Status
Not open for further replies.

jrasted79

New member
Joined
Feb 5, 2015
Messages
8
Reason
Undiagnosed
Diagnosis
00/0000
Country
US
State
CA
I am new here. I am sure at some point I will be given the Fibromyalgia diagnosis. I started becoming sick at age 30 when my daughter was around 4. I was a single parent from the beginning and life was great. I had a high paying job, we needed for nothing. She is my life. It kills me now that we have to survive on $515 a month and I can't do anything fun with her. I try to, we do crafts while I sit in bed, I am teaching her how to sew. We take small walks.

I have a very hard time walking. I can't even make it through the grocery store. I have horrible fatigue and I can't retain any new information which makes college very hard. I kill myself going to school full-time because I need the grant money to survive. I do get assistance through ACCESS (disabled student program) I have been denied 3 times for disability. I am under the care of a neurologist but he referred me to pain management to "diagnose my chronic pain condition" I am on a waiting list but I just noticed the insurance approval expires in March and the office said I wouldn't be able to get in until April at best. The other problem is that the office is 2 hours away. It is the closest one they had. I fear if they make me do physical therapy, that I won't be able to drive home.

I've been tossed around many different specialist since the pain started. One doctor even put malingering (lying about symptoms) in my medical record. I have been scolded, yelled at, and lied to by doctors.

I have been through a few traumatic events in my life and I suffer from PTSD. Now I suffer from major depressive disorder as well. but lately the depression is so bad. I hate my life, I feel like a failure, I feel like half a person. The last denial from an Adminstrative Law Judge from disability was very rough. He accused me of all sorts of things. Now my case has been sent to the appellate court. If I had disability I wouldn't have to kill myself for school, and I could take care of us with less worry.

I don't really have a point in writing this, I just need to vent.

Well maybe I have one question. Does any one have joints that swell? If I walk too much my ankles and feet swell like crazy. So do my fingers if I type or sew too much.
Here is my normal foot
here are my swollen feet.
 
Last edited by a moderator:
Hello and welcome to the forum. Sorry I had to delete your pictures but they were not showing up on site. I would say to ask your doctor about taking water pills to help with the swelling in your feet and legs. Are you diabetic or any chance you have RA? RA can affect the joints in your hands and cause foot problems as well. Have you had tests done looking for MS or other muscle/joint disorders?

Most all of us here have gone through the disbelieving doctors who write cruel and rude things in our reports and shout at us or just rudely treat us like we are crazy. So now you found a great supportive forum and we hope being here you might find some new coping skills and ways to manage your pain without drugs. Please read through the chronic pain and fatigue sections, as well as, the alternative methods and general section. Be sure to read some of the older posts, as well as, the new ones looking for helpful ideas.

Feel free to vent and also to ask more questions and answer other peoples posts. I hope you will not feel so alone anymore knowing we all care and totally understand what your going through. Good luck in finding answers from your doctor and pain management. Glad you found us. :)
 
Jrasted79, I'm so sorry you are having such difficulty. It's okay to vent. I think we all have at one time or another. Just know that none of this is your fault.

If you ever have a physician yell at you or lie, I would assume your state has a medical disciplinary board. That is unacceptable behavior and can be dealt with, especially if someone else has complained about the same issues. So, write a letter to the board and then find another physician. You want and deserve one that is compassionate and that will be an advocate for you. To have one that is just going through the motions will not help you to win a disability case. Unfortunately, sometimes we need to go a distance to get the proper treatment for specialists. I travel almost 2 hours to go to the University of Washington's pain management. My parents have driven me the last two times because it's difficult by myself. My rheumatologist is over an hour away. Try a couple of local physician's out. If you don't feel the rapport, then find another one. I have heard of people getting disability for severe depression and PTSD. You just need an advocate. They're out there. You just have to find him/her. I might suggest using the web and reviewing websites. See what the physician's speciality is. If they have a picture is always helpful in my opinion.

Good luck and hang in there......Gentle hugs..
 
So so sorry your getting the run around. To know your not alone I'll share my testimony.
A quick run through.
I was raised in a home FULL of dysfunction. A hug was on ly given if I performed.
By 12 yrs old my parents divorced , for me this was dramatic.
Oops hold on. At 6 months I almost drowned in the sink, at 5 yrs old I was rescued from the bottom of a pool.
At 17 someone tried to poisen
ME. Was recessatated twice after Flatt lining in the ambulance.
I got in a accident and tried wrapping my head around a tree, 56 stitches in my forehead to show for it.
From what I've been reading fibro can come from a traumatic event.
Oh wait....forgot to add I was molested from 5 to 16. So I would say that's pretty tramatic. NOW WHAT?
I DONT SHARE THIS FOR PITTY, JUST SO U KNOW....YOUR NOT ALONE.
AND you can and will survive e this.
 
I can't believe how they so called judges and the like cam get away with the things that they say.im afraid I'd say something back if I was shouted at.i dread the day I need to claim
 
Moe, from your other posts, I see you as the strong person you obviously are, but I have to say.....I can't help but say that I am so, so sorry you were treated the way you were and I hope you understand that none of what was done to you was your fault. Anyone would be traumatized by what you went through. And on top of it to not have love and hugs given just because is unconscionable to me. You not only grew up with disfunction, you grew up with neglect. Some people just shouldn't be parents. My parents grew up in dysfunction and neglect, but you know what? They have been married 62 years. They got married at 16 and 18 and decided they would make a better life for their children. It doesn't have to be that way. I always say I grew up in the Beaver Cleaver home (Did you ever see that show Leave it to Beaver?) I can be at wits end with my children but I still say "I love you ya little stinker"...and hug them. My son has said some horrific things this past year to me, none of which are true, but my heart has broken over it and when I see him (which isn't often), I still hug him and say "I love you". That one has been tough because he has hurt me so deeply and we were so close when he was growing up, but I know deep down it's this illness he can't deal with. Take care Moe. From all the posts I've read, you sound like an awesome person....
 
Moe, it sounds like we are one in the same as far as trauma. I've had so much bad stuff happen but the one that terrifies most to this day is, I don't know how to say it, but to me sounds less traumatic compared to the other things I've gone through, but it was the only time I guess my life was in danger, if I didn't escape I was dead. Because of this I never get a good nights sleep, I'm constantly checking and rechecking the doors, the windows, under the sink (where no one could possibly fit) but I fear every night someone is going to come in and kill me and my child. I think the lack of sleep does not help my health. I take medicine to help me sleep but the shear fear and panic always win. It's hard to function on 3 hours of sleep, and it's not 3 hours straight it's the 30 minutes I get here and there.

Since I live so remote and I am on government medi-cal I have very few choices for primary care in my area and there are no specialists that take medi-cal in the nearest town, I have to drive an hour away just for MRI's and other things like that. I have to do a Barium swallow soon cuz I choke on food and drink all the time. So when it comes to second opinions it's slim Pickens.

I had a neurosurgeon who wanted me to have back surgery awhile back but I am too afraid to have it done. I'm fearful that it will just get worse. I'm wondering if my pain doc is gonna push me to have it. It's also really inconvenient when I live at home alone with a 9 year old. My house is so small I wouldn't be able to use a walker to get around. I already bounce off the furniture and walls as it is.

One thing I've noticed and I wonder if it happens to other people is when I hit my arm on the car door or if I rest one leg on top of the other it causes extreme pain, more pain than what it should cause.
 
Jrasted, Have you considered counseling? I don't know what happened to you, but I do have a friend that her husband attempted to kill her. She lived with me for 1 1/2 years for a number of reasons. She also went through intense counseling. She couldn't shower without worrying someone would harm her (that's where he caught her at). It's been a few years now and she is doing much better. It will always affect her, but she lives on her own now and has a pit bull pup that she has had in training. She says she has thought about relocating to another area to get farther away, but hasn't done it yet.

As for your back and them wanting to do surgery, I would get a second opinion. I have heard good and bad stories from surgery. It scares me as well. I have had specialists talk about doing surgery on my neck, but I have resisted. If you have back surgery, it will be difficult and takes a while to heal. I'm assuming you don't have anyone close who could help you out.

Hang in there and continue to think positive thoughts. You sound like a very strong person.....Gentle hugs
 
Hi terbaer,

I go to a therapist once a week for about 3 years now. I used to see a psychiatrist once a month that I loved, the first one I ever trusted. He even pushed and told social security that am disabled through mental illness as well (Major Depressive Disorder, PTSD, and panic disorder) but I still got denied. But the only way I could see pain management was to switch the Medicaid plan I was on and the new plan won't cover my visits with my psychiatrist. I have to see this new guy, a total jerk, and he will only see me once every 3 months, and he asked me nothing about my symptoms. I have severe anxiety every day. It is torture sitting through class and they won't treat my anxiety because I take pain meds. I also get the anxiety bad at night so I never get good sleep, its either OCD checking and rechecking, anxiety, or pain and sometimes all three, I forgot what good sleep felt like. I wish I could just take like one class a semester but I count on the grant money to pay electric, and car insurance. I get 515$ from welfare and my rent is $460. My disability is in appeal right now, I already got denied from the administrative law judge, so now it goes to appeals court. When you apply for disability they send you to their doctors, I saw one for my physical disabilities and one for the mental stuff, THEIR doctor stated I could not work at all due to the depression and the judge said she wasn't crediable. We'll I look at this way, if she wasn't crediable for my case than her testimony should be discredited for all the other applicants she has seen. I really hope the appeals court either finds in my favor or at least send me back to a fair judge, the judge I saw yelled at me the whole time. I couldn't even answer questions I was crying so bad and my lawyers are crap but I am stuck with them now since they appealed on my behalf.
 
Jr,write a letter to you state rep. Let them know that you have been turned down. Put the letter you doctor sent to SS.

The state rep has the power to get you in.

I tell you this as my best friend and his 2 brothers use this to get in. If you have family members already in give names ad well. Good luck.
I can't get in cause my wife makes to much $$$$.
I kid you not. Law has been on the books since 1963. That's what SS told me.
 
Hi jrasted79,

Huge hugs! I was denied multiple times for disability but then a lawyer was able to help who knew the ins and outs of it. It took two years after hiring her to get qualified. Most people get turned down automatically for SSDI. It is so sad. The lawyer took her fee from my back pay from SSDI. They have to pay you from the date you are considered disabled. Mine went back three years.

Having kids is so hard hon and I completely understand you wanting to do more with her. When my boys were little, I just felt horrible I was not able to do more with them. Just taking a walk some days was hard. I think it is great you are teaching her to sew! That is awesome! I wish my mom had taken time to teach me those things. It helped me to focus on things I could do versus things I couldn't do with my kids.

I hope you get some help!
 
Jrasted, I pray it goes through for you this time. The good news is, if it does, it's retro to 5 months after you applied! A chunk of change would sure help, I'm sure. Be sure to include all of your ailments and get doctor's documentation, include fibro and all the tentacle ailments tied to it and CFS. My list was a page long. I got letters from my counselor, neurologist, gastro and general physician and if you have any new appointments that your ailments are discussed, get notes from those appointments and send them to them. I sent social security everything I could come up with, even my FMLA paperwork from my work (showed a pattern of time). I made contact with the lady on the SS letters. I was very fortunate. Although it took 6 months, I was approved the first time. I can't imagine surviving with no income for as long as some of you. The system is broken. One thing to be careful of is if you are able to take courses, that may be why they are deeming you not disabled. They should provide you with their reason for denial.

I too admire what you are doing with your daughter. I'm trying to come up with things I can do with mine, but I've had such severe fatigue, I'm barely functioning at all right now. I have probably 1 sometimes 2 good days in a week (if I'm lucky)

The best of luck to you.....Ter
 
I was worried about SS thinking if I could go to school full-time then I could work full-time but I submitted my grades, I failed 3 out of 4 classes two semesters ago. I also get accommodations through the disabled student program like being able to turn in assignments electronically if I have a flare up, extended test time, I can use notes for all classes, and a few other things. I also have to get progress reports from all teachers every semester and all of them say my attendance is crap. I turned in all of those documents. At my hearing the judge asked me about school. I brought up the accommodations and he asked if I had the paperwork with me. I told him that I was told you can't turn in anything the day of the hearing so I did not have it in me. I told him it was in the evidence he had in front of him but he just ignored me.
 
so did he say no SS? i would try to do my next semester all online classes. what did your lawyer do?
call your state rep or ceritified letter. most dont know they can get you in SS.

Im sorry your having to go through this. at least your trying.
 
Jrasted, my heart hurts for you. I wish there was something I could do to help you. From what you are describing, it sounds like you are doing what you can at this point. I pray that your claim goes through positively soon! Keep us posted?....Gentle hugs....
 
Status
Not open for further replies.
Back
Top