New to this site, desparate for help!!!

Your post really moved me. Welcome to Healing Well...I hope you can find the support you need. I can empathize with the pain you are in, as I have a rheumatoid type of arthritis myself (it's one of my Crohn's disease manifestations). I can also empathize with the loss of work and how even the most smallest of chores takes real thought and planning. There are people on this site who've been through the system of getting some type of help...I'm sure they will come and offer suggestions...in the meantime (((((((((((((((((((hugs)))))))))))))))))))))))))))))))))))

Pixie..

First I want to welcome you to our family.  You will get all the support and advice you will need to make it through this time in your life.

Ok I will start by saying there are a few member who have or are in your same situation.  One of them is PAlady and she will be along this afternoon sometime.  She will be a fountian of information for you.  I will let her tell her story but shes got the hook ups on alot of program information.  On medications and so on.

We also have a thread on here somewhere about drug companies and deals they give people who can't afford there meds.

Now onto how you feel.  I have felt the same way.  Main word Felt.  I went to my pain clinic the first time and they put me on an anti depressant even though throughout my life I was never a depressed person.  The doctor expained Chronic pain makes you feel depressed and that the world is NOTHING.  So he put me on two different ones.  WOW it helped so much.  Yes I still have the pain everyday all day but I can smile and laugh.  After awhile I felt some of the pain lessening.  Another attribute to taking an anti depressant.

Just recently I was having issues about getting a cane.  I'm 39 and never thought I would need or want one.  Instead of crying and crawling into bed to hide I laughed about it and talked with everyone on here about it.  It was one of the funniest threads.  But it helped me make my decision.

Just remember how you feel mentally will always affect your presious family.  I'm so glad you came to us for some advice.  Its hard on my family and they are teenagers.  But they willing help me I'm not allowed to do certain things.  Can't mow the lawn and I miss that.  But you on the other hand have a small baby.  That is a HUGE task when dealing with Chronic Pain.  We also have alot of members with small children who feel just like you.  Overwelmed and overworked.

Please stay with us and keep us updated....

Laurie

I agree, with the supportive spouce thing. My wife wasnt very supportive, until she recently had back problems herself....then the light went on....and she is much more supportive. as for how you feel, I understand totally...and have complained about feeling wothless all the time....I have never in all my life felt this way...and have always thought Iwas a stud of some sorts. This kills me mentally...and then to live every waking moment in pain is more than I can bare at times. So I really feel for you. I dont have any answers for you, and Im hoping that someone here can help you out. One thing that makes me feel better is to read of others problems. For example read yesterdays coment that Dani Henson made and by the time you get through reading it....I swear you will feel like a million bucks! I have DDD also. and know the type of pain your going through...and its a real drag. Im guessing laying down helps a little, and have you done PT?

Hi, Pixie,
Welcome to the chronic pain forum of Healing Well. I'm so glad you found us, although sad for all you're going through.

Like LLPLUV mentioned, I've been coming up with info. about medications because at the moment I have no insurance and unemployment has run out, so I am in the process of applying for SSD. I'm not sure if you ever did, but some form of disability may be an option. I'm not sure why you don't quality for Medicaid, but my guess is it might be your husband's income. IF he has or can get health insurance from work, is it possible for you to be put on that policy? I also know here in PA there is a state program for people who aren't eligible for Medicaid, but still meet some low income guidelines. Problem is there's about a 2 year waiting list. I have applied for a low cost policy and am waiting to here, but it still won't have prescription coverage. There's a thread that several of us added resources to and I'll find it and bump it up to this first page. Right now I am actually getting most of my medications at no cost - but I did have to send them my taxes and other income information, along with an application for each different pharmaceutical company. Worth it, though. The place I started was
www.pparx.org
which is the site Montel Williams advertises. You have to work with it, though, as it links you to the various programs depending on the medications you're on. And then you have to fill out applications.

But there are also a number of discount cards that you can get even if you're not low income. I'm getting my generic percocet from WalMart for $22 thanks to a discount card another forum member told me about. I was also shocked when I called around to price each medication at the chain pharmacies versus WalMart and other places now offering pharmacy services. A lot of this info. is on this thread.

Of course you'll need a doctor to prescribe the medications. In a nearby city we do have a small clinic started by doctors and nurses volunteering their time for people who are uninsured. Ask around. Or you may be able to negotiate with at least a local doctor for a low rate for an office visit to at least get things like an anti-depressant, and maybe some help with pain medications. And then you can use the resources to get them at low cost.

You've done an amazing job managing without any medications, so maybe it won't take a lot to give you some relief. Keep searching. Look for local community centers, call your local Red Cross or even the E.R. and ask if there are any clinics for the uninsured. And see if your state offers any alternative programs for those not eligible for Medicaid. Call one of your state representatives and ask.

Anyway, I'll look for the thread with the info. about medications.

Glad you joined us!

PaLady

pixie6976
I am sorry for what you are having to go through! Whith your age so many Doctors are very reluctant to do allot of the fusion surgery that you need. I think one of the reasons is that when ever they do a disk fusion it puts allot of stress on the disk above and below the fused area, and there is a very good chance that within a few years you will need to get those taken care of. If they have to fuse several in a row the stress is all that much more on those other disk and the sooner they will have to be fixed. But with that said, that doesn't help you at all!! Unless they do something to take the pressure off the nerve roots your going to have continued pain! I really think you need to talk with a lawyer about trying to get SSD because of your back! Have you talked to your SS rep. and have you applied for SSD because of your back problems? If you can get a Doctor to support you on this, and from what you say you should not have much of a problem on getting documentation. If they say you need surgery but the Docs are not willing to do it, well then what are you suppose to do? Maybe you have already tried all this things. But if you haven't it might be worth your time to do so.

You should not have to live your life in constant pain. And you should be able to take care of your little one. If it is hard for you now, the next few years is not going to be any easier, and those disk can get worse!

Pixie I do hope you can find the help that you need! I am glad you found us here, and hope you stick around. You are not alone in this!
Good Luck to you and wishing you only the best!

White Beard

Hi Pixie,

I too would like to welcome you to Healing Well. I see many of the others have jumped on board and given you lots of info. I am so glad you found us but very sorry to see another person show up with CP. I think you will agree this is a terrific group of caring people. Many have been in your spot at one time or another or may be standing right there beside you now. The main thing is to know you are not alone in this and thats imporant for someone struggling with health issues because many times we do feel alone.

Its great that you have a supportive husband. Many spouses find it hard to deal with CP, men think they are suppose to fix things and CP is one thing those guys cannot fix. So, yes, it does affect them as well. Others flat do not get it and cannot understand it. CP is not something you can see like an open wound or a broken arm or leg in a caste. The only people that can truly appreciate CP is another CP patient. Its hard for us to understand at times, so naturally someone not directly involved is not going to understand it.

Depression and CP go hand in hand, thats a given. Many times if a person can get on medication for the depression they find that the pain has lightened up a little too.

Three level fusions are not done very often for reasons WhiteBeard gave you too. Also, another factor fusing three levels pretty much makes the lumbar spine like a broom stick with very little movement and most flexibility would be gone and drs really do not like going down that road on a person.

By chance where you live do you have a "county hospital" that provides indigent care. Simply meaning people with no insurance, people with no insurance and income. These places operate on a sliding scale to free care if the qualifications are met. We have one here in the town I live in. Might be worth checking into if you haven't already.

I think if I were in your shoes, I would consult with an atty that handles SSI & SS claims only and get an opinion on re-applying, however, I would be inclinded to try first for SSD if you have met the earning requirements.  You may be able to qualify for both. A call to SS can tell you that. That was a rotten trick pulled on you over the SSI benefits. Typical government BS.

Please understand that you are worth alot more than you are giving yourself credit for. You feel this way because you are depressed, in pain, not getting any relief with your pain and a slew of other factors are weighing heavy on you right now. One thing you need to realize is you are much stronger than you think. Most people with chronic health issues are extemely strong individuals because of what they have to deal with on a daily basis. Not everyone can handle this stuff.

As one of the others said, you just keep knocking on those doors, one of them will open up for you. I hope you will continue to come here and post and hang out with us.

Hi Pixie,

I agree with Golitho, I can't add anything to what already has been posted....just wanted to say WELCOME and let you know we are here to support and hopefully lighten your load.

(((((((((((((((((((((((((((((Pixie)))))))))))))))))))))))))))))))))))

XXOO
Patti

 

   Dear Pixie,

 

     Good morning. My name is Dani. It is very nice to meet you *huggs* I am terribly sorry I didnt introcuse myself sooner. Things are a bit.... well the days are a bit long. I am sure you understand what I mean.

 

     How are you feeling today? A little better I hope? It is cold here, and for some reason the cold seems to shoot straight through to my bones. Is it cold out where you are?

 

     I read through all your posts and I am afraid I havnt much advise to offer or mush to add that hasnt already been said.  All the members here are an endless wealth of knowladge and support! but!! I did want to stop by and introduce myself and send a warm welcome *warm huggs* It really is very nice to meet you *huggs*

 

*huggs*

   dani

 

Sorry I didnt go online yesterday, but my body just wasnt working right. You know, the usual cramping and debilitating pain, nothing spectacular. But I do have some fabulous news, and maybe some more questions if you guys are up for it.

First a little back story... My son was on medicaid for the first year and it had just run out (I didnt know I had to reapply until the last minute). Since my hubby and I both had difficulty finding our birth certificates, and you need them to get assistance, we just applied for the boy to get medicaid. I finished the application on thursday night, and would you believe that friday afternoon some one called me for a phone interview. Since my hubby got laid off a month ago and hasnt found a job yet, the three of us qualified immediately for foodstamps and medicaid. We knew that we would under the current circumstances, but when I called to find out what we needed, a birth certificate if you were not born in Florida was a must. During the phone interview the lady said that all she needed to do was look us up on the DMV. Anyway, the medicaid is good for a year, even if John does find a job. The scary thing was that usually when you get foodstamps and stuff they make you got to this work net thing every day to try to find a job. When I asked her about this, she said that she was not even allowed to refer people to this because there are already full and there are no jobs to be had. We just thought it was Construction that was down.

So that was the update, now for the problems that Florida medicaid will bring. When I was on it a couple of years ago it was hard to find doctors that will take new patients with medicaid because as one doctor told me, medicaid only pays like $25 per patient and someone with my medical history requires a lot of time and paperwork. Most Drs tell me that I have too many medical problems. The last dr that I saw on medicaid said that she would take be back whenever I wanted to give her $75 or if I got insurance again, so I can probably go back to her. She kind of sucks though. She goes too fast, doesnt explain things, or allow me to participate in my "recovery" if you will. But I know she cares. She always remembers things about me that are supprising, and she will refer me to any specailist I ask for. She doesnt like prescribing PM on a reg basis, but she will give me Tram and send me to a PM office. The problem is that I have never found a PM office in the tampa bay area that will take medicaid. The ones on the list usually say that they are not taking NEW pts. Anyway, I guess every door has a lock on it, maybe even some barbed wire sometimes. At least I can go to the doctor. I know it wont fix the problem, but I will be more than happy to mask it for a little while!

I am overwhelmed by all of your support, and glad that I can come here.

Dear Pixie,

I just wanted to welcome you and tell you that you couldn't come to a better place. The people and the moderators are the best.

Your back problems sound very similiar to mine. I know whatever advise given to you was good and from their hearts.

Unfortunately for myself and husband who is truely sick with chronic fatigue we can't even get disibility because our credits ran out. It really stinks considering all the money we gave to SS and now we need it, are qualified. The thing I can say is don't wait and get a lawyer who agrees not to accept payment until you can receive.

I know the pain well and in my state can get medicine but nothing is helping.

Sorry--this isn't about me, but I welcome you and will pray for you right now and wish you the best. I have heard of women who aren't getting support. I know my husband is filled with pain and still shows me do much love and attention. I thank God for him and I am sure you are grateful too.

Bless you. And I wish u well.

ThanksChartreux. And Denim, i know all about the nothing working. When I did have drs and all the meds in the world, I too had the prob of nothing working. They threw drug after drug at it. But since I have spent 2 years without a dr, I think that part of my prob was that i was doing too much. I am hoping that this time around I can find a good balance between activity and rest and find a way to make this work.