family battle...

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bella4
Regular Member


Date Joined Jun 2005
Total Posts : 263
   Posted 9/24/2008 12:31 AM (GMT -7)   
cry  hi everyone,
 
i can hardly believe it...my stepmom actually said that my illness is all in my head.  now, i have always known that her and my dad don't necessarily believe the severity of my illness but to hear that they actually believe i am making it up and it is all in my head????  wow!
 
i im in the middle of my disability claim appeal and my stepmom told me that they absolutely will not grant my claim because i am just not sick.  literally, i have had now 3 conversations with her concerning my health problems.  she actually had to take me to the ER a couple of months ago for migraines which i get often and sometimes my meds do nothing for me. she did not say 2 words to me in the car there, in the hospital, driving home or after i woke up at home 6 hours later and neither did my dad.  i have had several ER visits over the past year and nearly died from ALP 2 years ago.  i just don't see what they don't get and i know i don't have to and i have chosen not to stress myself out over their lack of compassion or regard for my well being but...  my stepmom not only told me that it was in my head, but that i was doing a disservice to my 4 kids (6 yr old twins, 5 yr old and 12 yr old) by showing them that "bilking" the system was the way to live life.  she accused me of not caring about my kids.  my kids are with me and the easy thing to do would be to send them off with their father who is a risk to them.  i thought it was obvious how much i care about them. i am doing the best i can and they don't see it.
 
i left my husband a year ago and he stopped paying child support, we lived for 3 months in a battered women's shelter and have essentially been "couch surfing" for the past 3 months.  and... i have been unable to work (which my parents think i should be able to).  child support services finally caught up with my husband but it has been extremely difficult esp with no emotional support or otherwise from my family.  my stepmom actually asked me if a doctor told me i was sick and couldn't work.  what?  what a ridiculous question, i thought.  seemed obvious to me or i would not have an attorney representing my disability claim.  she seemed surprised that, in fact, 3 doctors have said i can't work and that i have been exempt from participating in the welfare to work program.  can i say duh here?!!!  lol...
 
guess i just needed to vent!  if you read this...thank you!!!
 
bella
dx jan 06:
sle, leukopenia, neuropathy, interstitial cystitis, raynaud's, dermatomyositis may 07


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 9/24/2008 6:25 AM (GMT -7)   

Sometimes it seems that our families might be the hardest to convince, making our battles that much harder.  I am sorry that you have to fight two battles, SSA on the one hand and your family on the other. 

By couch hopping you mean living in other people's houses for a short time?   and four children with you to take care of.  This has to be extremely difficult for you.

you said that you are exempt from participating in the welfare to work program?  I didn't know there was such an exemption to work first welfare.  this is a good thing.  At least you have this income small amount that it is.  And I am guessing you get medicaid too, which is also good to get your meds with.

At this time I could not imagine myself in your position, or how well I would cope with it, especially with children.

What does your family think that your meds are for, a healthy woman?

Sending prayers your way.  Hope things work out well for you at SSA.  At least if this was approved than you might be able to live in a subsidized apartment or house.

Hester

bella4 said...
cry  hi everyone,
 
i can hardly believe it...my stepmom actually said that my illness is all in my head.  now, i have always known that her and my dad don't necessarily believe the severity of my illness but to hear that they actually believe i am making it up and it is all in my head????  wow!
 
i im in the middle of my disability claim appeal and my stepmom told me that they absolutely will not grant my claim because i am just not sick.  literally, i have had now 3 conversations with her concerning my health problems.  she actually had to take me to the ER a couple of months ago for migraines which i get often and sometimes my meds do nothing for me. she did not say 2 words to me in the car there, in the hospital, driving home or after i woke up at home 6 hours later and neither did my dad.  i have had several ER visits over the past year and nearly died from ALP 2 years ago.  i just don't see what they don't get and i know i don't have to and i have chosen not to stress myself out over their lack of compassion or regard for my well being but...  my stepmom not only told me that it was in my head, but that i was doing a disservice to my 4 kids (6 yr old twins, 5 yr old and 12 yr old) by showing them that "bilking" the system was the way to live life.  she accused me of not caring about my kids.  my kids are with me and the easy thing to do would be to send them off with their father who is a risk to them.  i thought it was obvious how much i care about them. i am doing the best i can and they don't see it.
 
i left my husband a year ago and he stopped paying child support, we lived for 3 months in a battered women's shelter and have essentially been "couch surfing" for the past 3 months.  and... i have been unable to work (which my parents think i should be able to).  child support services finally caught up with my husband but it has been extremely difficult esp with no emotional support or otherwise from my family.  my stepmom actually asked me if a doctor told me i was sick and couldn't work.  what?  what a ridiculous question, i thought.  seemed obvious to me or i would not have an attorney representing my disability claim.  she seemed surprised that, in fact, 3 doctors have said i can't work and that i have been exempt from participating in the welfare to work program.  can i say duh here?!!!  lol...
 
guess i just needed to vent!  if you read this...thank you!!!
 
bella


Lupus diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008
 
******
aspirin daily, multivitamin daily, Arthrotec 50mg twice daily, Meclazine 25 mg, as needed 4x daily, Hydoxychloroquine (plaquinil) 200mg twice a day, Metoclopomide 10 mg, 4x daily, Doxepin 50 mg one cap 4x day, Metoprolol 100 mg daily, Levothyroxine (synthroid) 50 daily, Amlodipine 5mg daily, Crestor 10 mg one tab daily, Lisinopril 40 mg, one tab daily, Omeprazole (prilosec) 40 mg daily, Plavix 75mg daily, promethazine 25mg x4 daily, Restasis one drop in each eye every 12 hours
 


Tá mé breá
Regular Member


Date Joined Aug 2008
Total Posts : 140
   Posted 9/24/2008 10:15 AM (GMT -7)   
Bella, I am so sorry you are in this situation. But, worrying about what they think will not help you. It is not worth your effort and strength to convince them or to care what they think of you. You know you are very ill. Taking care of your self is the best thing you can do right now.

Some of the best advice I was ever given by my grandmother was "if they don't care about you, why do you care that they don't care about you?" Family is hard, feelings get hurt, but like I said... that energy you are wasting on them, they do not deserve and you can not afford to give that energy away. save it for those who do need you and love you.


I wish you all the best.

Marie
43 yr old mother of 6 grandmother of 1 going on 2!
dx 2006 - autoimmune issues, arthritis, 01/2008 - myelofibrosis. as of 08/08 testing continues signs point to Lupus. (family history - mother RA/Lupus).

symptoms - malar rash, mouth soars (in and out), joint pain, extreme fatigue, migraines, heart pounding on light activity.

rx-cymbalta, propranolol, clonazapam, prednisone, progesterone cream, supplements - b6, b12, flaxseed oil, c.

"All we have to decide, is what to do with the time we are given" ~ Gandalf


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 9/24/2008 10:18 AM (GMT -7)   
(((((((((( Bella ))))))))))))


Sending you some hugs and hot tea sis!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 9/24/2008 3:30 PM (GMT -7)   
Hey Bella (((hugs))),
 
I have a small understanding of what you're dealing with too.  My grandmother doesn't think I'm as sick as I say I am.  She lives on the west coast and in August, she was out here in Alberta for a visit.  I haven't seen her in over 2 years.  She knows what I've been through this past decade and I honestly can't believe that she is questioning my health status.  She's the only person in my ENTIRE family who has questions about me.  So lupus, fibromyalgia, a STROKE, heart valve problems, blood disorders, etc aren't enough to convince you?  Whatever!!!  She's a cranky old fart anyway. Toxic actually. 
 
I'm sorry you don't have the support you need so very much. I hope it helps to know you aren't alone on this topic.  Lupus is such an invisible disease.  You can look fabulous on the outside, but what's going on under the skin is a catastrophic nightmare to put it mildly.  It can be really difficult to convince people you're sick, when you don't look sick.  Happens to me a lot.
 
Big hugs Bella,
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, Tramacet, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


puccini914
Regular Member


Date Joined Jun 2008
Total Posts : 363
   Posted 9/24/2008 5:21 PM (GMT -7)   
((((((((((Bella))))))))))) I would ask your doc for some patient info sheets or print them off the internet, lots of good resources in Rosie's signature. Hand them one or two pages, a book may be asking to much. I think we also have to keep in mind that our families go through the same "grieving" process that we do. Anger, denial, etc.. Sometimes we have to help them through the process as well as ourselves. Best of luck with SSD, I just filed my first appeal. I have to go lawyer shopping because the first one turned down my case because it's been 8 years since I last worked. I was busy having kids. Two boys 1 and 6. I would try to inform my family before I wrote them off. A lot of my friends don't get it either. One is always telling me I just need to get out in the sunshine for a while. LOL, yeah, right. At least we have this place where everyone understands what you're going through. Hugs and Blessings.

Jennifer

PCP DX Lupus and Fibro, Taking plaquenil, Cymbalta, Flexeril,Claritin, Zantac,Ambien,vitamin B-12, multi- vitamin, Darvocet.  Homeschooling Mom of 2 boys 1 and 6.  Symptoms: Fatigue, joint pain, heat/sun sensitivity, mouth and nose sores, malar rash, migranes, awful hives, positive ANA, and RF.

 

 


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 9/25/2008 6:27 AM (GMT -7)   

I think both you and Jennifer had good advice mawmaw.  Our energy is wasted trying to convince our family of our illness.  and it is helpful to ourselves as well as our families to recognise that they are in that grieving place, and it is easier to deny our sickness than to admit to it.

Hester

 


Lupus diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008
 
******
aspirin, multivitamin, Arthrotec , Meclazine ,  plaquinil, Metoclopomide, Doxepin , Metoprolol, synthroid,  Amlodipine, Crestor, Lasinopril, Plavix, phenagrin,  Restasis  


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 9/25/2008 7:31 AM (GMT -7)   
Bella, take them with you to your next rheumy appointment. Your rheumy will convince them in ways that you won't be able to since they've made up their minds about you.

Good luck. It's a tough road.

Pat
Lupus, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 9/25/2008 7:55 AM (GMT -7)   
bella, I am really sorry you are going through all of this. Chronic illness is hard enough to deal with under the best of circumstances. It really stinks that your family doesn't get how sick you are and they aren't giving you much support at all through all of this. Hang in there and know that we are here for you. Take care and it's good to see you back here.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

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bella4
Regular Member


Date Joined Jun 2005
Total Posts : 263
   Posted 10/1/2008 3:13 PM (GMT -7)   
hii everyone,
 
thank you all for reading my posts and for your responses.  sorry it has taken me so long to reply.  since the kids and i don't have a permanent residence, it is not always convenient to get to a computer.
 
you all are so sweet for the ((((hugs)))) and words of support and wisdom!!!  i know it is not important what my family thinks, i am just not used to needing so much help and then having to explain or justify the situation with my health.  they would rather put the focus on something that they don't believe in or that they disagree with rather than the issue at hand... which is that my husband abandoned me and our 4 kids and we are homeless!  it seems that they want to justify not helping me, and my illness is something that they can argue (i don't know, does that make sense?).  i don't move, think or function as quickly as i used to and it takes me a bit longer than the average person to figure things out sometimes!!  lol...
 
well, thank you again!  hope you are all having a happy day!
 
bella
dx jan 06:
sle, fibromyalgia, neutropenia, chronic anemia, neuropathy, interstitial cystitis, raynaud's, migraines, seizures


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 10/2/2008 8:28 AM (GMT -7)   

Is there anyway that you can get into subsidized housing?  It seems so awful for you living with these other people who do not wish for you and your children to be there.  Is there anyway for you to get welfare money payment? 

I wish there were more things that we could do to help you.

Still sending prayers to you, and hoping that some sort of secure arrangement can happen for you and your children.

Hester

bella4 said...
hii everyone,
 
thank you all for reading my posts and for your responses.  sorry it has taken me so long to reply.  since the kids and i don't have a permanent residence, it is not always convenient to get to a computer.
 
you all are so sweet for the ((((hugs)))) and words of support and wisdom!!!  i know it is not important what my family thinks, i am just not used to needing so much help and then having to explain or justify the situation with my health.  they would rather put the focus on something that they don't believe in or that they disagree with rather than the issue at hand... which is that my husband abandoned me and our 4 kids and we are homeless!  it seems that they want to justify not helping me, and my illness is something that they can argue (i don't know, does that make sense?).  i don't move, think or function as quickly as i used to and it takes me a bit longer than the average person to figure things out sometimes!!  lol...
 
well, thank you again!  hope you are all having a happy day!
 
bella


Lupus diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008
 
******
aspirin, multivitamin, Arthrotec , Meclazine ,  plaquinil, Metoclopomide, Doxepin , Metoprolol, synthroid,  Amlodipine, Crestor, Lasinopril, Plavix, phenagrin,  Restasis  


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 10/2/2008 2:54 PM (GMT -7)   
Bella, I understand. Most of my family is clueless too. They would rather call me lazy than acknowledge I have been as sick as I am for as long as I have been sick and that they blew me off. I nearly died before my grandma saw the light but when she did it was especially hard for her because she lost a mother and sister to lupus and had treated them like it was all in their head too. The guilt load for her was very high but she still faced it. My mother still thinks I can cure myself. Yeah right now she thinks baking soda and vinager are a cure for lupus and keeps nagging me to try it. ICK! If it were a cure I would do it but I know better.

As to your step mom has your step mom or dad come to a dotor visit with you? If not maybe you should say come with me and my doctor will explain things. Make an appointment and have your doctor tell one or both exactly what lupus is. Even a letter from your doctor might help. Since it stresses you your doctor may feel more inclined to help because stress makes us worse. I also think that given your homeless status you should be able to move to the top of some subsidized housing list. I would check around. Call local churches. Believe me the church network is often more help than the government. Do not be ashamed to use the system to get what you need for you and your kids to survive. You are teaching your kids that it would be easier to work than to use the system because they see what kind of life the system can provide. How many people who have been homeless and had to struggle for basic necessities want to go there ever again? I know I don't because I have been there and done that. If I could work I would because I would be better off than the system will ever make me. I am sorry, but those of us with lupus do not fail to work because we are lazy or bilking the system. Most of us would love to work because that would mean being healthy enough to work. Some of us would love to stop working because it would improve our health.

Your ex needs to be strung up for failing to pay child support. I am sorry but men who fail their children are as low as the ones who beat their wife and/or kids. Sounds like your ex did all of the above and deserves way worse than he will ever get in this lifetime. I wish I could offer more than encouragement but I am in a really bad place with my disease right now.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements


blushladybug
Regular Member


Date Joined Sep 2008
Total Posts : 32
   Posted 10/2/2008 3:59 PM (GMT -7)   
hi bella!!!!!!
your stepmom either has some serious big bad brazen brass balls or she is terrified for you. i so so understand what it feels like to go thru this thing with parents who are totally non-supportive. i am so very very sorry. i think some made the point that it may be our family grieving for the image they have of us and need to go through the 5 steps to acceptance of who you actually are and what you go through. My mother keeps screaming at me that my real problem is that i am lazy, fat, and a hypochondriac..... and my kids are learning that i'd rather 'be in bed pretending i'm sick" instead of being there for them attending to their needs (as if anyone could ever fulfill their kids needs-healy or not!!!! arrrggghhh). what totally blows me away is that i have a younger sister with fibromyalgia and they were so understanding with her.

actually, if it were me, i would keep a daily journal first off, (may be the most important thing later on). then i would work on finding a lawyer who specializes in family law and possibly medical claims. ask around, someone will know someone who will be a shark feeding on your minnow husbands guts...it makes me sick he won't help monetarily with your children. especially if he was/is abusive. start at the shelter...maybe they have a lawyer on consult....tell your story to someone please, someone who will help. churches....social workers, find a women's group in your area. someone will know how to start this all!!!!!

you and yours are in my prayers.
keep us informed!
krista

Post Edited (blushladybug) : 10/2/2008 5:03:06 PM (GMT-6)


Tá mé breá
Regular Member


Date Joined Aug 2008
Total Posts : 140
   Posted 10/2/2008 4:25 PM (GMT -7)   
hear hear blush!
Marie-43 yr old mother of 6 grandmother of 1 going on 2!
dx 2008 - myelofibrosis - possibly autoimmune, osteoarthritis in spine, testing for possible MS or CNS lupus / vasculitis. family history - mother RA/Lupus maternal gma - lupus.
rx-cymbalta, propranolol, clonazapam, prednisone, progesterone cream, b6, b12, flaxseed oil, C.

"All we have to decide, is what to do with the time we are given" ~ Gandalf


bella4
Regular Member


Date Joined Jun 2005
Total Posts : 263
   Posted 10/8/2008 12:33 PM (GMT -7)   
hi all!
 
i have about one minute to post.  i am on a library computer and people are waiting.  just want to say thank you so much for all your prayers and thoughts!!!!  thank you thank you.  you all do understand and are so supportive.  yes, to all your suggestions...i have tried churches, womens center (we lived in a shelter for 3 months), am on section 8 list (have been for almost a yr).  there is not that much help out there, really for people like me and others in my situation.  can't afford a lawyer and can't find anyone to help me low cost or go after my husband for fees (yet he has lawyers fighting every effort of child support services to make him pay) it is horrible. yes, redrose he should be strung up by his toes and put on a  sign next to the highway!!!  ok, i have to write back when i have more time. hope you all are having a "good" day!
 
bella
dx jan 06:
sle, fibromyalgia, neutropenia, chronic anemia, neuropathy, interstitial cystitis, raynaud's, migraines, seizures


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 10/9/2008 7:43 AM (GMT -7)   

It can take a long time to get approved for  section 8, especially today when so many have lost thier jobs and their homes.  I lived in a housing authority apartment for a year one time.  they are hard to get on too, and the rent is a little higher than section 8.  one of the things that people do here is find a section 8 house and find the landlord.  Then he contacts section 8, and he rents the house or apartment to you.  and you don't have to wait to be approved on that list.

many prayers sent your way, hoping that you and your children can find a place soon.

Hester


Lupus diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008
 
******
aspirin, multivitamin, Arthrotec , Meclazine ,  plaquinil, Metoclopomide, Doxepin , Metoprolol, synthroid,  Amlodipine, Crestor, Lasinopril, Plavix, phenagrin,  Restasis  

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