Some days I am just waiting for the nightmare to end. I think there are times when I would love to not worry about having to go out for necessities. I do not go out for anything unless it is important but it would really be nice to feel that I could go out without worrying before I go and after I come home.
This period of time reminds me of the time my husband was in Viet Nam. I could never let my guard down…never totally relax. I thought at the time about men/women who were killed the day before they were to rotate home.
I feel that way about the covid vaccine. Will we manage to get the vaccine before we get the disease? It makes me super cautious. I don’t want either of us to be part of the horrible statistics hitting us now.
Nevertheless we due have to keep on living and I am varying my routine and trying to enhance my husbands so that we don’t become vegetables before the vaccine. I pray that everyone who wants to receive the shots will be able to get them soon. This is really hard. I feel as if I am living in a science fiction novel like 1984, Soylent Green or Animal Farm. There are many more recent books that have played out this scenario but I grew up with those.
Has anyone noticed lately how difficult it is to get a diagnosis. My husband went through months of illness before someone was able to find what was acutally wrong. I have run into so many people who are having the same problem.
Is it because we no longer have any doctor who really knows us? It does seem that could be part of the problem. No one seems to really listen. My husband complained about his knee for months but no one ever checked it until it was found more or less by accident.
I really think we need to seek out a primary physician that we can keep long enough to understand our life and our family. Very hard to find any more in this era of switching insurance, both us and our changing health environment.
When we were at the Mayo Clinic the first physician was an “attending” (head and teacher) in the ER. He mentioned that one of the hardest things to teach new docs was to see the whole person not just the piece that brought them in. He certainly was a special doctor and so right.
I have written a lot about the medical system mostly because it has gone so horribly wrong.
Anyone who has a major or chronic healthcare problem and has to manage their day to day care must be stressed out. I have been managing my husbands care and I am a nurse and have been a case manager (one who handles these kinds of problems) and it is about to drive me into insanity.
This week the IV medication that he receives every 12 hours didn’t arrive and I spent hours on the phone trying to get that fixed. The provider messed up and we didn’t get meds until 1pm today totally ruining his schedule and having him miss a dose of needed medicine.
Then I spent the rest of the day organizing the medicine and care he is to receive following the stopping of the IV meds and had doctors bouncing it between them each saying it is not their job. The medical system has totally fallen apart. Too many doctors with specialties and each one not considering the whole person.
I am grateful that I will be getting him in to see my own primary physician who is wonderful. I am hoping that this will create some harmony in his care and take some of the burden off me. I really don’t know how those with no experience in health care can manage the care of their loved one. I am not surprised to see that some nurses are opening their own business as patient advocates. It is really needed. Heaven help those who don’t have someone to help.
It is always said that nurses and doctors are the worst patients. They are also the worst when tending for a family member. My husband is receiving IV infusion at home and it has been challenging. The supplier of the drug is a different entity than the nurses who visit and oversee. Not every city has a drug supplier and therefore some of the drugs come from the nearest place…in my case 2 1/2 hrs away. This has presented some problems for me and the supplier.
Naturally the insurance companies get in the middle of the whole thing and create problems for everyone. They will not send one extra dose of medicine nor will they send it one day earlier so they don’t have to pay for medicine that might not get used. So at this point I sit here at 5 pm with one dose of medicine left for tonight and more on the way?? There are also components that this kind of care requires and some of those are not here also.
Because of us being in a position where the insurance companies write the rules proper care is put on the sidelines. I ran into this my whole career as a nurse and somehow there has to be a better system. I have not been quiet about this as have many others but I’m sure our voices fall into the void. I have even made suggestions for how the current system could work better ….also fallen into the void.
I feel that you shouldn’t complain about a problem without offering suggestions for improvement. Some of them quite simple but as with any other entity (corporations, government etc.) no one ask the workers how to fix things. I wonder how much money could be saved if that happened.
This is going to be a simple post.Since last Thursday I have been with my husband at the mayo clinic.He has been quite ill With an infection In his knee replacement. He also had some mild congestive heart failure.That has now resolved And the only issue is the infection in his leg.This is a serious infection and will Require Long-term Antibiotic therapy.We should be able to go home And have his therapy completed at home.I ask For prayers for his healing And that the infection is able to be cleared.I have missed my word press family During these few days and hope that I can keep up better.
This week has been a steady stream of doctor visits and tests. I’m afraid it will be that way until we can get answers for the leg pain that makes my husband’s life unbearable. We are making small steps forward. Xrays are on the way to the Mayo Clinic. I am afraid that it is unlikely that we will hear there is a physical problem with the implanted knee replacement. If we find that is the problem it will be related to an allergic reaction and that will take longer to prove.
If it is not that we will continue on the search for answers to make his life bearable.
When I left my job as a Parish Nurse I thought about becoming a “patient advocate” as a free service for those who need help. Now I am using those skills for my own husband. We will prevail!
Why is it that sometimes it seems as if the universe is against you? Nothing earth shaking but little things that require multiple details and it all goes crazy.
I have been trying to get my husband in to an orthopedist to find out why his knee is hurting. He had surgery at the Mayo Clinic over a year ago and we don’t know why there is pain now. I’ve called the orthos that we see here for other issues and they can’t see him without the records from Mayo. He had two procedures there and Mayo sent the records from his last visit instead of the surgery notes. Now we have to start over. The whole process had to be done again so that I can get him seen.
Why does something so simple have to go awry? Is it karma? This is just one of the things that has been so frustrating recently. I am keeping my sense of humor but it is getting harder. Hopefully some things will start to work out and life will at least be a little easier. I can blame it all on the pandemic!
In our area the Episcopal Diocese has said that we will not go back to church until there has been two weeks with no new cases. I am hoping that they will rethink that as I don’t think we will see a week without at least one case until there is a vaccine.
At some point we will have to resume some regular activities even if for those of us “at risk” must remain more isolated and more careful than the rest of the population. The mental health aspect is going to require us to do some things or we risk some serious complications.
I know that I am reaching my limit of just being at home and that I will have to go out into the world carefully but I will have to go out. The state has opened many things and there are people out there resuming their normal schedules. Most of them are not wearing masks but they seem to be social distancing. I can see us doing that for quite some time.
It’s a new world and one we will learn to navigate one day at a time.
Tomorrow will be very busy. My husband will have a “Watchman” implant (a brand new device) to prevent blood clots. A short while after he will be able to come off of blood thinners for the first time in years. That will be great as he bruises easily and is always needing major band aids for small everyday scrapes and cuts.
They will allow me to be with him and can see him following the procedure. He will spend the night and be home on Friday. Medicine just keeps advancing. Hopefully this will be a plus for him.
This getting old is aggravating but it’s better than not being here. I am thankful that we have managed this long and hope we keep moving for a while yet. We plan to.
Life has been pretty much up and down. My husband’s health fluctuates from day to day. Not critical but learning management is the plan. Yesterday was particularly tough but we got through it. I am still not sure about the underlying problem because the virus has made logical medical care impossible. We will root it out eventually. At least the hospital stay ruled out major problems. I am sure there are others suffering from the same issues.
Something else to make life uncertain. We will all be lucky not to need a short time for what was called in the 50’s a hospital stay for out nerves. Too bad that’s not possible any more. A couple of days rest and relaxation with someone waiting on us would be wonderful. Anyone what to join me? A long time ago a friend suggested (when life was stressful) a Cruise to Nowhere. It showed up in the New York paper and sounded like a wonderful idea. Not so great now with the status of cruising.
I do find myself without lots of energy to tackle any big projects. Some things I will have to do and will get done. Others will just have to wait. I think looking toward the future is a big question. We know that life will go on but will have to cope with the shape of things. We can do it! We can’t give up or the virus will have won. This is not acceptable.
Most of us are still here and still functioning. Keep going things will change.