Just when you think nothing else can possibly go wrong, you find out how wrong you are. The short version of a very long story is that today I found out I have the shingles and was put on 4 different medications for it. It's probably a mild case, because I am certainly not in the kind of pain that people talk about related to shingles. It burns; it stings; it's annoying, but I had shoulder surgery last year. That's pain. This is no big deal. Unless it gets worse. It hasn't so far.
I'm tired, but otherwise feel fine. After I finish with all that needs to be done tomorrow, I will rest for the weekend.
Sid keeps forgetting that there's anything wrong with me, and wants to know why there are 4 pill bottles on the kitchen counter. I keep telling him, and he keeps saying, "Oh".
Sorry Joan that you have yet one more medical issue to deal with. Praying it is a light case and clears up quickly. Get your rest - or as much as you can.
So sorry Joan to hear of your medical problems. It is amazing how any of us stay well doing the job we do... but that doesn't make it any easier when we get sick...in fact it just adds to our burden. Get your rest and hope you are well soon.
I have had shingles...It started with a sensation that someone went over me with steel wool..then the little blisters erupted and did they itch and then after they went away the pain moved in for way to long...I got shingles as a result of being run down from a bad case of c_Difficile toxin caused by Augmentin. The neuropathic pain I thought would never go away...
Joan, once the blisters go completely away, if you have pain you can apply capsaisin ointment but be sure to use gloves and wash your hands cuz if you get that stuff in your eyes you will be so so sorry...but it helps quiet the pain.
I could not take anything when I had them due to the meds I was taking for C-Dif.
Try to get some rest and most importantly help with Sid.
Oh, Joan, had shingles during DH's AD, left side of my torso. I know it's not easy, but please do the best you can for yourself, get help if necessary, if possible. And, no, DH never really knew I was sick. If I had a magic wand you'd be all better in an hour. Well, if I had a magic wand, lots of things would be different--make that better--for a lot of people. Bless you. Betty
So sorry, Joan. I do hope it's not a severe case. Just a reminder to all of you who have not had the shingles vaccine - to get it! Yes, I know, you can still get the shingles if you've had the vaccine, but less chance.
Joan-sorry about another problem to deal with. The capsaicin works-just be very careful you don't get it on "personal areas" because then you will really learn what pain is.
Even if you have had shingles you should get the vaccine..and if you are recovering from shingles you need to wait 6 months after you are all well from an outbreak to have the vaccine..I have had shingles and I got the vaccine last year...
Joan, if you got to the doctor soon enough, your case should be mild. I had it about 10 years ago with a mild case. The blisters were painful, but I was fortunate that they did not last too long.
The irony of this whole thing is that 2 weeks ago, I took Sid to our primary, and he gave us both prescriptions for the shingles shot. I was planning on doing it, but didn't get to it. Although I'm sure 2 weeks ago, it was already festering in me. It's $250 a shot. Last time I checked, it wasn't covered by insurance. I'll check again. I definitely want Sid to have it.
So far, so good. The 'very long name' prescription cream that I use for fungal infections has really dried up the blisters and soothes the burn. I am convinced that because I put that on as soon as I saw the outbreak, it stopped it from spreading. The nurse said I didn't need to use it, but I am - it's not hurting it, and it seems to be helping.
All I want for the weekend is no emergencies, no drama, and a chance to rest. Not asking too much, is it?
I'm not on Medicare yet, but Sid is. I wasn't told Medicare covers it. Thank you for letting me know. I will call my insurance company to find out if I'm covered (after the horse leaves the barn). But maybe for the future.
Medicare D does cover it - but the pharmacy who gives it is allowed to charge an "administrative fee". DH paid $35 3 years ago; I had to pay $75 last year! Same pharmacy - go figure.
I had my shot at Walgreen's last year and there was no "administrative fee". I suppose it depends on the pharmacy. I also have BC/BS Federal and they don't cover it.
Didn't feel so great last night. Stinging and burning. The rash is on the inside of my upper arm, so my sleeve rubs against it. This morning I figured out a way to get a gauze pad to cover it and stay put to reduce the rubbing. In the old days, Sid could have put it on for me, but his hands are so weak now, and he's so clumsy, he wouldn't be able to put it on. He can't figure out things like that anymore. <sigh>
I'm going to change sheets, then sit and do knitting and laundry. That's it for my day. Too tired for anything else. I think all the medication I am on is tiring me out. Anti-viral, anti-biotic, prednisone. That's a lot. I don't bother with the pain pills unless I really need them. And usually only at night.
Oh, Joan, I am so sorry. U r so right, just when u think youve gone thru the worst & u have everything under control ... well, guess not, I so feel for u. My dh got a very mild case of shingles about 6 years ago & we got him vaccinated. A vaccination for me would be $300+, so I opted to wait until prices come down and I'm past 60.
Don't know the whole story, but for arm and leg bandages, I cut the toes off of tube socks and hold the gause pad on with that. Can wash them or toss them. So much easier and less costly. I sure feel for ya Joan.
I think it's Curad brand that makes a tube gauze on a roll. It stretches and is very soft.You just cut length you need. By itself, it might be enough protection.I keep a couple rolls on hand(I am a klutz)Beets using adhesive.
Thanks for the tip. Right now, the large gauze pad is softer than the pantiliner. And I found a soft open tube thing - like the sock janny mentioned - must have been used for something for one of Sid's wounds - it's very soft and stretches. I put it on over the gauze pad, so it keeps it in place. It's much better now that the sleeve isn't rubbing against it.
I'm trying to rest, but I keep getting up to do laundry, and just as I was about to sit down, Sid said, "What's for lunch?" I had already made a sandwich for him, and put it in the refrig. I made him get up and get it himself. I try to wait on him ONLY when he's in pain and can't get up himself. I told him today was my turn. He was going to have to wait on himself. He's not in a lot of pain, so he's doing it.
Oh Joan, so sorry you are going thru this. We don't need any other frustrations to deal with. Just rest as much as you can ( I know, easier said than done!) Don'r do anything that doesn't absolutely have to be done!
Joan, nothing new to add. I am just soooo sorry that this is happening to you on top of everything else!!! The universe seems so unfair sometimes. You continue to be an inspiration with your positive attitude and your "tackle anything" way of approaching life. Hugs, Susan
So sorry to hear about the latest problems you are having Joan. I sure am glad you have found away to have some relief tho. Try to take care and hope this goes away soon.....
I went to the doctor today because I have a rash just above my waist that is driving me crazy. Yes, it's shingles. My doctor said *prolonged* stress could bring it on. Really? He asked how far my DH was into the disease. I told him he was diagnosed almost 5 years ago and, of course, there were symptoms before then. Over 5 years of *prolonged* stress! Everybody tells me I have to take care of myself but no one tells me how. He asked if I still have him at home. Yes, I do but he has to have help bathing, dressing, shaving, brushing his teeth and everything else. I really don't want to place him when he's still aware of where he is and who I am. There seems to be no good choices in this disease. I'm so glad you all are here. I don't feel good and I really need some hugs.
Hugs and more Hugs coming your way. This medical condition is the pits for everyone. Do you think there is some way you might arrange for some respite....even if it were just for 3 or 4 days. It probably would do you a world of good. A week or more would be better. I don't understand why medicare pays for respite when a person has hospice, but hospice doesn't seem to want to acknowledge that this condition is hurting two people and their requiresment for approving a person with AD is almost impossible in my area. Does your husband have any other medical conditions or is he a Vet and you could get some help and respite care from them? You might want to contact the AD association in your area to find out what type of help is available.
Oh, Dazed, I am so very sorry! Just what you don't need. Yes, stress does cause this. As I've said before to everyone - PLEASE GET THE SHINGLES VACCINE. No guarantee that you won't get it, but it might prevent it.
And here's a bunch of cyber hugs for you (((((((((((((((((((((((((((((((((((((((((((((((((HUGS)))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))
Dazed, wouldn't you love to have a dime for everyone who says, you've got to get away and take care of yourself? No one considers maybe we don't want to cause our LO's to become frantic, anxious and agitated the moment we're no longer in view. Stress is our middle name. Hope you have a mild outbreak and it passes soon. JudithKB I'm surprised by your Hospice comment. Our PCP has repeatedly said over the past 18 months, anytime you want Hospice care I can arrange it, it's not just for end of life situations. I've never explored his offer/comment not sure if Medicare would cover or not, I'm just repeating what he said
I know what you are saying and that was my impression with hospice. Now, I certainly don't want to sound like I am bad-mouthing the hospice care for my dh because everyone was wonderful and I could never have made it to the end without them. However, when they first came to evaulate my dh...I assumed it was for his AD...they immediately told me (now this really did upset me) after they did their evaulation that there was no way he could qualify under their hospice rules for care with his dx of AD.... They told meTHE PERSON HAS TO BE BED RIDDEN TO QUALIFY. That threw me for a loop...so I did a little research on my own and I found that not to be true. But, I never told them that because they never, never thought my dh was really bad when I knew he was...so it would have been like I was trying to "direct" them or challenge them. I believe they actually thought I was exaggerating his condition and I was like "off-the wall".
Therefore, they decided they could qualify him using his heart condition. That was OK by me because I knew he had a bad heart condition but the reason I wanted them here was because of his AD. They first came on May 15th and he died on Aug. 28. Their cause of death was listed as congestive heart failure. That was OK by me also. But, I think his AD put a lot of stress on his heart and caused his death. And, I think that if he hadn't had the AD...he might have died of his heart condition, but not so early.
If he hadn't had the heart condition they would not have qualified him. I even had several of the nurses that came here tell me he would probably live at least a year or two more. I told them NO WAY...you don't know what this man was like before he was dx with AD...they would look at me like I was a nut case. If they hadn't qualified him I would have pitched a fit, thankfully I never had to do that...so everything worked out OK and they were wonderful to my dh.
Marty, I do think I just got with a hospice group that knew little to nothing about someone's progression regarding AD. In fact, one of the nurses said this was the first time they had seen a person 65 years old with AD...most of the people they saw with AD were in their late 80's.
From May to the first of Aug. the nurse would come twice a week. My dh's blood pressure was always good, his pulse were always good, his heart sounded strong, his lungs were clear. And, I would say he is getting worse and look how he walks. They would look at me like...what are you talking about? They didn't know how fast my dh walked when he was well. My dh was a Federal Coal Miner Inspector and would have to carry 30 to 40 pounds of equipment on his waist and even crawl in some of the mines he was inspecting. After doing that he would come home and mow the one and one-half acre of land we lived on. When hospice started in May my dh couldn't mow any lawn. He also was Treasure of his union covering 5 states...and in May he couldn't add 2 + 2. He travelled over the 5 states teaching the other inspectors how to use the computer when they were introduced. By the first of Feb. he didn't know anything about a computer. It really was very frustrating for me to have others think I had a screw loose...but, in the end I was right...they were wrong. I told the hospice doctor the last time I saw him...I know most of your help is for people with cancer, but you need to pay more attention to what the caregivers of people with AD tell you about the changes in their spouses....AD has no pain, at least it didn't for my dh, but it is a progressive condition just like cancer. He agreed with me. I do think our case was a learning experince for them and it will be good if it helps others in the future.
I hope you have a mild case like I did. Even with a mild case, I was tired all of the time and needed to rest, rest, rest. With Sid at DC 3 days a week, his AD Buddie's group once a week here at our house, and him being content to watch TV when he was home, I was able to get some rest in between waiting on him when he was home.
The doctor put me on 4 medications - anti-viral; prednisone; anti-biotic; and pain pills.
Legally, I cannot tell you to take any specific medication, but I can tell you that a prescription cream I have for fungal infections (not meant for Shingles) stopped the rash in its tracks. I put it on before I went to the doctor, because I didn't know what the rash was, and I use that cream for everything. You could mention it to your doctor -it’s CLOTRIMAZOLE 1% CREAM. I am convinced it helped dry up the rash immediately. I am NOT a doctor, and as I said, I cannot tell you to take a medication, especially a prescription medication. All I can do is tell you of my experience.
Noting that I was diagnosed on September 6th, I can tell you that I still have scabs that are a bit itchy, but no more burning. It took about 2 ½ weeks for me to feel better.
Talked with several neighbors, both of whom went thru Hospice end of life care with their DH's/DWs and now like Nora, volunteer. I received an education. My perception was Hospice was a non profit. I was informed that there are competing for profit and non profit Hospice offerings locally and to go to any length to avoid the for profit groups. The for profit groups "cherry pick" their cases, selecting only the profitable ones as qualified, by providing erroneous information much as they did to you. Geographically, my living in So Florida, the Hospice personnel I was told are equally adapt and knowledgable with Cancer or AD. This may not be the case in non-retirement type locales.
Thank you so much, Joan. We have some antifungal cream here. I'll look to see what kind it is. I really don't see that it could hurt and it sounds like it really did help. Hopefully I also have a mild case. Two little patches. When the first patch appeared, it itched and and burned. I thought it was 3 or 4 little bug bites. When it didn't get better and another patch appeared, I went to the doctor. He said it was a good thing I came on in because he had seen some terrible cases when they waited. I'm on the same medications you are on and it's good to hear that you're feeling better so soon. I don't feel good but don't feel really bad either. Just tired and have a little headache. Doctor recommended rest and medication. The medication I can do but the rest is really hard to get.
Another question about the medication. I have taken prednisone before and it came in a pack with lower doses each day. This prescription is for 20 mg, 3 times a day for 7 days with no lowering of doses. Is your prescription the same?
Yes, that was the exact prednisone prescription I was given. I didn't realize it until I got home, and I, too, wondered about not gradually reducing the doses. I took it as prescribed, and didn't seem to have any problems.
You don't have to reduce the perscription amount if only taken for 7 days. I took it for poison ivy. My husband took it for a blood disorder for a month and had to reduce the amount when getting off it. I just got him a shingles shot this week. He is almost 80. They said I could get one when I turn 65. So I am assuming medicare pays for it at that point.
My health insurance, which is a moderately good but not outstanding Blue Cross Blue Shield plan, paid for me to get the shingles shot at age 54. I had chicken pox as an adult, which makes shingles more likely, and I told my doctor I couldn't risk getting shingles while caregiving and working full time.
Thank you Joan and Lakegirl for information about the prednisone. I was going to call my doctor and ask about that but, Gosh, we have so much information here! Also thanks to everyone for the hugs. Yes, JudithKB, several days of respite would be wonderful but marty stated my reasons for not doing it. I think DH would maybe do fine during the day but I'm sure he would become very anxious and upset if he had to spend the night there. We still sleep together and I get up and show him where the bathroom is if he is confused. I can't imagine him in a strange room alone or with a stranger at night. I am checking on some in-home help, though. He is a veteran but there's no help unless they served during war time. He was sent to Korea right after the war was over. I contacted the Alzheimer's Assoc. about helping get a day care started here in our county. They were no help at all. The only day care we have here is run by a church and they can only take 9 people and it's only two mornings a week for 4 hours. I do take advantage of that but it's just not enough when you're dealing with this 24/7.
I think medicare pays for the shingles vaccine now. It didn't 2 years ago when I got mine and I paid over $200 for it but I still think it was worth it. We have a very good Blue Cross/ Blue Shield plan and that didn't cover any of it either.
Medicare does pay for it but the pharmacy can charge an 'administrative fee' to administer it, if they choose. Some do, some don't. DH had to pay $35 for his; I paid $75 for mine.
My DH and I both have medicare and BCBS insurance. My DH had to pay $50 for the injection, I had to pay $180. Go figure??? I am just glad to have it and have that worry diminished.