up at home. I just did a sleep apnea test last night, so I should hear from my pulmonologist soon. The business is up for sale. My husband and I just booked a Hawaiian cruise for January 2023 (our 40th wedding anniversary). So busy, busy!
Emotionally I’m doing well. I’m tired it seems like all the time and with summer approaching the store will just get busier, so it needs to sell soon.
May 16, 2022 at 11:30 am #34375
Hi @debbie, congrats on graduation and kicking butt in therapy! I love that you and your hubby booked that Hawaiian cruise for your 40th anniversary; that’s a milestone! I’ve wanted to go to Hawaii, so maybe once Manny and I make it another 10 years to 40.
And then the business up for sale, you certainly have much on your plate, my PHriend. Did you mention before that you had some interest? Hopefully, someone will buy it locally and keep it going. It looks like a lovely place. You made it happen!
Although emotional, it sounds like you are at peace because you know your health is the top priority! Way to self-advocate!You’ll focus that time and energy on you, your family, and your next chapter.
Was this your first sleep study? Please let us know once you hear back about that. Kudos and Cheers!
May 15, 2022 at 3:42 pm #34370
Hi @jenc, thanks for always being such a good phriend. I have to say that I haven’t exactly been getting the balance right recently and have managed to totally exhaust myself to the point of being absolutely useless for the last three weeks. This of course is so counterproductive but I realize how close this business is to going under that I’ve been relentlessly trying to drive new business. Losing 3 weeks is just not going to do it, so I have to learn to work smarter. I’m pretty pissed that my partner jumped ship, even though he hasn’t ever done any work it’s so unfair to leave me holding the baby.
I’m also trying to investigate my options to take legal action against the cardiologist who could have diagnosed all of this back in 2011 and again in 2017 but failed to do so. Its really difficult to take action against the medical fraternity in South Africa, but this guy messed up on 4 separate occasions and I was almost dead before it came to light. He needs to be held accountable.
I saw the pulmonologist this last week. My lung volume is down 500mls and she’s really concerned about tbe ongoing shortness of breath and dizziness. She has asked the cardiologist to do another rhc. Sbe wants a clear post surgery picture to see if there are other meds we can petition to be brought into the country and for insurance to pay. She has also suggested i think about getting a gastric balloon, but that doesn’t appeal to me at all. I want to rather see an endocrinologist first because I know what I do and don’t eat, and in what amounts and it makes no sense to me that I lose a few kilos here and there, but it either just fizzles out or gets put back on again..
I’m feeling pretty stressed out, but I’m snuggled up with the boys now and maybe they’ll give me some of their energy because I have to function tomorrow.
May 16, 2022 at 11:41 am #34376
Hi @traceyaustralianmigration-co-za, I’m sending you extra gentle hugs, spoons, and prayers. Your post sounds exhausting, and you s disappointed. Please know that you’re only ONE person and can’t do it all. You must learn new ways to balance your work and life with PH. Don’t forget the timeouts with the boys!
I can’t imagine how long it takes to have meds petitioned and brought in from other countries. Hopefully, they can do an RHC soon and get this started.
Does the pulmonary doctor think losing weight will help your SOB and dizziness? You mentioned she suggested a gastric balloon. I would suggest meeting with a nutritionist or dietician first and doing a little exercise to see if that helps before going in for that procedure. I don’t blame you for not wanting to do this.
How about any local friends or loved ones who could do assistant-like duties to help you get ahead? I can’t imagine the mess your partner left. I’m so sorry that you’re struggling right now.
Please know your health and your happiness must come first. Take it slow and try and find that balance that works well for you. We are here for you when you’re up to it and have time to pop in and say hi- hugs from San Diego.
May 16, 2022 at 4:57 pm #34386
@traceyaustralianmigration-co-za you have a lot on your plate medically and professionally. I hope you can figure out a way to balance it all and make time to just sit back and snuggle with your fur babies. Ditto to everything @jenc suggested.
From what I have heard taking action against a doctor in the US is quite complicated too. A part of me would like to see you pursue the matter but another part is worried it will add more stress and time to your already busy schedule. That being said, that is probably a big reason why some doctor’s get away with negligence for as long as they do. Let us know what you decided and how things are going in that regard.
May 17, 2022 at 10:44 am #34395
Hi @traceyaustralianmigration-co-za, @colleensteele makes an excellent point. I had an incident where I could have investigated and filed complaints at a hospital. But I choose not to as I read about how long it could be.
After speaking with an attorney who also mimics what Colleen says, it sounded like too much energy and time, and then they probably would get away with it because of the high levels of insurance they carry. This is the same with physicians.
As an anonymous complaint, I took this to the hospital managers level by level, hospital admin, and state board. This is what was suggested by an attorney and patient advocacy group.
While I would have liked to punish them, and hopefully, this wouldn’t happen to others, it was not what happened. You wouldn’t believe the complaints the state boards receive. This process was a much lighter lift but was mentally and physically draining on top of my health concerns.
Thanks, @colleensteele, for that reminder and for making an important tip.
May 17, 2022 at 3:21 pm #34401
@jenc I’m sorry you were pushed to that point too. I’ve been fortunate that (knock wood) we haven’t had any reason to complain about Cullen’s care. It did take 2 years to diagnose him with PH but that’s typical. When the cardiologist figured out what it was he put his hands up and admitted immediately, “This is beyond me. Cullen needs a specialist”. I thank God every day for his willingness to pass his patient on to another.
When you mentioned attorney that brought to mind another concern – the cost of legal action. @traceyaustralianmigration-co-za I’m sure these are things you have already thought about. We don’t meant to discourage you from pursuing action if you feel strongly about doing so. We just worry about you my friend and don’t want you to get burned out with all that is on your plate.
May 18, 2022 at 11:04 am #34405
Thanks, @colleensteele, for your thoughtful words. I’m grateful that you haven’t been to this point of a complaint about Cullen’s care. The majority of my care has been excellent, and I am fortunate that that outweighs the negative experiences.
Cost is another hurdle with legal actions; @colleensteele, that’s an excellent reminder. Yes, I agree we are concerned about your overall health and know you’re already loaded with your health concerns and getting your business back on track.
You’re in my thoughts and prayers, @traceyaustralianmigration-co-za.
May 18, 2022 at 5:04 pm #34411
@jenc, @colleensteele thank you both so much for caring. It is so appreciated that you have a my back. I’ve been feeling very alone lately because if you think people don’t get health issues, they sure don’t get being the boss., so messages from the two of you have lifted me on days when I have felt totally defeated.
The attorneys I have spoken to work on a contingency basis, so if they don’t win they don’t charge a fee. So financially I’m going to be ok, but I definitely hear you on it being a stressful and emotional process. I just know myself and I feel really strongly that this doctor messed up. He’s one if those with a God complex and I want him to know he messed with the wrong person. I also don’t want someone else to go through what I have, my heart problems could have been addressed and managed since 2011 without it becoming such a traumatic experience. He has financially ruined me – I’ve lost the last 2 years of earnings and who knows how much longer its going to take me to start generating new business. I’m not a vindictive person but this man treated me with disdain because I’m overweight and he nearly killed me..I can’t just sit with that, I need to do something.
My RHC has been scheduled for next Wednesday. I asked if I could have a radial procedure so that I wouldn’t have to stay the night in hospital, but the nurse tells me he’s doing left and right hear so it will be femoral and I will spend the night. Ugh!!
Anyway, my dear, dear friends, thank you for being so supportive and concerned about my well being. It is so appreciated and make such a difference in my day – I promise to learn to balance things and not burn myself out.
May 19, 2022 at 12:41 pm #34416
Hi @traceyaustralianmigration-co-za, please lean on us here when you feel like no one is listening or relating. You are never alone, and we hope to support you as you need. It’s our pleasure to help you. We’ve all had moments when we feel alone or like no one gets it!
I’m sorry that you have to stay overnight after your heart cath. I’ve had both RHC and LHC and only had to stay there part of the day. But again, things are different with each case and in other areas. But know you’ll be there if you need anything because you usually need to lie flat for hours after both sides are done. I hope and pray that they can find out some solutions to help offer you relief, my PHriend.Please keep us posted when you know and know you’ll be in my thoughts and prayers on Wednesday.
Hopefully, as far as the legal action, you’ll accomplish something and won’t take too much time and energy. I hate that you were treated in such horrible ways by a medical professional. Take care of yourself, and know we are here to support you.
January 31, 2023 at 10:47 am #37207
Hey, y’all, I wanted to share this topic again with our caregivers and patients who work and balance appointments. How do you manage?
I’m grateful that I can work from home part-time. However, working outside the house would take my time and limited spoons. Some days working from home part-time is too much, and I have to reach out and ask for help. Thanks to my FWW and friend, @colleensteele, for always taking up the slack and having my back in the forums.
How are our patients and caregivers working, regardless of where and how many hours per week? What strategies or tips have been successful that you could share to help others out?
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