[danasa]

Okay here goes....

I was dx with Lupus 2 yrs ago. I have been bounced around from one med to the next with no real relief. In Sept. 2008, I was laid off from my job. In March of this year my husband was laid off from his job (he carried our insurance). I was being weaned from the steroids (diabetic) and methotrexate in Feb. of 2009 for the Rheumy to start some new therapy in March. Feb. is the last time I saw a doctor.

My doc requires payment in full and I can't afford the $60 visit to him or my regular physician. I haven't been able to afford any of my diabetes supplies since May of 2009. My husband and I applied for Medical assistance but with the total of $300 a week we make in unemployment, we don't qualify! Unbelievable.

I am not taking any medication right now except my Byetta as I found a drug program that will give it to me at no cost.

My pain level this last week has been out of control. My hip has been hurting so badly lately that I have fallen at least 4 times, 2 of those in public. I don't know what to do.

My husband is stressing me out by telling me to go to the doc, but I know we can't afford it, if I go, then the electric or some other bill won't get paid. The stress of him being concerned is stressing me out. I have tried to talk to him but he is stubborn.

I am doing everything I possibly can to stay healthy, staying at home, drinking plenty of fluids, getting plenty of rest, .... you get the drift.

On top of all this, I have a friend who in Jan her and her family went through a pretty tragic accident with her husband. He is on the mend and doing well. Being my best friend, I jumped right in and did everything I possibly could for her and her family. Watched her kids, donated time and money to a charity benefit we had for her, etc. etc.... but since then, she has been so ungrateful, negative and so out there... that I am getting angry. She and her family has been given all kinds of help and assistance and still to this day are receiving it. She complains that she doesn't have any money, etc, etc, yet she has gone on camping trips at least 5 this summer, she is leaving in Oct. for a vacation with one of her friends, yet I hear her complain constantly that life is giving her challenges and she is struggling, etc etc. and I know she is, but I just wish she would be quiet and listen to me for once. I don't want to hear about how she is cutting down on her food bill to $150 a week when I am counting slices of bread to make sure my son has enough for his lunches.

I really don't expect any miracles here, I just needed to vent, I am getting so angry and frustrated that I bite my tongue so I don't lash out at the ones that I love.

I also understand that being a doctor is a business, but where is the compassion? Why can't they accept some kind of payment schedule? I just don't understand todays world.

Sorry this is so long, I really just needed to vent.

 

[Katharine]

Hello and :welcome:

I'm so sorry to hear how much you have been through recently I think you have every right to vent!

I can't help you very much practically as I know next to nothing about things in the US but I do know that others have been in similar situations to yourself and some of our US members here were able to give good practical advice about getting help.

Your husband is right in that you have to, in some way, find a way back to the doc. You won't be any better off if you end up critically ill in hospital. I know that's easy to say for me but you really have to find some solution and there are solutions out there - it's finding them that's hard.

One thing you can try is calling your local LFA chapter and explaining the situation. I believe that there are some rheumatology clinics that will provide care at a much lower cost and also will accept a payment plan rather than straight off payment. I know it is terribly difficult to ask for help but believe me, you are not alone in this situation and no-one will think badly of you for doing so.

I know that it is frustrating when it takes so long to find the right medication. We would all like things to move along a lot faster than they do. However, you will get there. It has taken me just over 2 1/2 years to achieve some kind of balance and I know that that is pretty typical with it taking longer for some of those who haven't been fortunate enough to have the right doc from the start.

You are obviously under a lot of stress right now - who wouldn't be? That too is pretty detrimental to your health and will worsen any lupus symptoms that you have.

It is very unfortunate what has happened with your friend. I don't have any suggestions there as I am notoriously short of patience with such people :lol:

It might be an idea to start a specific thread about the insurance question and see what people can suggest.

Huge hugs :hug:

Katharine

 

[lin]

Im so sorry all this is happening to you both, i to dont understand how usa works, but i know wtha its like to try make ends meet, blooming hard,
And on top of all that you have meds to get and docs to see, i really feel for you.

As for your friend you dont have to fall out, just write everything down, and when she starts, or says whats wrong with you just say you know i dont seem to be able to chat these days but here thios is whats wrong............. and give it her, maybe she wont brag then as much

i have had to finish work, and my hubby as been out ofd work to since march, and im lucky this time i say lucky in the fact we dont have little ones this time like you, but i have been there with 2 little ones and hubby out of work. You screem as much as you want.

thinking of you and sending you (((((Hugs))))) Lin xxx

 

[debatat]

Hi, you really are going through a very stressful time. I am sorry I can't give you much practical help, I don't understand the way the USA healthcare works.

You do need to get to a doc though, I hope someone comes up with a good idea to help you. Your friend doesn't sound as though she appreciates all you have done for her, or realise how much you are struggling. Maybe you could give visiting her a rest for a while.

I really hope you can get things sorted, sorry I can't offer any more help.

Deb

 

[Pink Pearl]

Hi and welcome to the board.
You don't say if you are in the US, UK, Canada, Aus, NZ??? Have you tried to contact your local lupus chapter and see if they can help you to find a provider or clinic where you can get a reduced rate? Generally teaching hospitals/clinics are the best bet for a reduced rate. Also, if you can find a Nurse Practitioner who works with a rheumy is often cheaper than an MD. That said, I prefer to see my doctors rather than the NP.

For medications, most manufacturers in the US have a "help" program where you can get your medications for free. Some manuf will only send the meds to the person's physician, others send it right to the patient. To get in this program, you need to call the manuf and ask to speak to their PR representative. Then explain the situation and see if they can help out.

I wish you well, and hope you can get yourself care sooner than later.
Sally

 

[lazylegs]

Sorry to hear about your situation. The stress of the financial worries has to be making your illness worse. I hope you can find some help soon.

Check with your local hospital to see if there is a low cost clinic in your area. Here we have one funded by local businesses and fundraising activities for those in situations like yours. Also check with churches in the area. I have heard of them helping. Your county health department may have some suggestions for you also.

Take care,
Lazylegs

 

[zara]

If you want to submit your story to the President, go here:
http://healthreform.gov/communityreports/comments.html

 

[danasa]

Thank you for all the support and suggestions. I am going to go to the doc today.... my hubby made the appt for me after I fell again yesterday. I do get one of my medications from the pharm. company, but the other ones are older and don't have a program anymore. I will talk again with her today... and see what she can do.

Thank you all again. I really do appreciate it....

 

[Katharine]

Hi again

I'm so relieved and glad to hear that you're going to see your doc. It sounds like it was really time.

Let us know how you get on and what solutions you find.

:hug:

Katharine

 

[lin]

good luck hun xxxxxxxxxxxxx

 

[granny weatherwax]

Hey and Welcome

I am sorry to hear you are having such a rough time at the moment. Glad to hear you are going to see your doc... I hope she can come up with some solutions for you and you are feeling a little better soon......

Take care
Sending you lots of hugs
Claire xx

 

[Jennannshear]

Hello. I am in the US (new york) and I receive mediciad and food stamps.. and my husband brings in 24,000 a year.. I have not been able to work since Feb and I am sorry to hear about your situation.. I am not sure where in the US you live but my suggestion would be to re-apply for emergancy medical-food stamps.. its a little different then the regular process but it may help.. if your only pulling in 300 weekly then I am shocked your not qualifying for any help.. especially since you have no insurance with medical issues. I would suggest that you appeal it. Have you applied for SSDI? Also if you go to the hospital (er) and you tell them you can not afford the services or that you have no insurance they can and will treat you and you can fill out a form to offset the costs.. my friends are farmers and they have done this before.. and only paid very little for the services.. I know what its like to have no income.. and so I hope that things work out for you soon.. stress on top of disease is no good.. as for your friend.. some people are all about themselves and some run when faced with something they can not understand. She seems to be stuck in a pitty me phase and I hope she comes through for you soon..

 

[Clare.T]

Welcome but I am very sorry indeed about your struggles especially to get adequate medical care. The Lupus Foundation of America has comprehensive resources about all the various forms of help available in the USA, in case you don't know. Sadly, many people come just above the income requirements.

If the LFA has a Chapter in your area the staff and members there might be able to direct you to reasonable doctors. Their website is http://www.lupus.org/webmodules/webarticlesnet/templates/new_empty.aspx?articleid=277&zoneid=76

Adversity brings out the best and worst in people. We often comment how many friends turn out not to be so caring just fair weather friends and takers.

I wish you the very best of luck and many hugs
Clare

 

[danasa]

Hello Friends....

My doctor's appt. wasn't as productive or simple as I hoped it to be. My main concern took a back seat to the doctors main concern......

My BP was up to 190/86 and my heart rate was 140. Needless to say..... her concern, rightfully so, was my vitals. EKG showed no changes from my baseline, so that was good, but she increased my BP medicine and I return on the 31st for a follow up. If my BP and heart rate don't come down, she is sending me to a heart specialist. Her explanation for the increase in aches and pains is the cooler weather, which I knew, and my body fighting the BP. She said that increases in these two vitals will cause an increase in pain too.

I hope that they come down and we can address the reasons for my visit in the first place. In the meantime, I just wait and pray.

On the issue of Medical and food assistance, my hubby and I went in for our 6 month review on Sept. 14th. No changes except that they decreased our food assistance from 269 to 200 for a family of 3. Problem is, we were told that everything is approved, but now we are told that it is "pending"??? Our food card was to be reloaded on Oct. 4 and we are still waiting. We have gotten returned phone calls with the response "I am looking into it". We weren't approved for medical though. I really don't understand the system, never had to use it before, so this is all so new and frustrating.

On the bright side, a family relative had heard about our situation and came over for a visit last night and brought bags of groceries. I almost cried. I am so grateful.

Once again.... thank you for all the support and suggestions. I really appreciate it more than you will ever know.

 

[Jenkay]

I'm so sorry to hear of your situation. You may have already done this but checking with local churches may help with your food situation. In our town there is one church that has a free food pantry open all the time and there are regular food drives to keep it stocked. I would start by calling each and seeing if they are aware of any programs like the one here.

I hope things are going ok for you and your pain gets better.

 

[lin]

just checking back in to see how you are feeling now??? thinkgin of you


take care Lin x

 

[macfamily53]

Hi Danasa

I am so glad to read you did go to the doctor finally.I can so relate to everything you are saying about the fianances anyway.i to have a husbdan thats been layed off since april of 09.I am on dissabilty since 2003 i think lol.Then with him on unemployment we also are not making it to pay for any of our bills either.we also tryed for assistance for food stamps and was told we make to much money :rotfl:which is really funny also because my hubby makes 225.00$ a week on unemployment and i make not much more then that in ssdi.I do know there is a lot of assistance out there with local charities in most states.I am so glad you have people helping you out with the diiferant needs.You sound like such a wonderful caring person so it is okay for people to help you out and i do understand wnating to cry becasue you are so thankful for the help and i am sure they know that also.Stress if you did not already know is the number one thing that causes stess with Lupus patients .I try to ecery day at least lay back and meditate or take a short anp and it ussualy helps some anyway.I just wanted to let you know that i plus many other are here for you wether it is just to vent because we need that for sure or to aks questions.Take care of yourself and keep us posted.

Tammy

 

[debatat]

Hi Danasa, just wondered how you were doing? I hope your bp med is working and that you are in less pain. Also hope your food situation gets sorted.

Take care

Deb x

 

[Douglas]

I am so sorry to hear of all the string of misfortunes you are enduring.
I pray things will get better soonest!

Douglas+

 

[superloopie]

Hoping things are going better for you. I also was going to suggest the local churches or food pantry nearest you. I know my dad gets his medication paid for through astra zeneca (sp?) but many of his prescriptions (and some of mine) are on wal-mart's $4.00 dollar list. Maybe your doc can find something similar so it wont be as costly to get your meds refilled? (((HUGS)) to you and praying things will turn around for you soon.
Angela