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Send, we must have posted at the same time. Do not worry, we don't spread things or judge on here. Please don't worry yourself.
(11)
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I try not to whine too much anymore, but today is getting to me. I am weepy and start to cry when I think about all we caregivers go through, the dismay, fear of what might happen, things out of the blue, etc. I think I have been on here for 4 or 5 years starting when my mom began her more rapid decline, and it has been 3 yrs. since she has been gone. Today was also the day my dad died 25 yrs. ago.
It didn't help that the old Braggart, the "friend" from 8th grade was back in town, (we were gone so I avoided seeing her...), and sent photos of the house she grew up in here and the one I lived in, ...commenting on how the owner of "my" old house messed it up with changes, and how great "her's" still looks. They sold theirs decades ago when her parents divorced. My family has not owned our old home in decades either, and the couple that lives there is happy there, that is all that matters to me. The constant comparisons drive me angry! It does not help that my poor dad was carted out of that old home on a gurney exactly 25 years ago today never to return. I don't think she knew or remembered that. The photo of the house and mean comparison is the first thing I saw today before my migrane hit. And of course I got the old story about how cold the weather is here and how great where they live. Then I cry when I think about what I and everyone else on here has gone through. I did not mean to vent so long and thank everyone for putting up with my vent....
(16)
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Excuse me, I felt pressured to answer, not wanting anyone to be confused.
I regret answering, (out of respect for Glad), and forgetting that my husband deserves confidentiality more than anyone needs reassurance about my caregiver status.
So sorry.
I am logging out.
(3)
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However, we are strong, and we are brave. Hubs is disabled on SSDI.
He is working part-time, and if that is not confusing for benefits, well then.....

The other day, a Medicare agent offered advice to have him quit working. It would be "easier".

Like I said, WE both are strong, and WE are brave!
(12)
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Glad,
Thanks for asking. After all this time I just assumed people who knew me would understand, that mentioning aspergers identifies the person too closely and also invites the curious as to the oddities of the diagnosis, so I mention "cognitive decline", not dementia, not Alzheimer's, and not my mother, but my husband. DH also has arthritis, lateral sclerosis, stenosis of neck and lower back, neuropathy, thyroid module, and strange behaviors and communication patterns. Many times I am overwhelmed by what he says. To my knowledge, there is not a lot of information on aging with aspergers, and I feel alone in this mystery. So that is why I watch out for him, drive him, feed him, schedule things for him, a little more is required of me than a wife, including keeping his stress levels low so as to avoid a meltdown (on his part). It is a balancing act, and I am often surprised just when he seems more normal.....Then.....What the heck is wrong?? Yes, I am still a caregiver. And yes, it is confusing for me also.

He did not have a diagnosis prior to our marriage 19 years ago.
(12)
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I am a bit confused, Send. Your profile says you are caring for someone with arthritis. Are you actually caring for hubby with dementia?
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Communication with dH (cognitive decline) is at an all time low.
I asked for help to print a list for me, off the computer.
He starts "re-formatting" the list, as he usually does, says it is ugly. He can never get to the click "PRINT" part.
I asked him to make the font bigger if he is going to all that trouble to re-format the list.
His response: "It doesn't need to be any smaller".

WHAT?
(1)
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Madge, I think these steroids I'm taking would raise a dead buffalo. lol So I'm plowing through for now, back to work yesterday and today. Thank you. 💛
(5)
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Hope you're feeling better, Ali
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Ali- sorry about your illnesses. I've been thinking about your situation and what response could be helpful.

For everyone this may be TMI so don't feel you have to read all of it.

1) check out any place you intend to live in for previous water damage/molds!!!! Considering the trouble you had at your dad's that has to be a priority. It is something I have to do too.

During evac, I tried to use some of mother's furniture that had been stored in a facility which, as it turned, had water leaks. Several pieces has no obvious water damage or mold but that didn't matter. I reacted severely to all of them. Other people used them with no problem, As soon as we removed them my symptoms went away.

2) It would be good to get tested to a wide range of stuff for allergies if you haven't been, Even then the dietary allergies did not show up for me. I figured those out by trial and error. I used an antihistamine daily for airborne allergens.

3) In my experience your primary doc doesn't know what she is talking about when she said you would be very sick and not up and walking around if you had a candida infection, I really disagree. I have had chronic sinus yeast infections for a number of years now. I get either bacteria infections with yellow discharge, and blood sometimes, or fungal infections - white ad clear discharge and blood sometimes. I went to see an infectious disease specialist and convinced her that the white discharge was fungal. (It got better when I swabbed my nasal passages with a little monistat on a q-tip. You might want try that and see if it helps.). She believed me and I asked for Nystatin nasal spray (had to be compounded) which keeps it under control. I have seen research that a significant percent of sinus infections are fungal. From the Mayo Clinic - Mayo Clinic "researchers say they have found the cause of most chronic sinus infections -- an immune system "response to fungus. They say this discovery opens the door to the first effective treatment for this problem, the most common chronic disease in the United States." In your dc's defense not many drs know much about fungal issues.

4) Antibiotics and steroids make fungal infections worse.

5) Are you having any gut symptoms?

6) My infections are gone or under control, but I still have CFS/FM fatigue/pain, but it is not as bad as when the infections flare up.. There is a lot more to that condition than infections,

You need to be a detective for your health. (((((((hugs))))))
(4)
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Ali, good luck.  A naturopath did bloodwork to show allergic reactions I was having, and recommended certain supplements I need.  It all helps.  It is also a bad winter for viruses, some of them stronger and longerlasting than the old ones.  My bronchitis came back on me, and I thought I'd never get well.  A few times I asked friends to drive me shopping, or to out-of-area nursing home, because I was too tired and light-headed.  Meanwhile, my aunt needed rehab, far away the only one available, and it was not adequate.  Caregiver and I 'rescued' my aunt (we believed she was being trained to be dependent, not to recover some independence), brought her home again, and we were ready to hire more help.  However, I really lucked out with a local NH with Memory-Care, who are non-profit (connected to hospital). They called with a bed the very next day!  YAY!  There's still work getting her sttled in, records completed, visits, etc. while still coughing and on meds. (me, not her)

7 years of caregiving, and I am so happy to be able to visit, yet have free time!  Whining over.
(8)
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The area where I live is known for big deep snows due to lake effect snow from Lake Erie. Christmas 2017 Erie, PA broke a record for the most snow in 24 hours. Always average 120+ inches a season. This year no huge storms but as of noon on Wednesday, Erie broke seasonal record with 152 inches of snow. There’s dirty, crusted snow everywhere. Parking lots at grocery stores and such are full of snow. My parking space at work vanished awhile back with plowed snow. Everyone knows it’s okay because my home is 2 blocks away and I rarely drive. But now I’m ready for it to be gone. That’s my whine. A few daffodils will cure me.
(2)
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CW, I have 2 Austin Air filter units that I run all the time. Between the 2 of them, they cost over $1k USD. I suspect they don't work very well after the first 6 months but they're rated for 5 year usage. I noticed a difference right away at old house when I started running one of them in the bedroom at night but like I said, I don't think they continue to work as well after 6 months. I've been changing the air filter in apartment here but I can see the furnace filter needs cleaned badly. *Edit: I'm ordering some replacement filters for the Austin Airs right meow. That's a good idea and should help.

Naturopathic doctor. I was thinking about that today, to maybe go see a mold specialist, or some other doc who does believe that yeast infections can cause reoccurring sinus issues and chronic fatigue. lol It comes down to "how much does it hurt," I think. I'd like to keep getting by and just get back to work asap. It's spring here, I can start opening windows, I can clean the filters and check for mold etc.

This may have been just a really bad cough/congestion that lasted forever, and perhaps lasted longer because of rebound congestion from the things I was using daily to control symptoms. At this point, I'm going to take wellness supplements and try to get back to my routine.

But this round of never ending sick rattled me, for sure. New place could have some mold, that's definitely a possibility, and it's exacerbating things.
(4)
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Already back from docs. No UTI but there's still some blood, it was obvious in the sample cup at docs. I remember from all the rounds of blood-in-urine with my dad, his urologists would remind me that a little bit of blood looks like a lot in urine. Still, though, why is it there? WHO KNOWS. They're sending it out to a lab to check for other things. It's not menstrual blood of any kind, I checked.

I took the opportunity to ask my primary doc about the yeast-sinusitis possibility. I would think it makes some sense for me, as I had blood in my snot for YEARS at the old house. She dismissed it. She said I'd be "very sick" if I had candida problem, and since I'm up and walking around and talking fine, it's not a possibility.

She's a "tough love" doc. I like that about her. When I mentioned about the connection between chronic fatigue -- which she knows is my primary symptom -- and chronic yeast flare ups, she said it's not a thing.

In a way, she's good for me. She doesn't allow me to stew about anything. I just hope she's right. I cried during my appointment, tears of frustration and tiredness. I haven't cried in some time. I'm just overloaded with this b.s. right now and I'm not getting any clear answers, and that triggers some familiar feelings.

I will get after the HVAC clean out here, and check for mold. I can do that, it's FIRMLY on my radar now and I'll address it when I'm feeing a bit better.

I'm going on strike from all this muck, and I'm going to sit in bed and watch a movie and eat my Whopper I picked up on the way home. I'll take some vitamins and Vit C to make up for the rare junk food indulgence, haha.
(3)
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Twice today.
It's a hot day (southern hemisphere, so closing summer here), and I could feel my mother's arm sliping from mine due to sweat.
And, taking her to the - very narrow - closet, she triped into my feet. Thanks God there were two walls into her reach

And we still can't mention walkers or cane to her. She is experiencing the dangers, but it is still a personal offense to mention those.

Sheesh!
(2)
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Ali,
Please consider carefully the health of your (newer) room mate, or any other recent changes in your household. Are you sharing one bathroom?

Think about this from the perspective: has your health been affected somehow?
And from the perspective of how will room mate's health be affected if there is a communicable disease possibility?

However, do not panic. Once a patient came in to the doctor's office panicked, yes, bleeding. Turns out is was an irregular menses, unexpected.

Hoping none of this applies to you, and you will be feeling great in no time.
(1)
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I was able to take a nap after giving myself 3x dose on some sleepy meds. I woke up just now and there's blood in my urine! What's going on with me? I called docs office and headed there now. Grr. Trying to get to bottom of all this.
(1)
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It seems the cure is worse than the illness Ali, at least you were muddling through before. Have you tried a good air filter in your bedroom? And have you considered a naturopathic doctor, someone whose focus is the whole person rather than symptom control?
(3)
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Ali, be forthcoming with you landlord about the suspected mold. Go to wally world and get one of their cheapie test kits. Then do it, let landlord know of results. In Chicago I imagine there are laws about safe housing. Contact the Chicago agency that regulates housing. Part of DHS, maybe? Housing is not regulated here other than through HUD. It may be a requirement of a grant that Chicago may have related to housing. Time to do something research.
(2)
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I called off work yet again. I don't think I have a choice since it's 5am here and I haven't slept, despite taking a few things to help me sleep. This is misery making. I'm physically and mentally worn out right now, but I'll be fine with just a couple of days of clear breathing and solid sleep.

Frustrated. I can make changes to try to prevent this from happening again on this level but I can't make them NOW. It doesn't help NOW.

This feels reminiscent of the problems I was having a few years back when I was caregiving in the old house. I would get "sick" all the time and go looking for an acute Dx, sometimes finding one and most the time not, and I just stayed in this eternally tired and run down sick state, trying to get the important things done and get back in bed. The underlying problem turned out to be a very bad Toxic Mold/Stachybotrys level in the house but I kept getting different symptoms. I remember one morning, I coughed up a small amount of bright red blood. The advice from this forum (Veronica, I believe) was to go get checked out so I did. They found nothing, no fungal infection in my lungs, nothing. It makes one feel nuts after awhile. If the docs aren't going to find anything, or they can't fix anything, or they're going to give me steroids where I can't sleep for the next 5 days while I'm taking them and I keep missing work...

What good is any of this "healthcare?" For me in my situation, what good is it? I can read online very easily that chronic sinusitis infections can be caused by yeast, and have some connection to CFS/FM. Autoimmune. Chronic fatigue. Sensitivities, allergies. I've been going around to my doctors with these complaints for 5 years at this point. I guess I needed to mention that I have ALL of them, and I was only mindful of the one that was acting up the most on that particular week. Why has no doctor ever treated me for yeast before they sent me to a neurologist for the headaches, or rheumatologist for the immune issues...? I'm going to talk to my PCP.

A lot of the other symptoms I used to have, have improved. I don't get the tension headaches lately, or the nausea that went with them, and that's fairly new for me. I'm grateful. :-)

There's a lot to be grateful for.

Welp, I'm not going back to being that sick, and I'm not trying to throw a grand pity party for myself, either. Just posting about it online at 5am because... I don't have anything else more pressing to do at the moment. grr
(3)
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The prednisone causes sleep issues. I learned that just now, as I have time to research more since it's 3:45am and I can't sleep.

I can't even conceive to call off work again today... and I also don't see how I can drag through a Friday, a busy day in our busiest location, on such little sleep when I've been run down for weeks.

I'll make it one way or another. I'm just so weary from this experience.

Thanks for the great advice about yeast sinusitis and HVAC issues. Both things ring true for my situation and I'll dig into it further.
(3)
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Ali have you considered that you might have a yeast infection in your sinuses? Had a friend who worked with aquariums and could not get rid of issues. Biggest symptom the discharge and drippings. Good luck with steroid, you deserve a break.
(4)
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Ali, I think you might be right on with the HVAC system.... years ago my hubby, some friends, and I got those symptoms, that went on and on, while we were attending a revival at a large church in Florida. Finally one of our friends asked the leaders of the church to have the HVAC system checked; they did and it needed cleaning badly. Soon after that was done, we all cleared up and no more symptoms... FYI
(3)
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Here's the thing: I'm sure I'm going to be fine, eventually. Of course. But I continue to miss days at work and it's been WEEKS that I've been off now, so I am feeling some real insecurity about this. It's just not ok for someone to miss this much work, no matter how much I think my employers "like me" and get it that I'm sick. That's what's really bothering me the most. I need to get back to work now.

I suppose I'm doing all I can at this point. I wish I had gone to doc long ago but why would I think a cold would keep going and get so bad? I thought the whole time that "surely I'll be better in a couple of days." It's just not happening and I'm freaking out some. :-(
(3)
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It's 10mg prednisone pills, CW, taken as 4 yesterday, 3 today, and 2 tomorrow. First time I've had that dosing schedule for a medication. ***Darn it. The bottle said take 1 pill 4 times a day, but doc said "take 4 your first day." I checked online just now because I wondered if the bottle instructions were accurate, and sure enough, looks like you're supposed to take them all at once. So... I don't know how much this changes efficacy and I'll ask tomorrow when I call.

The antihistamine is 24 hour Claritin D. The doc mentioned, and I've heard from others, that reactions to it can vary widely. It has pseudoephidrine in it, so it can make some feel jumpy. I feel sedated, but not in a calm way lol, more in the DRUGGED way. It's difficult to type sentences right now.

I can discontinue the Claritin and take something else to manage symptoms. That's easy enough.
(1)
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Ali, is the steroid an inhaler? I know a lot of times that is used to settle the irritation that can hang around after you've been doing a lot of coughing. I'm not too sure what the antihistamine is supposed to do, nothing you've described sounds like an allergic reaction to me.
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Whine: I'm feeling unsure that doc made right decision to treat my lingering chest cold with steroids and anti histamine, but maybe he did. Went to work for a few hours. I'm feeling very loopy from the antihistamine, I guess? I was able to leave a little early due to it being slow, and I'm thankful for that. I'm not well. Counting the hours until I am, haha.

I'm mildly concerned that I still cough up, and blow out, etc, so much mucous. The fluid has dried up a lot but there's still goo. They took blood at doc's to check for viral or bacterial infection, I'm going to call tomorrow and see what they found, if anything.

I'm not keen to take an immune system suppressant if I have an infection, obviously. I'll check on those blood reports tomorrow and go from there.

ETA: Thanks for letting me whine and whine and whine about this recently. I need this to hurry up and run its course. I'm not functional right now and it's been too long, and has gotten too severe, and I'm very antsy about all of it.
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Send, my hubs is just thinking that it is better to ask FIL for one check than 2 ( we talked about this today). Yesterday while hubs was at river, BIL asked him to send pix because "FIL is driving him nuts over this".. Hello,, said hubs.. get him in his dang van you drive that he owns and bring him down! Yeah, like that happened!
But in talking to FIL last night, FIL said maybe he should take BILs name off the river house and just have hubs.. then he knows it will stay in the family and not be sold. We had no idea he put the boys names on the place! And it seems both boys are also on the fancy house he lives in with BIL ! I have no problem with this idea, nor does hubs.. then just cut out the value when FIL dies and the 50/50 comes in. We don't want the big house, and BIL and SIL have no plans to move out! I play bad cop.. if they try to screw hubs and we own half the big house.. then Mom can move in with them in our "half".. she smokes and drinks and will light up their butts! But I doubt FIL will go through with this. He did mention to hubs again about us paying the utilities .. LOL BUt who knows if any of this is really true. HUbs has been to the attorney with them several times and this never came up. And I assure you if I have to buy the place,, it will be in my and Daughters names,, and hubs knows this!
(4)
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Doc prescribed steroids today, and also old me to never do Afrin type medicines for more than 3 days at a time because the prolonged use of that medication can cause congestion. I was never sure if the Afrin bottle was even spraying correctly... and I knew it wasn't for long term use, but I was so weary of blowing my nose every few minutes. I've never taken steroids but after a brief reading up, I think this could be a great new tool for me in my war on fatigue and chronic issues.

I bought some Claritin D at the recommendation of the doc. I'm sure I'll be better in no time. And meanwhile, I notice now on social media that some friends have mentioned they, too, have had months-long ongoing cold/congestion symptoms. 😮 So it seems this WAS a bug... a superbug. 😠 But I think certain environmental issues have made my symptoms worse, too.

I'm going to try to go back to work tomorrow. Fingers crossed.

Katie, in a word - YES - I think it's related. It's not a direct cause, perhaps, but it's an influencing factor imo. I had a previous mold illness that makes my auto immune response go overboard on things too often, and I have environmental allergies now. The new-to-me old apartment has some issues... places like under sink that smell moldy, and I can see that there is old rotted wood under vinyl flooring in kitchen. I think it's likely there is some amount of mold in new place. And the HVAC here probably needs cleaned out. I've noticed that I wake up with sore throat very often since I moved here. I'm not sure what I'm going to do about it.

If it were my house and not a rental, I'd get an air test to see what the mold spore count was in my residence, go from there. I may still do this, but the air tests are a couple hundred dollars.

I'm glad my doc didn't Rx antibiotics today. To me, this is part of the problem, though I don't have any proof of my theory. If you have a fungal infection, or perhaps you're having a big auto immune response because your body had some infection that it's cleared but the body is still on high alert and producing things like mucous in overabundance, and then you take an antibiotic on top of that and kill all your good gut bacteria... that hasn't worked well for me in the past.

I got the impression that the medical treatment for "cold" symptoms is changing some. Antibiotics weren't even mentioned today by doc, not once I told him that I HAD had some chest infection but now my phlegm is clear again, just watery stuff. So I think he figured my body already beat the infection and he gave me steroids to help suppress the ongoing immune response...?

I'm not sure. But it says online I should be feeling good in 1-2 days. Can't wait!!
(4)
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Ali, Hope you feel better soon! You mention you had a mold issue, I do remember somewhat. We had a mold issue last summer in our old condo from a pipe leak. I have not been too well either since then, and my husband has had some symptoms. I wonder if this could be related to that or at least that it is exacerbating the illness? I did get antibiotics twice, but the symptoms came back after a week or so.
We did fly out West for a few days since my MIL is doing better for now, and the sinus pressure and other aches and pains began to diminish...but have now come back on my return to cold, damp weather. This has been a bad season for colds and flu....I hope you can get some relief soon!
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