Follow
Share

Intractable Pain diagnosis -- My sister is an Ohio teacher who increasingly cannot commute or work. She’s been diagnosed with Intractable Pain, Rheumatoid Arthritis, Degenerative Disc Disease, Scoliosis, Ruptured Disc, Asthma, long-term depression, PTSD, anxiety (and more).

Her Primary doctor and Rheumatologist could not work her in during a long flare (week-long, pain level frequently 10 with micro-movements, no sleep). She is breaking down mentally (lives alone, 17-year -held job is 35 miles away one way).

On Sept. 8, I had to forcefully coach her to get to ER. ER admitted her to hospital under 24-hour observation status. ER did cranial, abdominal and pelvic CT scans, apparently useless. Her Morphine / Opiod drips increased pain to insane-screaming level. ER changed pain medications to include Percoset with other unknown pain meds, including a patch, which calmed pain to 7 level. She was discharged in the evening Sept. 9 with ER diagnosis of Intractable Pain and Morphine Intolerance. Discharge instructions are to return to work Sept. 14 but to see her Primary within 48 hours. Primary can’t work her in until Sept. 13. Her insurance covers the Percoset but not the other pain meds. She had to drive herself home in spite of warnings not to drive (hospital social worker could not help). She refused to let me call a taxi. She said driving was a fright and doesn’t remember getting home. She’s terrified.

She’s still not sleeping, reports pain level of 10 when she moves, she can’t lie down or move without excruciating pain. Her scoliosis image shows a severe lumbar bend rather than a curve. Her RA doc this past summer surmised “maybe you have broken your back.” She had a ruptured disc 9 years ago. She has thoughts of suicide and wishing to die. Also she has extremely low self esteem, and can’t seem to advocate for herself. I live 150 miles away, caring also for my husband and father. I’m not sure I can take on another custodianship. I’m not thinking too clearly, either. Her county’s aging services start at age 60, she’s only 58. Advice anyone?

This question has been closed for answers. Ask a New Question.
Find Care & Housing
She needs to go on a disability pension, apply for Medicare and YES the county will help both the aging and the disabled. They probably said NO because she is only on sick leave. Get her on full disability.
Helpful Answer (4)
Report

Oh, sorry, but forgot to tell you she is off work for AT LEAST two more weeks, probably enough time to see if Pain Management helps. There may be spinal injections.
Helpful Answer (1)
Report

Today, my sister hadn't taken her pain meds because she had to drive herself to her Primary doctor. The Primary was quite alarmed because her vitals were all over the place, and she was in incredible pain. She called in two more docs. Upshot, is that she has 30 more days of multiple pain meds, the three docs got her into Cleveland Clinic's Pain Management Program next week (instead of 26th), and they are triaging to get her home care, an OT, and into a new Rheumatoid Arthritis specialist as well as a neurosurgeon. She is wiped out (didn't get home til 6 p.m. from her 11 a.m. appointment), but was allowed to take multiple pain meds so she has zonked out, finally. Will keep you posted. Thank you all so much for your support. When I read your comments, she sheds a tear and says, "I didn't know there were people like that out there." Take care all of you, too.
Helpful Answer (1)
Report

There is nothing more I can add to the wonderful advice you've received here, but I am SO familiar with "tax writeoff for his extremely successful financial planning business ... He has hidden his income well". I'm divorced and live on a minimum income, while my ex has inheritances from various relatives that he never saw and is rich as Croesus. But as you say and I repeat, he's hidden his income well. Both your sis's and my exes are jerks.

How can her son, in good conscience, blame her for her health??? FAUGH!!!
Helpful Answer (2)
Report

You all made made my past few days. Update later Sept. 12. Employee Assistance Program (EAP) is useless except perhaps for "retirement planning." Trying to suggest to Sister that taking even $500-$1000 loss in retirement income might be worth it if she lives, and lives with some sense of sanity. So EAP is nice for many "Wellness" type of issues, but not for acute conditions or chronic pain. Her Primary followup is tomorrow (Sept. 13) afternoon. She says she's at a "5" pain level if she sits with legs splayed out on a weird chair setup she's done with pillows. When she moves (i.e., to bathroom or kitchen), her pain flares to 7-10, depending on how she moves. Her immature 30-year-old hugely tatooed, muscle competition, personal trainer son came home for weekend, sweet at first (made her ice packs), but reverted to abusive blaming her for her condition before departing to his father's (Sis's ex) father's birthday bash -- a tax writeoff for his extremely successful financial planning business that Sis helped build. He has hidden his income well, so there is no claiming "Divorced Spousal Status" from Social Security. I'm going to help her purshe retirement options, but right now, it's just acute care. She's been really patient and I am on edge waiting for Cleveland Clinic's Primary Doc response to the hospitalization and days in huge pain. She told me today that because she has hardly ever taken a sick day in 20+ years, she has 190 days of sick leave (more than a one-year teaching contract). However, that 190 goes toward her ultimate pension. But at least she can keep reporting pain, and hopefully tomorrow's doc appointment will corroborate that she can't work. She is also being referred to a Pain Management practice, which first appointment (earliest possible) is Sept. 26. I tried to intervene to get her an earlier date, answer "No way." Tomorrow, will check into county disability services. Going to 95-year-old Dad's Thursday through Saturday (he was just released after a heart attack and we are the luckiest family on earth to have a devoted caregiver from Heaven. Though I may be more Deistic than Biblical, I am humbled hugely by Catholic and Buddhist teachings. You folks are all exemplifying the best of .... whatever you devoutly believe in that has saved our sanity! Thank you. I will keep you posted.
Helpful Answer (2)
Report

50s child, i hope you get some assistance with this. Please let us know how this is working out.

Are you in touch with your local elected officials? Victims compensation fund?
Helpful Answer (1)
Report

58 Is way too early to give up, giving up is not an option at any age, but she has been working during these challenges! Both of you are an amazing inspiration!

50sChild, Just the fact that you are on the phone with her, staying in contact counts so much in her world, I am sure. Hoping she follows through on the appointments, maybe see a pain management specialist. The medical field in general throws patients under the bus when pain medication is suspected of overuse-damned if you do, damned if you don't sort of thing. See if the pain specialist agrees with the E.R. diagnosis. I do hope she gets the treatment she needs to function at her job. In agreement for disability and a later return to work date. Would she benefit from physical therapy? Ever tried it?
I hope they don't give up on her either. Second opinion?
Helpful Answer (1)
Report

Your thanks and thoughtfulness are truly appreciated. It's not often that someone is so grateful. So it's heartwarming to have spent time to try to help.

I hope your days and weeks are better as you implement some of the suggestions. You and your sister have a lot to face; my heartfelt thoughts are with you.
Helpful Answer (4)
Report

Thank you so much you three for what you have provided. My sister's PTSD was from a violent kidnapping and rape while she was babysitting at 14 years old. Her spine was deformed congenitally, but nobody knew. She has had mental problems, but troopered on because she had two kids and that's what you do. Probably antidepressants and anti-anxiety for 20+ years. I am so outraged. This is Cleveland Clinic folks. I am following each piece of advice. The most promising so far (on Sunday, Sept. 11), is her school district belongs to a tri-county Employee Assistance Subcontractor, which we will call tomorrow morning. Your responses made us feel we live in a sane, America-kinda-world. Thank you beyond our ability to express what your thoughtful and timely responses have meant to us.
Helpful Answer (3)
Report

I felt overwhelmed just reading about your sister's medical conditions; she must be in agony. I can understand why she's depressed.

I support Babalou's and CM's advice. The only other things I can think of are:

1. If she's still working, and I'm not sure she can, find a paratransit or similar type transportation for her. The local public transit agencies might have the paratransit transit options. This would at least eliminate the trauma and danger of driving.

2. Ask her to sign HIPAA releases (even if you have to prepare them yourself, have her sign in front of a nonrelated witness), so you can speak with the doctors. I'm troubled that the RA doctor surmised she might have a broken back. Was that followed up? You could make calls to help and coordinate these kinds of issues to insure that she's getting more care.

3. I can't help the feeling that someone someplace isn't following through or that her care isn't being coordinated. Do either her employer or the teacher's union have care coordinators, such as a pre-geriatric coordinator?

4. Was any in-home care, either nursing and/or PT/OT ordered? If not, I would think it advisable. If you get HIPAA authority, I would ask one of her doctors about this, as well as about some 24/7 in-home care. That might also be a question for either her employer's HR department or the teacher's union.

5. How is the ruptured disc being treated, or isn't it?

6. Is she a veteran? What's the source of the PTSD?

7. It might be time for her to discuss medical employment and disability with her employer, and apply for disability and stay home.

I feel for you and your sister and wish I could think of something really helpful. She must be in agony.
Helpful Answer (4)
Report

Or her union, if she's a member of a union?

If it's any consolation, you are doing something for your sister by being the person she can unload to, and that's not nothing. But it seems ridiculous that the social worker wasn't more help. Aging services may not kick in yet, but what about disability? Surely there is some kind of support network?
Helpful Answer (3)
Report

Is there a pain management doctor near where she lives?

This sounds terrifying and heartbreaking. I would not try to "take over" her care, but you should see if her employer has an "employee assistance program" which might be able to provide some case management services.

A pain management doctor likely has some more medication "tricks" up his/her sleeve. I'm told that some antidepressant meds are good in an ancillary way for pain relief, so don't let her discount that idea if the recommendation is made for her to take them, or to see a psychiatrist. There IS a mind/body connection.
Helpful Answer (5)
Report

This question has been closed for answers. Ask a New Question.