I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: Spouses and Caregivers => Topic started by: PrimeTimer on March 26, 2019, 05:44:32 PM

Title: No, Not ME, doc!
Post by: PrimeTimer on March 26, 2019, 05:44:32 PM
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.
Title: Re: No, Not ME, doc!
Post by: Kathymac2 on March 26, 2019, 07:25:49 PM
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.

Title: Re: No, Not ME, doc!
Post by: Michael Murphy on March 26, 2019, 08:09:47 PM
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. 
Title: Re: No, Not ME, doc!
Post by: MooseMom on March 26, 2019, 08:49:08 PM
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!
Title: Re: No, Not ME, doc!
Post by: UkrainianTracksuit on March 27, 2019, 02:40:05 AM
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!
Title: Re: No, Not ME, doc!
Post by: kickingandscreaming on March 27, 2019, 05:27:18 AM
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.   
Title: Re: No, Not ME, doc!
Post by: cassandra on March 27, 2019, 10:47:36 AM
Get well(better) soon PT


Lots of luck, strength, and air, Cas :flower;
Title: Re: No, Not ME, doc!
Post by: Paul on March 28, 2019, 01:54:47 PM
Hope you feel better soon.
Title: Re: No, Not ME, doc!
Post by: PrimeTimer on March 28, 2019, 08:45:10 PM
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.
Title: Re: No, Not ME, doc!
Post by: PrimeTimer on October 13, 2019, 12:30:00 AM
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. 
Title: Re: No, Not ME, doc!
Post by: Cupcake on October 13, 2019, 06:06:12 AM
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.
Title: Re: No, Not ME, doc!
Post by: MooseMom on October 13, 2019, 07:33:10 AM
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;
Title: Re: No, Not ME, doc!
Post by: cassandra on October 13, 2019, 01:15:33 PM
I wish you many more good good days sweathearts

Lots of love, Cas
Title: Re: No, Not ME, doc!
Post by: Marilee on October 13, 2019, 08:33:21 PM
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.
Title: Re: No, Not ME, doc!
Post by: kristina on October 14, 2019, 07:04:31 AM
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;

Title: Re: No, Not ME, doc!
Post by: PrimeTimer on February 24, 2020, 12:55:52 AM
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.
Title: Re: No, Not ME, doc!
Post by: iolaire on February 24, 2020, 04:47:34 AM
The spring buds are starting to poke out. I hope things start easing and looking up for you.
Title: Re: No, Not ME, doc!
Post by: cassandra on February 24, 2020, 05:50:16 AM
 :grouphug; :grouphug;


Thinking of you, Cas
Title: Re: No, Not ME, doc!
Post by: MooseMom on February 24, 2020, 01:57:41 PM
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.
Title: Re: No, Not ME, doc!
Post by: Paul on February 25, 2020, 04:14:07 AM
PrimeTimer, you have my sympathies and are in my thoughts. I wish there was something practical that I could do to help.
Title: Re: No, Not ME, doc!
Post by: PrimeTimer on March 08, 2020, 12:06:00 AM
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.
Title: Re: No, Not ME, doc!
Post by: UkrainianTracksuit on March 08, 2020, 12:38:54 PM
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;
Title: Re: No, Not ME, doc!
Post by: MooseMom on March 08, 2020, 02:30:54 PM
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.
Title: Re: No, Not ME, doc!
Post by: PrimeTimer on March 08, 2020, 04:05:53 PM

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!

Title: Re: No, Not ME, doc!
Post by: MooseMom on March 09, 2020, 09:57:08 AM
How are you doing today, PT?
Title: Re: No, Not ME, doc!
Post by: UkrainianTracksuit on March 09, 2020, 12:43:59 PM
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!)
Title: Re: No, Not ME, doc!
Post by: PrimeTimer on March 09, 2020, 09:07:34 PM
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!
Title: Re: No, Not ME, doc!
Post by: MooseMom on March 10, 2020, 07:46:19 AM
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!
Title: Re: No, Not ME, doc!
Post by: cassandra on March 10, 2020, 11:06:46 AM
I agree with MM  :cuddle;  keep improving girl  :flower;

Love to the both of you, Cas
Title: Re: No, Not ME, doc!
Post by: PrimeTimer on May 20, 2020, 12:14:03 AM
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.
Title: Re: No, Not ME, doc!
Post by: cassandra on May 20, 2020, 02:33:03 AM
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;
Title: Re: No, Not ME, doc!
Post by: PrimeTimer on May 20, 2020, 09:35:04 PM
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".
Title: Re: No, Not ME, doc!
Post by: iolaire on May 21, 2020, 04:26:06 AM
Sorry PrimeTimer.
Title: Re: No, Not ME, doc!
Post by: MooseMom on May 21, 2020, 02:50:04 PM
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.

Title: Re: No, Not ME, doc!
Post by: PrimeTimer on May 21, 2020, 06:02:44 PM
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!! 
Title: Re: No, Not ME, doc!
Post by: MooseMom on May 23, 2020, 03:14:47 PM
How was hubby's appointment with the foot doctor?  I'm glad to hear he was able to see him so quickly!


Did the two of you sleep any better last night?  I know you're both exhausted.
Title: Re: No, Not ME, doc!
Post by: PrimeTimer on May 23, 2020, 05:16:33 PM
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.
Title: Re: No, Not ME, doc!
Post by: MooseMom on May 23, 2020, 08:15:34 PM
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;
Title: Re: No, Not ME, doc!
Post by: PrimeTimer on May 23, 2020, 10:24:38 PM
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.
Title: Re: No, Not ME, doc!
Post by: UkrainianTracksuit on May 26, 2020, 02:40:59 AM
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.
Title: Re: No, Not ME, doc!
Post by: PrimeTimer on June 06, 2020, 06:38:35 AM
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!
Title: Re: No, Not ME, doc!
Post by: MooseMom on June 06, 2020, 02:48:06 PM
 :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;