Going to the E.R. again

So frustipated! (It's a Sheila word). Twice in 1 week. Today Mom and I both need the E.R. so it will be the second time in our life we were being treated in beds beside each other. My heart stopped a couple of days ago cuz my heart rate goes so high with this pain, and although they warn me to come in when it gets that high again, I can't go in every day. Hope my doc will offer a different combination of meds on the 30th, but doubtful since I can't take the anti-epileptics. I hope this improves when the weather improves. What a pair my Mom and I are, both with lupus. Would like to hire help, haven't figured out how to find out if a person can be trusted or not. I know in USA you can go to www.angieslist.com to check out people's background before hiring them, but in Canada we don't have that. Hope to be home soon. If mom is admitted, i won't be back for a while.

Cya soon second family

Sheila

Gee Sheila, I thought you had enough family time with mom :) all joking aside, I pray the doctors took this very seriously and are looking at new options for your treatment. Are you and mom back hope now? Please keep me updated when you feel up to it and I am sending you a big hug! You may want to check with your hospital for a list of care aids they recommend.

T

Sweet Sister,

I'll be praying and sending you lots of healing energy!!! Feel better quickly, please. I know it's too challenging to imagine, but you are a warrior!!

Love and Gentle Hugs,

G-Force

Dearest, sis. You remain in our hearts and prayers. You give so much comfort and help to so many and yet suffer so much yourself. I hope that they give you the combination of medicines that you need to take some of your pain away and give that kind heart of yours the break it deserves.

You are so strong, Sheila. We love you, and I will be thinking of you and hoping the best for you, but most of all praying for your relief, and comfort (and for your mother's).

Thank you for being you. Please keep hanging in there, sweetheart! Let us know what is happening, for sure.

Love and huge hugs,

Stef

Hi Gloria and Tracy, thanks for caring and writing. I am home now but Mom stayed. I had to discharge myself to keep Mom alive. Tracy, you might understand this, I just got off the phoe with my brother in BC, he says it's been this way in BC for years, but no one ever explained it to us before so we always got frustrated and angry. This one Dr. finally explained to us that our family Dr. or even our specialist can't work in the hospital. You see a "hospitalist", who decides your disease and decides all your medicines, so if he doesn't see heart failure "today", then you don't have it, so he takes mom off all the heart failure medicine. This is why she was discharged after only 3 days last time, but we didn't understand that. It has taken mom many years to get the right combination of meds, and if she misses her heart meds, it's only 2 days before she's in serious trouble, so it seems like they could kill her very easily. If the "hospitalist" doesn't think my face pain is TN, he can take away all my meds while I'm in the hospital, and you are not allowed to bring in your own meds.

So after I discharged myself, I went to eat something at the hospital cafeteria, then went upstairs to help Mom get settled. I got food poisoning within an hour, and spent a while hugging Mom's toilet. The nurses kept saying "You should go down to the E.R.!" I said "I will when I can get away from the toilet, I can't really move now. Or if you want to take me in a wheelchair with a barf bucket, that would help." they didn't want to do that, and after a couple of hours I decided I'm not going to wait in the E.R . waiting room for 4 more hours, we had been there since morning already. So I just called a cab and practically held my breath, sweating all the way home. When I got home, I ran to the bathroom and continued being sick, but felt much better when I had finished. I called the cafeteria today to warn them about what I ate.

So I was supposed to be with Mom all day, but I had to deal with her insurance company, which was close to impossible on a weekend, then we had these incredible storms where the thunder rumbles shook the windows and lasted up to 12 seconds each. I passed out for a couple of hours due to pain and fatigue of not sleeping yet last night, and heart problems. The phone in my Mom's room is not working, so I can't talk to her to find out how she is, and she can't call me to tell me to come get her if she 's in trouble, and I can't tell her that I was not able to find other people or a hired nurse to come sit with her to protect her from the staff that are almost non existent on the weekends. So I'm going a bit nuts, trying to get enough strength to get up to the hospital even though it's evening now. Very frustrating. It just feels like the more we deal with the hospital, the faster they will kill us... but in emergencies, when the Dr. is not available, we know understand that there's not much chance. Very scary. No continuity of care. The care that her regular Dr, who knows her, has given her, is thrown out the window when you are admitted to the hospital. Seems to be a very dangerous place, in Canada anyway.

Gloria do you know if your hospital is using this procedure too, of no family Dr. in the hospital, just hospitalists?? This is nuts! There will be a time when we are too sick to watch every single detail, and they will make deadly mistakes. Very difficult time. Thanks for your care and prayers.

Blessings, Sheila

And oh, I was wrong, its been 3 times in 8 days or so, not twice. Was trying to call some of Mom’s old friends from church to see if theywould visit her, because those who get no visitors are badly neglected. Couldn’t find any of them. If I go up to the hospital, I might be too sick to get home again. I was pretty close to it last night. I wish my body was as strong as my spirit!

Thanks so much Stef, I feel the same way about you. I don't get any medical care while I try to keep my Mom alive from this dangerous new hospital policy, and inability to get any help on a weekend. Will be a struggle for a while.

Love, Sheila

Oh Sheila! You have helped me so much…and you are in such a difficult situation yourself! I am praying as I write, and will keep praying for you. You are an example to all of us and I see you as Gloria described you; a warrior!
Love, Laurin

Sheila,

I am so sorry that you are going through this. Frustipated is the perfect word. I can understand some of what you are going through because we had our own battles with the hospital when my Mom had amyloidosis. The way that they run things doesn't make any sense at all sometimes. I can't imagine why they can't coordinate your care with your primary doctor or even to take your medical history into consideration. We all know how dangerous it is to take someone off of their medications, so why don't the "hospitalists"? You don't deserve this and neither does your Mom. I know that you will make it through this ok, because you have been through so much already and are still fighting, but I do wish that you didn't have to deal with a hospital that is trying to kill you instead of helping to make you better. Having to deal with insurance stuff on top of all that doesn't help either.

I will be sending you and your Mom good thoughts.

Take care,

Chris

Thanks Laurin and Chris!

Hi Sheila,

I hope you and your mom are both feeling better!! How do you keep such a good, fun attitude throughout this? I could take a few lessons from you:)

Jamie

Oh Jamie I don’t. I am such a mess right now. I’m too sick to get out of the house to see Mom, worried about all the things that can go wrong for her in the hospital, and I can’t do a thing. No sleep for 3 nights, insane TN pain, no help from any human, this is tough for sure.

I’m sorry Sheila. I’m sending prayers your way that you will find relief from pain and worry and you won’t be alone.

Thanks Jamie;

To top it off, the phone in her room isn't working, so we can't even communicate with each other, and we need to, because I have to contact her insurance company and also try to hire a private nurse. When it rains, it pours. My daughter is in labor today also, so I will be a Grandma again within 12 hours or less. She lives 1200 miles away, but I'm with her on messenger right now. Multiple illnesses sure makes things difficult.

blessings, Sheila

You are all so loving and compassionate. I was called back to the hospital to take Mom home, even though she was worse and was vomiting terribly. I was forced to take her out to the car while she was still in hosp gown and in a wheelchair practically holding her breath trying not to vomit till she got to the car. I wonder if they were scared she might die on their shiift, as I've experienced before. I thought I'd call her Dr. this a.m. to ask for home burse. I'm sweating, struggling, to carry all her bags and push her wheelchair and now running up and down stairs to care for her hourly day and night. Her Dr. receptionis STUPIDLY said I'd have to bring her in for evaluation. I just finished telling her Mom was vomiting constantly! She said to take Mom to the hospital. I also told her that I had just brought Mom home from there! So no home nurse.

She is a bit better this evening. I think we had a little miracle. She was taking her meds, and one dropped on the floor. I asked if it was a new medicine, she said it was. I said "Mom, maybe God made THIS pill drop out of your handfull of pills to protect you! Lets skip this dose and see what happens." She stopped vomiting shortly after that!! So now I just have to help her build up her strength.

Today I feel like the devil's trying to kill me. WAYYY too much physical activity yesterday, now today the landlord comes over, turns on the outside faucets, and it made a bad leak in our house, which i just hung an ice cream bucket on the faucet and turned it off. Its still leaking, so every 30-60 minutes day and night, I'll have to climb up to that faucet in the ceiling and empty the bucket. Maybe I'll kick the bucket while I'm at it. HA!! One hour at a time, prayer gets me through.

Sheila,

You are a wonderful daughter. It may not feel like it while you are struggling so much to manage everything, but you are taking good care of your Mother. I am sorry that the hospital sent her home too soon, but I am glad that she is at home and in good hands. It does sound like a home nurse would be really helpful and I wish they would make it easier for you to get this lined up. It would make sense for them to send someone out to you, wouldn't it, so that they can get a sense of the situation? I wish they could do this.

Divine intervention is a wonderful thing, isn't it?

I will be sending you and your Mom good thoughts and hopes that you will both start to recover from this horrendous experience and have calm, quiet times ahead full of well being and peace.

Take care,

Chris

Thanks Chris;

I appreciate your compassion so much. How stupid is it that I'm jealous of the care I give to Mom? I will never receive such care, and I'm running on zero because of the heart attack I had last Wednesday from TN pain making my heart rate go insanely high. I try to only think of today, because the future is so frightening, knowing that we will both be getting worse and unable to help each other...and knowing that even if Mom goes into a nursing home, that will just be a torturous death because of the lack of staff. They also won't let the patients turn down medications there, and there is ONE Dr. for 200 patients there. You don't get your regular Dr. I just hope God shows me some answers before any of those disasters happen to either of us. It did show me how much I can do with TN pain when it's necessary.

At this point, nothing makes sense in Canada's medical system, and my very compassionate Dr. is frustrated to tears at how her hands are tied to do what her patients need. If she thinks someone needs to be in the hospital, she can't arrange it. She has to send them to the E.R. and they won't even talk with her or get her side of the story, and if in their rush they don't think that person needs the hospital, they go home deathly ill, without home care.

I am convinced that people here are so empathetic because they KNOW how hard life can be when you're suffering. I love the people here. I belong to some other Ning sites, but none are like LWTN.

Sending love and light to you Chris and to all,

Sheila

Hi Sheila.

I am sorry to hear about all the problems you are going through. I know how the face pain can hurt.

My pain starts from the upper lip runs through my nose into my eye and forhead. When the pain gets real bad I wiggle my nose to distract some of it. I don't why put it seems to help me I think it because I am doing some thing else. I will pray for you and your mother to get well soon.

Later

Don

I agree Sheila - people on this site are WONDERFUL. We all understand each other when others’ can’t imagine what we’re dealing with, because we LOOK okay.

Thanks so much Don!

Blessings, (praying for everyone on this site, it's such a horrid disease).

Sheila