I Hate Dialysis Message Board
Off-Topic => Off-Topic: Talk about anything you want. => Topic started by: PrimeTimer on June 03, 2019, 12:46:53 AM
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My husband likes to read the Bible from time to time. He's not a "Holy Roller" or preachy but the other day he did recite a little from the Bible to teach me something. Since I've been under the weather lately I haven't gotten out much. Not even to buy myself some much-needed new underwear to replace the ones I've been wearing for half my marriage that are now sporting tears and holes. Well, I guess hubby couldn't stand it any more so he went out and bought me several new pairs. They were the right brand, the right size and color. They fit perfectly. He's a real gem for doing that. When I thanked him he said that when the Lord said we should lead a life of holiness he doesn't think He meant that to include our underwear. ::)
What say you? Got any life lessons you want to share? :waiting;
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No life lessons to share yet PT, but I love yours. Please give your hubby a cuddle from me too
:cuddle;
And get better soon sweety, love, Cas
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Actually, I do have one story to share.
Two weeks ago, my husband and I had just returned home from holiday. It was dark, cold and wet. Our taxi had just pulled away as we were trying to open the garage door. It would not open.
My husband tried to use his keys to get inside the house. In an abundance of caution, I had locked the storm door, and for whatever reason, he did not have a key to that door on his keychain.
Remember, it was raining.
I had put a spare set of keys hidden in the garage, but as the garage door would not open, I could not get to them.
I had also put a spare set outside in an undisclosed place. I managed to retrieve those, and after struggling with various keys finally found one that would open the back door. So, at least we got in.
We tried to open the garage door manually from inside the garage, but the large spring had broken, so we could not open it.
I forgot to mention that this was a Sunday night, so despite being able to call for emergency service, they would not come out to help us. We had no food in the house so had to order something to eat to be delivered.
Things just kept getting worse. I could write a small book of all the things I found that had gone wrong in the house while we were away, but I will spare you.
The next day, I spent all morning doing all of the laundry and trying to get the house back in order. The garage got fixed, and we were able to go get food.
While my husband was waiting in line to get cheese at the deli, I went to get eggs and a half gallon of milk from a local dairy; it comes in heavy glass containers.
I was utterly exhausted, and I couldn't find my husband...who had the shopping cart. After wandering all over the store, I found myself back near the eggs, holding on to these heavy and fragile items, and I turned my back to the world and started to cry. I couldn't stop.
It was all so silly, but I was beaten. It was as if everything that was causing me anxiety in my life bubbled, then blasted, upwards.
A very nice lady came up to me and asked me if I had just had some bad news. She was so kind. I explained tearfully that no, I was just fine, but that we'd just come back from holiday and our house was broken and I was just so tired and I couldn't find my husband and he had the cart and ... She asked me if she were to find a good looking man, should she send him my way. LOL! That made me laugh, and I felt much better.
I finally found my husband still waiting for his cheese. ::)
The next thing I knew, this nice lady found me again and gave me a small bouquet of flowers! I nearly cried again.
Quick flashback....when I first went to the tx center for my pre-tx evaluation, I got into a conversation with one of the many people I had to talk to that day about tea. The next person I had to talk to was the surgeon, and during our conversation, the first person quietly interrupted and gave me one of her precious bags of tea. I was very touched.
Anyway, those are the only two times I can remember being the recipient of a "random act of kindness". In these divisive times, I think it is even more important to just be kind to everyone, especially to those you do not know. A smile, an apology (no one ever seems to say, "I was wrong, and I am sorry."), a kind word, a "random act of kindness", or a "thank you" can make all the difference in a day in the life of anyone you may encounter.
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That is a lovely story, MM. Hard to imagine you in a peek of funk. Glad it was transient and you so eloquently reminded everyone to have gratitude and to be kind to our fellow beings.
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Cassandra: Now whenever I look at my underwear I think about the life of "holiness" I've been living! :rofl;
MooseMom: I loved your stories and so very much agree! I try not to judge people and because of that I am finding myself more comfortable with some of them and in turn, less stressed. Random acts of kindness also goes a long way, for both the giver and the recipient. I love being the giver tho, it can be a lot of fun.
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I love being the giver tho, it can be a lot of fun.
I love being the giver, too. The day that I found out I had been formally and officially approved for the wait list, I was in Houston, visiting my very ill mother (she ended up passing away a few weeks later).
Anyway, I had taken a break from the hospital and had gone out for a bite of lunch. I got the phone call about the wait list while I was eating. I was so grateful to just have the CHANCE at a normal life and didn't know how to express that gratitude. I couldn't speak to my mother; I was quite alone. So, I had a quiet word with the waiter at the restaurant and asked him to put the bill for the party of 3 sitting at the next table on my tab. They looked so unhappy. Well, the restaurant WAS near the hospital, so maybe they had a loved one in dire straits.
They never found out who had treated them to lunch. That memory still makes me smile.
I hope you are feeling better, PT. I bet you look smashing in your new undies! :cuddle; Give your husband a hug; tell him it's from MooseMom on IHD who very much likes your panties story and who thinks he's brilliant!
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Love the underwear and supermarket stories!
Random acts of kindness make us keep our faith in the inherent goodness of the human race.
I must say I have often had people help me out when I’m in need- I always figured people on the outside can tell I am struggling with life and take pity on me, but my friend says it’s because I radiate positive vibes. Idk which is true.
Moose- I had a bad day at a college where I was taking a photo class, and for some reason that day I couldn’t get the film on the spool in the canister and was already frustrated and just busted out crying. I Went outside for some air, still crying, and this security guard came over and was so nice. She asked what was wrong, if I wanted to talk about it, etc. After I kept shaking my head no she asked “do u want to just stand here and cry for a while?”... To which I did and she just stayed there with me, not saying anything.
There really are some good eggs out there in the world.
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Awww, Naynay. :grouphug;
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I tell all the Ladies at Wife's Nursing home that I Love them all as they treat Wife as if she were their Mother.
I can't afford to tip them so I stop by WalGreens every Friday afternoon and buy three bags each of Werthers Soft Caramel with a liquid Chocolate center and three bags of Reisens Carramels coated with Dark Chocolate.
A bag of each goes on the Nurses Desk for all to share Fri afternoon, Sat and Sunday. They all have a sweet tooth.
A week or so ago I overheard one Nurse calling her Daughter trying to get her to bake her a pan of brownies and bring them in while still warm. It didn't work. So I brought in FOUR boxes of mix, all different brands, and four bags of different types of chocolate chips. Nurse handed half to the kitchen Ladies, they immediately whipped it up. We all pigged on Brownies Saturday. And will again next Sat.
Nurses like to eat, and drink. I've brought a couple of fried chickens.
Make runs to a local drive in for huge cups of lemonades.
Anything to make their shift brighter.
They take great care of my Wife.
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That's very nice of you, Charlie! I learned a long time ago sometimes it's the most simplest of things that bring the most enjoyment. Especially if it includes caramel and chocolite! :rofl;
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Victor and I had someone pay for our dinner anonymously. We have passed the favor on. I keep a 20 dollar bill in my wallet just for giving to some one in a restaurant or somewhere once a month.
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Victor and I had someone pay for our dinner anonymously. We have passed the favor on. I keep a 20 dollar bill in my wallet just for giving to some one in a restaurant or somewhere once a month.
What a brilliant idea! :cuddle;
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Like Charlie, we always treated the staff to unlimited mini snickers bars whenever my mom was in the hospital--she got a kick out of doling them out. We felt like if it meant some hungry nurse/resident came after candy, it was just one more person checking in. When I had my transplant, I arrived at the hospital with 6 boxes of the half sized Kind bars (I wanted the doctors to think I make healthy choices) The residents and fellows looked forward to their daily treat-and maybe I got a little more attention for very little cost. Those nurses that work 12 hour shifts get hungry!
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Life is good! :thumbup; I not only have new underwear, my husband's Bible, a hospital Chaplain and new doctors in my life but 3 new diagnosis's. :clap;
Just spent a week in ICCU with: pneumonia, pulmonary hypertension squeezing my heart and lungs and to add to the fun I was told that the Polymyositis is no longer in remission and that I now also have it's friend "Sarcoidosis" to add to the Asthma. There's a lymph and lung biopsy in my near future. BUT... I am breathing again! Went by ambulance with my O2 level at 78. Yup, that explained why I had to keep pacing myself.... I'm home with oxygen at 97. A nice quiet box on wheels making me oxygen 24/7. I've got 17 feet of tubing to get in trouble with. Have to roll with the O2 tank for a while until we figure out what caused all the inflammation in my lungs and where this edema is coming from. Darn Auto-Immune Disorders. There is no explanation for it. There is no cure for it. Just a lot of doc appts, meds, jokes, cursing and when possible, will power. My own body is attacking me (again). Not the first time it's happened but never had to be hospitalized for it or be on oxygen or talk to a Chaplain. Spent nearly 20 years in remission, they said I was lucky to have such a good run while it lasted. Oh well.... Have lost 8 kg's of water this week. The cellulitis was not cellulitis or venous stasis. It was edema wreaking havoc on my legs. But ahh! Amazing how much easier it is to breath when they get all that water off you. And my skinny little legs are back in view again. Hey guys! Haven't seen my own gams for awhile. Looks almost strange. Still gotta wear oxygen tho. But I don't really care if I have to rock and roll a tank of O2 with me now. So be it so long as I can get out and do things again. And I have a lot to do! Best part of all is that I don't have to sleep upright in a chair and can be cuddled right up next to hubby again back in our bed. So long as this O2 tube stays stuck up my nose everyone sleeps!
On lots of steroids now so roid rage comes next.
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Oh, P.T. I'm soo sorry about your predicament. I hope it resolves soon. I'm in a pretty bad place myself, so I have a lot of empathy for what you are going through. Take good care.
I think your story points to the potential dangers of being a caregiver-- all the focus is on the "patient" and the heath of the caregiver can be overlooked and can brew un-noticed. Be careful, everyone.
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PT best wishes for successful treatments.
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I have had pulmonary hypertension. It is not fun. Mine was caused by low hemoglobin and excess fluid, so it was reversible. I couldn't walk across a room without losing breath. It seems like a bunch of things all seem to happen at once. You had 3 different diagnoses, at the time I was going through it, I had gallstones, pancreatitis, and excessive menstrual bleeding. These things seem to come in threes.. *L*
A bit of encouragement for you (I hope). My grandmother had COPD, and lived for 10 years on an oxygen machine. She probably would have lived another 10 if my grandfather hadn't died suddenly. She gave up when that happened and died 3 months later.
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OMG dear PT, an O2 level of 78, I can’t imagine. I’m glad you’re home and sleep in bed again though.
I’m sending healing, and anti-flare-up auto immune vibes your way. Keep busy with whatever you want to do honey.
:cuddle;
Lots and lots of love and strength, Cas
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"PT's back
and there's gonna be trouble!
Hey na
hey na!
Our PT's back!"[/i]
I guess that in your case, new and improved diagnoses means the end of a lot of your suffering, so that's the silver lining in that particular cloud. I know you've had a rough time just breathing, so it is wonderful to hear that an oxygen box and some tubing has enabled you to return to your lovely comfy bed.
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Not sure when yet but going to look into getting one of those smaller more portable oxygen tanks (7 pounds) to run around with. The docs were talking scooters and wheelchairs but I am talking more about lugging my current tank wherever I go on my own 2 feet. I can just lift it and put it in a grocery cart and so long as I've got the tube up my nose, I can breath and do stuff. But the smaller 7 lb version sounds way easier. Of course the smaller one limits the amount of time you can run around with it but some come with a charger and makes it own oxygen. The tank I have at home with the 17 feet of tubing makes it own O2 24/7 but if I want to go out then that's a whole other kind of tank (on wheels) I use. But still, it's all doable for me. I don't need a wheelchair or scooter...O2 tube up my nose and I feel quite good! I can do this! And it sure beats being at a 78 SAT level. Wow. I was almost dead.
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PT, omg, wow. I am glad to see you "doing better" but my gosh, what diagnoses and what a stint you've had! It's getting scary to log onto this site and seeing members going through some tough things. :(
But, you sound to be in good spirits and wahoo for that! Do you remember anything at all with your oxygen being low? When my oxygen got so low that they put me on a respirator, the day or so prior, when my oxygen was below 80, I don't remember anything. My husband likes to remind me I was irritable and threw my whole food tray at him. He heeee... :shy;
The fact you were lucid through all this shows you are pretty magnificent.
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Wife uses an O2 Concentrator sometimes only when she needs it. Those times the Nursing Home also has an O2 Tank strapped to the back of her chair.
As a Retired Mechanic I REALLY Really want to take a Concentrator apart just to see what makes it work.
Always having a torch in the shop I am very well familiar with O2, bottles, regulators, etc..
I have seen a number of TV Ads for small wearable Concentrators. The only concern I wold have with one is battery life. I've had a number of battery operated tools over the years, batteries die. Bottles run out. Spare batteries, spare bottles, or both.
Reminder, spare bottles in a hot car during summer could present elevated risk. Cars get HOT. Summer times I would recommend spare batteries for a concentrator rather than pressurized bottles in a hot vehicle.
Just something to think about.
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I have the small wearable O2 concentrator by Inogen. Battery life is commensurate (sp?) with whichever valve you choose to have on it AND the valve is permanent. Intermittent lasts about 4 hours on 3 Lpm. Solid stream O2 lasts much less. They only push up to from 1 to 4 Lpm .I have used mine as my only source of O2 on many, many trips. At night I plug it into an outlet which makes it do its thing and also charges it at the same time. Wearability is a misnomer....7 pounds is a lot of weight for someone who needs oxygen. Mine goes on the seat of my "roller" or hangs from the back of my scooter. YMMV (your mileage may vary)
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PT, omg, wow. I am glad to see you "doing better" but my gosh, what diagnoses and what a stint you've had! It's getting scary to log onto this site and seeing members going through some tough things. :(
But, you sound to be in good spirits and wahoo for that! Do you remember anything at all with your oxygen being low? When my oxygen got so low that they put me on a respirator, the day or so prior, when my oxygen was below 80, I don't remember anything. My husband likes to remind me I was irritable and threw my whole food tray at him. He heeee... :shy;
The fact you were lucid through all this shows you are pretty magnificent.
Yes, I was still fairly lucid when my O2 SAT dropped to 78 but I was in fight or flite mode, that's for sure. More like drowning with my lips just poking out above the water like a fish in a koi pond. From the ambulance to the hospital I was surrounded by a lot of caring professionals. They worked as teams. For some reason it didn't hit me until the second nite. I had a panic attack in the middle of the nite but "the team" came to my side and brought me a nice pill to melt under my tongue. It calmed my butt right now down super fast. Didn't exactly make me drowsy but felt like a huge weight had been lifted off me. Relief! About the only other time I got a little scared was when they forcibly shook me in bed to wake me up. I thought it was time for them to do more tests or take my vitals. But no...they said I needed to breath. Hhmm….thought I was breathing. So that was a bit weird. Happened twice.
I've got a lot of appts and more tests and scans to be done. All the fluid build up squeezed my heart, putting more than double the normal pressure on the vessels inside my heart so hopefully I haven't damaged it. An echocardiogram last month was "normal". The echo at the hospital was not. Neither was a CT scan of my lungs. They said it's a mess. But the good news is so long as I've got this O2 tube up my nose I feel good. Still have some fluid to come off so Lasix is my new best friend. So is Prednisone. Was being given mega doses for the Polymyositis and Sarcoidosis but get to taper down to 20 mg daily tomorrow. Hunger and 'roid rage has begun. lol But right now I am just very pleased with how good I feel with the O2. Actually played a little music and did a little dancing in my chair here at home. And to help as a sort of "breathing exercise" I sing or whistle. I get to sleep laying back in bed again. Except one nite I fell asleep at the table like I had been doing (guess it became habit). What a ride this has been! I knew I was sick but not this sick. I just kept thinking that I needed more time to gain my strength back and to catch my breath. Nope. There is no beating this beast without help. Now I know better.
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Keep breathing, PT. :2thumbsup;
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Have another CT chest scan tomorrow. Last time they said my chest "was a mess". (Pulmonary Sarcoidosis). Hopefully being on the boats-load of Prednisone for 2 months has helped. Still on low-flow continuous oxygen. Saturation rate should be in the 90's. I take the O2 off and I drop to the 70 & 80's. Yeah, that doesn't feel good. They did a bunch of bloodwork last week. My Vitamin D is low so I have to take prescription Vit-D2 50,000 units once a week for 12 weeks. Hope it perks me up. Good news is that my bone density tests came out normal. Yea! I'm just praying that they don't add any more meds to my already growing list. If I have to lug an oxygen tank around then fine, I can live with that so long as I can get things done and live a life again. Being homebound because of no energy or breath really sucks. It is most depressing. And then there are the doctors who ask a lot of questions but don't really say anything. They are thorough and run a bunch of tests and smile but then look at your file and their whole demeanor changes. You wonder if you are terminal. Everybody either gets too quiet or acts just a little too nice. Wassup with that anyways? Even my primary of 20 years made a face looking at my file. Why? WHY?? I'm sick and I feel like they haven't seen a sick person before. Make me well and if you can't, just say so and I'll be on my merry way. I'm not looking at how I can die gracefully but rather, what things can I do while I'm still alive? What is doable and what isn't. Lugging an oxygen tank around at the grocery store is doable. They don't have to act like it's the end of the world and that I should just be home resting. I gotta bust out sometime and not just to go to another appt. I am going to do it.
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Good luck tomorrow PT
:cuddle;
I usually ask The Learned Ones if: it’s wind?
Thinking of you, Cas
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Sorry you're going through so much. I'm in pretty bad shape myself so I can empathize. I hope you get some relief soon. Being sick sucks.