When Life Has Dealt You A Bad Hand

Dear friends and readers,

1/13 update: I have raised $1,050 out of the needed $1,200 to move into our new home

I am writing to announce that our 4-year nightmare of homelessness is about to come to an end. Thanks to the tremendous help and support of a friend, we have secured a rental home and will be moving next week.

I would not have survived these last four years if not for the tremendous financial and moral support of friend and stranger alike. There are no adequate words to express my gratitude for the loyalty many of you have demonstrated over and over again.

Many of the goals I had set a few weeks ago have been met. Thanks to you, we were able to save our belongings and re register my vehicle. Thanks to all of you and our new landlords, we were able to come up with the very modest security deposit on our new abode. Thanks to all of you, we are most of the way to moving in.

My final goal, which I’ve met partway today, is to raise the remaining $300 or so (minus fees) with which to move next week.

Won’t you please help me put this nightmare to an end?

I am looking forward never again to fundraise for these kinds of personal reasons and strictly limit my fundraisers to subscriptions for the blog.

Thank you for sticking with me,

Rima Regas

Update 1/4/19

Thanks to your collective generosity, I was able to meet a couple of very important goals.

I received a call last night from an old acquaintance whose friends are looking to rent out the lower portion of their home. This is the first time, in four years of being homeless, that an opportunity to be in permanent housing has presented itself.

I need to raise $3,500 to cover a modest deposit and purchase beds and a couch so we can move in. We had to abandon our furniture when we were evicted four years ago.

My nightmare may finally be over. Won't you please help? Many small donations and a couple of larger ones could well help me reach my goal this coming week.

Thank you,

Rima

Bitter Ends – A Cry For Help

These past three weeks have been the toughest yet. I was hit with three different problems and need your help.

1. After eighteen months of fighting the healthcare system to get surgery on my wrist, while successful, still ended in my inability to secure the funds with which to forego my stipend, get the surgery over with, and still keep a roof over our heads. I am not allowed to submit a work timesheet for the two week period after undergoing surgery. Our income doesn’t allow for the luxury of missing a paycheck. So, after all the appeals, hearings, and a lawsuit, I cannot go ahead with badly needed surgery.

2. I met with my endocrinology team three weeks ago. This is something I've been doing twice a year since 2009. I had Cushing’s Syndrome in 2007, due to a tumor called “adrenal adenoma” on my left adrenal gland. The tumor, which was quite large at 6.4 cm, was removed on Thanksgiving Day 2007, along with about half of the gland. Eighteen months later, the tumor had regrown and I underwent a second surgery to remove the rest of the gland. It was at that time that a new tumor was discovered on the right adrenal gland. That is what we’ve been tracking twice a year since 2009. On Wednesday, November 7, I was told that my right adrenal gland needs to be removed within the next six months because the longer I wait, the more chance I give it to turn cancerous. Once the right adrenal gland is taken out, I will become disabled with Addison’s Disease in the absence of any adrenal glands.

3. Then, as if fate hadn’t already been cruel enough, my partner in life and love is now in the process of being evaluated for early onset of dementia. While I've been noticing some changes over the last few years, I did not know whether he noticed as well and could not broach the subject until recently when he broke down crying after realizing that he is missing time and memories of things he used to readily recall. I cannot express the sadness I feel, nor the fear I share with him. This is a lot for one person to face when that person is in a relatively stable economic state. In our situation, homeless for the last four years, just one of these calamities would be more than I can handle.

I would not have survived without the tremendous emotional and financial support I’ve received from friends and complete strangers. I will neither survive nor will I be able to continue to fulfill my responsibilities without the security of stable housing. I cannot imagine going through with a life-changing operation without having an apartment to go to. There is no way, physically, that I will be able to continue living as we have, in hotels, take care of two disabled loved ones, and survive the stress. We’ve been living like this for the past four years and it has been exhausting.

Just to illustrate... Three weeks ago, we had to move out of the hotel we'd been staying in for almost the past year. With my husband working almost every waking hour to, first pay the rent on his car, then expenses, and then what income he gets to take home, I packed up our belongings alone and transferred what we couldn't fit into our car to our storage unit, then packed up our cars right before moving to a new hotel. It's been three weeks and I am still exhausted and in pain from the effort. After spending some time thinking and planning the near future, the only conclusion I come to is that we cannot overcome the things that come next without significant support from friends and strangers.

To that end, I have set two goals: one immediate and the other over the next three months, at most:

A. As my husband slows down in his ability to work for sustained periods of time and as my income covers most but not all of our hotel bill (due to variable rates), I need to raise $800 to provide a cushion in case his weekly earnings fall short.

B. We must get out of the vicious cycle of not having a home. I need to raise between $6,000-8,000 for a security deposit on an apartment. Paying rent on an apartment or condo will cost about $1,500 less than we are currently paying our hotel. This has been a huge burden over the last 4 years.

I will continue my daily updates on my “Things Trump Did” post. Hopefully, I will also be able to raise enough money to finally get my wrist operated on so I can keep writing on a more regular and frequent basis. It’s what keeps me sane. Your GoFundMe donations, one-time or recurring, are desperately needed in this time of crisis.

Thank you for your continued support.

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UPDATE: 8/12/2018 
23598660_1529875995634108_r.jpegThis is the inside left side of my wrist.
23598660_1529876050869602_r.jpegThis is about 1.5" from the wrist.

Update 8/15/2018

I fell and suffered some pretty terrible injuries over a year ago. I've needed surgery to repair severed and torn tendons that entire time and have been engaged in a fight against my insurer. I've gone through two rounds of arbitration with administrative law judges on my own and lost, when the insurer kept claiming that I wasn’t denied treatment and they were still sending me to see specialists. What they kept failing to mention is that the specialists they authorized me to see are not hand surgeons and, therefore, not qualified to perform surgery on my injuries. Thanks to the generous support of many readers, I was able to meet the deadline to file my case in Superior Court. I still need to raise sufficient funds to pay an expert witness and legal fees. I cannot do this without your help.

I've surpassed the halfway mark for my fundraising goal to end the hell that has been my year of living with severed wrist tendons . I have another $875 more to cover the cost of an expert witness and what remains of my legal bill.

These are the injuries I suffered over a year ago:
23598660_153410151851974_r.jpeg23598660_1534101530684768_r.jpegWon't you please help? Thank you for your ongoing support!

Update: 7/24/2018

My insurer is keeping my referral and authorization for surgery with the provider with the longest wait times (February 2019) and I am still desperately trying to raise funds with which I can either hire an attorney to challenge the administrative law judge's decision in superior court or, if I can somehow manage to raise enough, get the surgery done and pay for it at the cash price.

I continue to do as much as I can, given pain levels of 7-9, and use as many shortcuts as I can to get things done. Dictation on my phone helps. Having my daughter then transfer dictated text and formatting it is a great help. But day to day chores are exceedingly difficult to manage and come at a cost of knowing that the following few days will be a nightmare of pain. I typically wake up several times a night because, in spite of wearing a wrist brace, I either somehow manage to take it off in my sleep or my wrist joints crack, sending shooting pains through my hand and arm. It's been really hard to live this way for such a long time.

Your small donations of a few dollars help as much as the larger ones. Thank you.


UPDATE: 7/19/2018 - I was informed yesterday that if the judge's decision remains in force, the next available slot for surgery with the insurance-chosen provider will be in early February, even though I have one completely torn tendon and two that are severely damaged, along with leakage of bone marrow from two damaged bones in my wrist. It is imperative that I be able to hire an attorney to get this decision overturned in Superior Court. Thank you for your support.

Update: 7/10/2018

A former donor wrote to me to point out that I can hire an attorney on contingency. That is what I thought would be the case a few weeks ago when I began looking into things.

I found out that I actually need two attorneys. One to appear in Superior Court to overturn the administrative law judge's decision from last week. I just obtained proof that the insurance rep lied during the hearing about some steps they claimed to have taken to ensure I get immediate care locally. They, again, made an appointment with the same surgeon who does not do wrist surgeries, whose partner is unavailable. Lawyers don't take these cases on contingency. I've spoken with two lawyers and with my local legal aid office. Legal aid can't represent me. The other two lawyers will, if I can pay them for their time.

The other lawyer I would need to retain would be for a malpractice suit. So far, the four lawyers I've spoken with want money up front, just to get familiar with my case, before they even decide whether or not to take it. Things have changed a great deal. 

Update:  7/8/2018

Those who follow me know that when I fell and fractured my wrist a year and three months ago, I also tore some tendons. That last part went undiagnosed for several months. The first set of doctors I was referred to stopped accepting my insurance. The second doctor I saw ended up dismissing me from his practice after I demonstrated some, um, verbal anger over the phone after my long-awaited surgery was cancelled by his hospital because he overbooked patients that day, and upon learning that it would be another six weeks until surgery would be rescheduled.

Since then, my insurance has been playing a cat and mouse game with the referrals my primary care doctor has been requesting approvals for. The first referral, to UCI hospital, ended up taking almost three weeks, only to find out they were down one hand surgeon, and the other was about to leave the hospital altogether. In mid-May, they thought they’d be able to see me sometime in August. After my nurse case manager and I called all of the plan’s hand surgeons in the county, she suggested I ask my primary care doctor to refer me to a hospital out of county. That referral was denied and then modified by the plan to a doctor the nurse and I had already called. They had no availability until August. No matter, the insurance was magically able to determine that a certain doctor there could see me immediately. So, I went… and found out he isn’t a hand surgeon, and that his partner who is, isn’t available over the next two months.

I appeal the plan’s decision, lose the appeal for an expedited decision. I then filed for an expedited state fair hearing with an administrative law judge. Expedited hearing was granted. I had my hearing last Monday.

During the hearing, the insurance representative said my referral was changed from the doctor who ended up not being a hand surgeon, to UCI hospital. I’d made sure to call UCI before the hearing, to ask when their first available appointment was for a consultation, and then surgery. The dates they had then were October 24th. I didn’t find out until after the hearing was over that they’re scheduling surgeries in late December, with few spots left. I informed the judge that I called UCI before the hearing and told him what the availability was.

During the hearing, the insurance plan’s representative, during the final minutes of the telephone call and as the judge was giving us a preliminary decision, stated that she was handed a note that the surgeon who was away is available on July 27th. When the judge asked me if I was OK with waiting until the end of July, I said no, I am in too much pain to even imaging waiting at least another month to repair 1-2 severed tendons and a torn one that is hanging by a thread.

After the telephone hearing, I called my nurse case manager with the insurance plan and told her what the legal representative had said about my referral having been switched, again, to UCI. When she looked at my case file, she could find no such change. When I told her that in the last minutes of the hearing the representative said the hand surgeon at the other practice was available, the nurse looked at my file and could find no notations as to that finding, or any attempts to secure an appointment for that day. She tried, but couldn’t verify that that doctor is indeed available at all. Nothing in the insurance plan’s system has changed. It seems I am now in some sort of limbo.

My husband just called me from the post office where we have a P.O.Box. The decision was in the mail. I lost. At this point, I have the right to file for an appeal in superior court. But for that, I need an attorney to represent me.

These last four years have been the hardest my family and I have ever had. We’ve been coping with homelessness, caring for a disabled love one with considerable needs, and the realities of life as members of the precariat. While we haven’t been sleeping in river bed tents, we’ve been living in long-term hotels, it has taken every ounce of energy, the kindness, generosity of many strangers, and all of the meager income we earn, to keep us from living out of our car.

I used to be able to write three long-reads a week. I’ve not done that in over a year. The pain is just too much.

Why this blog post? I am writing it to ask for your collective help yet again. If I am going to avail myself of my right to appeal in superior court, then I might as well also initiate a malpractice lawsuit. My condition should have been diagnosed within the first couple of months. It wasn’t. Now, the delays and a cruel system in the eyes of which it is perfectly OK to keep shuffling me, as long as it isn’t out of county, even if care is immediately available there.

I know these are hard times and many of my regular readers have helped many times over the past four years. There are no words to express the depth of gratitude in my heart. Please forgive me for asking for more…


Rima
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I fell and fractured my wrist on April 24, 2017. The pictures above show what my wrist looks like today. I was referred to my first set of hand surgeons within days. A cast was put on my hand for a month. In June, when I kept complaining about severe pain, I was sent for an MRI. While I got to do the MRI, I was unable to go back to the hand surgeon because they dropped my insurance. Other than putting my arm in a cast, removing it, and ordering an MRI that was never discussed with me, they offered nothing. I eventually got the brace at a drugstore to see if it would alleviate my agony. 

A month later, in July 2017, I was assigned to a second hand surgeon. He too sent me to have an MRI. That MRI report said I have cysts in my wrist and nothing else. When I protested at a follow up appointment, the second surgeon wrote in his chart notes that he would send me for a more specialized MRI study, but he didn’t put a referral in. At a follow up appointment in late August, the surgeon offered surgery on my wrist “if I wanted.” 

Fast forward to late winter, I underwent all of the pre-operative testing I was required to do. I saw surgeon #2 again in February and in March and in April, was sent to do that specialized MRI. The report reveals that there was damage to the bones and some leaked marrow. It also revealed that three tendons were torn, one completely severed. Surgery was scheduled for May 9th. 

Early in the morning of May 9th, I received a call from the hospital and was notified that my surgery was cancelled because the surgeon had booked too many patients for surgeries that went over their time allotments. In the year that passed, in spite of complaints at every visit, no one looked at my shoulders, which have also been a big source of pain since my fall. 

I finally saw a shoulder specialist on June 5. That doctor wrote in his chart notes that I need surgery to repair the rotator cuffs on both shoulders, even before I was sent to do an MRI and solely on the basis of an x-ray! 

There were other errors in the chart notes and when I asked for a couple of corrections, all mention of the need for surgery on my shoulders disappeared. The shoulder surgeon doesn’t do wrist surgeries and his partner in the practice, who does specialize in them, is unavailable for the next two months. 

At this point, I have no hand surgeon because surgeon #2 dismissed me from his practice after I reacted angrily to the cancellation and subsequent offer of a new surgery dated one and a half months later. I have been in agonizing pain for over a year now, with no way to get my hand repaired.

As my daughter’s caregiver, I am duty-bound to continue to do all of the things she needs. All of them require fine motor use and I’ve been forcing myself, through all of this pain, to maintain her care as I always have. My request for an urgent appeal to a denial of a new referral to an out of county hospital that is able to accommodate me in a timely manner, was denied two days weeks ago. 

I immediately filed for a hearing to force my insurance company to authorize my referral to the out of county facility. In reviewing all of my medical records, it is clear what has happened to me is a combination of neglect, incompetence, and greed. When I began questioning my treatment, I attempted to reach out to all three radiologists who performed MRI studies on my wrist. I was told patients are not allowed to speak with radiology doctors. They will need to be subpoenaed for the hearing. 

I am therefore seeking to raise sufficient funds to hire an attorney to represent me at Fair Hearing for the purpose of forcing my insurance company to allow me to have surgery at a hospital in Los Angeles, since there are no hand surgeons in Orange County who can provide the service any sooner than September or October. I cannot do this without your financial support. 

I received a letter of acknowledgement for my Fair Hearing yesterday. When I called because there were materials missing from the packet they sent, I was told I would receive a call with a trial date early next week. I desperately need to raise sufficient funds to pay an attorney. 

We are still homeless and living in a hotel. Almost all of our income goes to keeping that roof over our heads and paying for my husband’s ridesharing expenses. If you are in any position to help, please do so. 

Thanking you for your generous support, 

Rima


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6/15/2018

I fell and fractured my wrist on April 24, 2017.

I was referred to my first set of hand surgeons within days. A cast was put on my hand for a month. In June, when I kept complaining about severe pain, I was sent for an MRI. While I got to do the MRI, I was unable to go back to the hand surgeon because they dropped my insurance.

A month later, in July 2017, I was assigned to a second hand surgeon. He too sent me to have an MRI. That MRI report said I have cysts in my wrist and nothing else. When I protested at a follow up appointment, the second surgeon wrote in his chart notes that he would send me for a more specialized MRI study, but he didn’t put a referral in. At a follow up appointment in late August, the surgeon offered surgery on my wrist “if I wanted.”

Fast forward to late winter, I underwent all of the pre-operative testing I was required to do. I saw surgeon #2 again in February and in March and in April, was sent to do that specialized MRI. The report reveals that there was damage to the bones and some leaked marrow. It also revealed that three tendons were torn, one completely severed. Surgery was scheduled for May 9th.

Early in the morning of May 9th, I received a call from the hospital and was notified that my surgery was cancelled because the surgeon had booked too many patients for surgeries that went over their time allotments.

In the year that passed, in spite of complaints at every visit, no one looked at my shoulders, which have also been a big source of pain since my fall. I finally saw a shoulder specialist on June 5. That doctor wrote in his chart notes that I need surgery to repair the rotator cuffs on both shoulders, even before I was sent to do an MRI and solely on the basis of an x-ray! There were other errors in the chart notes and when I asked for a couple of corrections, all mention of the need for surgery on my shoulders disappeared. The shoulder surgeon doesn’t do wrist surgeries and his partner in the practice, who does specialize in them, is unavailable for the next two months.

At this point, I have no hand surgeon because surgeon #2 dismissed me from his practice after I reacted angrily to the cancellation and subsequent offer of a new surgery dated one and a half months later.

My request for an urgent appeal to a denial of a new referral to an out of county hospital that is able to accommodate me in a timely manner, was denied two days ago. I just now filed for a hearing to force my insurance company to authorize my referral to the out of county facility.

In reviewing all of my medical records, it is clear what has happened to me is a combination of neglect, incompetence, and greed.

I am seeking to raise sufficient funds to hire an attorney and pay one expert witness. Your contributions are deeply appreciated.

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I was hit twice with a tumor on my right adrenal gland that led to Cushing's Syndrome in 2007 and again, in 2009.I have been facing another adrenal tumor on the right side over the last few years. This will be my final bout with Cushing's Syndrome leading to its opposite, Addison's Disease. As I prepare for life with a disability, I need your collective support.

I have been busy going to my yearly endocrine appointments these last few months. While there is one piece of good news, my diabetes has gone from full-on, back to pre-diabetic, I was hit with some bad news and I have started a separate GoFundMe as a result.

My adrenal adenoma (a non-cancerous but hormone-secreting tumor) has grown to .5 centimeters. When it was discovered in 2012, it was .10 centimeters. This is my third and final bout with Cushing's Syndrome. The first two were with adrenal adenomas on my left adrenal gland, which was removed in two surgeries, in 2007 and then again in 2012 after it regrew.

Adrenal adenomas can be removed laparascopically when they are less than 6.8 cm in size. At the current rate of growth, my surgeon and I estimate I probably have no more than three one, maybe two years before the current adenoma will have to be removed. At that point, I will have the opposite of Cushing's Syndrome, or Addison's Disease, as I will no longer have a functioning adrenal system. I will become dependent on synthetic steroids and other medications and will become disabled.

I am turning to you for financial support with the goal of achieving what my previous GoFundMe effort never achieved. My family is still without a permanent housing solution. In spite of our best efforts, we were unable to raise sufficient funds all at once to get out of the rut we are still in. The tremendous outpouring of support we received was used, over time, to close the gap between our meager income and the high cost of living in a hotel.

Our living situation remains unchanged. We are still living in hotels, unable to rent an apartment. We would like, with this fundraising effort, to raise enough money to move into some kind of permanent housing, whether it be an RV, mobile home, or anything else that will provide us with the stability we need.

I will continue to write on my blog for as long as I can. Separately, I will continue to try and raise funds, via subscriptions and one-time donations, to hire other writers and turn the blog into a magazine.

From experience in between bouts of Cushing's and Addison's like symptoms, I know how devastatingly hard either disease is. I came through the first two and will do everything I can to cope with what comes next, with the support of my little family and my circle of friends and readers.

Please click here to be taken to the GoFundMe website.

Thanking you for your continued support,

Rima Regas

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Rima Regas 
Organizer
Anaheim, CA
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