Doctors are confusing sometimes

[Melissa in Australia]

Twins are 12.  Dh is extremely worried and streassed. I usually don't even get colds. 

[wintermom]

Want to see some wee collies? Our new puppy is tucked in there somewhere. We haven't seen them or picked out our new puppy yet.

 

Edited August 5, 2023 by wintermom

[NorthwestMom]

Another internet stranger thinking of you and sending care across the ocean. I hope you start feeling better soon. 

[Laura Corin]

55 minutes ago, wintermom said:

Want to see some wee collies? Our new puppy is tucked in there somewhere. We haven't seen them or picked out our new puppy yet.

 

You are getting a second collie?  What fun!

[wintermom]

24 minutes ago, Laura Corin said:

You are getting a second collie?  What fun!

Yes, we need a running mate for our current border collie. The 11 year old poodle cannot keep up. 😅

[Halftime Hope]

4 hours ago, Ditto said:

How are your husband and kids doing?   How old are the twins?

Thinking of you today.  The pictures people are posting are lovely.

Time flies in the Hive. They are 12.

[East Coast Sue]

Keeping you close in my prayers. 

[Ottakee]

Still praying for you and your family 

[Innisfree]

Thinking of you today, Melissa, and sending gentle hugs.

[Laura Corin]

Sending best wishes for knowledge and healing.

[AmandaVT]

I've been trying to think of anything I can do to help make your hospital stay a little easier. If you like audiobooks and would like to listen to one, PM me which book and your email address, and I would be happy to send it to you through Audible. 

[mom31257]

Thinking of you and your family today!  Here are some spring pictures from a garden in north GA. We love going here because it is just lovely and so serene. Praying you can find serenity today, too! 

[Melissa in Australia]

Thank you

[Ditto]

Continuing to hold you in prayer.  I hope this week brings answers and a solid treatment plan for you.  Many hugs.

[Melissa in Australia]

Having a PET scan today. It takes about 3 hours. 

 Hoping to get the biopsy results today as well

[Drama Llama]

Just now, Melissa in Australia said:

Having a PET scan today. It takes about 3 hours. 

 Hoping to get the biopsy results today as well

Sending so many hugs.

[Melissa in Australia]

Dh rang last night and told me that he thinks I am overworked. He thinks the devision of household jobs is not fair and I am doing way more than my share. 😁😁😁😁 He hasn't even got to the bathroom part yet. 

He misses me ❤️❤️❤️

Edited August 6, 2023 by Melissa in Australia

[Drama Llama]

Just now, Melissa in Australia said:

Dh rang last night and told me that he thinks I am overworked. He thinks the decision of household jobs is not fair and I am doing way more than my share. 😁😁😁😁 He hasn't even got to the bathroom part yet. 

He misses me ❤️❤️❤️

 

The Hive could have just told him that.  Saved you and him all this bother!

[Kassia]

32 minutes ago, BandH said:

Sending so many hugs.

Me too.  And lots of positive thoughts. 

[freesia]

Ok. This isn’t a great beautiful picture but it is interesting to me. We just moved near one of the Great Lakes. Notice that there are waves breaking on the beach.  I did not know there was any surf at the Great Lakes. 

[freesia]

I am thinking about and praying for you that you can get rest and be at peace. And fur quick results. 

[popmom]

I am continuing to pray for you here as well. 

[BusyMom5]

Continuing to check on this thread and pray for you and your family.  

[Ottakee]

1 hour ago, freesia said:

Ok. This isn’t a great beautiful picture but it is interesting to me. We just moved near one of the Great Lakes. Notice that there are waves breaking on the beach.  I did not know there was any surf at the Great Lakes. 

I live in West Michigan along Lake Michigan and we sure do get surf.   We have surfers that surf well into December even.

The Great Lakes can be dangerous and have undertows/rip currents just like the ocean.

Enjoy the water life.

[Melissa in Australia]

This hospital has specialist medical teams on rotation from a big city hospital. So a new team of doctors this week

There is no results today. Mightn't be for another 3 or 4 day. 

No pet scan today. Seems to be some confusion about that. 

Will be instead starting on high dose of steroids today. 

Doctor also wants me to go home. Not today but in a day or so

[cintinative]

Ugh. I don't like them sending you home hours away without a diagnosis.  =(

Here's a pic from William's pulpit  (Bartram Trail) in Franklin, NC taken last week

[Ottakee]

I am not sure sending you home when you are worse than when you came in is a good idea….with no diagnosis and no real ability to rest and be cared for at home.

[Kassia]

That's all so frustrating and stressful.  I'm sorry.

[freesia]

20 minutes ago, Ottakee said:

I am not sure sending you home when you are worse than when you came in is a good idea….with no diagnosis and no real ability to rest and be cared for at home.

I agree. Is there a social worker you could talk to?

[Harriet Vane]

25 minutes ago, Ottakee said:

I am not sure sending you home when you are worse than when you came in is a good idea….with no diagnosis and no real ability to rest and be cared for at home.

This.

I know you're so very weak and sick. Can your husband or someone advocate for you? Perhaps a hospital social worker?

[Melissa in Australia]

The doctor is putting me on 100 mg steroids a day. She reckons I will have a rapid improvement of symptoms. She said I won't be able to sleep though. 

Maybe she isn't an old grump nasty doctor and knows what she is doing. I'm Struggling with the positive attitude a bit. 

Yes frustrated, that is what I am feeling, and dispair

[Drama Llama]

11 minutes ago, Melissa in Australia said:

The doctor is putting me on 100 mg steroids a day. She reckons I will have a rapid improvement of symptoms. She said I won't be able to sleep though. 

Maybe she isn't an old grump nasty doctor and knows what she is doing. I'm Struggling with the positive attitude a bit. 

Yes frustrated, that is what I am feeling, and dispair

That matches our high dose steroid experience.

I hope you feel better soon!

[bookbard]

It sounds so frustrating, especially with the change of doctors, and getting conflicting information. I really hope the steroids do make a difference and that you get some results soon. If there's any way to request the social worker, just to make sure someone is really clear on what going home means, that would be good. 

[Faith-manor]

3 hours ago, freesia said:

Ok. This isn’t a great beautiful picture but it is interesting to me. We just moved near one of the Great Lakes. Notice that there are waves breaking on the beach.  I did not know there was any surf at the Great Lakes. 

Fellow Great Lakes Denizen here!.awesome sauce! We live very near Lake Huron.

[prairiewindmomma]

I have a near revival from the dead when I start on heavy steroids, and actually feel fantastic and sleep well and generally feel amazing.  It's after the step down when my body tries to rebalance things after so much supplementation that I really struggle...joint pain, fever, stomach issues, mood issues....the usual withdrawal symptoms.  I wanted to give you a heads up in case they don't give you good disclosure about that possibility. 

You've been declining, with no real info, without the in person support of your husband....of course you're frustrated and despairing and a bit of a mess. IME, shake your stick and be very disclosive about how badly you're doing and what life will be like at home if you aren't up and truly feeling better in 24h.  They are always quick to discharge and wipe the slate of you, and no one else is going to step up and advocate for you.

[Melissa in Australia]

The nurse sent the social worker. He said I am too ill to go home. 

The nurse also rang a doctor from the team. They won't send me home until they see some improvement with the steroids 

The nurse also said that the nurses recommend I stay in hospital until I have some improvements in condition 

[Melissa Louise]

Just an fyi, large dose steroids affect people in different ways.

I get happy and active at 25mg and suicidal at 50mg + so if that happens to you, don't think it's you, it's the meds, and let someone know!

You probably won't have that side effect, I just wish I had known it was a possible one, and could have stepped down the dose at first sign.

Keep a close eye on how long you are on the steroids - if it looks like dragging on for more than a few weeks, someone needs to help you look after your bones, eyes, blood sugars etc.

[lauraw4321]

Are they offering any physical or occupational therapy to maintain muscle strength? 

[Melissa in Australia]

Yes, just saw the OT. She could  see that I don't have enough breath for walking, even with a walker.  We tried

[East Coast Sue]

18 minutes ago, Melissa in Australia said:

Yes, just saw the OT. She could  see that I don't have enough breath for walking, even with a walker.  We tried

I’m so sorry to hear that you’re struggling. The nurses, social worker, and OT know that you need care and treatment so I’m glad they’re confirming that you need to remain hospitalized until your condition improves.

Sending more prayers and hugs

[Harriet Vane]

I'm so relieved that the nurses and social worker and OT have your back! And I am thankful you will continue in the hospital for the present--you need answers and treatment. You will also need physical therapy to regain strength.

Is it possible for your husband to get more services from the government to help with the twins? I know you're far too sick to investigate this yourself. I wondered if he should look into it, though.

I'm praying for answers and for you to feel better. Don't let them dismiss you without a concrete treatment plan that includes both treatment for what is making you so sick as well as physical therapy.

[Shoeless]

Do you have anyone that can come up and advocate for you? I know your DH has his hands full with the twins. Can your brother come for a few days and put some pressure on everyone to get a plan together? 

You're too ill to advocate for yourself and I am concerned they are putting your care on the backburner because other wheels are squeakier. 

[cintinative]

Echoing the others--is there anyone who can come to advocate for you? I am SO glad they reversed course and will keep you there but it is very concerning that you have to advocate for yourself when you feel so very awful.  

[kbutton]

13 hours ago, Melissa Louise said:

Just an fyi, large dose steroids affect people in different ways.

I get happy and active at 25mg and suicidal at 50mg + so if that happens to you, don't think it's you, it's the meds, and let someone know!

You probably won't have that side effect, I just wish I had known it was a possible one, and could have stepped down the dose at first sign.

Keep a close eye on how long you are on the steroids - if it looks like dragging on for more than a few weeks, someone needs to help you look after your bones, eyes, blood sugars etc.

This.

I am not sure what doses work for me, but even at relatively low doses, I have felt like I was headed for a straightjacket and a padded room. 

They also make me ravenously hungry, probably because they can mess up my blood sugar. 

[sassenach]

26 minutes ago, kbutton said:

This.

I am not sure what doses work for me, but even at relatively low doses, I have felt like I was headed for a straightjacket and a padded room. 

They also make me ravenously hungry, probably because they can mess up my blood sugar. 

Steroids can be vital, if you need them you need them. But yes, for sure with high dose steroids, they should be following your glucose levels closely because steroid-induced diabetes is a real risk.

Melissa, I hope you are able to get a firm diagnosis soon. This whole process has been torturously slow. I can only imagine how weary you're feeling.

[lauraw4321]

Hugs @Melissa in Australia! Anyone who has been in a bed for a long time is going to lose strength and stamina, even if they have no other health issues happening. So remember that at least some of your weakness is just due to being stuck in the hospital for so long. 

[Harriet Vane]

14 minutes ago, lauraw4321 said:

Hugs @Melissa in Australia! Anyone who has been in a bed for a long time is going to lose strength and stamina, even if they have no other health issues happening. So remember that at least some of your weakness is just due to being stuck in the hospital for so long. 

This is so true.

[Faith-manor]

16 hours ago, Ottakee said:

I live in West Michigan along Lake Michigan and we sure do get surf.   We have surfers that surf well into December even.

The Great Lakes can be dangerous and have undertows/rip currents just like the ocean.

Enjoy the water life.

We had surfing last week on Lake Huron. It isn't as common, be we do have our occasional big wave days. The water is balmy warm over here and a bunch were out there on their boards. You'd have thought it was Malibu! 😂

[kbutton]

54 minutes ago, lauraw4321 said:

Hugs @Melissa in Australia! Anyone who has been in a bed for a long time is going to lose strength and stamina, even if they have no other health issues happening. So remember that at least some of your weakness is just due to being stuck in the hospital for so long. 

And the older we get, the faster that happens! 

[ktgrok]

On 8/5/2023 at 12:06 AM, Ausmumof3 said:

 

Yes

one of my uncles had it several years ago and he is over 70 and still going ok.

Yes, my grandmother had it, and died in her 70s of something else entirely! She was followed by a team every so often and ever so often needed various treatments, but it really didn't impact her life much once she was diagnosed and on treatment. 

15 hours ago, Melissa in Australia said:

Yes, just saw the OT. She could  see that I don't have enough breath for walking, even with a walker.  We tried

You can ask doctor (and I would thin OT would ask) for medical orders for supplemental oxygen while during OT/PT - if the extra oxygen can give you enough breath to do the exercise it can help you keep from getting weaker. I know with my mom they put her on way more oxygen while doing PT than what she was on just sitting around, because they wanted her to have whatever level she needed in order to move around. That said, I'm sure that required a doctor's orders.