A Kick In The Face

The Eagle (Social Security) delivers a kick in the face to the hapless canine (me).

Warning: there will be foul words in this post. I don’t use them often, but this is just the final straw. Venting ahead…

As you, my friends, know, this Summer has been hell.

Things got even “hotter” yesterday with the delivery of a letter from social security – and it wasn’t the kind of letter I had been hoping for.

The craziness started in May, when my Mom moved to Houston, I subluxated my shoulder & tore it even worse, was diagnosed with adrenal exhaustion, and re-visited Tick-Borne Disease treatment with my LLMD.

Then Rhiannon’s father become very ill and passed away, and we headed to Ohio, where he lived. My body has been precariously teetering ever since. There have been issues with the will, and her father’s estate, I have to deal with.

Stress on top of stress.

My shoulder has continued down its path of self-destruction, subluxating at will, catching & tearing more, making it more & more painful. I have no choice but to have surgery now.

I have to get appointments with an orthopedic surgeon and for a repeat shoulder MRI, and would if this migraine would just let up for a little while, and the crap stop falling on my head.

That’s why I’ve been writing less & less.
It hurts. A lot.

My weight continues to drop.
My doctors are very concerned by the muscle wasting (as am I). They have done countless labs, turned up a few abnormalities, but nothing to really explain it.

My LLMD thinks it might be TBD, likely Bartonella, but she thinks I’m too weak to do IV antibiotics, and might need IV nutrition first, because of malabsorption.

Both my docs want me to get an MRI/MRCP of my abdomen/liver/pancreas, plus a transvaginal ultrasound.

They are very clear about what they are looking for. Mostly, cancer. And, a reason as to why I’m not absorbing what I eat, and why I’m having “dysfunctional uterine bleeding” (I’m getting my period every 2 weeks, and with it a 5 or 6 day hormonal migraine from hell).

As I was getting a grip on all this, suddenly, my own father became very ill and passed away. This triggered a flood of memories of growing up, deep grief, sadness, and mourning.

My body reacted badly to the stress of that.

I’ve spent all week very weak, very shaky, having adrenal dumps & in hormonal migraine.

Just when I thought that there surely couldn’t be any more shit left to be dumped on me, that we had to be due a break…

I got a letter yesterday from social security.

I had appealed my social security disability application to the highest level, the appeals council. This has been going on for FOUR years.

There is mounds of evidence.
Thousands of pages of records.
Multiple letters from three different doctors.
And one very frank, very honest, heartbreaking letter from my youngest daughter, Rhiannon.

Despite all that, they turned me down. Again.

They didn’t even review it, standing by the administrative law judge’s decision.

According to my understanding, the judge broke the rules, because there’s a special rule for people with ME/CFS. I even pointed it out to him at the start of the hearing, and put that in my appeal.

I tried to get an attorney. You have to get a really good attorney. There’s lots of lawyers out there saying they do disability, but ME/CFS is not in SS’s blue book, so you can’t just have anyone. It has to be someone really good.

When I first applied, I was forced to have the application done by an organization that “specializes” in helping people get disability, because we were, and still are, receiving food stamps & TANF. They totally fucked up the application.

So I went to the attorney after my first two denials, and she pulled my file, read through it, but said she couldn’t take the case, because it was a mess, and she wouldnt get paid if she didn’t win, and she didn’t think she could win. She used to work for social security. She knows how they operate.

So I did the hearing & appeal myself. Was denied. Again and again.

Now I have 2 choices.

1. Appeal their decision, which means take them to Court – real, true, court. Civil court, the kind before a real judge, not one employed by social security. Sue the assholes. I would assume that would take a year or two.

Or,

2. File again & start from scratch, except since they have my medical records already it won’t really be from scratch. Instead of having my start date for disability be 1/2007 it will be 3/2011.

It means filling in a new application, which is about 40 pages long, if not more, but it can now be done online. I’ve spent much of today wandering through the social security website.

The kicker here is that they have dragged the process out so long that our TANF and, most importantly, my Medicaid, are about to run out, when Rhiannon turns 18 in December. My prescriptions and monthly doctor visits are at least $2,000 to $3,000 a month.

I cannot be without health coverage.

If it’s not going to be the SSDI Medicare I had hoped for, then it’s going to have to be SSI, and if I understand this correctly, the state will give me Medicaid until I get Medicare next March, and pay the co-pays, Medicare Part D, etc, after the Medicare kicks in.

Assuming I get approved.

I have a feeling I will, though. Not only am I a lot sicker, with this very dramatic weight loss (they apparently like shit like this), but I have a lot more documentation now than when this whole damned mess started, the forms will be filled in correctly, and I know a little known secret…

…Social Security has a rule whereby if you make a declaration that you are in “dire need” of approval immediately, for financial or medical reasons, they are required to move your application to the top of the stack.

It doesn’t get much more dire than this, folks. We’d have been out on the street years ago were it not for the generosity of my mother, and if I don’t get health care coverage lined up by December 1st it’s going to be very ugly.

So I will be very, very busy, in the coming days (or weeks), filling in the damned forms and marshalling the paperwork and re-reading the social security website.

Assuming my head doesn’t explode first. It really feels like it’s about to…

Thanks for listening…
~Ash

Guest Post: Rhiannon Tells It Like It Is – to the SSDI Appeals Council

Today I want to share something very special with you – a letter my daughter, Rhiannon, wrote to the Social Security Disability Appeals Council, about growing up with a sick mom, and the changes over the last couple of years. She has quite the voice, my daughter.

by Rhiannon

To whom it may concern:

I am Rhiannon ******, the daughter of Kelly Collins (edit: otherwise known as Ash). My mother has been chronically ill my entire life. This is not an illness that can be understood unless you are in the midst of it all, unless you’re the one suffering or watching your loved one suffering. I am both. What must be understood is that all of the things that combine to create my mother’s illness are not things that can be recovered from. This is not the flu, one does not feel awful then fully recover. This is a lifelong degenerative illness.

How has your health changed over the last two years? If you’re a healthy person, it likely has not changed much. How has my mother’s health changed? Tremendously. She is not better, despite trying new medications and treatments. Her health has continued to decline, as is typical of this illness.

I have been living full time with my mother for the last six years. I have seen her go through everything. I have seen her almost die. Despite being young, I bear the weight of the household. Keeping up with household duties is solely my job. I am my mother’s sole caregiver. She does not take care of me, I take care of her. My mother is there for me emotionally, she is a great mother and does her best. But since the age of eleven, I have been my own caregiver and hers.

Most parents cook dinner for themselves or their children every night. My mother has not cooked dinner in years. I cook dinner for her. If it wasn’t for my efforts she likely wouldn’t eat. Frequently before I go to bed I cook something, like baked chicken and homemade mashed potatoes. I do this so that she has something to eat when she wakes up. So she has a nutritional lunch to keep her going. I do this because I love her. What if you suddenly lost forty pounds? Would that be alarming? Yes, yes in fact it would be very scary. This is what has happened to my mother. She has had an extreme weight loss recently. She barely eats because she is so nauseated all the time and has no appetite, and I do my best to insure that she has things to eat, to prevent her from starving to death.

Try imagine being in my place. When you were eleven do you think you could have handled everything I have been doing? I didn’t think so. This is not a mental illness. This is a brutal physical condition. There is no miracle cure. There are only pills to treat the physical symptoms. If a loved one of yours was suffering this much, don’t you think you’d want to do everything you could?

Reflect on something for me briefly. Can you remember the worst headache you have ever had in your entire life? The intense pain, the strong instinct to curl up in a ball and rest, sound familiar? Now imagine that intense sharp pain combined with other factors. Perhaps your pet runs gleefully down the hall. It doesn’t seem like the sound of their claws on the floor would be much of a sound at all.

However, if you suffer from migraines, it might as well be an explosion. Sound sensitivity is very common in chronic migraine sufferers like my mom. That, combined with light sensitivity, makes daily life a struggle. Most people like to sit in the sun, watch it filter through the trees. My mother is one of those people, she loves nature. However, when the migraines hit, she can not even enjoy that simple pleasure. She has to hole up in her dark bedroom, away from any light and sound. These are not rare occurrences, they happen daily. Does this sound like a person that has much of a quality of life?

Most people leave their homes on a daily basis. How often do we leave home? Weekly, if I’m lucky. It’s not uncommon for us to be almost entirely out of food before my mother feels up to going to town for a rushed grocery trip and to pick up things from the pharmacy. This isn’t because she’s lazy or doesn’t care, it’s because she is so bedbound that driving twenty minutes into town is a huge endeavor. We can’t go if it’s raining, because the wipers and lights will trigger her migraine to become worse. We have to time our trips so that the sun is not so low that it will be in her face, because of her light sensitivity. Once we are there, she waits in the car while I do the grocery shopping. Right now I have only my learner’s permit, so she has to be the one to drive. As soon I have my driver’s license and at least that will be a little easier on us.

If you were in this position do you think you could have kept going? Do you think you’d be sad and frustrated at your situation? My mother is the most emotionally strong person I have ever known. She keeps going, no matter what. Is she frustrated at our situation? Yes, as am I. It would be unreal to expect that someone with a chronic illness this devastating wouldn’t be.

After all that my mother has been through, I think the very least she deserves is to have at least one weight lifted off her shoulders. Stress only makes any condition worse. I know this all too well first hand. If we didn’t have to worry about money so much, if I didn’t have to count pennies at the grocery store, if she didn’t have to worry that we might not be able to keep our house, it would be the greatest gift. We have enough on our plates, we don’t need the continued worry of having to fight tooth and nail for what she deserves.

Sincerely,

Rhiannon ******

June 6th: Day of Visibility!

Today is the annual International Day of Visibility for people living with “invisible illness.”

Today is our day to be visible. To share our stories and help people understand, that just because you don’t look sick, it doesn’t mean you aren’t.

It’s something I think about every time we go to town or do any shopping, as I pull into a handicapped parking place. I’ve had handicapped tags on my car for over ten years now.

As I get out of the car, and walk to the store, I’m always very aware that there are people who watch those who park in handicap spots, and who are judging all the time. If you aren’t bent over with age, using a walker or wheelchair, in a cast or on crutches or have some outward sign that you deserve to be parking up front in the handicap spots, there are people who are going to get mad, or who at least are going to say to themselves or companions, “Well, she doesn’t look very handicapped to me!”

What they don’t know or understand: that I’m only there because I took a huge load of meds to get me there; that I’m not limping in pain because I took a load of very strong pain meds before we left home; that every extra step I take is expending energy that I don’t have, and will make me miserable for days to come.

What they don’t understand is the cost in suffering and pain of every outing. I wrote about this in my post, The Aftermath.

No matter how I may look on the outside, you have  no idea what is going on inside.

There are many “invisible illnesses.” Fibromyalgia, CFS, and Lyme, are just a few.

Even cancer can be an invisible illness – one friend told me of the tellers at her local bank telling her how great she looked just because she had lost weight. She had lost so much weight because she was battling cancer.

Once, when I was at social services discussing my being disabled with them, one of the ladies said to me that it was hard to believe someone was too disabled to work when she saw them putting a gallon of milk in their cart at the grocery store, despite having a doctor’s statement that they shouldn’t lift more than five pounds. She wasn’t talking about me, but the point was well made. I can’t lift more than ten pounds repeatedly, which is what the form is really asking – can a person do it in a work setting. But can I put a gallon of milk in the cart? Yes. Does it hurt my back to do it? Yes. Can you tell? No.

Her comment made me paranoid about getting groceries for a long time.

Just because you can’t see it, it doesn’t mean it isn’t there, or it isn’t very, very real.

Just because you can’t see the pain in a person’s eyes, doesn’t mean they don’t feel it, and they may feel it for days afterward.

Invisible illnesses can affect anyone you ever see. You can never know what someone has going on inside. We get really good at hiding it. We don’t want to look sick, or act sick. We do more than we should quite often, and we pay for it for days afterward, but you won’t see that.

So be kind. Don’t judge. Help people reach things in the grocery store. Offer to lift their bags into their cars for them if you have the luck to be healthy and strong.

Because you just never know. Tomorrow it could be you who has an invisible illness, who needs help.

You never know.