Kim, I was feeling so many things while reading your post. I cannot believe how much you are doing and what you are subject to. You are doing an incredible job and I am sorry to hear that there is not more support around you and help so that you can give yourself a break every now and then. What I read from your post makes you look like a super-person, I cannot believe you are still standing upright. I wish I could help you and I hope more help/relief comes your way. Even though we are all in very different locations, please know that we are caregivers here that care about each other and offer an ear and support as best we can. I hope you encounter doctors with a better sense of being around you as a spouse and not say insensitive things. I hope you come out of fight mode so you can recharge your own batteries so you can carry on. I was also in fight mode for so long, and tend to relapse back into it when I encounter something big, bad or unknown. I am glad that you have kitties around you too. I love animals and they are always such a sense of unwavering love and presence.
Kim, you are doing something that demands so much energy, love, dedication, tolerance and patience. Remember to be good to yourself and give yourself a breather (as you did yesterday) once in a while. I know it is hard to know when to stop up when you are on your own and slow down for a day. I hope you can use this forum and our ears/support.
Walt, I hope your muscles are doing fine after the massive snow shoveling! J This seems to have been a huge storm and things are slowly going back to normal, step by step. I guess it gives a lot of time on the Cardio Strider?
I am going back to bed, got a cold yesterday, but I had to write after reading Kim’s post, just to say “Hey, we are out here, you are not alone and you are doing an amazing job.”
Thank you also for the Davita information. I will definitely look further into this great website and get all the help online possible.
Welcome Kim. I hope you find some solace here. I have. Your story is heart wrenching. I have been through through what you sufferered in the earlier years - kidney failure, COPD, cancer scares (2 of those), increasing neuropathy, something called monoclonal gammopathy, single income.
We have dealt with all of this pretty well and we lead a mostly normal life as you did. But your last fight sounds truly frightening. The level of care required is unbelievable for a person with a full time job. And he is so very ill. How can you commute such a distance almost every day and still have a life at all? I can relate to "the fight" keeping you going but you'll need to take breaks, won't you? No one can go on like you are now. My heart goes out to you and to your husband. He is very lucky to be so loved.
You already know, I guess, that families and their peculiar reactions to serious illness, are a frequent topic of discussion on this site. You probably should not rely on them. I know you're researching everything and I hope you can find a solution that will let him come home with full-time care (while you're at work, at least). I'd be interested to know what you find out.
Walt, mind your shoveling! Leslie needs you to be healthy, Can you find a local kid to help?
Michelle, oh, Michelle. I'm so sorry that you're having to watch Soren go through this. I have glaucoma (normal pressure glaucoma) and have already lost 50% of my vision so I fear blindness in a very real way. I rely on denial where that's concerned. I take my drops and surgeries and pretend that this will not progress. My fingers have stopped typing because I really don't even know what to say. I am SO afraid that Dennis will be gone too soon and I'll be left blind and alone. Terrified, in fact. I can't believe I'm saying this out loud.
I am being careful shoveling. It feels like I'm in cross training......Cardio Strider---Shovel.....Cardio Strider---Shovel. I am doing it in a reasonable way. I'm done 99%. Just a little clean up and let the sun finish the job.
I hope everyone is doing the best they can in their respective situations.
Kim, you mentioned that you want to learn how to move your husband easier. I don't know if it is possible, but if you went to a local ambulance station or fire station they might take the time to show you the easiest (proper) way to move him for the different things you have to do.
The cats are happy that I shoveled paths for them and the birds are glad I did paths over to the feeders.
Kathi, what a good thing to be honest and put words to your fear. I can imagine that they are very real and scary. I am sorry that you have this fear and that it is tangible. Thank you for your honesty and trusting us to write that. I think we are all experience fears and frustrations that others here on the forum can see, feel and understand, it is just hard not being able to offer help or support that could make things better. That is how I feel at least. I wish I could do more than just read and reply. But I feel for you and my heart goes out to you and I have you both in my thoughts and prayers.
I too am going through some major issues as of right now. Finally they called Soren in for the first appt for getting the fistula placed in his arm. After the initial appt they will call him in for the operation. It is about time. I feel he is slipping through my fingers; he is so exhausted that he sleeps all the time, nods off every 10 minutes, has nothing to say and is just passive. I feel the weight of the world on my shoulders right now trying to get him to eat and he cannot keep it down (bad if you have diabetes), I feel like he just sleeps and throws up alot. He cannot see anything so he just sits on the couch and his personality is changing (they say this is normal when the wastes are not being rinsed in the kidneys), he is lethargic and exhausted. Plus trying to get everything else in the household to hang together and him to his multiple appts etc etc. I just feel so alone and especially with him not being here with me emotionally. I feel like I am living with a stranger.
I am sorry just venting and nothing else. I had to get it off my shoulders, I have been crying a lot today and I wish it would stop. Boy, the trials and tribulations we go through.
Defiantly not superwoman. Not sure how I'm still standing. If I wasn't so actively involved in his care he would not be with us now. The first hospital did a spinal tap and never sent it to the lab. Not only that but they brought him back to me with bruises and scrapes on both sides if his face and tried to tell me it was his fault. He was on the right med but they discontinued it after the standard course. Had they got the diagnosis they would have never taken him off that med. He would not have declined so far and he would have been in rehab 6-8 weeks in vs months later. At the LTAC I put up pictures of us earlier in the year. I showed them to the new infectious disease dr. He told me the first hospital didn't do all they should have and brought him back to acute care for testing to get the diagnosis. He will need to be on that med for the rest of his life. It's fatal without it. He's out of the area now in part to keep him away from those drs.
Kitties! What kitties do you have? I just they were happy to have a path cleared to the bird feeder:)
I suppose I need to work on leveraging to move him. He's 100# more than me an I have a small frame. They are working with me at rehab but it still takes a lot of strength. Still no answers re care at home other than medicaid. There is a brain injury waiver program and another program where they will pay a family member to care for someone at risk of going into a nursing home. Unfortunately spouses are excluded in my state.
I did treat myself yesterday to a manicure and cooked a dessert at work. I found a fried banana. Slice and sprinkle the slices with sugar, cinnamon, and nutmeg. Cook with Pam till golden on each side. Easy yummy somewhat healthy goodness:) I still had trouble driving to see him after work. That was putting me to sleep. I had to stop and walk a bit twice to get there.
Defiantly not superwoman. Not sure how I'm still standing. If I wasn't so actively involved in his care he would not be with us now. The first hospital did a spinal tap and never sent it to the lab. Not only that but they brought him back to me with bruises and scrapes on both sides if his face and tried to tell me it was his fault. He was on the right med but they discontinued it after the standard course. Had they got the diagnosis they would have never taken him off that med. He would not have declined so far and he would have been in rehab 6-8 weeks in vs months later. At the LTAC I put up pictures of us earlier in the year. I showed them to the new infectious disease dr. That help. He saw us as people not just another patient. He told me the first hospital didn't do all they should have and brought him back to acute care for testing to get the diagnosis. He will need to be on that med for the rest of his life. It's fatal without it. He's out of the area now in part to keep him away from those drs.
Kitties! What kitties do you have? I just they were happy to have a path cleared to the bird feeder:)
I suppose I need to work on leveraging to move him. He's 100# more than me an I have a small frame. They are working with me at rehab but it still takes a lot of strength. Still no answers re care at home other than medicaid. There is a brain injury waiver program and another program where they will pay a family member to care for someone at risk of going into a nursing home. Unfortunately spouses are excluded in my state.
I did treat myself yesterday to a manicure and cooked a dessert at work. I found a fried banana. Slice and sprinkle the slices with sugar, cinnamon, and nutmeg. Cook with Pam till golden on each side. Easy yummy somewhat healthy goodness:) I still had trouble driving to see him after work. That was putting me to sleep. I had to stop and walk a bit twice to get there.
Geez, you guys. I don't know how you do it! I hope I have your strength and DETERMINATION when I'm faced with such dire circumstances. My life seems so simple by comparison.
Dennis and I are going to Florida for a few days next week. I talked to our hostess. She's filled our schedule with fun things to do. Dennis will not be able to keep to that kind of schedule. But we're used to that now. He'll just bow out when necessary and rest. I explained that to her and she seems OK with it. She's a dear friend (from high school) and she will be flexible. He's been very sick for about 5 days now (constant throwing up, fever, ...) but we're hoping he'll be better before we leave. If not, his doctor will give him some anti-nausea medication that's safe to take for a day or two. He's used that before to get through something he really wants to do. It's bad for the liver, though, so he can't use it often.
Kathi, I hope you and Dennis have a great time. You did pick a good time of year. We are not overcrowded yet with spring break travelers yet. My husband and I found quite a few things to do even with the mobility issues. It was really cold a few nights ago 28 degrees Brrrrr. I'm a Florida native and was not thinking nice thought of mother nature to do that to us LOL. Today it's warmer but overcast. Thanks for the heads up on the anti nausea meds. WHen they switched my husbands feedings (on a peg tube) from continous to bollus (sp?) he didn't tolerate it very well and was giving meds with each feeding. Sometimes I wonder if he really needs all the meds he's on or if they all got added because to counteract a side effect from another drug creating a vicious cycle. What part of the state will you be visiting?
Michelle I though of you today when I remembered what you said of morning the loss of what was. I think we may be close in age. I'm 48 and my husband is 82. We've been together 32 years and our 30th wedding anniversary is in July. I had a melt down in a store today. I stayed home last night for an early morning hair appointment. My husband insisted I get it done. I stopped at a store to try and find a couple pairs of pants for work as mine are almost past their useful life. I passed the evening gowns and it hit me. We usually go see Andrea Boccelli for Valentines Day and that's where we usually went to get something special to wear. We had a great time planning our special night out as we didn't do it very often. He doesnt like this entertainer but he tolerated it for me. He did enjoy our shopping trips though. I have a dvd he released of a show so maybe we could do that this year, to have some semblance of normal, but I started crying in the store and haven't stopped even now as I type. I just try and suck it up, stuff a sandwhich in, breathe, find a chore and the tears still keep rolling. Hopefully I'll get past it before I start driving. I need to leave soon to get back to the hospital. I'm just waiting for the clothes to dry and I'll vaccuum out the van before I load it up again. I suppose the first few times one is exposed to things it's the hardest. I'm either on the road, at the hospital, or at work so I'm not in the flow of life so to speak. I rarely even go the the grocery or drug store. I'll have to learn to hold it together better when I see a couple happy growing old together or doing something fun or .....there are too many things..too many emotional triggers.
Walt I read you are an electrician. I've been trying to learn about that. I enjoy learning and I tackle something new each year. Electricity and radio waves is not a subject that comes easy to me but I'm trying. I passed my first hurdle in April when I earned my ametuer radio technicians licence. When things settle down I'll try for my general license. A neighbor is going to teach me to build an antenna and hook it up to the house. Let's hope we calculate everything correctly so I don't burn the house down. I was pretty proud when I was able to build the connections to attach the wires. Something very simple but it was greek to me when I was reading how to do it. I joined the MERT team (a volunteer mobile emergency response team through the emergency operations center) and they've been helping me along. I figured if we ever needed to go to a special needs shelter I could get assigned there get help for my husband and I could still be of help to others as well. The team helps facilitate communications during many different types of events It's especially valuable when traditional communications fail such as during hurricanes. Silly me also joined the CERT (community emergency response team). Not bad programs. I learned triage, first aid, wound care, how to help first responders, updated my cpr/aed etc.I can use the HAM radio for that as well. Ultimately I may end up in wilderness search and rescue. I enjoy being out in the woods. Alas most of that is on hold for now. The radio in the car does come in handy so I have people to talk to while I'm driving. It makes the drive a little more bearable and helps keep me awake.
To me it sounds like all three of you ladies are SUPERWOMEN. I have gone through some rough patches over the years with Leslie juggling work and care giving. Being retired takes a major slice out of the pie. As Leslie progressed and is back to a "normal" situation my job has gotten somewhat easier. Of course I am still on full alert to make sure there are no symptoms that go unseen. If she sneezes too much or coughs or has a bloody nose (brought on from the drugs) I try to make sure it isn't anything new or bad happening to her. I have to praise all of you for the constant care that you give and all the frustrations and road blocks that you have to overcome.
Kathi, I hope you have a great time in Florida and it is nice that your hostess understands the situation to know that Dennis won't be able to be on the go all of the time.
Kim, I wish there was a way that you didn't have to make that long journey as often as you do. It takes so much of your time and energy. Please try to recharge as often as you can. That's great that your are into Ham radio. You tube has quite a lot of sites showing antenna builds.
Had to stop writing this and feed the cats. Two of them were giving me the evil eye. A small (gray) cat, a medium (brown) cat and a large 22 pound (white) cat. They all get along well. So I refilled the bird feeders while I was up.
Michelle, I pray that everything goes well on the journey into dialysis with Soren.
I don't "know" any of you ladies other than this forum, but please know that I think the world of you and I am positive that all of your husbands would say THANK YOU.
I got so happy reading all the posts, they always give me hope and a feeling og belonging while sailing around in often unchartered territories. Kim, thank you for all your thoughts and reflections. I could so relate to what you wrote. I am sorry you got so sad yesterday. I get those too, not often, but when I do cry, I do big time. But I also think it is important and a release. Letting go of pent up energy, frustration and sorrow.
Yes, I am 46 and my husband is 53. We did so much together (travelled to 19 countries, went to concerts - mostly classical, and did lots of stuff together and also apart). Everything changed when he got sick and it has all been such a slippery slope since.
We are all in a situation that we do not know what the future will bring, and we all know that these are not the paths we would have chosen, had we been given a choice. We are all coping in such extreme situations and doing many things on our own. I have hours where I am so proud of myself and everything I am doing/learning/evolving and managing. Then with a swoop of a word, discussion with a doctor or something as ridiculous as a commercial or a story of something sad, off I go into despair and being sad. The roller coaster of the emotions have really been a surprise for me. Luckily I know it is there and accept it as best I can, but sometimes I do just wish for some more stability and longer periods of no surprises or changes.
It is so nice to come here and read your posts, all of you. Thank you for all your advice and words of comfort. It makes a big difference in my day-to-day. I am so glad that we are all on the same page, but not on all the same dips and hills. I am so glad to hear that Kathi and Dennis will be going to Florida, I wish you the best trip with lots of sun, laughter and easy days. How wonderful! I hope that one day next summer Soren and I can go to CA to visit friends and family. That is my big goal for future trip and all the dialysis will be doable. I will also be better equipped with the blindness and that is just the way it is. Kathi, also thanks for the nausea med info, I will see if Soren can get that too. Kim, sounds like such a good idea with the video to re-create an experience that has given you both happiness in the past and can now give a sense of normalness and joy. I am blown away by all the extra courses you have taken and I would love to try the MERT and CERT. You seem extremely resourceful and capable of an amazing spectre of abilities. I admire that! Walt, I am also so glad that there is stability for Leslie and you now and things seem to be in a good groove. Even though things are in a "normal" situation, I am sure you are ever-vigilant and always with one eye and one ear open. I wish you so much more stability and improvement with Leslie's health. How is her strength and is she and you enjoying the Cardio Strider more? I am always enjoying reading your posts with the latest updates of kitties giving you the stink-eye, house projects,thoughts on other things also etc and it is also so good to get a man's point of view in this situation(s). Evens things out. I appreciate it and thank you for all your words of support and input.
I so appreciate all of you and thank you for your posts.
Well said, Michelle. I, too, appreciate Walt's perspective and stability. We need you, Walt!
I have a big cat who is getting smaller as he gets older. And Dennis has a rat terrier named Jude (the dude). The rest of us in the house are mere accessories to Jude. Dennis is all that matters. The dog has been a real boon to Dennis. It sounds silly, but they are very close. Jude gives Dennis a reason to get off the couch 10 times a day and he LOVES Dennis. Winters are hard on Dennis mostly because Emily is in school and the neighbors are indoors. He feels very isolated. If it weren't for the dog, he'd sink into depression. For that, I love Jude even though he barely acknowledges my presence unless Dennis is out.
Today is a good day. I'm happy. I think that's because I started the day by reading your posts. You do make me feel so much more supported and understood.
latteHunter, (do you have a name?), we are going to Ft. Myers. That's also where we plan to be snowbirds when I retire. That is, unless we win the HGTV Dream Home :-).
Pets (at times) seem to be able to calm people down and raise their spirits. Leslie and I have had many cats over the years. They find us and show up at our door. We start feeding them and they become part of the family. I love all animals, but cats were the easiest to deal with when we were both working. A couple times a week I'm down at a neighbors house letting him out to do his thing.
Kim the idea of the DVD of Andrea Boccelli is brilliant. It is something really special that the two of you share and you are making it special. I've seen him live once and he is an amazing entertainer. I will use that idea of special times shared to try to come up with things for Leslie so she will remember the special times that we have shared together. Thanks for sharing that. It should be on every care givers to do list. By the way if you are using a 2 meter rig in your car and you want to make a home antenna for it, it only has to be 19.1 inches tall. Very simple to build from scrsatch.
Leslie has been using the Cardio Strider every day (me too) and is doing very well with it. I haven't been doing much around the house, but I have been helping a neighbor get his house ready so he can move. His next door neighbor is buying it and I have been upgrading the electrical system and helping him get rid of a lot of trash.
Michelle, I hope the weather is better and the gears on your bike aren't still freezing up.
Kathi, my prayers are with on the trip to Florida. I'm sure it will brighten Dennis's spirits. Like you said winter is a slow time for seeing neighbors or just going outside. The days are getting longer and I hope that the sunshine fills your hearts.
Lol re the cat stink eye. Pets sure do add a lot of enjoyment to the day. Well except for when they climb all over me in the morning to get me up for their breakfast. I mostly work nights but my purr machines have no mercy. We have 4 all rescues and very different personalities.
The CERT and MERT programs were a way for me to learn more skills and meet people. The programs were developed after 911 to train volunteers to support first responders in the event of a large event that would exceed the local manpower. We help with events to teach people how to prepare, can man distribution sites, help with damage assessments so first responders can prioritize their resources. In our area its run by the Sheriff dept. It was also a good way to learn new skills that can help my husband and neighbors. My husband and I always did everything together. There were no nights out with the girls so I don't have "friends". He was it. I have met so many wonderful people through these 2 programs.
Kristy my name is Kim. We're in central Fl about an hour north of the land of the mouse. We don't get down as far as ft myers often but did enjoy it when we did.
I was off today so it is my chance to rest and spend the day with him. Team meeting at rehab was pessimistic. They don't think he'll recover enough to be at home alone while I work. I can't afford to pay someone to sit with him for 12 hours while I work. Insurance will cover skilled nursing facility for 120 days. Then what? I have to hope he will continue to improve so I can bring him home after that. So far no luck in finding practical help. Every turn is a road back to filing for medicaid. I have an appointment with an eldecare attorney on Monday to protect me before we have to file. I'm having a hard time with that. I've worked hard, make a good living and yet here i am failing at taking care of him. He does not want to stay in a nursing home and the thought of him there scares me. The nurse to patient ratios are horrible. I can't imagine waking up and going to bed at night not being able to say goodnight and good morning. For now I'll pray that doesn't happen.
Vitals crashed. Rapid response. 911 transport back to ER. Couldn't go to hospital we wanted. Had to go to closest. Probably going to be in ICU. Prayers please. I'm trying to hold it together in the waiting room. We just got here.
Thank you for your thoughts and prayers. Things are not going so well. It's stressful to have a Dr tell you they may need to do dialysis even if only temporary. Everyone is asking about dnr instructions. Why can't I say it to a Dr once? I'm here alone. His son left to go out of town a couple hours before this happened. When I messaged his daughter that he was critical and going to ICU she responded with I was wondering about you and shared she was taking care of a friend who had surgery and was putting in time at "work" (she's an investor but likes to look in on things but doesn't have to or have to work). I dont have it in me to pray for her again. Everyone else seems to have a higher priorty than her father. When I asked the paramedics if it was an option to bring him to a particular hospital. He responded "his bp is toast and we don't want him to die in our unit" I guess all these people can't see I'm a human being. I'm not doing so well now. Headache, chest pains. The nurses we not going to let me stay added additional stress. I have nowhere else to stay. Our house is 116 miles away. I found a nurse who knew us from a prior visit. He agreed to speak to the charge nurse on my behalf. I think the nurses will back off for now.
Thank you. I believe in prayer. Drs just rounded. They are asking me to meet another Dr to explore palliative care. He's resting comfortably now. I'm falling apart. They may get us past this issue but feel the issues will keep coming each worse than the last. I pray that God will give me the strength and support to make the right decisions.
Please keep us updated when you get the time. My thoughts and prayers are with you too. I just read your post, just got online and had to send you a post, so you know we are here sending you energy, prayers and good thoughts. I am so sorry you have to go through this and are doing it alone.
I hope his condition has stabilized and gotten a little better. I also really hope that the people/staff at the hospital are stepping up to help you be there and feel a bit of comfort and space to be there with him.
I don't have anything else to say/write, I feel so much and can convey so little, feeling helpless and wish I could do more. I am sending you a big hug and may there be light for you.
Thank you all so much. In real life people have been cold to me. I look in the mirror and within myself. You can't change others but you can make changes within yourself. I try to be helpful, thoughtful, I volunteer in the community to help others. I just don't understand what I'm doing or how I'm presenting myself to have people speak to me the way they do.
Today was a mixed bag if ups and downs.His vitals appear to be stabilizing, he's off the bipap. We're still working on getting him off the pressers. The ID Dr was very pleased with his progress, the nephrologists said his kidney "isn't that bad". Still waiting on opinions from 2 other specialists. The intensive Dr and the nephrologists were very short with me but the others were more patient explaining things to me. The nurses and charge nurses haven't given me any more trouble visiting and staying with him. I think the one mean one is the one that brought a straight back chair for me to sleep in vs a recliner. Good thing I have some flexibility in my joints. I was expecting to wake up pretty stiff. He's sleeping comfortably. I'm doing a bit better since we are seeing some improvements. I called out of work so far through Tuesday. My vacation time is running out quickly. I'll have to put in for FMLA soon. They do allow it on an intermittent basis which works out well for me. I can't afford to take 3 months off.
I told his kids. We usually text. Not a big deal to one. Said they knew it months ago. The other didn't respond. *sigh* I did my duty by them. The ball is in their hands if they want to fit us into their busy schedule. In the meantime I will try and find something special to do with him each day.
Kim, thank for the update. We hope that he keeps improving and stabilizing. I pray that you get better information additional help and more understanding from the doctors nurses and the family.
Thank you for your prayers. The intensivist has been pretty negative and insensitive. It's difficult for me to speak with him. I can feel we're just another patient rather than people. He was even more curt when I requested a second opinion from an oncologist. He felt we were at end stage for cancer. The specialists say they see improvement but its too soon to tell if he'll pull through. If he does we'll have to treat the cancer (CLL) or he' ll continue to get really bad infections. The oncologist seems to think he can help now with an immunoglobin infusion and then immunotherapy when he is stronger. It has a very high success rate if one makes it through the treatment and is more easily tolerated by older people. 2014 & 2015 they have made huge advances in this type of cancer. We'll see. It's a big if for us but it is a glimmer of hope.
On a positive we enjoyed a movie together and saw a beautiful sunset. I hope all of you had a great weekend with your families.
Seriously, you have been on my mind so much this weekend. I was really glad to hear that you both, despite all the bad news and not good enough contact with others, were able to do something normal and not involving hospital personel and just you both - a movie and a beautiful sunset. I am sure this gave you a small break from all the hustle-bustle of being at a hospital and dealing with that 24/7. I did not expect to hear from you and I thank you for taking the time to let us know what has been going on and that you are still here with us and standing. I hope there is come clarity as to which treatment he can get and you feel good about your decisions.
My weekend was fine enough. Trying to keep the weekends on low-key so I can recharge and get all the "small" things done; Sorens mails read and responded to, cleaning, washing clothes, catching up on household duties. We will get a visit from the Danish Blind Society on Thursday. It will be a series of meetings so we can talk (get advice and help if possible) regarding our future and how we can cope best. It is a totally different world we are stepping into (along with the upcoming dialysis) and we are just starting to grasp the wide scope and consequences this has on our life. I cannot believe this is happening to him and that he will not be able to compose for movies any more (he cannot see what is going on on the screen), he will not be able to drive again and he won't be able to look me in my eyes or face again (this last one is my hurt) among so many other things. He is so brave and never complains and I know it must be terrible. He tells me sometimes he just wants to lay down and die, and could it get any worse. He says it would be different if he were in his 70s or 80s and could say he had lived a long and good life, but he is 53 and his world is now dark and so limited. I feel for him and hurt for him. If any of you have ideas of how to bring a new or brighter perspective (or something that might bring a smile or a nice experience) to this please do not hesitate, it is always good to hear different perspectives. So we will see what happens on Thursday. Tuesday is his first doctor's appt before he gets the fistula operated into his arm for the dialysis. So things are moving forward and we are going with the flow and rolling with the punches best possible. I am in an OK state of mind, so all the above is not complaining, just info.
I hope Kathi and Walt are also doing good. I too, am the biggest animal lover, grew up with animals my entire life and would love to live with cats, dogs, chickens, a couple geese, a goat or two and some horses ( I grew up with horses and riding Western). Hmmm, wonderful. Kathi, are you all packed for Florida? Walt, have you started on the bathroom or are you still helping your neighbor?
This morning I had a wonderful bike ride (no frozen gears for a week nearly now) to work. There was a half moon, stars and clear cold sky. Slight wind and just a hind of a sunrise (it was 06:40 in the morning).
I wish you all a good week, Kim, you are in my thoughts and prayers, both of you.
Hello all. Kim, I, too, thought about you all weekend. I'm glad to hear that your husband is more stable and that you could watch a movie together. It's amazing how big the little things become when your world shrinks.
Michelle, I hope that the meeting with the Danish Blind Society brings Soren some comfort. There is life after low vision, I'm sure. He must be having a very hard time with the loss of his career. I know Dennis did. He's still sad about it. I tell him all the time that I didn't marry him for his kidneys (or his career) and that, as long as he's Dennis, I will love him. As I've said before, it took a couple of years for him to become "himself" again after the devastating infection. Those were very difficult years. I would never have left him, of course, but I admit I thought about it. I never do now. I am happily married. Not everyone gets to experience that.
Soren is now free to compose just because! He doesn't have to follow a movie line. He doesn't have to do it for a living or on a schedule. Can he find any comfort in that kind of freedom? In any case, I wish him (and you) the best this week. At least something is happening that can lead to improvements for him.
Walt, I'm curious about your bathroom project as well. Let us know how it's going. I still have to grout the tiles I placed in our bathroom a couple of months ago. Where is my drive? I've become a frozen lump of laziness this winter. Perhaps you'll inspire me!
I'm not yet packed for Florida but the suitcases are in my room and I have begun digging through my summer clothes. We're both really excited!
Something always seems to happen with projects. Nothing bad. I'm in no rush with the bathroom. I was going to paint the ceiling yesterday and when I moved a different light in there I saw a couple of spots that I decided to spackle. So I did a little more prep on the ceiling and then got a call from the guy I am helping move, that a brake line failed on his car. We spent this morning making that repair. Oh well I'll get back to the bathroom soon. Still have to pick out a few things.
I'm glad everyone had some positive things. The movie and sunset, the meeting with the Blind Society and a nice bike ride to work (no gear problems) and getting the suitcases out and the best part digging through summer clothes. I'll be happy when I'm looking at summer clothes again. Leslie and I and another couple are going to the Atlantic City boat show. No interest in buying a new boat maybe just some equipment.
So I hope the best for all of you and you will all be in my prayers.
I love remodeling projects. Can't wait to hear how it comes out. I've got most of the house updated except for the guest bath and new cabinets in the laundry room. I had to hire out for most of it but Was able to do a few things myself. I white washing the brick fireplace and painting the ugly brass with grill paint was the project that came out the best. Painting the vertical blinds with fabric paint was an epic fail lol. At some point I'll need to get to lowes and replace them.
Michelle Im sorry you both are having to go through that. The blind society sounds like a great resource.
Kathi I didn't make it outside today but it looked beautiful and I think it was 78 in Jacksonville. It should be warmer where you are headed.
My husband is still hanging in there. I didn't bother stepping out to speak with the intensive Dr when he founded with the team. I don't care for his manner so I'll speak with the other drs instead. He did send a palliative care Dr to speak with me. I wasn't ready for that. I shook in fear he would say something horrible too. I made it through. The hematologist reviewed my request to explore options including immunoglobin therapy. Today it showed up. Its a blood product that helps fight and prevent infections. The nurses had never used it before. I hope it helps so he has a chance of getting well and staying well for a bit to get some strength back.
I made some progress today. Still in the prep stage. I found some more I want to smooth out a little. Decided to replace the baseboard with a different style and the color I "thought" I was painting the room seems to have changed. What ever color Leslie wants is fine with me. I use the room about twice a year and she uses it everyday.
I have been extremely lucky with the doctors that have treated Leslie. Not only are they good doctors, up on the newest medications, they are also good people doctors. Each one willing to take the time to answer any questions and taking the time to explain treatments. I just wish you could all have that in the treatments. It makes it easier to deal with some of the most difficult situations. Leslie started on a new medication about a month after it was approved by the FDA. It carries a price of about $7000 a month, but her Oncologist got us into a program that DRASTICALLY lowered the price.
The 78 degrees in Jacksonville sounds nice, we were actually in the low 50's which is great for New Jersey in the beginning of February. Kathi, I'm sure you'll enjoy the sunshine.
WaltK glad your project is comming along. Prep work is tedious sometimes but it really makes a difference in the end result. What is the final color choice?
You are so right about finding Dr good with people as well as medicine. At home he has an amazing heart and kidney Dr. Both take the time to talk to us as people before going into the health issues. At our first appt at the kidney after we met him in the hospital he spent 3 hours with us. Yes you read that right 3 hours. He sawvI never left my husband's side. He saw I was actively involved in his care and that I had worked at learning about kidney disease, treatments, diet etc. He spent the time with us reviewing how the kidney works, what's important on labs, what they mean and how diet certain meds can impact those values etc. I've never had a specialist go out of their way to that degree to give me a crash course so I could be a better care giver. Great Drs are out there.
Well its been a rough week. Two days ago(?) I had to stand up to the intensive Dr. Another medical person during their daily team rounding suggested that the unit would be more beneficial to patients other than my husband. The intensive Dr turned to me and suggested my husband should be in hospice/palliative care. He said we were dealing with end stage cancer and how much was I willing to do. Blast cells were an issue and he would not survive treatment. The next steps were going to be invasive and painful. I was overwhelmed with grief and anger. Anger won. He's not an oncologist. I had educated myself on my husbands type of cancer and did not believe him. I stood up to him professionally and calmly requesting a 2nd opinion on his diagnosis from an oncologist and a review if immunoglobulin would help him through this current issue. He became very defensive but did what I asked. Fast forward yesterday the oncologist ordered the infusion. Today every specialist said they see marked improvement. One said he would be OK with him being moved out of ICU. The oncologist said the cancer is not an issue, does not need treatment, and he does not have blast cells. Wow. How do I get off this emotional roller coaster! He still has issues and a long way to go but we are moving in the right direction.
On another note I called out of work for the next 2 days. I've been using my vacation time so I could stay with him when he hits the rough patches. I let my boss know I'd be filing for FMLA soon as I was close to exhausting my vacation time. He let his boss know. The director told me not to put the time on my record because what I was going through was not a vacation. He is calling payroll and going to try and give me back all the time I already entered, and gave me a contact in the benefits dept that may be able to help. *happy dancing* What an awesome day!
I will also share that after I asked for the second opinion I found a hand written note in our room. It was Corinthians 16: 13-14 it reads "watch, stand fast in the faith, be brave, be strong. Let all that you do be done with love." Thank you all for your kind thoughts, support, and prayers. Today we were blessed. I hope you all had something special in your day that made you smile.
Everybody seems so active and busy and I feel kind of behind on keeping up writing here. First off, if you see this Kathi (don't know which day you were leaving), have a fabulous trip to Florida. Embrace it all and I hope it does wonders for you both in every sense of the word. Just being in the sun and soaking up the sunshine, being away and being together in a different environment, bound to be good. Look forward to hearing about how it all goes. I hope also you get some down time to recharge you own batteries also.
Speaking of batteries, my Gosh, Kim, I do hope you at some point carve out a little time for yourself also. I have never read or experienced anyone as dedicated and involved as you are. I am not trying to diminish the work and committment of all us others, but you seem to go non-stop. I so want you to take care of yourself also, so you can keep taking such good care of your husband. You are doing an amazing job and I admire your effort and difference you are making. I was sooooo happy for you when I read about the vacation days being given back to you - so wonderful!!! So deserved, so happy that someone got it and called that out for you. I hope you can find some info on the benefits and get some things going there too. Keep us posted. And the hand-written note; someone was thinking of you and someone made sure you saw that - wonder who it was. Someone who saw you for you and wanted to let you know. A good day most definately.
Walt, you and your projects are starting to "get to me" - in the sense that I might have to start working on a home project also. In the very very small scale, that is of course. I have never been a handy-man, I can do some things, but maybe this will be a nice challenge and meditative. I have a feeling I better find something that is not to difficult and sure of a small success so I can feel the desire to do another project. My most recent something that I have done (just to show the ridiculous scale I work on project-wise) is that I changed the toilet seat and I changed the headlights on my car. Both things required using my fingers more than eyesight, but I did it and could not believe there are so many things that I have not done before - big and very very small. When are you and Leslie going to Atlantic City? I wish you both and the other couple a wonderful time and an enjoyable boat show.
Today when I got to work the sun was just rising and the clouds were parting, the sun was glorious. I took a picture with my phone and tried to upload it here. Don't know if it will work. I made my self go out on the terrace at work (are are on the 5th floor so lots of rooftops) and sit for 5 minutes, step back, take some deep breaths and just be in the now. The world is a beautiful place and I am lucky to be alive. I read a quote that said something to the effect of " I've never met a strong person with an easy past" How true is that? OK; I could not upload it even though there is an icon above .- it says access denied.
Michelle, I am so happy to hear you be so calm and positive. You inspired me with those beautiful words. We are lucky to be alive and we are strong.
Kim, good for you to force a second opinion. You were right, too, as it turns out. I can't believe what the doctors and nurses say to you in the ICU. Shouldn't they be following your cue rather than foisting their opinions on you about the value of your husband's life? With the strain you're under, it must be really hard to stick to your guns. You're a marvel. I'm so glad that you have a good workplace and that they're willing to help you. It means a lot.
Walt, of course Leslie gets to pick the color. It's her perrogative :-)
I haven't packed yet so tonight's the night. We're leaving Friday morning. Two and a half hour drive to the airport on snowy roads, then the fun begins! So excited!
All of this good news lifts my spirits and makes my heart sing. Many rhanks to you all.
Dennis lost another 3 pounds with this last bout (down to 125) but he seems better now and he'll regain the weight if he avoids another bad bout for a few weeks. He's back to eating like a teenager again. He's excited for Florida, too.
Chiming in with Walt here, have a fab trip, eat, relax and enjoy everything. I hope also he eats and gains some weight. Sounds like he was already starting pre-trip.
Walt, 12 colors, oh my! Guessing by your mails (so I might be wrong), you seem very relaxed about a lot of things and not the kind of man with a mission to get things done in a big rush. So, good for Leslie, with 12 colors to make a decision about... he he. That is alot, hope she can decide. But anyway, great boat show to you.
Kim, we have not heard from you for a bit, I hope you and your husband are OK, maybe you got a little bit of down time for yourself. Thinking about you and hoping things lighten up so you can take a breath and be in yourself instead of constantly being 3 steps ahead.
Thinking of you all, sending lots of good energy your way
Michelle
12 paint colors lol. I hope she has fun exploring all the possibilities.
Kathi enjoy your trip and all the fresh seafood available on the coast.
I was run through the ringer again. Hubby has alot of edema and the fluid went to his lungs. They tried a little too hard with the diuretics and caused an acute issue with his kidney. We were playing it day by day start dialysis with a central line or not. Today his labs came back worse. Melt down. Nephrologist today even with those results seems to think his kidney is trying to recover. On a positive he's more, color is better, vitals stable so they moved us out of ICU to a regular room.
I've been sleeping in a straight backed chair up until 2 nights ago. My ankles swelled to the size of grapefruit. A nurse took pity on me a found a recliner to put my feet up. They feel and look much better than today. I am beyond tired. I'll sleep here tonight and will probably try and go back to work on sunday. The daily commute begins again. I should start feeling a bit better tomorrow. The regular rooms have showers. I can't wait to wash my hair tonight. ICU units don't have showers at this hospital. I also am happy I won't have to deal with the insensitive intensive Dr. The nurses didn't care for his manner either. Those changes should help me get a more restful sleep. Where we go from here is still to be decided. Thanks again for all your thoughts.
Michelle, how did the meeting go with the Blind society?
Kim, I am glad that were able to get a recliner to make sleeping easier and I'm glad that they moved your husband out of ICU and away from that doctor. I still can't imagine having to stay at the hospital (under those conditions) or having to make the long comute after work. My prayers are that your husband continues to improve.
Kathi, you should be warmer by the time you read this and I hope Dennis made the trip with no problems.
Michelle, I hope Soren is doing ok and that the sun rises continue to raise your spirits.
Got to the boat shop today. Leslie was very happy that I didn't by anything big. It was a nice show. Leslie also narrowed the color choices to 4 so things are going normal in our life of painting.
Waltk glad you enjoyed the boat show. Does Leslie enjoy boating as much as you? As far as moving my husband closer that's undecided at the moment. It depends on how much improvement he has. If he can tolerate acute rehab (must be able to do 3 hrs therapy a day) there are only 10 facilities in Fl that are CARF & Joint commission certified for brain injuries. I have one about 45 minutes from home but they didn't accept us. The one in Jacksonville is the largest in the country and very advanced. With 3 discharges due to hospital admissions I'm not sure if they'll accept him again. They next closest is Orlando and Tampa. That's quite a drive as well. I'm OK with that as the alternative is Hospice or Palliative care. If I have to go that direction I would still be looking at 45 min away. Where ever he goes an infectious disease Dr will be consulted to follow him. I don't trust the ones in my immediate area.
Michelle I hope you are having a fabulous weekend.
Kathi did you pack some of that cold northern weather with you. It's about 33 degrees right now and the high is expected to be about 50 Brrrrrr. Lol. Just kidding. You are much further south. The sunsets are beautiful off the west coast. I hope you both enjoy yourselves. Can't wait to hear how your trip went.
Well today didn't really go as planned. I left the hospital @ 8am and got home about 11. The idea was to do a load of laundry, check the mail, check the house and give each kitty a cuddle, leave by 2 to be at work by 3. Well it ended up taking 5 hours to do one load of laundry. User error? It kept stopping just before the spin cycle. Ugggg. I probably could have done it faster with a tub and washboard lol. I made it to work by 7:30. They took me off the schedule for the month until I see what I can do. I'll have to try and get FMLA setup in the next day or so and use it only when I need it that way I can still earn something and the company still pays part of the insurance premium. Work has really been supportive. What a blessing. On top of everything else I'd rather not worry about loosing my job and benefits.
So I happened to catch a glimpse of the TV while at work. I had no idea who was in the Superbowl or many other current events. My world has been centered on one thing and one thing only for the last 5 months. Feb 13 we will have been in the hospital for 6 months. We've missed so much but what we've gained is so much more. We're closer. His face lights up each time he sees me. It's what keeps me going. Tomorrow he has a stress test to check his heart. He passed the last one with flying colors. Things are different now but I'm still praying for a repeat performance.
So nice to read your posts this morning. It made me happy to hear about what you both are up to and moving in a forward fashion.I hope that keeps up and you both have nice experiences.
Me, I am kind of in a rut. He is not in the hospital and nothing acute or life-threatening is happening right now, but I am in a rut. I am just dealing with all these things and can't seem to get on top and feel OK about things. I wish I could explain it better. I just feel so exhausted, blue, sluggish and such low energy. I wish I could shake it off, I am trying to go with the flow and roll with the punches, but I am not walking the talk. My husband is so sick with his kidneys (and just getting over a bout of pnuemonia) and he is throwing up (kidneys) several times a day, lives off youghurt and doctor-prescibed protein/calorie drinks that they give cancer patients because he can't keep anything down, just lays on the couch all the time looking ill with his eyes closed because he cannot see anything and has no energy. I think he talked to me about 15 sentences all weekend. He is just tired and sick. It is so hard. Poor man, it would be so different if he only had one thing, but this health crisis has been long and mean; heart failure/bypass, diabetes now bad, kidney failure moving on to dialysis and now blindness - all in two years. It is a lot to take in. I think the blindness is starting to sink in and it is a big thing, life-changing forever. You don't know how big until you are in it.
I guess there are just periods of downs and ups and this one is lasting a bit longer than the last one. I do get inspiration for your mind-set Kim and Walt. I am sorry this is going to be a shorter mail. I am at work and just getting through my days. I have cried two days last week back and forth to work on my bike, for some reason that is where/when I cry. I did not cry today. I also took the dog to the park yesterday morning and it felt wonderful to be out in nature and see green and trees and a different type of quiet.
Kim, the first hour consultation with the Blind Society went really good. They have some resources that will help us down the road and we signed up for a 3 day blind course - for lack of a better word, (how to manage in your everyday life, how to move forward in life, how to get around outside, in the house etc etc etc), This will be in late March and I think it will be a good thing.
Walt, so glad the boat show was good, and that Leslie is done to four colors now :-) That did not take long to get there. What else is going on over in your neck of the woods, how are the cats and do you have other projects lined up? Do you spend a lot of time out on the water when the weather is good? I apologize if you have already mentioned it, but are you an avid fisher?
Kim, FMLA set up soon gets into place, so happy to hear that your workplace is understanding and trying to help you some. There are so many aspects you have to take into consideration and make decisions constantly. Your stamina is amazing. I send you good energy. I really hope he passes his stress test again with flying colors, it will bring you both such relief and happiness. Ha ha, yeah, Superbowl, there are so many things I am not aware of and then when I do become aware of them I realize that life just keeps going on and on and that is a good thing, but I am living in an alternate bubble. I don't feel connected to how things are for most people and all the noise, distraction, commercialism and horns ands whistles of everyday life.
Kathi, is it time to welcome you and Dennis back? How did everything go? Was it as good as you hoped? Did you experience some nice things, did you get some good down time in the sun?
I better get back to work, sorry to rain a bit here.
Kathi, I do hope that you and Dennis had a good time. I am sure it was a much needed break.
Michelle, you know that at different times we have be in a rut. The times where it seems we can't climb out. Is there anything that Soren might have an interest in to pass the time? Whether it is listening to music or perhaps there might be some TV for the visually impaired which gives a verbal description of what is happening on screen. See if there is a special food that would interest him. Leslie found much joy in banana milkshakes (which also gave her needed Potassium). When things weren't going well I would get her a milkshake and it calmed her down and made her day a little brighter. The 3 day "blind course" sounds extremely helpful. Sometimes when am stumped or frustrated of the way things are going, I stop for 30 seconds, take a couple of deep breaths and try to picture something peaceful in my mind. I know this doesn't really help solve the situation, but for me , it calms me down a little bid so I can procede with what needs to be done.
Kim, I wish that there was a better solution for the hospital loction problem. It is wonderful that the people you work with are handling it the way they are. I am so glad that your husband lights up when he sees you. Good luck with the stress test.
Leslie enjoys boating very much. We actually bought the house on the water a year before we got married because it was available and we didn't want to lose the opportunity to be on the water. I taught Leslie to drive the boat (she does an excellent job) so I had someone to tow me watersking. It has been more difficult the last few years, but we still use the boat.
I think I know what color she wants the bathroom painted but there are still three colors hanging on the wall. SOON.
Michelle I hear you. Living in a bubble and the realization things will never be the same, and the struggle to learn how to manage the new way of life. I'm sorry to hear he is feeling so poorly. I hope there is something the Drs can do to help improve how he's feeling until treatment starts. That's great the Blind society meeting went well. I'll look forward to hearing how the class goes. It's certainly something to look forward to. The tips they have may make things a bit more manageable for you both.
Walt it must be so relaxing living on the water. Watersking! That sounds like alot of fun. Tubing down a lazy river is about all Im brave enough for as far as watersports go. We're not too far away from the water. We have a river and a large spring within walking dicstance. We used to go and have picnics. The beach is a couple hours to the east and 30 min to the west. One of the beaches was accessible. They had a wheelchair with huge tires that could be rolled on the beach to the waters edge. What a workout for me but it was worth it.
Still no sign of the kids since this admission. The son got back in town and has already left again. They asked how he was because they wanted to visit. He was improving so the next message was that the son always gets sick when he's been out of town. He now has a cold so he's going to go out of town again. Hmmmm. The daughter sent me text asking how he was. She is still to busy to visit. It's exhausting visiting her grandmother and grandkids. I don't even share with them anymore. If they ask a specific question I'll answer it but that's it. I just don't feel that we have any importance to them so why expend the energy.
My husband didn't like the test yesterday. He's claustrophobic. While it's not in a tube it felt that way to him. I felt bad I didn't ask enough questions so I could prepare him for it. He's had them in the past but they did it differently. I assumed it would be the same. He was so sad when I saw him during a break in the test. We're still waiting for the results and then I'll he'd into work. I'm still trying to get FMLA set up but they want dates. Not sure how to manage that. I don't know when the next crisis will be. The general consensus is to expect multiple hospitalizations. I've got to stretch the benefits out as far as I can.
One of my neighbors through me for a loop the other day. They know how bad things are and I'm rarely home. They send cards which is thoughtful. Well they called because they are having tree work done and want me to get rid of one of my trees as well. $450. Lol. It's not that big of a tree but they have to take a fence down to get to it. Bad timing neighbor. I have no idea what bills will soon be rolling in and if I'll be missing some pay checks. They say its dead. Well see. I suspect its just shading their grass. When they moved in couple years ago they asked me to move a very large picket fence over 1 inch. There's over 30 posts on that side. It's grandfathered so it stayed but still. They moved in and then started calling the city and other neighbors about things they wanted us all to fix. Craziness I tell you. I try and avoid that neighbor. If it dead I'll take care of it later before hurricane season and after I get my tax refund.
Hope you are all staying warm and find something to make you smile today.
I hope this post reaches you all doing good today. I just wanted to say Hi!, I am still here and I am thinking of you Kim, Walt and Kathi. When I get into a rut I have to pull myself together to do things other than my daily have to dos (work, helping Soren, shopping, getting everything else organized, etc etc). I slip on the meditation, reading for my pleasure (books of my choice), writing in a diary or on this forum, taking longer walks, being social with friends and doing outings etc. I do not know what takes over me. I just get kind of introverted and feel tired and so forth. I am not writing this so you will write back with words or suggestions etc, I just want to let you know why I have written a lot previously and on a more stable pattern and now not really being engaged and consistent. I will get through this, things are just sinking in and I am wading in lots of muck emotionally and doing so many things (I am sure you know how this part is) and getting so many things in order and having to do everything for 2 people instead of just myself. It takes a lot out of you during certain times.
Kim, I so wish your husband's kids did more and were there more. I am amazed at their lack of engagement in his and your well-being. I am glad you don't feel obligated to do more than answer their questions and keep your energy focused on your husband. Things will hopefully be better or more fixed when the FMLA gets up and running. I also hope you resolved the tree issue and not have to pay 450 dollars. Not much understanding for what is going on in your world.
Walt, has it gotten to the last two (or maybe even final one) color? Has a decision been made and if so, what color did it end up being? How are you doing and what have you been up to lately? When does your boat get out on the water, is it docked during the entire winter? How is Leslie doing?
I am going to the psychologist today for the first time in 4½ weeks, I think it will do me good. I only sleep about 4½ hrs each night, so it always starts taking a toll on my mind/body. I am just working and getting through the days.
All of you, please take care and you are in my prayers
When Leslie was in the hospital and after she got out and was going through rehab I let people know how she was doing by giving daily E-mail updates. I had two groups of people which consisted of Leslie's family and friends and my family and friends. I gave themthe information I had from the doctors and her general condition. I figured if anyone wanted to visit or call they knew what to expect. I don't text (I know I'm old school) so the E-mails worked very well. That let everyone participate as much as they wanted. Like most families there wasn't a lot of participating or help offered, but at least I wasn't interupted (or bothered) with phone calls when I was in the middle of helping Leslie or stuck in traffic on my way to the hospital. I guess each family member of friend has to decide if they want to help or just go through the motions.
The tree situation and especially the fence situation is terrible. I hope that goes smoothly.
I am sure Leslie has chosen a color "Ground Fog" which is in the silver/gray family. Now we have decide on a carpet color (that is actually easier) to go with the paint. There is no shower so carpet is a safe choice. Once I pick up the carpet and paint I hoping for a two day turnaround to get it done. I'm still in no rush as I'm down the steet a lot helping the neighbor get ready to move.
I usually put the docks back in the water late March or early April and the boat goes in any time after that. I get my early boating fix with the canoe, kayak or rowboat.
Hello All
Kim, I was feeling so many things while reading your post. I cannot believe how much you are doing and what you are subject to. You are doing an incredible job and I am sorry to hear that there is not more support around you and help so that you can give yourself a break every now and then. What I read from your post makes you look like a super-person, I cannot believe you are still standing upright. I wish I could help you and I hope more help/relief comes your way. Even though we are all in very different locations, please know that we are caregivers here that care about each other and offer an ear and support as best we can. I hope you encounter doctors with a better sense of being around you as a spouse and not say insensitive things. I hope you come out of fight mode so you can recharge your own batteries so you can carry on. I was also in fight mode for so long, and tend to relapse back into it when I encounter something big, bad or unknown. I am glad that you have kitties around you too. I love animals and they are always such a sense of unwavering love and presence.
Kim, you are doing something that demands so much energy, love, dedication, tolerance and patience. Remember to be good to yourself and give yourself a breather (as you did yesterday) once in a while. I know it is hard to know when to stop up when you are on your own and slow down for a day. I hope you can use this forum and our ears/support.
Walt, I hope your muscles are doing fine after the massive snow shoveling! J This seems to have been a huge storm and things are slowly going back to normal, step by step. I guess it gives a lot of time on the Cardio Strider?
I am going back to bed, got a cold yesterday, but I had to write after reading Kim’s post, just to say “Hey, we are out here, you are not alone and you are doing an amazing job.”
Thank you also for the Davita information. I will definitely look further into this great website and get all the help online possible.
Best wishes
Michelle
Welcome Kim. I hope you find some solace here. I have. Your story is heart wrenching. I have been through through what you sufferered in the earlier years - kidney failure, COPD, cancer scares (2 of those), increasing neuropathy, something called monoclonal gammopathy, single income.
We have dealt with all of this pretty well and we lead a mostly normal life as you did. But your last fight sounds truly frightening. The level of care required is unbelievable for a person with a full time job. And he is so very ill. How can you commute such a distance almost every day and still have a life at all? I can relate to "the fight" keeping you going but you'll need to take breaks, won't you? No one can go on like you are now. My heart goes out to you and to your husband. He is very lucky to be so loved.
You already know, I guess, that families and their peculiar reactions to serious illness, are a frequent topic of discussion on this site. You probably should not rely on them. I know you're researching everything and I hope you can find a solution that will let him come home with full-time care (while you're at work, at least). I'd be interested to know what you find out.
Walt, mind your shoveling! Leslie needs you to be healthy, Can you find a local kid to help?
Michelle, oh, Michelle. I'm so sorry that you're having to watch Soren go through this. I have glaucoma (normal pressure glaucoma) and have already lost 50% of my vision so I fear blindness in a very real way. I rely on denial where that's concerned. I take my drops and surgeries and pretend that this will not progress. My fingers have stopped typing because I really don't even know what to say. I am SO afraid that Dennis will be gone too soon and I'll be left blind and alone. Terrified, in fact. I can't believe I'm saying this out loud.
OK, I'm useless now. Back to work.
Kathi
Hi All
I am being careful shoveling. It feels like I'm in cross training......Cardio Strider---Shovel.....Cardio Strider---Shovel. I am doing it in a reasonable way. I'm done 99%. Just a little clean up and let the sun finish the job.
I hope everyone is doing the best they can in their respective situations.
Kim, you mentioned that you want to learn how to move your husband easier. I don't know if it is possible, but if you went to a local ambulance station or fire station they might take the time to show you the easiest (proper) way to move him for the different things you have to do.
The cats are happy that I shoveled paths for them and the birds are glad I did paths over to the feeders.
I hope eveyone gets some rest tonight.
Walt
Hello to you all
Kathi, what a good thing to be honest and put words to your fear. I can imagine that they are very real and scary. I am sorry that you have this fear and that it is tangible. Thank you for your honesty and trusting us to write that. I think we are all experience fears and frustrations that others here on the forum can see, feel and understand, it is just hard not being able to offer help or support that could make things better. That is how I feel at least. I wish I could do more than just read and reply. But I feel for you and my heart goes out to you and I have you both in my thoughts and prayers.
I too am going through some major issues as of right now. Finally they called Soren in for the first appt for getting the fistula placed in his arm. After the initial appt they will call him in for the operation. It is about time. I feel he is slipping through my fingers; he is so exhausted that he sleeps all the time, nods off every 10 minutes, has nothing to say and is just passive. I feel the weight of the world on my shoulders right now trying to get him to eat and he cannot keep it down (bad if you have diabetes), I feel like he just sleeps and throws up alot. He cannot see anything so he just sits on the couch and his personality is changing (they say this is normal when the wastes are not being rinsed in the kidneys), he is lethargic and exhausted. Plus trying to get everything else in the household to hang together and him to his multiple appts etc etc. I just feel so alone and especially with him not being here with me emotionally. I feel like I am living with a stranger.
I am sorry just venting and nothing else. I had to get it off my shoulders, I have been crying a lot today and I wish it would stop. Boy, the trials and tribulations we go through.
take care everyone, be good to yourselves.
Best wishes
Michelle
Geez, you guys. I don't know how you do it! I hope I have your strength and DETERMINATION when I'm faced with such dire circumstances. My life seems so simple by comparison.
Dennis and I are going to Florida for a few days next week. I talked to our hostess. She's filled our schedule with fun things to do. Dennis will not be able to keep to that kind of schedule. But we're used to that now. He'll just bow out when necessary and rest. I explained that to her and she seems OK with it. She's a dear friend (from high school) and she will be flexible. He's been very sick for about 5 days now (constant throwing up, fever, ...) but we're hoping he'll be better before we leave. If not, his doctor will give him some anti-nausea medication that's safe to take for a day or two. He's used that before to get through something he really wants to do. It's bad for the liver, though, so he can't use it often.
Keep the faith, my friends. You are so strong.
Kathi
Kathi, I hope you and Dennis have a great time. You did pick a good time of year. We are not overcrowded yet with spring break travelers yet. My husband and I found quite a few things to do even with the mobility issues. It was really cold a few nights ago 28 degrees Brrrrr. I'm a Florida native and was not thinking nice thought of mother nature to do that to us LOL. Today it's warmer but overcast. Thanks for the heads up on the anti nausea meds. WHen they switched my husbands feedings (on a peg tube) from continous to bollus (sp?) he didn't tolerate it very well and was giving meds with each feeding. Sometimes I wonder if he really needs all the meds he's on or if they all got added because to counteract a side effect from another drug creating a vicious cycle. What part of the state will you be visiting?
Michelle I though of you today when I remembered what you said of morning the loss of what was. I think we may be close in age. I'm 48 and my husband is 82. We've been together 32 years and our 30th wedding anniversary is in July. I had a melt down in a store today. I stayed home last night for an early morning hair appointment. My husband insisted I get it done. I stopped at a store to try and find a couple pairs of pants for work as mine are almost past their useful life. I passed the evening gowns and it hit me. We usually go see Andrea Boccelli for Valentines Day and that's where we usually went to get something special to wear. We had a great time planning our special night out as we didn't do it very often. He doesnt like this entertainer but he tolerated it for me. He did enjoy our shopping trips though. I have a dvd he released of a show so maybe we could do that this year, to have some semblance of normal, but I started crying in the store and haven't stopped even now as I type. I just try and suck it up, stuff a sandwhich in, breathe, find a chore and the tears still keep rolling. Hopefully I'll get past it before I start driving. I need to leave soon to get back to the hospital. I'm just waiting for the clothes to dry and I'll vaccuum out the van before I load it up again. I suppose the first few times one is exposed to things it's the hardest. I'm either on the road, at the hospital, or at work so I'm not in the flow of life so to speak. I rarely even go the the grocery or drug store. I'll have to learn to hold it together better when I see a couple happy growing old together or doing something fun or .....there are too many things..too many emotional triggers.
Walt I read you are an electrician. I've been trying to learn about that. I enjoy learning and I tackle something new each year. Electricity and radio waves is not a subject that comes easy to me but I'm trying. I passed my first hurdle in April when I earned my ametuer radio technicians licence. When things settle down I'll try for my general license. A neighbor is going to teach me to build an antenna and hook it up to the house. Let's hope we calculate everything correctly so I don't burn the house down. I was pretty proud when I was able to build the connections to attach the wires. Something very simple but it was greek to me when I was reading how to do it. I joined the MERT team (a volunteer mobile emergency response team through the emergency operations center) and they've been helping me along. I figured if we ever needed to go to a special needs shelter I could get assigned there get help for my husband and I could still be of help to others as well. The team helps facilitate communications during many different types of events It's especially valuable when traditional communications fail such as during hurricanes. Silly me also joined the CERT (community emergency response team). Not bad programs. I learned triage, first aid, wound care, how to help first responders, updated my cpr/aed etc.I can use the HAM radio for that as well. Ultimately I may end up in wilderness search and rescue. I enjoy being out in the woods. Alas most of that is on hold for now. The radio in the car does come in handy so I have people to talk to while I'm driving. It makes the drive a little more bearable and helps keep me awake.
Hi all
To me it sounds like all three of you ladies are SUPERWOMEN. I have gone through some rough patches over the years with Leslie juggling work and care giving. Being retired takes a major slice out of the pie. As Leslie progressed and is back to a "normal" situation my job has gotten somewhat easier. Of course I am still on full alert to make sure there are no symptoms that go unseen. If she sneezes too much or coughs or has a bloody nose (brought on from the drugs) I try to make sure it isn't anything new or bad happening to her. I have to praise all of you for the constant care that you give and all the frustrations and road blocks that you have to overcome.
Kathi, I hope you have a great time in Florida and it is nice that your hostess understands the situation to know that Dennis won't be able to be on the go all of the time.
Kim, I wish there was a way that you didn't have to make that long journey as often as you do. It takes so much of your time and energy. Please try to recharge as often as you can. That's great that your are into Ham radio. You tube has quite a lot of sites showing antenna builds.
Had to stop writing this and feed the cats. Two of them were giving me the evil eye. A small (gray) cat, a medium (brown) cat and a large 22 pound (white) cat. They all get along well. So I refilled the bird feeders while I was up.
Michelle, I pray that everything goes well on the journey into dialysis with Soren.
I don't "know" any of you ladies other than this forum, but please know that I think the world of you and I am positive that all of your husbands would say THANK YOU.
Walt
Hello All
I got so happy reading all the posts, they always give me hope and a feeling og belonging while sailing around in often unchartered territories. Kim, thank you for all your thoughts and reflections. I could so relate to what you wrote. I am sorry you got so sad yesterday. I get those too, not often, but when I do cry, I do big time. But I also think it is important and a release. Letting go of pent up energy, frustration and sorrow.
Yes, I am 46 and my husband is 53. We did so much together (travelled to 19 countries, went to concerts - mostly classical, and did lots of stuff together and also apart). Everything changed when he got sick and it has all been such a slippery slope since.
We are all in a situation that we do not know what the future will bring, and we all know that these are not the paths we would have chosen, had we been given a choice. We are all coping in such extreme situations and doing many things on our own. I have hours where I am so proud of myself and everything I am doing/learning/evolving and managing. Then with a swoop of a word, discussion with a doctor or something as ridiculous as a commercial or a story of something sad, off I go into despair and being sad. The roller coaster of the emotions have really been a surprise for me. Luckily I know it is there and accept it as best I can, but sometimes I do just wish for some more stability and longer periods of no surprises or changes.
It is so nice to come here and read your posts, all of you. Thank you for all your advice and words of comfort. It makes a big difference in my day-to-day. I am so glad that we are all on the same page, but not on all the same dips and hills. I am so glad to hear that Kathi and Dennis will be going to Florida, I wish you the best trip with lots of sun, laughter and easy days. How wonderful! I hope that one day next summer Soren and I can go to CA to visit friends and family. That is my big goal for future trip and all the dialysis will be doable. I will also be better equipped with the blindness and that is just the way it is. Kathi, also thanks for the nausea med info, I will see if Soren can get that too. Kim, sounds like such a good idea with the video to re-create an experience that has given you both happiness in the past and can now give a sense of normalness and joy. I am blown away by all the extra courses you have taken and I would love to try the MERT and CERT. You seem extremely resourceful and capable of an amazing spectre of abilities. I admire that! Walt, I am also so glad that there is stability for Leslie and you now and things seem to be in a good groove. Even though things are in a "normal" situation, I am sure you are ever-vigilant and always with one eye and one ear open. I wish you so much more stability and improvement with Leslie's health. How is her strength and is she and you enjoying the Cardio Strider more? I am always enjoying reading your posts with the latest updates of kitties giving you the stink-eye, house projects,thoughts on other things also etc and it is also so good to get a man's point of view in this situation(s). Evens things out. I appreciate it and thank you for all your words of support and input.
I so appreciate all of you and thank you for your posts.
Wishing you all a wonderful day
Michelle
Well said, Michelle. I, too, appreciate Walt's perspective and stability. We need you, Walt!
I have a big cat who is getting smaller as he gets older. And Dennis has a rat terrier named Jude (the dude). The rest of us in the house are mere accessories to Jude. Dennis is all that matters. The dog has been a real boon to Dennis. It sounds silly, but they are very close. Jude gives Dennis a reason to get off the couch 10 times a day and he LOVES Dennis. Winters are hard on Dennis mostly because Emily is in school and the neighbors are indoors. He feels very isolated. If it weren't for the dog, he'd sink into depression. For that, I love Jude even though he barely acknowledges my presence unless Dennis is out.
Today is a good day. I'm happy. I think that's because I started the day by reading your posts. You do make me feel so much more supported and understood.
latteHunter, (do you have a name?), we are going to Ft. Myers. That's also where we plan to be snowbirds when I retire. That is, unless we win the HGTV Dream Home :-).
Kathi
Hi All
Pets (at times) seem to be able to calm people down and raise their spirits. Leslie and I have had many cats over the years. They find us and show up at our door. We start feeding them and they become part of the family. I love all animals, but cats were the easiest to deal with when we were both working. A couple times a week I'm down at a neighbors house letting him out to do his thing.
Kim the idea of the DVD of Andrea Boccelli is brilliant. It is something really special that the two of you share and you are making it special. I've seen him live once and he is an amazing entertainer. I will use that idea of special times shared to try to come up with things for Leslie so she will remember the special times that we have shared together. Thanks for sharing that. It should be on every care givers to do list. By the way if you are using a 2 meter rig in your car and you want to make a home antenna for it, it only has to be 19.1 inches tall. Very simple to build from scrsatch.
Leslie has been using the Cardio Strider every day (me too) and is doing very well with it. I haven't been doing much around the house, but I have been helping a neighbor get his house ready so he can move. His next door neighbor is buying it and I have been upgrading the electrical system and helping him get rid of a lot of trash.
Michelle, I hope the weather is better and the gears on your bike aren't still freezing up.
Kathi, my prayers are with on the trip to Florida. I'm sure it will brighten Dennis's spirits. Like you said winter is a slow time for seeing neighbors or just going outside. The days are getting longer and I hope that the sunshine fills your hearts.
Walt
We're with you, Kim. I hope things are calmer this morning.
Kathi
My prayers are with you too.
Walt
Kim, I spent a lot of time last night thinking of you and praying for you and your husband. I hope things are on an up swing.
Walt
Kim
Please keep us updated when you get the time. My thoughts and prayers are with you too. I just read your post, just got online and had to send you a post, so you know we are here sending you energy, prayers and good thoughts. I am so sorry you have to go through this and are doing it alone.
I hope his condition has stabilized and gotten a little better. I also really hope that the people/staff at the hospital are stepping up to help you be there and feel a bit of comfort and space to be there with him.
I don't have anything else to say/write, I feel so much and can convey so little, feeling helpless and wish I could do more. I am sending you a big hug and may there be light for you.
Michelle
Kim please know that although we cannot be there with you in the hospital, we are there in our prayers and in our spirit.
Walt
Kim, thank for the update. We hope that he keeps improving and stabilizing. I pray that you get better information additional help and more understanding from the doctors nurses and the family.
Walt
Hello All and Kim, thank you for the update
Seriously, you have been on my mind so much this weekend. I was really glad to hear that you both, despite all the bad news and not good enough contact with others, were able to do something normal and not involving hospital personel and just you both - a movie and a beautiful sunset. I am sure this gave you a small break from all the hustle-bustle of being at a hospital and dealing with that 24/7. I did not expect to hear from you and I thank you for taking the time to let us know what has been going on and that you are still here with us and standing. I hope there is come clarity as to which treatment he can get and you feel good about your decisions.
My weekend was fine enough. Trying to keep the weekends on low-key so I can recharge and get all the "small" things done; Sorens mails read and responded to, cleaning, washing clothes, catching up on household duties. We will get a visit from the Danish Blind Society on Thursday. It will be a series of meetings so we can talk (get advice and help if possible) regarding our future and how we can cope best. It is a totally different world we are stepping into (along with the upcoming dialysis) and we are just starting to grasp the wide scope and consequences this has on our life. I cannot believe this is happening to him and that he will not be able to compose for movies any more (he cannot see what is going on on the screen), he will not be able to drive again and he won't be able to look me in my eyes or face again (this last one is my hurt) among so many other things. He is so brave and never complains and I know it must be terrible. He tells me sometimes he just wants to lay down and die, and could it get any worse. He says it would be different if he were in his 70s or 80s and could say he had lived a long and good life, but he is 53 and his world is now dark and so limited. I feel for him and hurt for him. If any of you have ideas of how to bring a new or brighter perspective (or something that might bring a smile or a nice experience) to this please do not hesitate, it is always good to hear different perspectives. So we will see what happens on Thursday. Tuesday is his first doctor's appt before he gets the fistula operated into his arm for the dialysis. So things are moving forward and we are going with the flow and rolling with the punches best possible. I am in an OK state of mind, so all the above is not complaining, just info.
I hope Kathi and Walt are also doing good. I too, am the biggest animal lover, grew up with animals my entire life and would love to live with cats, dogs, chickens, a couple geese, a goat or two and some horses ( I grew up with horses and riding Western). Hmmm, wonderful. Kathi, are you all packed for Florida? Walt, have you started on the bathroom or are you still helping your neighbor?
This morning I had a wonderful bike ride (no frozen gears for a week nearly now) to work. There was a half moon, stars and clear cold sky. Slight wind and just a hind of a sunrise (it was 06:40 in the morning).
I wish you all a good week, Kim, you are in my thoughts and prayers, both of you.
Michelle
Hello all. Kim, I, too, thought about you all weekend. I'm glad to hear that your husband is more stable and that you could watch a movie together. It's amazing how big the little things become when your world shrinks.
Michelle, I hope that the meeting with the Danish Blind Society brings Soren some comfort. There is life after low vision, I'm sure. He must be having a very hard time with the loss of his career. I know Dennis did. He's still sad about it. I tell him all the time that I didn't marry him for his kidneys (or his career) and that, as long as he's Dennis, I will love him. As I've said before, it took a couple of years for him to become "himself" again after the devastating infection. Those were very difficult years. I would never have left him, of course, but I admit I thought about it. I never do now. I am happily married. Not everyone gets to experience that.
Soren is now free to compose just because! He doesn't have to follow a movie line. He doesn't have to do it for a living or on a schedule. Can he find any comfort in that kind of freedom? In any case, I wish him (and you) the best this week. At least something is happening that can lead to improvements for him.
Walt, I'm curious about your bathroom project as well. Let us know how it's going. I still have to grout the tiles I placed in our bathroom a couple of months ago. Where is my drive? I've become a frozen lump of laziness this winter. Perhaps you'll inspire me!
I'm not yet packed for Florida but the suitcases are in my room and I have begun digging through my summer clothes. We're both really excited!
Kathi
Something always seems to happen with projects. Nothing bad. I'm in no rush with the bathroom. I was going to paint the ceiling yesterday and when I moved a different light in there I saw a couple of spots that I decided to spackle. So I did a little more prep on the ceiling and then got a call from the guy I am helping move, that a brake line failed on his car. We spent this morning making that repair. Oh well I'll get back to the bathroom soon. Still have to pick out a few things.
I'm glad everyone had some positive things. The movie and sunset, the meeting with the Blind Society and a nice bike ride to work (no gear problems) and getting the suitcases out and the best part digging through summer clothes. I'll be happy when I'm looking at summer clothes again. Leslie and I and another couple are going to the Atlantic City boat show. No interest in buying a new boat maybe just some equipment.
So I hope the best for all of you and you will all be in my prayers.
Walt
I made some progress today. Still in the prep stage. I found some more I want to smooth out a little. Decided to replace the baseboard with a different style and the color I "thought" I was painting the room seems to have changed. What ever color Leslie wants is fine with me. I use the room about twice a year and she uses it everyday.
I have been extremely lucky with the doctors that have treated Leslie. Not only are they good doctors, up on the newest medications, they are also good people doctors. Each one willing to take the time to answer any questions and taking the time to explain treatments. I just wish you could all have that in the treatments. It makes it easier to deal with some of the most difficult situations. Leslie started on a new medication about a month after it was approved by the FDA. It carries a price of about $7000 a month, but her Oncologist got us into a program that DRASTICALLY lowered the price.
The 78 degrees in Jacksonville sounds nice, we were actually in the low 50's which is great for New Jersey in the beginning of February. Kathi, I'm sure you'll enjoy the sunshine.
I hope today was a positive day for all of you.
WaltK
Hello All,
Everybody seems so active and busy and I feel kind of behind on keeping up writing here. First off, if you see this Kathi (don't know which day you were leaving), have a fabulous trip to Florida. Embrace it all and I hope it does wonders for you both in every sense of the word. Just being in the sun and soaking up the sunshine, being away and being together in a different environment, bound to be good. Look forward to hearing about how it all goes. I hope also you get some down time to recharge you own batteries also.
Speaking of batteries, my Gosh, Kim, I do hope you at some point carve out a little time for yourself also. I have never read or experienced anyone as dedicated and involved as you are. I am not trying to diminish the work and committment of all us others, but you seem to go non-stop. I so want you to take care of yourself also, so you can keep taking such good care of your husband. You are doing an amazing job and I admire your effort and difference you are making. I was sooooo happy for you when I read about the vacation days being given back to you - so wonderful!!! So deserved, so happy that someone got it and called that out for you. I hope you can find some info on the benefits and get some things going there too. Keep us posted. And the hand-written note; someone was thinking of you and someone made sure you saw that - wonder who it was. Someone who saw you for you and wanted to let you know. A good day most definately.
Walt, you and your projects are starting to "get to me" - in the sense that I might have to start working on a home project also. In the very very small scale, that is of course. I have never been a handy-man, I can do some things, but maybe this will be a nice challenge and meditative. I have a feeling I better find something that is not to difficult and sure of a small success so I can feel the desire to do another project. My most recent something that I have done (just to show the ridiculous scale I work on project-wise) is that I changed the toilet seat and I changed the headlights on my car. Both things required using my fingers more than eyesight, but I did it and could not believe there are so many things that I have not done before - big and very very small. When are you and Leslie going to Atlantic City? I wish you both and the other couple a wonderful time and an enjoyable boat show.
Today when I got to work the sun was just rising and the clouds were parting, the sun was glorious. I took a picture with my phone and tried to upload it here. Don't know if it will work. I made my self go out on the terrace at work (are are on the 5th floor so lots of rooftops) and sit for 5 minutes, step back, take some deep breaths and just be in the now. The world is a beautiful place and I am lucky to be alive. I read a quote that said something to the effect of " I've never met a strong person with an easy past" How true is that? OK; I could not upload it even though there is an icon above .- it says access denied.
I wish you all a wonderful day.
Michelle
ha ha didn't work, have to use your imagination :-)
Michelle, I can picture that beautiful sunrise. Thanks for that.
Kathi, enjoy the sunshine in Florida.
Kim, if your husband continues to improve is there any chance that he could be moved closer to home? The note was wonderful.
I'm going to try to get Leslie to pick out a color and a toilet and I'll continue the prep work. Going to the boat show tomorrow.
Good wishes to all.
WaltK
Michelle, I am so happy to hear you be so calm and positive. You inspired me with those beautiful words. We are lucky to be alive and we are strong.
Kim, good for you to force a second opinion. You were right, too, as it turns out. I can't believe what the doctors and nurses say to you in the ICU. Shouldn't they be following your cue rather than foisting their opinions on you about the value of your husband's life? With the strain you're under, it must be really hard to stick to your guns. You're a marvel. I'm so glad that you have a good workplace and that they're willing to help you. It means a lot.
Walt, of course Leslie gets to pick the color. It's her perrogative :-)
I haven't packed yet so tonight's the night. We're leaving Friday morning. Two and a half hour drive to the airport on snowy roads, then the fun begins! So excited!
All of this good news lifts my spirits and makes my heart sing. Many rhanks to you all.
Dennis lost another 3 pounds with this last bout (down to 125) but he seems better now and he'll regain the weight if he avoids another bad bout for a few weeks. He's back to eating like a teenager again. He's excited for Florida, too.
Kathi
Leslie picked out the toilet. We have narrowed the choice of colors down to about 12.
WaltK
Om my, Walt, I can see why you'd rather just pick a color yourself. That made me laugh out loud!
I'm packed and on the edge of my seat. It's just 4 degrees here this morning so Florida seems better than ever.
Kathi
Kathi Ihope you have a safe enjoyable trip tomorrow.
I hope everyone else is doing okay.
WaltK
Hello Everybody
Chiming in with Walt here, have a fab trip, eat, relax and enjoy everything. I hope also he eats and gains some weight. Sounds like he was already starting pre-trip.
Walt, 12 colors, oh my! Guessing by your mails (so I might be wrong), you seem very relaxed about a lot of things and not the kind of man with a mission to get things done in a big rush. So, good for Leslie, with 12 colors to make a decision about... he he. That is alot, hope she can decide. But anyway, great boat show to you.
Kim, we have not heard from you for a bit, I hope you and your husband are OK, maybe you got a little bit of down time for yourself. Thinking about you and hoping things lighten up so you can take a breath and be in yourself instead of constantly being 3 steps ahead.
Thinking of you all, sending lots of good energy your way Michelle
Kim, I am glad that were able to get a recliner to make sleeping easier and I'm glad that they moved your husband out of ICU and away from that doctor. I still can't imagine having to stay at the hospital (under those conditions) or having to make the long comute after work. My prayers are that your husband continues to improve.
Kathi, you should be warmer by the time you read this and I hope Dennis made the trip with no problems.
Michelle, I hope Soren is doing ok and that the sun rises continue to raise your spirits.
Got to the boat shop today. Leslie was very happy that I didn't by anything big. It was a nice show. Leslie also narrowed the color choices to 4 so things are going normal in our life of painting.
WaltK
Hello Kim and Walt
So nice to read your posts this morning. It made me happy to hear about what you both are up to and moving in a forward fashion.I hope that keeps up and you both have nice experiences.
Me, I am kind of in a rut. He is not in the hospital and nothing acute or life-threatening is happening right now, but I am in a rut. I am just dealing with all these things and can't seem to get on top and feel OK about things. I wish I could explain it better. I just feel so exhausted, blue, sluggish and such low energy. I wish I could shake it off, I am trying to go with the flow and roll with the punches, but I am not walking the talk. My husband is so sick with his kidneys (and just getting over a bout of pnuemonia) and he is throwing up (kidneys) several times a day, lives off youghurt and doctor-prescibed protein/calorie drinks that they give cancer patients because he can't keep anything down, just lays on the couch all the time looking ill with his eyes closed because he cannot see anything and has no energy. I think he talked to me about 15 sentences all weekend. He is just tired and sick. It is so hard. Poor man, it would be so different if he only had one thing, but this health crisis has been long and mean; heart failure/bypass, diabetes now bad, kidney failure moving on to dialysis and now blindness - all in two years. It is a lot to take in. I think the blindness is starting to sink in and it is a big thing, life-changing forever. You don't know how big until you are in it.
I guess there are just periods of downs and ups and this one is lasting a bit longer than the last one. I do get inspiration for your mind-set Kim and Walt. I am sorry this is going to be a shorter mail. I am at work and just getting through my days. I have cried two days last week back and forth to work on my bike, for some reason that is where/when I cry. I did not cry today. I also took the dog to the park yesterday morning and it felt wonderful to be out in nature and see green and trees and a different type of quiet.
Kim, the first hour consultation with the Blind Society went really good. They have some resources that will help us down the road and we signed up for a 3 day blind course - for lack of a better word, (how to manage in your everyday life, how to move forward in life, how to get around outside, in the house etc etc etc), This will be in late March and I think it will be a good thing.
Walt, so glad the boat show was good, and that Leslie is done to four colors now :-) That did not take long to get there. What else is going on over in your neck of the woods, how are the cats and do you have other projects lined up? Do you spend a lot of time out on the water when the weather is good? I apologize if you have already mentioned it, but are you an avid fisher?
Kim, FMLA set up soon gets into place, so happy to hear that your workplace is understanding and trying to help you some. There are so many aspects you have to take into consideration and make decisions constantly. Your stamina is amazing. I send you good energy. I really hope he passes his stress test again with flying colors, it will bring you both such relief and happiness. Ha ha, yeah, Superbowl, there are so many things I am not aware of and then when I do become aware of them I realize that life just keeps going on and on and that is a good thing, but I am living in an alternate bubble. I don't feel connected to how things are for most people and all the noise, distraction, commercialism and horns ands whistles of everyday life.
Kathi, is it time to welcome you and Dennis back? How did everything go? Was it as good as you hoped? Did you experience some nice things, did you get some good down time in the sun?
I better get back to work, sorry to rain a bit here.
I wish you all a great week.
Michelle
Hi All
Kathi, I do hope that you and Dennis had a good time. I am sure it was a much needed break.
Michelle, you know that at different times we have be in a rut. The times where it seems we can't climb out. Is there anything that Soren might have an interest in to pass the time? Whether it is listening to music or perhaps there might be some TV for the visually impaired which gives a verbal description of what is happening on screen. See if there is a special food that would interest him. Leslie found much joy in banana milkshakes (which also gave her needed Potassium). When things weren't going well I would get her a milkshake and it calmed her down and made her day a little brighter. The 3 day "blind course" sounds extremely helpful. Sometimes when am stumped or frustrated of the way things are going, I stop for 30 seconds, take a couple of deep breaths and try to picture something peaceful in my mind. I know this doesn't really help solve the situation, but for me , it calms me down a little bid so I can procede with what needs to be done.
Kim, I wish that there was a better solution for the hospital loction problem. It is wonderful that the people you work with are handling it the way they are. I am so glad that your husband lights up when he sees you. Good luck with the stress test.
Leslie enjoys boating very much. We actually bought the house on the water a year before we got married because it was available and we didn't want to lose the opportunity to be on the water. I taught Leslie to drive the boat (she does an excellent job) so I had someone to tow me watersking. It has been more difficult the last few years, but we still use the boat.
I think I know what color she wants the bathroom painted but there are still three colors hanging on the wall. SOON.
WaltK
Hello All
I hope this post reaches you all doing good today. I just wanted to say Hi!, I am still here and I am thinking of you Kim, Walt and Kathi. When I get into a rut I have to pull myself together to do things other than my daily have to dos (work, helping Soren, shopping, getting everything else organized, etc etc). I slip on the meditation, reading for my pleasure (books of my choice), writing in a diary or on this forum, taking longer walks, being social with friends and doing outings etc. I do not know what takes over me. I just get kind of introverted and feel tired and so forth. I am not writing this so you will write back with words or suggestions etc, I just want to let you know why I have written a lot previously and on a more stable pattern and now not really being engaged and consistent. I will get through this, things are just sinking in and I am wading in lots of muck emotionally and doing so many things (I am sure you know how this part is) and getting so many things in order and having to do everything for 2 people instead of just myself. It takes a lot out of you during certain times.
Kim, I so wish your husband's kids did more and were there more. I am amazed at their lack of engagement in his and your well-being. I am glad you don't feel obligated to do more than answer their questions and keep your energy focused on your husband. Things will hopefully be better or more fixed when the FMLA gets up and running. I also hope you resolved the tree issue and not have to pay 450 dollars. Not much understanding for what is going on in your world.
Walt, has it gotten to the last two (or maybe even final one) color? Has a decision been made and if so, what color did it end up being? How are you doing and what have you been up to lately? When does your boat get out on the water, is it docked during the entire winter? How is Leslie doing?
I am going to the psychologist today for the first time in 4½ weeks, I think it will do me good. I only sleep about 4½ hrs each night, so it always starts taking a toll on my mind/body. I am just working and getting through the days.
All of you, please take care and you are in my prayers
Michelle
When Leslie was in the hospital and after she got out and was going through rehab I let people know how she was doing by giving daily E-mail updates. I had two groups of people which consisted of Leslie's family and friends and my family and friends. I gave themthe information I had from the doctors and her general condition. I figured if anyone wanted to visit or call they knew what to expect. I don't text (I know I'm old school) so the E-mails worked very well. That let everyone participate as much as they wanted. Like most families there wasn't a lot of participating or help offered, but at least I wasn't interupted (or bothered) with phone calls when I was in the middle of helping Leslie or stuck in traffic on my way to the hospital. I guess each family member of friend has to decide if they want to help or just go through the motions.
The tree situation and especially the fence situation is terrible. I hope that goes smoothly.
I am sure Leslie has chosen a color "Ground Fog" which is in the silver/gray family. Now we have decide on a carpet color (that is actually easier) to go with the paint. There is no shower so carpet is a safe choice. Once I pick up the carpet and paint I hoping for a two day turnaround to get it done. I'm still in no rush as I'm down the steet a lot helping the neighbor get ready to move.
I usually put the docks back in the water late March or early April and the boat goes in any time after that. I get my early boating fix with the canoe, kayak or rowboat.
Everyone is in my prayers.
Walt