I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Spouses and Caregivers => Topic started by: PrimeTimer on March 26, 2019, 05:44:32 PM
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Well, the care-partner (that would be me) needed some care this week. I'm a big fat stupido. I not only waited too long to deal with a major asthma problem (again) but also have cellulitis. I think I had that patriotic look going on...red, white and blue. Had to use a wheelchair for the first time the other day. And I scared the crap out of my doctor. Boy, was he ever upset. Poor hubby has had to look out after me and HE'S the one with no working kidneys. Got a ways to go but not on my deathbed, in fact I can't sleep in my bed yet, I sleep sitting up in a chair but I am breathing. Thanks to a nebulizer, prednisone, shower stool, furosemide and Bactrim. And one very very good doctor with two very very good nurses. Gave them all a scare I guess.
I am going to have to make this up to my husband, he's been doing everything and all the chores around here and with no complaints. I have to use the nebulizer machine every 4-6 hours now no matter what but it keeps me breathing. Cellulitis is scary, if you read what all it can do to you. Not being able to breath is scarier. Probably the best advice I could give someone is to tell them that if they are at all "mobile" they should stay "mobile". Getting older is no excuse to slow down. Being lazy is even worse. Like that tv commercial says, "A body in motion tends to stay in motion". Well, I slowed down and that was the worst thing I could have done. A good rest is one thing but it went downhill quickly and I don't want to ever go thru this again. All you caregivers and care-partners out there, please take good care of yourself because if you don't you won't be of any good to anyone. Listen to your body and listen to your significant other. And your doctor! It's okay to get help.
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Wow Prime Timer! Being so focused on kidney problems, it's sometimes hard to remember there are a whole host of medical problems out there that can take you down in a hurry.
Please take good care of yourself for both you and your hubby. I wish you a speedy recovery.
Kathy
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I thought I was suffering a bad asthma attack in October 2016, I treated it with a Xopex inhaler for 2 days and it wasn’t getting better. Went to urgent care and was told I was having a major heart attack with no other symptoms then can’t breath. After 3 operations and 2 weeks in every major hospital my life was saved. It turns out dialysis patients are prone to cardiac problems. And any persistent breathing problems should be checked out, going in on the first day would have reduced the damage by a lot. It is only a quick blood test to look for a cardiac problem.
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Oh, geez! PT, get better soon, OK?
Oh, I'm going to drag out my soap box here...wait a minute...ugh, it's heavy...OK, here it is! Ahem. You don't have to make anything up to your hubby. He can do chores. It's not rocket science, it's chores. I'm sure he is a very smart man and can operate a dust cloth. :P Having kidney failure is tough, but it doesn't render one completely helpless 24/7. I'm sure he is happy to look after you, especially after all of the love and care you've shown him!
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Get well soon, PT! :grouphug;
My mom has asthma that flares up from time to time. This last round with prednisone (50 mg) was brutal. When my mom used a nebulizer when I was a kid, she used to entertain me. Told me to grab a seat behind her and we would play fighter jet. All of that said, that's just a little window into your problem, and let me say, it's scary and I hope for a speedy recovery.
Cellulitis is BRUTAL. I had it when I had to go for IV treatments (needle poke in the skin, hello bacteria!) and it was AWFUL. You have my sympathy! Please take care of yourself and this is your time to be the patient. It may be a shorter term but now, you need all the love and support!
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PT, I can't speak of cellulitis (and hope I never can), but I sure can relate about not being able to breathe. THE MOST SCARY THING IN THE WORLD! Finally, my pulmonary doc put me on Singulair and Breo Ellipta and my Asthma is (knock on wood) controlled . But there is always the threat of an upper-respiratory virus that could take me down. And then there was that "little" incident called Potassium Toxicity when a taper course of Prednisone triggered my blood sugar (Type 2) and released a ton of Potassium (7.7) and set my heart aflutter in the ER. So I empathize and hope that you are breathing freely very soon.
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Get well(better) soon PT
:cuddle;
Lots of luck, strength, and air, Cas :flower;
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Hope you feel better soon.
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Thanks everyone for the well wishes. Had blood tests. Have to get an echocardiogram next. Just to rule some things out. I miss sleeping in a bed. Heck, I miss sleeping! Had weird nightmares about poisonous mice on the loose while hunched over the kitchen table last night with a couple of pillows. Intentionally. Cannot breath lying back yet. Lying down also hurts my legs right now because of the cellulitis. Like the doc suggests, from now on I am going to shave my legs using an electric shaver to lower the risk of cuts or breaking the skin from a razor blade and inviting bacteria in. Meanwhile, the chair in the living room is better than the kitchen table but I have to alternate to deal with body aches. I don't even mind the side effects of the Prednisone right now. So long as I can breath I will gladly satisfy the cravings and have some of that carrot cake that hubby brought home.
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There is no better feeling than sleeping in your own bed. Actually, there is no better feeling than getting some real sleep! I am still on oxygen therapy 24/7 so sleep with tubing up my nostrils but back to my own bed and that feels pretty great. I have Pulmonary Sarcoidosis. Don't know how long I have to be on the O2 but despite the inconvenience of dealing with long tubing that tangles up around my feet, rolling a tank around on wheels and still waiting for a POC (portable battery-operated oxygen
contractor concentrator) to be delivered, the extra O2 makes me feel better. I can complete 1-2 tasks a day, just depends. I am having to rely a lot these days on poor hubby -the one who goes to dialysis 3x a week and working a fulltime job. Was hard enough that one of us are sick, kind of tough when we both are. We do the best we can as we can.
Our description of a "good day" has changed but really, we try not to bog ourselves down with depression or negativity. If we can get things done around here (perfect or not) and not have it end in complete disaster, then that is a "good day". If we can still smile and laugh together and still get concerned about the weather and what to eat for dinner and what to watch on TV for the evening then we've had a "good day". It means we are alive and living. I hope to venture out tomorrow and even do a little cooking. Showering and dressing has become a chore but I've found my rhythm. I don't go anywhere without my oximeter. Or the O2. I love my husband and thank him every day. He gets me whatever I need. Sometimes it's hard for me just to get across a room so he will bring me whatever I am wanting, whether it be a glass of juice, box of Kleenex or a hairbrush. And I can't thank him enough. It is frighteningly too easy to take each other for granted. That's the scary part. So we are facing the challenges together....dialysis and sarcoidosis. We don't like growing old or sickness but we do like each other. Really, a love like no other. Our families haven't a clue but I guess they try. Too bad our priorities are different from theirs...But we have our little life here and despite all the doctor appointments, dialysis, nose tubing and machines and insurance co-pays and surprise balance-bills from hospitals, we are plugging away at a life where we make each other happy. No matter what. To say that our relationship is still intact is a "good day". We've decided to stick around a while and choose life.
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what a great attitude and its so lovely to hear of your devotion to each other. Thank you for sharing your positive outlook. You are a treasure.
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You certainly have your priorities straight! I don't have a thing to add as you've said it all! My best wishes to you both. :cuddle;
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I wish you many more good good days sweathearts
Lots of love, Cas
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Golly, PrimeTimer, this thread started more than six months ago! You and your hubby have been through the ringer this year and your outlook on life is humbling to me. Bless you and your hubby for choosing to live - and LOVE.
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Hello PrimeTimer,
Difficult times in our life become so much easier when we can share it with our soul-mate!
And I am very happy for you both that you have found each other and can be together !
Best wishes to you both from Kristina. :grouphug;
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This has been too long of a year for me. Living with Pulmonary Sarcoidosis has kept me homebound. Insurance company has kept me mad. Drug manufacturers make me feel even worse. Poor hubby doing his best working fulltime to take care of us and going to dialysis 3x week. Hives breaking out because the insurance doesn't want to cover some of our meds, despite the fact that these meds have been working quite well for quite some time already. Sometime I want to ask who my doctor is at the insurance company. I mean, they seem to act as if they are my doctor and know what is best for me and my wallet. Meanwhile, the meds that they do cover are not affordable. Not even with the co-pays anymore. They won't approve another cat scan of my lungs til I start over with some other tests first -but I'd say the fact that my oxygen level has sunk to 34 without the O2 up my nose is proof that I still have Sarcoidosis and it may in fact be worsening while we play around with any re-testing. By the way (lol) an O2 level of 34 actually felt okay. No choking, no feeling of death or anxiety. Felt rather calm, quiet and smooth, as if I could have just closed my eyes and drifted off to the next level. Wherever that may be...someday...I'm not afraid of death because if I was experiencing it, it was nice. Nothing terrible. Just unfortunately I need to be conscience in order to cook, clean or work. If I want to be dead, then I might think of just removing the old oxygen tube and go to sleep. Would be a nice way to go.
I am just...….very tired. I want to get better. I have so much I want to do and so much I need to do. And hubby needs me! He needs me to be his partner to crack jokes together, watch stupid TV together, get back some sort of life and do things we can enjoy. And ah! What we'd give to worry less about things. We'd love the feel of a dog's belly wanting to be rubbed and his bark when you run and play and his warmth and companionship during cuddling. But everyday is just so hard now. Guess so long as nobody has turned us into a pumpkin we are doing alright. I just need to stop worrying and let whatever happens happen. Oxygen level of 34?! Life doesn't s/care /for/ me anymore.
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The spring buds are starting to poke out. I hope things start easing and looking up for you.
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:grouphug; :grouphug;
:cuddle;
Thinking of you, Cas
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Ugh, ugh, and ugh, again.
It is just infuriating when you're trying so hard to just do what you have to do to survive and there are too many people in your damn way.
I was shovelling snow about 10 days ago, and just before I'd finished, my right leg slipped out from under me, and I fell hard sideways onto my left arm. I was in such pain I could hardly get up. I managed to get indoors to call my husband who came home and took me to one of those urgent care places (I didn't think I really needed an ER).
I didn't break anything, which was good, but since that day, I am so sore and so horribly bruised that any small chore is difficult. Today was my first day back driving, and it was so hard. I don't sleep well because I wake up in pain. My right leg is very painful, too; I probably strained muscles I didn't know I had.
Anyway, my point is that all I had was a fall, but what you're dealing with is far more impactful. When I think how hard it is dragging my bruised body around each day, I can't even begin to imagine how difficult things must be for you, PT. I am so sorry that you're having to live this restricted, physically uncomfortable life.
May I ask...what is your prognosis? Will it always be this hard for you?
Yes, whatever will happen will happen whether you worry or not, but it's only human to worry.
Like iolaire said, spring is just around the corner. The clocks change soon, and the sunshine will last longer as each day goes by. I hope your days get sunnier.
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PrimeTimer, you have my sympathies and are in my thoughts. I wish there was something practical that I could do to help.
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Thank you to everyone for the well wishes. I haven't been doing so good. My O2 saturation levels have sank. So this past week I was sent to the hospital for a CT scan the insurance didn't want to do and a Bronchoscopy and pulmonary lymph biopsy and ended up in the ICU on a ventilator. Gee, wonder how they are going to feel about that! So things went from bad to worse but I am home now and just fighting nausea and trying to breathe without choking. They think they got enough tissue to biopsy, should know results in a few days. Meanwhile they are pretty sure I have Pulmonary Sarcoidosis but now with some permanent scarring. Nothing they can do about that. And the hives on my lower legs are a part of it -the Sarcoidosis rash as they call it. My O2 has been increased and the Prednisone from 20mg to 60mg/day. Yeah, I am feeling that but helps with the breathing and no more hives. Probably will be adding Methotrexate to the mix. I just need to know what the game plan will be because honestly, it is the fear of the unknown that gets to me. I have a good team of doctors (except for the ones who work for the insurance company) and I am confident that "my team" will give me the education and tools to fight. Sarcoidosis shouldn't be a death sentence but apparently it's the drugs they treat you with that do the dirty work (side effects) or else the cost of the drugs that kill you. I am hoping for a quick turnaround because at some point I want to adopt a little dog for my husband and go on a short vacation altho I'd be just as happy to stay local and get out and do my own food shopping to cook up a big dinner for us. I'd be happy to go on a short walk outdoors. I'd be happy to order a nice dinner out somewhere and clean the apartment until it shines and sparkles again for us. I lead a rather boring quiet life and kind of like it that way. Being sick is not quiet nor boring. In fact, it's way too much excitement (puke bags, where's the nearest toilet, why does my heart want to jump out of my chest? Why am I shaking? See, too much damn excitement going on!) I want my slow and quiet simple life back . I want to be my husband's wife and the person I am right now isn't. I don't even feel human. I don't know what I am anymore but if anyone were to ask, I want to be that woman who married a fantastic guy who thought I was fantastic too -I said we were like 2 peas in a pod. And we are. Or were...gotta get better to be the other pea's pea pod.
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Look, PT, I don't want to be a downer, but my heart hurts so badly for you. There are no words to offer but I send all the prayers that I can. For real, when I read your posts, I see a fighter and a great wife, and that has not been lost. People take for granted the blessing of a quiet drama-free life. Sending love. :grouphug;
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Ukrainian Tracksuit has pretty much said it all.
I am truly saddened that you and your fantastic husband have had to deal with so much medical drama, and I am hoping that you will be able to return to a quiet life very soon. There is much to be said for a simple walk in the park.
You're a great pea no matter what.
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You're a great pea no matter what.
People take for granted the blessing of a quiet drama-free life. Sending love. :grouphug;
Thank you, MooseMom and UkrainianTracksuit! BEST quotes ever!
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How are you doing today, PT?
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Does this make PT now Pea T? (Bad joke, I know, but peas are awesome. Peas on toast, but let's make sure this Pea T does not become toast!)
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How are you doing today, PT?
I'm doing a little better, MM. Thanks for asking. Not much sleep last night tho because hubby was struggling with his own breathing. He's winded. A new tech infiltrated him twice so his Hemoglobin is down to 9 -lots of Epo now! And I am sure that having his wife on a ventilator was stressful. Was probably harder on him than it was on me (they had me on Fentanyl). He's having to do most all the chores at home, working and then dialysis. I feel terribly guilty that he is having to carry this load right now. So far, he's doing spectacular. I warned him about the increase in my Prednisone, very moody and of course, bloated. I don't care what I look like but I want to get better so I can do things and not be so much of a beached whale. Ooh yes...here comes the jokes about "Pea-T the Whale"....doh!
Does this make PT now Pea T? (Bad joke, I know, but peas are awesome. Peas on toast, but let's make sure this Pea T does not become toast!)
Okay UT, but at least I am Pea-ing!
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I'm gllad to hear you're doing a bit better. I know prednisone at higher doses can weird you out, but if it will help you get better in the long run, it will be worth it.
I like "Pea-T"! Last night I was thinking "Prime Pea" because you're awesome, so I think we may be seeing both monikers used here on IHD!
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I agree with MM :cuddle; keep improving girl :flower;
Love to the both of you, Cas
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One moment we are okay, the next we are super-stressed. Having Sarcoidosis sucks but stressing over rent payments is almost worse. I have significant scarring on one lung and 2 calcified pulmonary lymph glands. Doctor mentioned sending me to be assessed for a lung transplant. I don't want one. Still on oxygen 24/7 but I'm breathing (no more ventilators in the picture). They added Methotrexate to my treatment. Still on high dose of Prednisone so we're having a lot of fun now. Pft...I'm dealing with the side effects. No biggie. Yeah, right.
Meanwhile, hubby suddenly needed an artery in his leg scraped to clear a blockage. Whew! At least that went well! Was frightening but he really did okay. Unbelievable what he is going thru. His Hemoglobin is finally up to 11 but he's still winded. That and purple toes have to be dealt with next. The vascular doc wasn't concerned about his toes other than saying "no gangrene". Oookay….but purple toes on a diabetic is still scary and has to be dealt with. But oh, the rent! Up until last week and thanks to Covid-19 Stay-at-home orders hubby hasn't worked. His employer never officially laid him off so he didn't qualify for unemployment. He's back at work but like so many others, the piggy bank is running dry. Time to ask for help...from family? Sure, but not without very mean and nasty phone messages. In one message I was told to "get off my butt" and in another, this same family member said helping us made them feel like they were being raped. Wow. I don't know what to say to that. That one stung. So between both of us having medical conditions and stressed out over finances we get to deal with smart asses for "family".
Well, that's how these past couple months have gone. Just when you think it couldn't get any tougher...but we are both (still) determined to rise above all this and rebuild. Have to.
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Jeeez PT what an awful situation. I wish I could help you, don’t even know what to say. Just sending more coping-vibes to the both of you, and as always, lots of love, Cas
:grouphug; :grouphug; :cuddle; :flower;
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Thanks for the coping vibes and love, Cas. I suppose I am venting but truthfully, I am also very exhausted from PROBLEMS. There are millions of people going thru their own stress and so I know we are no different. We really are in the same boat. Doesn't make it any easier tho. Every nite before bed I reflect on my day and try to find one good thing to be thankful for and surprisingly, there is always at least ONE good thing to be thankful for. Sometimes two. Sometimes three good things. Embracing hardship is not an easy thing nor attractive. I look and feel like hell but I am alive and fighting. I try to be strong. My husband tries to be strong. Together we are stronger. That is actually two good things!
Next battle is figuring out what the foot doctor can do for hubby. Vascular doc says it's not gangrene but it sure looks like it is. Scares the crap out of me. And his RLS is keeping us both up every nite. For some reason his meds aren't working. It's like sleeping in a combat zone, all the thrashing, tossing and turning and elbows flailing about. He usually ends up going out to the living room to sleep in his recliner so I can sleep. This routine is getting old. I miss him in our bed. And I feel terrible that he can't sleep. He's lost his appetite and 35 pounds these past few months. His Neph says he is malnourished. I haven't been able to cook like I use to so he's suffering. I know it's not my fault but I feel terrible. Sarcoidosis is sucking the life out of both me and my husband. It is affecting both of us. At first, it sounded like no big deal and that I would recover in due time. Now I am doing battle with it. Never imagined I'd be this sick. Never. I suppose that is how hubby felt when he had to start dialysis...Like it says in that old INXS song, "hard to believe we need a place called hell".
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Sorry PrimeTimer.
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Man, PT, I feel rather overwhelmed just READING about your predicament, so I can barely imagine what it must be like to LIVE it. I am so sorry that there are so many stressors in your life right now.
I can see why you'd be concerned about hubby's toes. OK, so it's not gangrene, but it is still worrying.
I have a feeling that even if you were to cook up a banquet, hubby would still be malnourished. If he has lost his appetite, a banquet probably wouldn't be that appealing.
And you're right in that the fact that other people are having a rough time, but that doesn't make your own rough time any less rough. I hope "venting" helps even just a little bit.
Perhaps you could post each morning which thing(s) your nighttime reverie revealed as something to be thankful for.
:grouphug;
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Yes, MooseMom, venting does help. I think there are a lot of people that could be venting right now and they should. People should let it all out. Venting may not be a solution but bottling things up inside doesn't help and in fact, may actually hurt. My husband and I talk, talk, talk and we fight and then talk some more. But even then I still feel the need to vent and not just unload it all on him. These are hard times -for us all. But besides venting I want to see some good in each day. I want to hear myself acknowledge some goodness and to feel it. I want something to smile about. I need to bring my stress down a notch.
Thankfully, my husband was able to get an appt for tomorrow with the foot doctor. This was actually a nice surprise. Thought it would be a couple weeks but no, they will see him pretty much right away. So we are VERY thankful for THAT! And I am thankful for roof over our heads and food on the table. Made hubby take advantage of his appetite and talked him into eating a little more today. I am thankful for that, too. Who knows, maybe we will both sleep tonite. Or something close to it.
Thanks, MooseMom for being there! You just gave me even more to be thankful for!!
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How was hubby's appointment with the foot doctor? I'm glad to hear he was able to see him so quickly!
AND
Did the two of you sleep any better last night? I know you're both exhausted.
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MooseMom: Slept better knowing he had an appt. for the next day but was not good news. The vascular doctor kept saying "no gangrene" but the foot doc says it is "dry" gangrene. Next week they are going to send him for an MRI to rule out osteomyelitis (bone infection). He was going to have an MRI yesterday but they sent the order to a place that is out of our network for the insurance. So now we start again on Monday. They do not think he will lose a leg but maybe one toe. I am so upset about this. I use to check his feet for him but at some point, he took over that duty. I cannot stress enough how important no, how "critical" it is for Diabetics to check their feet DAILY.
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I understand that many people with diabetes can suffer from poor circulation to the extremities and that it is therefore important to look after the feet. I am sorry that the news was not better, and I am also very sorry that you are having to deal with healthcare providers who are "out of network". Why would they send you someplace that was out of network? Is it the only imaging place around, or do they have some machine that is super duper fantastic or something?
Keep us updated, OK? You two are really going through the wars. :cuddle;
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My husband told them that the imaging center they wanted to use was out of network but the nurse insisted they weren't. We should've made our own arrangements for them to fax the order to a center that is in-network. Because of covid-19 social distancing orders I wasn't allowed to go with hubby to the foot doctor but if I had...by the time I found out about them sending orders to the out-of-network center it was too late in the day to do anything about it. Really ticked me off. And of course hubby didn't have the list with him so had to wait til he got home. He's also not as assertive as I am. My god, man! Stand up and have a backbone, take charge!! Oh well...too late now. They're going to hear from me Monday morning. And they had better listen. I don't think they will want to further upset an already angry woman on Prednisone and Methotrexate. One rude nasty family member has already gotten a taste. I am not putting up with any crap these days.
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Ah man, Pea Tea, feeling so bad for you (though I know you don't want a pity party). You two are definitely being sent through the ringer. But despite all of this, your attitude remains strong. Please reach out if you need anything.
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Hubby had an MRI on both feet. That was last Friday nite (imaging center took him at 8pm, great service!). Doctor has the results and said he can go over it with him next Friday. Since there is no rush we are assuming they didn't find any bone infection and he will just need the purple/black stuff on his toes debrided. Years ago they found a very small amount of bone infection started from a small sore and had to amputate the tip of one toe. They did it almost immediately after seeing it on an MRI. Doesn't seem to be any rush this time so we're keeping our fingers crossed and saying a lot of prayers. Our faith in God has been tested but it's the best thing we have going. I pray for continued blessings. We can be stronger thru our faith. We just need to "be still and stay calm".
As for myself, I am ready to be weaned off Prednisone so going to start begging. I can't remember the last time I slept thru the nite and my face is so swollen now I swear it's going to explode. Getting thru the Methotrexate, it's not too bad but no picnic. Perhaps it is working tho because I am now able to sit without oxygen for about 30 minutes. It's not much but I will take any progress I can get. When you have scarring you learn to make every breath count. I tried to clean our bathroom the other day and just scrubbing the sink about killed me. And that was with oxygen on. But I'm not folding up shop. I'm still having pain but that peculiar body pain that seemed to be signaling death seems to have let go of me. At least for now.
A lot more happened last week and I thought I was really going to lose my mind but don't care to write about that right now. I need or want to stay positive. Got to watch my nephew graduate from high school -all from the comfort of my own home and with the help of Livestream. Because of Covid-19 CDC guidelines they couldn't hold a normal ceremony but did let the kids walk across a stage while parents watched from their cars. It was Livestreamed so I am very grateful for that. My nephew is very special to me. As a little guy he spoke some of his first words to me at a time when he really could not talk. For you see, he has Autism. He is considered "high functioning" and very, very smart. I am so proud of what he has overcome to get where he is at in life. He has made many friends at school, participated in sports and got his driver's license. And now he's already started college early! He's become quite the fantastic young man. Sad to see so many young people in the news these days not even acting human...So glad my nephew is on the right track and knows he is loved and how precious life is. He's a go-getter and doesn't make excuses. Watching him walk across that stage was an absolute blessing and made my day. See, blessings are abound!
I will write more but don't be surprised if it's a while. We are going thru a trying time and it's just about taken everything out of us but...we're not giving up. Just going to try to keep muddling along. Stay safe. Be still. Be calm. Let go of some of your worries.
I recently read a comment on another site where a man who was having trouble falling and picking himself back up had figured out a way to help himself. He said he got himself a large dog and trained him to come to his side if he falls. He said by hanging on to the dog's collar he is able to lift himself back up. Another commenter replied "that won't work for me because I have Chihuahua's". Now I know none of this is funny but I'm sorry -that made me laugh! Chihuahua's...lol...lol...
Have a good one!
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:rofl; The chihuahua comment was funny despite the context!
You know I always am interested in and am grateful for your updates, but I don't want them to become burdensome to you. Please don't feel they are expected or obligatory.
I'm hopeful about your husband's feet and am wishing him all the best.
As for you, even though I have been taking prednisone for 8 years now, I've not had to take a high dose and therefore have not felt the dreadful side effects you are experiencing. But I don't have to have had that experience to understand that it has not been fun for you. I hope your doctors will help you find a way to come off of it while still maintaining the health you still have. Good luck!
I hope that whatever happened last week is something that you can eventually forgive and/or forget. Congratulations to your nephew! My own son was diagnosed with "high functioning autism" may years ago, and despite that, he finished school, got a job on his own, and got a driver's license. He has a much more active social life than I do (well, pre-covid). I am very proud of him as you are of your nephew. I'm glad he makes you smile.
I'll be thinking of you as time goes on. Good luck to you and your husband. If we can help, please let us know. :cuddle;
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Well, I have not one but now TWO rare serious autoimmune diseases. I have Sarcoid Myositis to add to the Pulmonary Sarcoidosis. Sarcoid Myositis is not the same as Polymyositis altho you feel like it is. And I may also have Rheumatoid Arthritis. Lots of labs and a new heavy duty treatment in my future. I knew I was feeling sicker but did not expect this. Just thought I needed to suck it up and get out of bed more and build up my strength. Well, there was a reason for feeling weaker and why I keep feeling like I am losing my legs. It's not me or my attitude, it's the disease.
Anyways, I might not post for a while. Hubby and I both have a lot going on, a lot of stress and much to deal with. But I am going to do battle to get better tho, that's for sure. I don't plan on giving up so I've got to slay the beast. Hubby is doing okay but not great so he needs me to get well. Simple things like cooking a healthy meal for him use to do a lot. I haven't been able to do that tho in a while. If I could just be able to do some of the things I use to then I think we will both do alright.
Hope you all enjoy the holiday season and stay safe! Best wishes to you all!
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Oh Pea Tea, I am sorry to hear that one more helping of illness has been heaped on your already full plate.
For the record, I don't think any of us thought it was "you" or "your attitude", and I hope you really didn't think it was, either.
We all understand why you might not post for a while, but I do hope that you will occasionally drop by with an update. We all wish you the best, and we hope your hubby just keeps on keeping on, too.
:grouphug;
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Can this year, or even WEEK, get any worse?!?!
Pea Tea, so very saddened and disheartened to learn of your new diagnosis. Shaking my damn head at fate right now.
Never have I ever thought anything less of you or your attitude. Rather, I have viewed you as a fighter. Still do.
It is very understandable to need time away to process and reassess. Please check in when you can and know I will think about you. Take good care. :grouphug; :cuddle;
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So, hubby is now in the hospital recovering from a toe amputation. Actually, they transferred him to another hospital for PT rehab. It is slow going. He's on a lot of pain meds so talking to him isn't easy. This is the second toe he's lost to Diabetic ulcers that have spread and infected the bone (Osteomyelitis). What starts out as a small sore can quickly end up becoming a crisis and it did. That is why diabetics must check their feet every day and not let things go. They simply cannot afford to ignore things and hope for the best.
Meanwhile, I have decided to cancel all of my own appointments and treatment for the time being. For one thing, I have no car. Looong, painful and embarrassing story but hubby's car was repo'd and after driving mine for only a week, he wrecked it. Totaled it out. And it was old and used so not worth much, other than I relied on it when I could drive. But having no car is not the only reason I've cancelled everything. I am here alone and do not want to start/add another treatment without someone else being here in case I have a reaction or get sick, etc. Sometimes I think I am starting to have small (very small) seizures, which would not be uncommon but does make me a little nervous. So I don't know that adding something even more heavy duty would be a good idea right now. Hubby has been in the hospital a couple of weeks and it has been hard enough being apart from him and then trying to do stuff on my own here at the apartment has been an adventure for sure. But I am doing okay, I will be alright.
Dang, just when I had psyched myself up to add the new treatment to my regimen this happened. I'll have to psyche myself back up again. It's always a little scary to start a new medicine. It's not like I am super afraid or paranoid, just cautious. My docs are probably going to be ticked at me but oh well...that's the way the cookie crumbled. It's only temporary tho, right? I want treatment so it's not like I am saying 'no" to it. And there's a chance that it could make me better and put me into remission within just a few months versus 1-2 years or longer. But I want to make sure hubby is back home and doing well before I proceed with anything. And of course, he has to go car shopping.
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Pea Tea, thank you for the update, especially considering how full your plate has been. Please give our regards to your hubby, and tell him that we wish him a speedy recovery.
I am sorry that you have no car at the moment and hope that this does not make life too much more difficult for you. I look forward to you telling us about your car shopping once your hubby is back home and feels up to it.
Now, I know few people who are more thoughtful than you are about your health and about how to maintain your health as well as possible. Your reasoning for why you do not want to start a new med/treatment at this moment in time makes a lot of sense. I understand that you are not saying "no", rather, you are saying, "not yet." I "support" your decision (as if my "support" has any value at all! lol), but I do not like the idea of you maybe having to delay going into remission for a 1 or 2 or longer rather than going into remission in only a few months. I will say up front that I do not know anything about the new medicine they want you to take, but the idea of a delay makes me sad. I understand your caution (I'd be paranoid, myself), but I don't like the circumstances, if that makes any sense at all. I'm not suggesting that you rethink things, and I am not doubting your wisdom; I'm merely showing my frustration on your behalf!
Anyway, do keep us updated when you can. I hope your husband gets home soon and recovers well, and I hope you can get the treatment you need sooner rather than later. :grouphug;
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Thank you for your concerns, MM. I don't like this delay either. Actually, I am kind of peeved that my own healthcare has to be put on-hold because hubby did not take care of his toe sooner. In fact, I am downright angry about things...no car, no treatment, no help around here. But I have to look beyond my anger now. Hubby is in the hospital and it's no picnic for him, either. One of my doctors (I have 3 now) described my illness as very rare and very serious. I watched his face turn grey when he said that. But at the moment I am not in a "life or death" situation and hubby with his infected toe was. It could have been much worse...he could have lost his foot or entire leg or get sepsis (still a risk of that). I know that being angry does me no good. I also know not to deny myself my own feelings so while I admit to being angry, I am going to try to move forward and just do my best to work with what I've got.
Working with what we've got isn't always easy. You have to keep focused. What I've got is: oxygen machine, food, a roof over my head, warm bed, our 2 cats and I can still bathe and dress myself. I still have our landline to dial 911 if needed, a computer and my faith. Alrighty then! Deep breath! Hopefully hubby will be home in a couple days and after he recoups a bit, we can figure out the car situation. We are/were hoping to get help from family (they all live in other states) but getting help from them is like pulling teeth. And it is humiliating. They all have their own ideas and comments and remarks and list of personal questions regarding our expenses and how we should learn to cut expenses, yada yada yada. The last I checked we aren't living in a mansion and haven't done any personal shopping of any kind for ourselves in years. We are both wearing the same clothes we've had for 10 years. We eat once, maybe twice a day. We don't go out. Our last apartment didn't always have running water or air conditioning so I guess our current apartment could be considered an "upgrade" because it does consistently have water and A/C. And then there are the family members that tell us we should apply for welfare and ask why we haven't. Or the in-law that tells you about budgeting but she herself has never lived on her own and paid her own rent -ever! Okay, so now I went and gave myself a pity-party here. Sorry, didn't mean to. I've let the anger back into the picture and need to stay focused. So out with that anger crap. Gotta focus. Whew! And you know what? Who would ever think a hot bowl of creamy Cream-of-Wheat would be such a treat! It's helping me fight the darn cravings you get from being on Prednisone. Another positive to add to my list. In-laws be damned.
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You know I've always admired your grit and determination, Pea Tea. You've never let yourself find comfort in denial. You recognize your situation, your recognize your feelings, yet you put all of that aside and into perspective, and then you get on with it. If you did not feel anger at how things are, you wouldn't be human. But you don't let that anger keep you from what you need to do. Sometimes we need to throw a pity party, but you are good at knowing when that party gets dull and when it is time to leave.
You've mentioned your family before, and I am frankly very disappointed that they have not given you some sort of assistance. I am very sorry about that.
I wish you didn't have to make a "choice" between your healthcare and that of your hubby. I hope that changes very soon.
I do not like hearing that your illness is "very rare and very serious". Those are frightening words.
My husband was talking about Cream of Wheat just last night! He loves it, too.
We all love you, Pea Tea!
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Ah man Pea Tea.
I truly hate the situation that you are in (serious, severe illness and needing to postpone treatment), but you have logically thought all of this out. If I were in your shoes, I would feel the same way, and there are just too many balls in the air to take on something new with side-effects. That said, I am cursing a little that you can't get the treatment you need right now so that remission can come sooner, rather than later.
Anger is a totally acceptable feeling when one domino goes and they all tumble. You are wise in that you let it come in waves but never let it turn into resentment. It is important to process these feelings and then move on the next stage, and plan. No one would ever accuse you of having a pity party. And you know what? So what if you have one? With all that is going on, you are entitled to a pity gala.
I really do like how you focus on the positives and what you do have. That sort of mindset got me through some rough times. No matter what was out of my control or negative, there were certain positives to hold on to and what was still retained.
in-laws are problematic creatures to deal with. They always know better and seem to think they have the whole story from the outside looking in. In some regards, I am lucky mine are thousands of kilometers away (like 7500 km, hahaha) and they still stick their nose into things that really they don't understand nor have experience with. It sort of becomes like hostage negotiations to broach a topic and then gently ask for some help.
If they can't willingly see or offer easily what needs to be done in the current context of your and your husband's situations, I truly want to club them. :grouphug;
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So, I get a call today. Hubby is going to be transferred to a nursing facility for an additional 20 days physical rehab/nursing care. Just yesterday he told me he was doing better. His case manager says otherwise. Meanwhile his family continues treating me like garbage. I am done with them and may not be speaking to hubby for a while either. Happy New Year.
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How do you feel about hubby being away for an extra 20 days? Does it make you anxious having him gone, or do you feel that it is a chance to catch your breath?
How does your hubby feel about the way his family is treating you (well, both of you)? Does he insist on maintaining familial ties, or would he be OK with never speaking to them again?
It must have been a shock to hear hubby say one thing and his case manager say something completely contrary.
I am so sorry this is happening during the holiday season AND during this covid year.
Are you OK there on your own?
:cuddle;
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Pea Tea, I am just so sorry that the situation has deteriorated. :cuddle; You have to look after yourself as your priority. Very saddened that other "adults" cannot acknowledge the severity of the situation - your husband (who knows how you suffer and his own state of health) and his family. You are entitled to whatever direction you choose. Please, take care.
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So, I get a call today. Hubby is going to be transferred to a nursing facility for an additional 20 days physical rehab/nursing care. Just yesterday he told me he was doing better. His case manager says otherwise. Meanwhile his family continues treating me like garbage. I am done with them and may not be speaking to hubby for a while either. Happy New Year.
Hello PT,
I do hope that the truth is somewhere between : that your husband says he is doing better and that his case-manager says otherwise ... and hopefully "things" turn out alright eventually for both of you (fingers crossed !!!) ... and please don't forget to take good care and look after yourself during these stressful times and I wish you both all the best from Kristina. :grouphug;
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How do you feel about hubby being away for an extra 20 days? Does it make you anxious having him gone, or do you feel that it is a chance to catch your breath?
How does your hubby feel about the way his family is treating you (well, both of you)? Does he insist on maintaining familial ties, or would he be OK with never speaking to them again?
It must have been a shock to hear hubby say one thing and his case manager say something completely contrary.
I am so sorry this is happening during the holiday season AND during this covid year.
Are you OK there on your own?
:cuddle;
I feel cheated MM. But not by hubby or his family. After some thinking I realized that the real reason why I feel so cheated is because I'm sick. Same goes for why I am so angry right now too. When I first learned that I was sick I thought it would be a matter of taking some medicine and I'd get better. But what I have is life long and any break from it will, if at all, come in the form of remission. Damn! At 56 I thought I should be in my prime but then a bus hit me. Damn bus.
As for hubby, before I got sick I would help him keep up on his feet and "all things Diabetes/Dialysis". But, he's a big boy and he took a gamble and now, as a married couple, we are both paying the price. And that's just it; we are a couple. Partners. Each other's half, two peas in a pod. What affects him affects me and vice-versa. So, it is both our problem and we've got to deal with it. We've just got to. Dang it. I am angry at him but I know that feeling this way much longer won't do either of us any good. And I want him well so he can come home. I know he feels bad, the nurse told me so. And so did one of the rehab specialists at the nursing home he is going to. So, next has to come recovery.
As for hubby's family well, I'm not married to them. Why he hasn't severed ties I don't know but we have talked about that before. I told him I cannot and will not tell someone to cutoff ties to their family but I did tell him that if it were me, that's what I'd do. And then when I spoke to him on the phone yesterday, I told him that was the last straw, that I told his father to not ever call me again and that he had better make that crystal clear to him (if his father should bring it up) because I mean it. I don't go where I'm not wanted and that includes family members behaving satanic.
Things are hard right now being alone and all but amazingly I did alright today. I expect I could give it a go tomorrow too. 2020?? Damn bus, lousy year...
*I will probably at least wait til tomorrow to call hubby...let him sit and think about this a while and what it did to me. I get to be mad for one more day.
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Yeah, Pea Tea, I can understand those feelings. I felt angry, too, when I saw how damaged my kidneys were and that this would never be over. I remember the first time I had to fill a medicine box with all of the pills that had been newly prescribed for me. I was so angry I threw the whole thing against the wall, and pills went flying everywhere.
You deserve the time and opportunity to enjoy a day of just being angry. Better that than to allow those feelings to just fester and eat away at your soul.
Damn buses.
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Aww man, Pea Tea. That feeling of being cheated and the anger sadly go hand in hand. I am so sorry that you have to experience it. For real. It sucks.
I felt so cheated that I never got to have a normal childhood, always poked and prodded by needles. Couldn't be "normal" like the other kids. Didn't experience the same things they did at the same times or in the same ways. I felt so cheated out of life. I still do in certain regards. In fact, if I start focusing on it right now, I can smash a glass against a wall. All of this is, sadly, super normal.
Follow MooseMom's advice to acknowledge these feelings and give them time. They will most definitely eat at your soul if you don't give them the attention they need.
What you are going through is a major life change and it has to be processed. You can't sweep it under the carpet and push on. Yes, sure, you have to push on, but you need to scream, rant, be angry to be okay sometimes. Please make sure you have a listening ear though. It really does help. In my experience, it causes even more frustration when someone doesn't acknowledge what you are sharing too. Take care, dear.
The good news is that out of this small circle you are in, you are still the winner of Normal Island!
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Wait a minute...what are you doing about transportation since you no longer have a car? You mentioned that you and hubby were going to try to get a new one once he got home, but now that he will be in rehab for a couple of weeks, are you stranded? Will you be OK?
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Ok, now I am in tears. Hubby was transferred to a nursing home, all seemed to go okay with that. They were suppose to take him to dialysis this morning. I called and got no answer so hopefully that means that they did. Meanwhile, his father and sister called me....THEY want OUR social security numbers so THEY can sign hubby up for SS and me for Disability and to also see if we qualify for welfare! Is this not crossing the line?? Is this not NONE of THEIR business?? Is this outrageous or what?! I told them to back off and that it was not their place to be doing this stuff. I am so upset, I wonder if I should tell them I will call the police or authorities on them. This is just unbelievable. And now my phone is ringing non-stop...it is them again.
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OK, all sorts of red flags are flying here.
They want y'alls SS numbers? Not only is this none of their business, but it also opens the door for them using this info fraudulently. Why are they suddenly so interested? Your history with them makes me very suspicious.
On the other hand, and forgive me if you've already answered this, but do either/both of you qualify for any financial assistance? I seem to remember that you'd one time talked about this, but your circumstances have changed, right?
I'm really hesitant to ask this, knowing the strife between you and them, but do you think it is at all possible that they are finally trying to be of some help to you?
I'm sorry this is happening. I hate to see you upset as you already have so much on your plate.
Is there any further news about your hubby? :cuddle;
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Social security numbers so THEY can sign hubby up for SS and me for Disability and to also see if we qualify for welfare! Is this not crossing the line?? Is this not NONE of THEIR business?? Is this outrageous or what?! I told them to back off and that it was not their place to be doing
Are you paying their bill in full on a private pay basis? If not, this is just an attempt to secure payment for services.
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I'm sorry that you are getting family stress dumped on you in an already extremely stressful time.
I'm pro signing up for assistance (when convenient) if it will make your life easier, but you should not be rushed into anything.
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They claim they want to help us by signing us up for SS and Disability and Welfare. This is not their place to do that nor do they have the legal Power of Attorney to do that. We had asked them for financial help and while they did help out some, they do not want to going forward and said that we need to be on welfare. Now, I can certainly understand if they do not or cannot help us but they should just say so and leave it at that. There is no need for their lectures, their personal insults or to be telling us what to do with the "Almighty is Thou" tone they take with us. We've told them that. But yet they continue badgering us about SS/Disability/Welfare, etc. And we keep repeating that hubby will sign himself up for SS and if physically able to, he will continue working as much as allowed on SS. I do not qualify for disability...unless I want to get a lawyer and go to battle the next 4-5 years there is none for those with Pulmonary Sarcoidosis and Sarcoid Myositis. But that's irrevelant...it is NOT THEIR business as to whether or not me and hubby have signed up for anything at all or if we qualify and it is certainly NOT THEIR place to sign us up or to push us to do so. Just because someone helps you (in the past) does not give them permission to be all up in your business and harassing you about it. What makes it all worse is that we've already repeatedly told them this and they act like we didn't. They are very very pushy people, very intrusive in each other's lives and extremely rude with everybody, quite blatant so it's not just with us. But even after all these years of being married to hubby and seeing "these people in action", it still bothers me. I know I shouldn't let it, just blowing off steam again today. I know I need to ignore them and not get so worked up. My doctors would probably be ticked to know.
Something told me that with hubby being away they would try ambushing me over the phone and I was right. I remember the first time I met them they had flown out to visit hubby and to meet me. While visiting, they literally went through every drawer, every closet, every box throwing out hubby's first deceased wife's things -without asking him for permission. Hubby was so upset by it that he just stood there looking at me and ready to break down. I had to tell them to stop and not touch anything because hubby and I had already discussed when/how he would get rid of her stuff and that we had planned to do it together. It was not their place to go through his house and decide what stays, what gets tossed. And that was my very day meeting them!
Anyway, we ask nothing from these people and yet every phone call is about "did you sign up for welfare, etc,etc yet and why not?" Now it's "here, we want to help, give us your social security numbers..." But let's say we did ask them for financial help...it still does not give them the right, legal or otherwise, to ask as us for our SS numbers and/or get in our personal business. If I help someone I help someone...I don't do it thinking that gives me the right to tell them what to do and ask them personal questions. It's not right. Going to have a hot cup of coffee now and perhaps some of those little lemon wafer cookies and chill out. I know the New Year won't be off to a good start but g-damn! I am going to make the most of any little positive thing and cherish it as I hope everyone on ihd will somehow be able to do the same.
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I'm sorry that you are getting family stress dumped on you in an already extremely stressful time.
I'm pro signing up for assistance (when convenient) if it will make your life easier, but you should not be rushed into anything.
Thank you, iolaire. I agree and glad you feel that way.
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Good grief, Pea Tea, I can't believe how incredibly intrusive these people are! I mean, I knew there were bad feelings there, but I had no idea! I can't believe that on the first day they met you, they'd go through your house like that.
I am sorry this conversation has resulted in bringing up bad memories, but thank you for explaining the background. Of course you are right in demanding they keep their giant schnozes out of your business, no matter what their true intentions may be. And of course iolaire is right in saying that you shouldn't be rushed into making any kind of financial decisions.
I hope you've had your nice cuppa and cookie and that you are feeling a bit less stressed.
Oh, btw, when I first read your post, it did occur to me that their timing was surely not coincidental, and I think your word "ambushed" is absolutely spot on. I'd thought the very same thing.
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Ok, now I am in tears. Hubby was transferred to a nursing home, all seemed to go okay with that. They were suppose to take him to dialysis this morning. I called and got no answer so hopefully that means that they did. Meanwhile, his father and sister called me....THEY want OUR social security numbers so THEY can sign hubby up for SS and me for Disability and to also see if we qualify for welfare! Is this not crossing the line?? Is this not NONE of THEIR business?? Is this outrageous or what?! I told them to back off and that it was not their place to be doing this stuff. I am so upset, I wonder if I should tell them I will call the police or authorities on them. This is just unbelievable. And now my phone is ringing non-stop...it is them again.
Sorry, I missed the fact that the intrudees were his father and sister, not the nursing home.
If it was an offspring in PA, that would be a different story since the courts will seize assets of children to pay parent's nursing home bills (yes, really!!!).
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They claim they want to help us by signing us up for SS and Disability and Welfare. This is not their place to do that nor do they have the legal Power of Attorney to do that. We had asked them for financial help and while they did help out some, they do not want to going forward and said that we need to be on welfare. Now, I can certainly understand if they do not or cannot help us but they should just say so and leave it at that. There is no need for their lectures, their personal insults or to be telling us what to do with the "Almighty is Thou" tone they take with us. We've told them that. But yet they continue badgering us about SS/Disability/Welfare, etc. And we keep repeating that hubby will sign himself up for SS and if physically able to, he will continue working as much as allowed on SS. I do not qualify for disability...unless I want to get a lawyer and go to battle the next 4-5 years there is none for those with Pulmonary Sarcoidosis and Sarcoid Myositis. But that's irrevelant...it is NOT THEIR business as to whether or not me and hubby have signed up for anything at all or if we qualify and it is certainly NOT THEIR place to sign us up or to push us to do so. Just because someone helps you (in the past) does not give them permission to be all up in your business and harassing you about it. What makes it all worse is that we've already repeatedly told them this and they act like we didn't. They are very very pushy people, very intrusive in each other's lives and extremely rude with everybody, quite blatant so it's not just with us. But even after all these years of being married to hubby and seeing "these people in action", it still bothers me. I know I shouldn't let it, just blowing off steam again today. I know I need to ignore them and not get so worked up. My doctors would probably be ticked to know.
Something told me that with hubby being away they would try ambushing me over the phone and I was right. I remember the first time I met them they had flown out to visit hubby and to meet me. While visiting, they literally went through every drawer, every closet, every box throwing out hubby's first deceased wife's things -without asking him for permission. Hubby was so upset by it that he just stood there looking at me and ready to break down. I had to tell them to stop and not touch anything because hubby and I had already discussed when/how he would get rid of her stuff and that we had planned to do it together. It was not their place to go through his house and decide what stays, what gets tossed. And that was my very day meeting them!
Anyway, we ask nothing from these people and yet every phone call is about "did you sign up for welfare, etc,etc yet and why not?" Now it's "here, we want to help, give us your social security numbers..." But let's say we did ask them for financial help...it still does not give them the right, legal or otherwise, to ask as us for our SS numbers and/or get in our personal business. If I help someone I help someone...I don't do it thinking that gives me the right to tell them what to do and ask them personal questions. It's not right. Going to have a hot cup of coffee now and perhaps some of those little lemon wafer cookies and chill out. I know the New Year won't be off to a good start but g-damn! I am going to make the most of any little positive thing and cherish it as I hope everyone on ihd will somehow be able to do the same.
Hello PT,
I feel very sorry for you and your struggle to defend yourself during such terrible mental surprise-attacks coming from your husband’s family, whilst you are alone at home and your husband is being treated in hospital. I can well imagine how very frightening that situation must be for you and feel very sorry for you.
Did his family ever reveal their reasoning behind this strange behaviour they show towards you? Do they have a history of harassing people at their most vulnerable moment? Where do these people come from? Is there a history?
The only defence that comes into mind is to try and find an authority/Charity or solicitor specialising in assisting victims of severe intrusion and mental harassment. You might have to pay a bit of money to the solicitor to write a very “sharp letter” to this family, but might it not be a “good investment”, for peace of mind, so to speak?
I wish you both a much better 2021 with hopefully a bit of good luck and best wishes from Kristina. :grouphug;
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Note to self: Keep a bag packed for the hospital. Hubby went to the hospital with just the clothes on his back and nothing else. No spare clothes, no necessities, no bag. With the help of my brother (thank god) I was able to order some cheap t-shirts, boxers and sweatpants and had them shipped to the nursing home where hubby is rehabbing. They have provided him with other necessities. This seemed to make hubby's day, he sounded more awake over the phone. His PT is rough but going well and they take him to his dialysis like usual (Fresenius clinic, not a hospital). So he's happy to see his chair mates. I'm glad he gets to see his friends. Since arriving from the hospital he has to complete 14 days of quarantine at the nursing home before being allowed into the common areas or gym. For now the Physical Therapist comes to his room. Hubby has been tested twice so far for Covid and I expect that they will continue testing him. They say his surgical site (amputated big toe) looks good and the wound vac may be removed in the next day or two. He has an appointment with a doctor but doesn't know when and doesn't know if the doctor will be coming to the nursing home or if they will be driving him to the doctor's office. And that's the bad part...getting info or anything for that matter at the nursing home is like pulling teeth and slow going. That's sad. He's there only temporarily but what about those who have to actually live there? You hear or read stories about nursing homes and it makes me shudder. No one is abusing him but he did tell me they don't always come when he beeps for a nurse and when they do come and then have to leave but say they will be right back, they aren't. They don't come back. I imagine that is very frustrating if not a little degrading for a patient.
I've been calling hubby every day, sometimes twice or three times. Very lonely here at home without him. Thank goodness for our 2 cats! I know they don't really understand me but I like to think that they are listening. They're good listeners. As for myself, breathing has not been easy these past few days. Even with the oxygen. But I am dealing with seasonal allergies right now so this was to be expected. Sort of. Following my doctor's instructions prior to allergy season, I've increased the Prednisone to 40 to get some relief. Dang! Just when I had finally tapered down to 10, had to go back up to 40. But it's worth it. When you're on oxygen and a lot of medications you start to learn that sometimes the pros of benefits outweigh the cons of side effects. Sometimes. Right now, at least for me they do. When hubby gets home I will return to the Rheumatologist and Pulmonologist to start another form of treatment. Humira. It's going to be scary but at this point, I welcome any possibility of any drug that may help. I cannot see myself getting worse off. Perhaps I ought to "pack a bag" for myself. Hubby wouldn't have a clue what to send me.
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O PT, I can’t believe the stress you must be under. :cuddle;
And I actually agree to pack a bag for yourself too, just to avoid poss extra pressure later on. And the 40 mg Prednison won’t be helping your feelings, but it’s good to hear hubby is doing well.
I’m sending all the positive, and healing vibes your way.
Lots of love, strength and healing, Cas
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Hubby is FINALLY home! He came home yesterday. An volunteer at the nursing facility drove him home and even rolled him in his wheelchair inside our apartment. Very very nice! Hubby looks better but still needs to put some weight back on. He has to use the wheelchair because he can't walk on the foot with the toe amputation for another 3-4 weeks. I am having to help him with some things but we take it slowly and keep telling ourselves "it's only temporary". To keep each other going we talk about fun stuff and try to laugh. We're going to stay away from dark stuff as best as we can. Since we're both challenged right now, we figure keeping things light and even funny will be the only way to make this work.
We look to the future now...with the help of my brother, we hope to look for a car next week. Something cheap of course. Then when hubby returns to work we can pay him back. Or use our stimulus checks if they should arrive. Relief! To finally see a little light at the end of what seems an endless tunnel of doom is indescribable. We have been down and so stressed for so long now that it's almost overwhelming to feel we might finally be turning a page. We're paranoid. But, we've got to keep our heads or else we will lose the battle.
It is one thing to be the supportive spouse, quite another when the both of you are in need.
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That’s good news, I’m happy for you two
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Great news PT !!! Take good care of eachother.
Sending lots of love and strength and luck vibes over your way
:cuddle;
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It's about TIME we heard GOOD news from you, Pea Tea! LOL! Oh, this made my morning. I am so happy for you both and hope that you find lots of happiness in these days of strife. Things are getting better!
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Hello PrimeTimer and many thanks for the update and I wish you and your husband all the best and keep my fingers crossed. Take great care and I send you my kind regards from Kristina. :grouphug;
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Thank you so very much everyone for the support. It lifts me to know the ihd family is always supportive of everybody. Means more to me than you know.
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IT IS WHAT WE DO!!! lol!