No, Not ME, doc!

[UkrainianTracksuit]

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!)

[PrimeTimer]

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!

[MooseMom]

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!

[cassandra]

I agree with MM    keep improving girl 


Love to the both of you, Cas

[PrimeTimer]

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.

[cassandra]

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


 

[PrimeTimer]

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".

[iolaire]

Sorry PrimeTimer.

[MooseMom]

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.

 

[PrimeTimer]

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!! 

[MooseMom]

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.

[PrimeTimer]

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.

[MooseMom]

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.   

[PrimeTimer]

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.

[UkrainianTracksuit]

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.

[PrimeTimer]

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!

[MooseMom]

   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.   

[PrimeTimer]

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! 

[MooseMom]

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.

 

[UkrainianTracksuit]

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. 

[PrimeTimer]

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.

[MooseMom]

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.   

[PrimeTimer]

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.



 

[MooseMom]

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!

[UkrainianTracksuit]

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.