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GoodDog
02-17-2011, 05:54 PM
Sorry for the pity-potty but I really need to get this off my chest. I'm so low I can't stop crying and I feel so alone. I live alone in a small studio cottage (which I'm grateful for) and have no family or friends in my state. Every month I'm hospitalized for 4 days each time for blood transfusions and trying to find the source of my bleeding. I have to take a taxi each way which means I don't eat very well because my income is only $897 a month. Because of my low blood count and the Lupus I just don't have the strength to find advocacy or programs to help me. I close myself up in my house until I feel it's life-threatening not to get more blood.

I'm so tired of being taken advantage of and not being able to stick up for myself. My in-home supportive service worker is doing nothing knowing I don't have the strength to find someone new. And recently the last straw was a dentist that scammed me! My dentures broke and I went to the closest place to my house which was Western Dental. They quoted me $143 to glue them back together and said I needed a realign. I guess the prednisone has changed the shape of my gums?? Anyway he said he would guarantee the fix for a year but to keep in mind that they wouldn't last because of this problem. They felt fine to me but he said he could tell by the way they cracked. Well, they cracked again the very next day! I never had a gap in the middle teeth before and they never hit on any one tooth before. But now they don't fit right at all. He said he didn't do anything but glue them but I know something went wrong because they aren't the same. Now they want to charge me another $305 to realign them and I don't have it. I gave them all the money I had and now can't even afford the taxi to go to the hospital this month. Just the appointment alone was more than I could do and I came home barely able to walk in the door.

It's made me feel so sad and alone...the last straw I guess. How do you hold on to any dignity without teeth? California has eliminated all dental resources and Medicare doesn't cover anything. I use to be a proud woman and still care about my looks. I've lost everything and now with the prednisone I've gained weight and lost my hair...now my teeth. I look indigent and between that and how weak I am it makes me not want to fight any more. I loved having a clean, well maintained home and prided myself in taking good care of it and myself. It bothers me that I can't stand long enough to wash a dish and no one else cares. I just feel at the end of my rope and don't know what to do but cry.

jmail
02-17-2011, 06:14 PM
I haven't a clue as to the authenticity of this school, but you could try this idea:
http://dental.pacific.edu/
contact them, or another school of dentistry nearby, and tell them your plight. My folks got me braces as a kid through Washington University School of Dentistry in St. Louis years ago. It was a "pay as you can" kind of thing. They also provided transportation for the indigent.

Be sure and try the local government site http://www.sfgov.org/, or other nearby municipalities. They have advocates that *have* to listen, else you can VOTE and influence whether they work or not!!! Similarly, most govs will have some form of transport, especially for medical patients. Don't forget about your local utility companies, and their "Help" systems for bills, etc.

Good luck with it. We'll be praying for you. You got family right here.

GoodDog
02-17-2011, 06:26 PM
Thanks jmail!! I can't drive so going to the closest school is out of the question because I live about an hour away. Plus every time I get on the phone trying to find help I start crying and can't get through the conversation. I'm so low I can't help myself. I know prednisone does this and hopefully I'll get over it soon, although it still won't help my situation. If I lived in SF, Oakland or Berkeley I'm sure I could easily find help, but I'm in a small town in Contra Costa County and they have little resources and I seem to fall through the cracks.

BonusMom
02-17-2011, 07:54 PM
I HATE Western Dental with a passion because they run a dishonest operation that takes advantage of people.

I'm going to PM you over the weekend with some resources that you might find helpful. It breaks my heart that Denti-Cal has been cut due to the budget crisis. Next on the chopping block is IHSS so brace yourself.

tgal
02-17-2011, 09:23 PM
My heart breaks for you right now. I know exactly how you feel and there is nothing worse then feeling alone and sick. I can't do anything about the sick part but I can help with alone. I can't physically be there but please know that my PM is always open for you! I know Texas doesn't have any state care but Cali use to. I am really surprised that they have done away with so much!

The dental school is a GREAT idea. I have very bad teeth due to way too many illegal drugs before I was 21. I have partials that no longer fit due to this illness and I can't afford them either. Thanks for reminding me about that jmail!

GoodDog
02-17-2011, 09:36 PM
If Cali does away with IHSS I imagine I'll end up in a nursing home within a short time. I had thought about moving to Texas because I have family there but if they don't have in home supportive care that won't work. My family there isn't in a position to take me in or take care of me. My little dog is what has kept me going this far when things seem unbearable and I would hate to be without him.

BonusMom
02-18-2011, 01:03 AM
Good Dog-

Please don't panic about IHSS being eliminated because I don't believe that's in Gov Brown's budget proposal, however, I believe it's his intention to make cuts. Two days ago he ordered a hard hiring freeze, meaning it's very, very difficult for any agency to get approval to hire anyone unless it's a "key" position. Yes, social service programs always sustain cuts first. Why don't they go after the lawmakers' salaries? Those idiots haven't taken a pay cut, haven't given up their per diems. Nothing. Nada. Give me a break.

I know you're feeling blue and you have every right to a pity party. Living on 879 isn't easy, especially in the Bay Area. I am not really familiar with benefits provided by IHSS i.e. how many hours of care you receive per month, what the caregivers responsibilities are or what's involved in getting a new worker assigned to you. Can you educate me on this?

The suggestion that jmail had with the teaching dental school was excellent. There was an article in this month's AARP Magazine about dental issues (it's my husband's-I'm much too young to qualify for membership hehe), and it mentions that the dental implants one patient had done were about 1/2 the cost of a DDS in private practice. Now, I know that doesn't help in your particular situation because 100 dollars might as well be a million bucks, just wanted to give an example for others that are reading the thread.

The dentist I found about 18 months ago used to be a professor at a school of dentistry in San Francisco. They treated a lot of AIDS patients at their free clinic. Coincidentally, people with Sjogrens and AIDS have similar dental issues--oral yeast infections, canker sores and high incidence of decay--so he knew how to treat this dry mouth of mine. I'm going to call his office tomorrow morning and ask his wife (who happens to be his office manager) for treatment suggestions in the Contra Costa County.

I know you're not feeling really proactive right now and your IHSS caretaker isn't being the advocate you need, but perhaps when you get angry at Western Dental for robbing you, you will file a complaint against them with the Dental Board of California. Squeaky wheels gets the grease. It will not have been their first complaint, I'm sure.

Then, pick up the phone and make the call to DSS, or whatever it is you have to do, and request a change of your IHSS providers. The State is paying someone to care for you. If that person isn't meeting your needs then they should be fired. Why should they be paid monies for a job they didn't do?

I understand your frustration about the weight gain from medication and a diet that's less than stellar; hair loss and now the dentures. It is overwhelming at times. You're barely making it and the denture issue was the last straw.

You're not alone. You've got fellow lupies that understand what you're going through, as well as your little doggie who just happens to know when Mama needs some extra lovin', eh?

Hang in there. Things will get better.

Nonna
02-18-2011, 05:28 AM
Good Dog,
I wish I had words of advice for you; but I can only offer comfort. I had to move in with my daughter over ten years ago. I find myself in an awkward situation now and then. Luckily I can still work for the moment.

I can only tell you that my faith helps me a lot . Believing that God has his plan, stand tall and trust in him


Matthew 11:28-30

cyber Hugs. Crying smilie

lovehubby
02-18-2011, 08:02 AM
I am so so sorry for all the hardship you are having to go through. Is there family that maybe could come and get you and you could live with? Sometimes when all seems to have fallen in on you it turns around to be ok. Keep up the faith and remember God only hands out what you can indure. Be strong and don't be afraid to ask your family for help. Call a Lupus support group you can found one close to you if you look on the computer under Lupus fondation of america they list different support groups close to were you live. Please remember you are not alone we all care.

Lots of hugs Michele

SandyR
02-18-2011, 08:49 AM
Lana (Bonus Mom) & jmail gave you some really good advice. I can't really add to it, especially since I have no idea how CA laws work, but I wanted to say you are not alone - we are all here with you.

BonusMom
02-18-2011, 02:15 PM
Good Afternoon, GoodDog-

I hope you're having a better day today.

I called my dentist's office and they're out until Tuesday, due to President's Day (guess all of my dental work has afforded them to take a mini-holiday). I jotted myself a note to call them on Tuesday to get some suggestions for you.

Give that little doggie some snuggles over the long weekend and take some time to regroup. Shed some tears, watch sappy chick flicks and then look out California 'cause GoodDog is gonna open a can of whoop a@@ on her frustrations and take care of business!

Us lupies are gonna be here, supporting you and encouraging you to get that dignity back. You can initiate a lot of inquiries/complaints via the internet and phone calls, where no one sees that you're losing your hair, gained weight and your dentures are broken. .

Your posts on the forum have been well articulated, GoodDog.

If you feel that you'll lose your train of thought when making a phone call due to cog fog (especially after being on perma-hold), make a list of questions prior to the call, in a bullet point format, and be sure to get the person's name and direct phone humber, "in the event you get disconnected" when you finally get a live person on the line. That way you have a person to call directly the next time you have a question or issue with the agency/program.

I have every confidence in you. You can be a woman of dignity and grace again. The real beauty of it is you don't have to raise your voice, make threats or anything else.

Confidence is the key.

tgal
02-18-2011, 03:52 PM
Perfectly stated Bonus Mom! We have your back Good Dog!

GoodDog
02-19-2011, 04:18 PM
What a great group of people you all are!! Thanks BonusMom for sharing your wonderful gift of insight and compassion.

I'm back in the hospital. I had a doctor's appt Friday and she took one look at me and made me call 911 as soon as I got home (I had to feed my sweetheart dog before I could go to the ER.) My hemo was back down to 7 so they admitted me. This is the third time in 2 months and they still can't find where the blood loss is coming from. They act like there's nothing they can do because they can't find the bleeding but she jumped to my defense and said that was unacceptable and that I can't be expected to live this way. I was happy to feel like I had someone on my side. No wonder I felt defeated... I had no energy to handle anything that happened.

Hopefully getting to the bottom of this will give me back the will to fight. I not only lost my will but I've also lost all faith. Maybe once I start feeling better life won't look so hopeless.

I brought my laptop to the hospital with me because the last time I was here I was told that they have WiFi for their patients. I'll check back in-between tests and procedures and again I really want to thank all of you.

tgal
02-19-2011, 04:43 PM
I am SOOOO happy for you! There is nothing better than having someone on your side! Please keep us posted on what is happening and why they find out. We will be thinking of you!

caryak
02-19-2011, 06:25 PM
Hi I'm new around here and I understand how you feel completely, Check out Oregon state helth care.. I know it doesnt help the feeling of being so alone but the have health care that covers preexisting conditions and it only costs $9-$20 a month dependent on income. I live in Alaska and medicade is helping me for now but I loose that after my son turns 18. I was diagnosed with SLE last June when I lost all of my top teeth due to an infection that spred. Good luck My prayers are with you!!!

magistramarla
02-19-2011, 11:23 PM
GoodDog,
I've just now read this thread, but I wanted you to know that I'm also thinking of you.
BonusMom is wonderful - I know her in person - and she has given you some wonderful advice.
I hope that the docs at the hospital can figure out something tonight so that you can get some energy back.
Follow BonusMom's advice and get on the phone and internet until you get some help.
We're all here cheering for you!
Hugs,
Marla

GoodDog
02-21-2011, 04:56 PM
Just wanted everyone to know that I'm back home. Only 3 days this time. LOL They discahrged me with the diagnosis of gastroenteric arteriovenous malformations which I think is just a fancy term for, "we don't know, but you're costing the system too much so this will do." The docs are referring me to a hematologist and told me that I will probably need to go in weekly for blood and iron transfusions. It was explained that it's like a damn with a leak, you plug one hole and another pops out. Apparently there is no effective cure and it will probably get worse.

One good thing that can out of it was I spoke with the hospital Social Worker and she gave me some resources to call. She also recommended an in-home nurse, mobility equipment and increase in my IHSS hours. It felt good to break down and cry and tell someone that has compassion about my situation. It's hard for people to understand that I literally have no one... not one person in my life that lives close enough to help me. I explained how I have become a recluse and am just waiting to die. I even told her about my son in Mexico and the verbal and emotional abuse I get from him. Being around him is not good for me and even if it was I can't live in Mexico. When I left the Mormon church I left my friendships and support system. I believe that's why many people stay even though they end up losing their faith in God.

I'm actually not too upset about going for weekly transfusions. Maybe it will give me an opportunity to meet others that are having a difficult time. I'll at least have contact with people which is more than I've had lately.

GoodDog
02-21-2011, 06:53 PM
Does anyone know if "gastroenteric arteriovenous malformations" is more common in people with Lupus? It seems to be a fairly rare condition and is also associated with aorta sclerosis. Now I understand why they did an echo on me since I also presented with high blood pressure not managed by meds and a recent heart murmur. I guess they didn't find anything or they would have told me, right??

magistramarla
02-21-2011, 07:15 PM
Oh GoodDog,
I'm so glad that you are beginning to get some help. You're right - with going to get the transfusions, you will at least be getting out of the house and seeing other people. Also, the medical personnel there will hopefully spot things that might be getting worse before you would.
Good luck, sweetie.
Love and Hugs,
Marla

GoodDog
02-21-2011, 07:20 PM
Thanks caryak and welcome to the forum. You can see by this thread how wonderful the members are! I may need to move to Oregon... anyone want to go with me?? hehe

BonusMom
02-21-2011, 10:54 PM
Sorry to hear that you were hospitalized, but happy that your doc came to your aid and you were able to vent your frustrations.

I haven't ever heard of the condition that you've described. It would be really nice to find out why you're bleeding and put a stop to it. It's no wonder you have no fight left in you. When you feel poorly it's all you can do to get out of bed to use the potty, much less take on city hall!

Please keep us posted on how things are going for you, GoodDog. I'll post again tomorrow night after I get off work with any information I get from my dentist.

SandyR
02-22-2011, 09:21 AM
I'm glad to hear your doc is hearing you. I hope your blood transfusions go well.

GoodDog
02-22-2011, 01:20 PM
Thanks again everyone. I guess they're called AVMs and I think it can be caused by Lupus but I'm not sure and would like to find out... just because.

A friend in Iowa wrote the following letter to the editor of the local newspaper. It meant so much to me because I wasn't able to defend myself in this disheartening situation. I wanted to share it with you guys so you can see how much friends can do to help even though they may not be close by.

"I realize the money is tight in the state, but I am appalled at the recent treatment a friend of mine received at John Muir Hospital in Concord. Unfortunately, at 60+ years old, she has several chronic health issues and is on Medicare. She has recently had repeated issues that led to being admitted for a few days each month for the last three months. She is, like me, alone in the world (I live in another state). I don't mean that she's an empty nester. I mean alone. The people with nobody to call if the car breaks down. The ones whose conversation is limited to the dogs and the TV. The ones that lay on the floor for days or weeks until maybe the mailman notices the box is full.

Today, after being told that she has another chronic disease on top of the ones she already has, one that will mean she will be coming in for a minimum of a transfusion a week for the rest of her life, she was humiliated and shamed by the discharge coordinator at John Muir Hospital. This person seemed unable to grasp the fact that she had nobody to pick her up and drive her home after discharge. She looked down at this poor woman sitting there, scared and feeling more alone than ever, and almost mocked her, insisting that “everybody has someone”. The coordinator expressed regret that she would have to waste money on a cab to take the woman home, disappointed because she couldn't put this woman on a bus and ship her out- this woman who was being ordered a walker to get around with, this woman who had just received a couple units of transfusion because her counts were so low, this woman who is suffering from several debilitating diseases. The coordinator was saddened because she couldn't shove this woman on a bus with her suitcase and let her struggle the couple of blocks from bus stop to her home.

I understand that times are tough. But I just cannot accept that it is necessary to strip someone so viciously of their dignity, and wonder how the hospital can condone having someone so devoid of humanity working in a profession that would seem to require compassion."

SandyR
02-22-2011, 02:46 PM
That is a wonderful friend and she wrote a wonderful letter. I hope the hospital contacts her to apologize to you.

magistramarla
02-22-2011, 09:55 PM
Good for your friend!

BonusMom
02-23-2011, 07:35 AM
Nice letter, GoodDog. You might also consider cc'ing the patient coordinator at John Muir Hospital, just so they get the message.

Sorry I didn't post last night, I was, however, a sleepy dog and curled up quite early for some zzzzzz's.

Unfortunately, my dentist is only readily familiar with dental programs in SF, where he taught, and offered many of the same suggestions as already posted here on the board.

Because Denti-cal was not funded with Federal matching dollars, it was one of the first to get cut when the State began running in the red. I fear it'll be quite some time before the program is reinstated because of the State's economic woes.

Hang in there GoodDog. I hope you start feeling better soon.

GoodDog
02-23-2011, 12:12 PM
Thank you for trying BonusMom.

I had one of the worst nights in memory. It started with nerve pain going down my thigh through my knee. By bedtime several nerves were affected then I woke up with severe pain in my lower back and legs. I've never felt pain like this (9) and it lasted most of the night. This morning it's gone but I feel like I was run over by a truck!

GoodDog
02-28-2011, 06:37 PM
I had my initial consultation today with the hematologist and he seems very attentive. He talked in length with my PCP and I feel grateful to have such caring doctors... too bad I can't find a rheumatologist that doesn't make me feel dismissed or ???, you know. It seems to run with that particular specialty. It's a new, big and beautiful oncology/hematology center so I think it will be fine going weekly. He said I would feel much better so I look forward to that!

I really appreciate everyone that posted showing me compassion. I really needed it and that doesn't happen that bad too often...thankfully.

debbie-b
02-28-2011, 08:28 PM
What a great group of people you all are!! Thanks BonusMom for sharing your wonderful gift of insight and compassion.

I'm back in the hospital. I had a doctor's appt Friday and she took one look at me and made me call 911 as soon as I got home (I had to feed my sweetheart dog before I could go to the ER.) My hemo was back down to 7 so they admitted me. This is the third time in 2 months and they still can't find where the blood loss is coming from. They act like there's nothing they can do because they can't find the bleeding but she jumped to my defense and said that was unacceptable and that I can't be expected to live this way. I was happy to feel like I had someone on my side. No wonder I felt defeated... I had no energy to handle anything that happened.

Hopefully getting to the bottom of this will give me back the will to fight. I not only lost my will but I've also lost all faith. Maybe once I start feeling better life won't look so hopeless.

I brought my laptop to the hospital with me because the last time I was here I was told that they have WiFi for their patients. I'll check back in-between tests and procedures and again I really want to thank all of you.

I am sorry, that I have not seen your post until just now.
If your hemoglobin was at 7, I know exactly what you have, HEMOLYTIC ANEMIA. I had it in 1979. My hemo was at 6.2, I received 22 blood transfusions in the 7 weeks I was in the hospital.
I had no bleeding anywhere, I was 5 moths pregnant. It was hemolytic anemia, ask your doctor if that is a possibility.
Now 32 years later, my rheumy calls it autimmune hemolytic anemia.
All these blood transfusions did no good, the blood was destroyed as soon as it got into my body. The only thing that saved my live was a enormesly high dosage of Steriods. It saved me, even though I didn't recognise myself in the mirror, because of the very extrem moonface.

Please talk to your rheumy and ask him if this might be your problem too.

Debbie

debbie-b
03-02-2011, 05:30 AM
I am sorry, that I have not seen your post until just now.
If your hemoglobin was at 7, I know exactly what you have, HEMOLYTIC ANEMIA. I had it in 1979. My hemo was at 6.2, I received 22 blood transfusions in the 7 weeks I was in the hospital.
I had no bleeding anywhere, I was 5 moths pregnant. It was hemolytic anemia, ask your doctor if that is a possibility.
Now 32 years later, my rheumy calls it autimmune hemolytic anemia.
All these blood transfusions did no good, the blood was destroyed as soon as it got into my body. The only thing that saved my live was a enormesly high dosage of Steriods. It saved me, even though I didn't recognise myself in the mirror, because of the very extrem moonface.

Please talk to your rheumy and ask him if this might be your problem too.

Debbie

I have to correct something, I said my hemoglobin was at 6.2, but it was at 2.6, I reversed the number. When it was at 2.6 for months, the doctor told me, that I was in serious trouble. It could have killed me.
You need to talk to your doctor asap, because it can be life threatening.

Debbie

Saysusie
03-02-2011, 08:34 AM
GoodDog;
Just wanted to check in with you to see how you are doing? Are you still happy with your hemotologist? I, too, wonder why the doctors who specialize in our care (Rheumatologists) are generally the ones who dismiss us the quickest, care for us the least, and question us the most? It is almost as if they wish that we were not a part of their care requirements - because they cannot lump us into a pre-designed spectrum with block answers, they don't want to deal with us at all!
Your issues are very serious and I cannot fathom how anyone would dismiss them or think lightly of them! I hope and pray that your hemotologist is right and that you do start to feel better very soon.
Did you send a copy of your friend's beautiful article to the discharge coordinator @ John Muir? Also, it might be helpful to send a copy to the Hospital Administrator as well!
Please know that we are here for you. I wish you the very best.

Peace and Blessings
Namaste
Saysusie

mountaindreamer
03-02-2011, 10:53 AM
hi gooddog,

so sorry, but i just found this thread today....don't understand how they sometimes get lost, but they do.....thank goodness the other members are better at finding these threads, and they have all offered you some great support.

i have read your story, and am just so sorry that this country does not have better provisions for the "truly needy" people. If you lived in Georgia, i would be there to drive you to and from the hospital...please take care, and i am so honored to meet you.

GoodDog
03-02-2011, 12:21 PM
Thanks Saysusie and mountaindreamer. I met with my PCP yesterday and I feel hopeful that the infusions will help me feel better. It's hard to tackle life when you don't have the energy to even get dressed. She said having blood transfusions often is dangerous so they'll give me iron and test my blood weekly. I'll learn more when I go for my first infusion.