Fill up

I’m in much better spirits after a great holiday with my family. I had a really good Christmas. One of the best in years. All of my sibling made it, which hasn’t happened in many a moon.

I’ve started taking Lyrica and am shocked by how well I’ve slept the past couple of nights. It’s a drastic difference. I’ve been taking Ambien to try and help but it just wasnt cutting it. I havent had such a solid nights sleep in a very long time.

I’m working on getting my Humira through a assistance program.

But I’m still stuck on the custom orthopedic insoles. I’ve tried several kinds off the shelf, and several months ago I bought an expensive pair of shoes but nothing has cut it. I really don’t know what to do about it.

My last post was just me at a very low point. I’m sure everyone reading this understands how difficult it is to always be fighting. Sometimes it just feels like the whole world is trying to bring you down. Insurance companies, pharmacies, and your own body. Sometimes I feel like I just can’t take another blow and I dont want to fight anymore. I get tired of struggling just to have enough to eat every month. Let alone come up with seven hundred dollars for something  to stop the pain.

But my happy tank is pretty full now after seeing my family. It’s a bit cheesy and the cynic in me usually balks at such sentimentality, but I enjoyed myself anyway.

I hope everyone else had a great holiday!

Denied

I’m so bitter about health care right now. I’m so bitter that my worth as a human being and the amount of treatment available to me is based on the amount of paper in my wallet.

My feet are really bad because of the years my legs were messed up. Now I can’t stand more than a few minutes without a large of pain. Just like before the surgery.

They want seven hundred dollars for custom foot inserts. Nothing else has worked and my insurance wont cover it.

I started a new medicine called Rituxin. I havent seen any improvement. My doctor wants me to try a combination of Rituxin and Humira but my insurance wont cover it. What if my hands go like the rest of my body? They hurt so bad all the time. I find myself just staring at my swollen fingers. Terrified that they’re going to be irreparable like my knees and hips and elbows. Every day I just imagine the amount of cartilage that was destroyed that day.

On top of that, my right knee is already grinding down after only 6 months because of the position of my hips and knee. I will probably have to have it repaired. But my surgeon is in no hurry to do it. He wants to exhaust all other options. At this point I don’t see myself being able to go to school next semester.

Oh, and I was diagnosed with Fibromyalgia. She pressed several points on my body and they were so tender I yelped.  My body hurts all over to the touch.

I feel like I’m falling apart. I’m so frustrated right now. I’m so disgusted with this country’s health care system. How can anyone be proud to live in a country that lets a 20-year-old woman suffer from a disease with no medical treatment until she has suffered so much irreversible damage that she will feel the effects for the rest of her life? How can this still be happening?

I want to give up. I’m so tired. I’m so unbelievably tired of all of this. And I feel so powerless.

Reflections IV

So I have this voice in the back of my mind whispering that the worst is almost over.

But if four years of battling rheumatoid arthritis has taught me anything it’s that I shouldn’t let my hopes get too high too quickly. Isn’t that a terrible way to view the world? I know it is. But it’s just more practical.

I’m generally an optimistic person, but four years of perpetual disappointments can change anyones point of view.

Since all of this mess has started I’ve always had these goals. Like I would be ok as soon as this or that happened.

When I was twenty and my symptoms started I was working my way through college and had no health insurance. I was just so sure that I would be ok once I paid for all the blood work and got on the right meds. Looking back, it was incredibly naive of me. I had never really been sick before. I didn’t really have any experience with inept doctors. I had never had to deal with costly medications or blood tests. Oddly enough, when I was first diagnosed I was still wildly optimistic that the whole thing was just a small inconvenience. Something that I could easily control and manage.

When it became painfully obvious that my small savings account wouldn’t make it past a few visits, I looked for programs that could help. Or insurance I could afford. I have a file full of denial letters. Full of ugly words like pre existing condition. Government letters full of excuses like over eighteen, or too young, or non immigrant, not pregnant, education level too high. Just silly silly things.

I learned far too quickly that all doctors were not made equal. But most of all, that the only thing that mattered was the amount of money in my wallet. Sympathetic and helpful if there was money. Cold and rude when there wasn’t.

I knew I needed to see a specialist. I needed to get to a rheumatologist. From what I read online, I knew I wasn’t getting the right treatment from my family doctor in my small town. It was my new goal. I just knew that if I could make it to the specialist, I would be back on track.

But specialist cost about three times the rate as my family doctor. It took months, but I eventually made it. I knew I would be ok! In fact, on my first appointment, the nurse told be the doctor would have me running within months. I would have my life back.

A few months went my. The initial medication wasn’t cutting it at all. I had an aggressive case and it hit me hard and very quickly. Within a year I lost almost all the cartilage in my knees. Medications were so expensive. So was the doctors visits and tests. I lost everything. Car payment or medication that might take the pain away? It wasn’t even a real choice. Rent? Or something that will have me walking again? I lost my waitressing job. I thought it would be temporary.

So getting to the specialist wasnt a magic cure all. It didnt get me anywhere. What I really needed was the stronger medication. Enbrel was being called a miracle drug. Enbrel would save me. If I just got on Enbrel. But Enbrel cost thousands of dollars a month. I eventually was able to get on a program that covered the cost, but my this time, almost three years of my life had been wasted.

When Enbrel didn’t save me, I was more focused on winning my appeal with Social Security Disability. The whole process took nearly three years. If I would be accepted, then I would finally have health insurance. I would get real care and not the bare minimum I had had the past three years. Health insurance would solve everything. I would finally get my life back. Back to school! Back to work. But after so long, insurance alone didn’t help.

My knees were already bent and deformed. I could finally afford physical therapy but it was too late. There was no fixing me. The only thing keeping me out of a deep dark depression has been the fact that I have always had these goals. These stepping stones. Lately my goal has been new knees.

And it’s happening. And so I have this voice in the back of my head saying “The worst is over. You’ll get your life back”

But honestly, I’m terrified it will be like everything else.

I’m feeling better than I have in years. But it’s hard to let myself get too overly optimistic. That’s one of the biggest things R.A. has stolen from me.

But I really really think I’m going to be ok now. I know I still have a hard road. I know this. I know my R.A. is still something I will have to deal with. But without my knees being so bad, I think it’s something I can handle. I think I’m going to be ok….

 

P.s. If anyone is curious, I have a picture of my knee without the bandage on. It’s quite disgusting, so if you have a weak stomach, dont click. Lol.

http://i69.photobucket.com/albums/i73/ashleynicole_999/londonjordan915.jpg

How rude!

I decided to go to the local health and human services office yesterday to see if they could give me a temporary insurance card while I wait for the one from social security to make its way through the mail. I hate going in there. The people obviously hate their job and don’t want to be there.

So I signed in and the lady in the front made a copy of my driver’s license( it was taken when I was 18 and tiny) and said it would take about an hour. So I sat down to wait. A few minutes later another woman came in and picked up the paper and looked around the waiting room and I was the only one in there. She sat down. About 40 minutes later she held the sheet up and said ” This isn’t you, is it?” I said yes it was and I was waiting for a temporary card.

She just looked back and forth between the paper and said “What happened to you?”

I just sort of stared at her in shocked. Muttered out something about weight gain and being sick and then went and sat back down. I was so embarrassed. I don’t know if she knew how f-ing rude that was.  She said it all sickly sweet and pityingly. Bitch.

And after all that, they couldn’t even find me in the system. So I called S.S. They said I’ve been covered since the beginning of June. But I’m not in the system yet. That doesn’t even make sense. Bleh. I’m supposed to try again Wednesday.

It was a really crappy day. But when I got home and weighed myself I saw I’ve lost 4 pounds! Ahh! I actually lost weight! I haven’t lost weight in like a year. I dropped my prednisone from 5mg to 2.5 several days ago. I haven’t told my doc yet. But I’m actually losing.

The storm is finally passing…..

I hardly have words for such wonderful news. I’ve never cried out of relief before. This big black cloud I’ve had over my head for the last few years is finally going to go away.

I officially have health care coverage.

Lets just let that sink in……

I have health care coverage. I now have medicare and medicaid.

Can anyone understand my relief? The weight being lifted from my shoulders?

I’m going to be able to get medicine whenever I need it. I can start physical therapy.

I’m going to be able to have Xrays. I’m going to be able to have my swollen neck looked at. I can have cortisone shots in me other knee.

I can go to the dermatologist! I can have my hypothyroidism treated. I can go to the dentist! The eye doctor! I can have real blood work done.

I don’t have to beg my family for money every month. I don’t have to be a burden on everyone I know.

I cant believe that after over three years with this disease I will finally be able to be treated like I need to!

Now I just have to wait on my card. The social security administration sent it along with my official acceptance letter to a very old address. For no apparent reason. Hopefully it will still be forwarded to my sisters address.

I’m so excited. I AM SO FRICKIN EXCITED!

Life is going to be so very different for me soon.

Oh, thats just perfect.

I received a letter in the mail today dated May 27th 2008. It was from the Foundation who supplies me with Enbrel for free.

They just wanted to inform me that I have been dropped.

No explanation. I will have to call Monday.

Lack of Insurance II

I went to my doctors Wednesday. Its been a few days, but I think I have sufficiently recovered. In fact, I’m feeling pretty good.

My father had to come to town to do some work on our family home that is up for sale. It’s been on the market for almost a year. Apparently, we couldn’t have picked a worse time to sell. Ha. Anyways, his wife sent her credit card with him and said I could pay a hundred dollars on the doctors tab, and then my medicine. I’m raking up quite a tab for Dad and her too. When the house sales, I am supposed to get a small cut. My father owed all of us kids some money from when he used the money our aunt left us when she died. So, we’re just waiting for the house to sell. My step mom has been helping us all bit by bit though, and its coming out of our “house money”

I was also able to drive his truck, so that was another load off my back.

So anyways, normal appointment. She was ecstatic that I was able to lower down to 5 mg of prednisone. She asked me how the Enbrel was working, what hurt, how much etc. Then she asked if I wanted injections. I really should have said no. Even with a discount, they’re are still over $150. But I said yes. I had two. One in my right knee since it’s the worst, and one in my right hip for my bursitis. Left knee and hip would have to wait. So between the doctors fee, labs, and procedures, my bill for just that day will be $650-ish. Add that on top of my $700. Minus the $100 I put down that day.

I don’t care. I was feeling rebellious. And yay for ridiculously overpriced shots! I feel loads better. My right knee is my good knee now. I’ve never had a shot hurt so bad though. I actually cried on that one. I’ve gotten really good at holding that in check. I never cry in public. Oh man, not this time though. The bursitis shot wasn’t too bad. But it took a couple of days to stop hurting. It was very tender for awhile.

Oh, and my feet swelled to massive proportions. My doctor said there wasn’t really anything I could do but keep them elevated.

The biggest kicker all day, was the fact that the reason I was taken off Enbrel for five months was because of a rash that had nothing to do with the medication. Or any of my medication. My doctor isn’t a dermatologist, so she’s been going through a huge book trying to find what she thinks its from. (because I have an amazing doctor) Well, they found it. It looks very similar to the type of reactions people can get from the medicines I’m on. But apparently, its supposed to be relatively contained. And almost always clears up on its own within 3 months. Mine started 8 months ago. So they gave me a prescription that only cost $4, and after two days, its already going away.

I could have been on Enbrel the whole time! My doctor said it was just rotten luck. Yea, and the fact, that I couldn’t get to the dermatologist. My family just kept saying I could wait until I was on Medicaid. Even if that is several months away. Ha.

Anyways, I’m feeling much better now. Feet back to normal. Right knee feeling pretty good. Hip feels pretty good when I’m not sitting. I think the Enbrel is kicking in. I should get my blood results back soon. I’m curious to see how the inflammation markers look. So, yea, I’ll worry about the bill later. Scarlet O’Hara always says ” I wont think about that today. I’ll think about that tomorrow” I like that concept.

Lack of Insurance

I watched Sicko today. Here’s a summary I found online:

Note to the president: Here’s your chance to lock up Michael Moore. The radically fierce and funny fireball he aims at our health-care system is a flat-out invitation to steal. First, Moore shows us how France, England, Canada and – yikes! – Cuba actually help sick people instead of letting them wither and die for lack of health insurance. Then he instructs us to loot those places for ideas. Anti-American? Hell, no. Moore argues that if another country builds a better car, we buy it. If it crafts a better wine, we drink it. Why not free universal health care?

As the agent provocateur of modern cinema, Moore is a moving target. Three of his docs (Roger & Me, Bowling for Columbine, Fahrenheit 9/11) had the bad taste to be box-office hits instead of slouching quietly to oblivion like most documentaries. Look for the reform spirit of Sicko to spark fresh attacks from haters who smear Moore as a fat, shambling, condescending grandstander eager to shade the truth to force a laugh or simplify an issue. Back off, guys. For one thing, he’s dieting. For another, Sicko is a movie whose time has come, even if the Treasury Department is already on his case for illegally taking a boatload of lung-sick 9/11 rescue workers to Cuba for free medical care they can’t get at home. Another dumb move from the Dubya camp. While political candidates sidestep the real health-care issues, like puppets of the pharmaceutical industry that finances their election campaigns (take that, Hillary!), Moore brings a blunt clarity to the table. In an era when the mainstream news media have lost the public trust to Jon Stewart and The Colbert Report, Moore’s brutally comic take on matters of life and death is just the ticket.

To prep for the film, Moore used the Internet to solicit health-care horror stories, not just from the 47 million Americans who don’t have insurance but from those who do. It’s hair-raising, especially when we watch an L.A. hospital dump a dazed patient at a homeless shelter because her insurance has reached its cap. In France, no resident is denied care; that’s why the World Health Organization ranks it number one (the U.S. is thirty-seventh). Moore, who shot 500 hours of film that he had to whittle down to two, puts a human face on those statistics. He traces the privatized health system back to Nixon, who figured, “The less care they give them, the more money they make.” He got that right.

Does Moore cut a few corners? Sure. Some of the European hospitals he visits might be spiffing up for the camera. The drugs an American patient buys in Havana (five cents there, $120 at home) might not be up to FDA standards. And maybe the French are pushing it by doing a patient’s laundry. But the weight of evidence Moore marshals for taking the profit motive out of medicine is overwhelming. In a summer of dumb, shameless drivel, Moore delivers a movie of robust mind and heart. You’ll laugh till it hurts.

It was brilliant. And I believe I am the perfect example of what happens to someone in this country who doesn’t have health care. And can not afford medical coverage.

You have a disease that many people are able to control and live with. I’ve read blogs about people with R.A. who own businesses, run marathons, have a family full of little ones to take care of.  People who are dealing and coping, and can be positive.

But the reality is that when someones ability to fight their disease is based on their ability to pay, then something is wrong. Something is very wrong. I am the perfect example of a disease taking over when it never needed to be that way. I have been denied help over and over. I have a file full of paper work. I have denial after denial. The reasons I have been denied vary from my age, to my education level, to the fact that I am not pregnant. The reasons never make sense. I’m telling you, I still cant make any sense of it.

Every month I have to worry about how I am going to pay for my medicine. It’s humiliating. And no one makes it easy. This month my father told me he just didn’t have the money. That’s it. Just said no.

Then my doctors office called me and said they couldn’t fill my prescriptions anyways because I haven’t had labs done. So I had to make an appointment. Which means my seven hundred dollar tab is now going to be well over a thousand. And that’s just with the bare minimum. I cant afford extensive blood tests, or cortisone shots. Or the Xrays I need taken of my neck which tends to get stiff. Or Physical therapy to help my knees. Or a dermatologist to see whats causing this outbreak I’m having.

My sister sent them the minimum payments for May June and July. So she cant help me anymore this month. My doctors office is really great to let me make payments though. None of my other doctors ever let me. But they will come after you if you miss payments, or if the tab gets too high. They call and say “How would you like to make your payment today?” Oh. If it was only so easy.

Not to mention the gas. Lord, its going to cost me over thirty dollars just to get there.

All the money I had left from my younger brother is gone. It went to paying bills. My autistic brother lost a hundred dollars when I sent him in to pay our electric bill. A hundred dollars is such a big deal right now. So it took every last cent I had to make it up. Wait. That’s not true. We have eighteen cent left in the bank.

And its only mid month and there is no way our food is going to last until the first.

Oh yea, and my car insurance lapsed.

Sometimes its very overwhelming. And the stress doesn’t help.

What would I do different?

What would I do different, knowing what I know now? (Ill keep this strictly R.A. related, or I’d be here all night)

Knowing what I know now, I would have stolen, cheated, begged, borrowed, scammed; done whatever it took to get myself proper medical care when I first learned about all this. They always say how important it is to catch this disease early. How important it is to be aggressive with treatment. And I am a testament to this. I never had to get this bad. I never had to get to this point. Everything in this life boils down to money.

I’ve always considered myself non materialistic. Even in high school, I argued with my friends over how silly things like big TVs and expensive cars and clothes were. Things like that never have, and still don’t hold any appeal to me. I’ve always thought I would be ashamed and disgusted to spend money on petty and insignificant things while there are so many people in need in this world.

The point is, I’ve never really been very bothered by lack of funds. I’ve been working since I was old enough. I’ve always been very responsible with my money. I’ve taken care of myself since a young age, and when I haven’t had enough, I did without.

God, I wish I could go back. Those first several months, when I lost everything. I should have begged everyone I knew to help me. I was way too full of pride. I suffered instead. I would have rather suffer than beg for help. Oh the depths we sink. My father helped when he could. He was going through a nasty divorce, he lost his business. I didn’t want to burden him. I should have begged him. I should have asked for him to do whatever it took. But I downplayed it. Of course I can wait to go to the doctor. He was broke, he had to take care of himself. He needed to get out of that awful marriage that destroyed our family. That’s all that mattered. She took everything but my mothers house. She took everything that wasn’t bolted down. She took everything down to the kitchen cabinet knobs.

My older sister moved away as soon as she graduated. She also moved out of my fathers house while in high school. I eventually moved in with her. But after a year of that, it was too much on her. She couldn’t take care of herself and me. She made decent money, but I didn’t bring in anything. She is not like me when it comes to money. She does not save, she is not responsible, and she likes to buy things of no use. Every time she bought anything I’d feel a little resentment, and then guilt for feeling that way. It was her money to spend however she wanted. I had no right to say anything to her. I’m already mooching off her. Already eating her food. Already jacking up her utilities. So she didn’t have money to help with with meds or doctors visits. Who was I to say anything? I should have begged her. I should have pleaded with her to do whatever it took. Nobody understood how serious this could get. They still don’t get it. I shouldn’t have kept it inside. I should have told them to make it a priority because it never was.

My younger brother is my biggest help these days. He’s made sure I’ve had relatively steady doctors visits lately. Even if they are just the bare minimum. At the time all this happened, he wasn’t really in the picture. In fact, I spent more time worrying about him than anything. He and my father had a huge, nasty, violent falling out after I moved out. It was bad. Very bad. He moved in with me and my grandmother. He has always been a very loving funny person. He was so sad. I’m crying just thinking about all of this. I received more than one call from him at the time that he wanted to die. Well, he moved in with us. I took care of him. My grandmother couldn’t. She was living on a very low fixed income. She couldn’t afford to feed and clothe two high school students. So it’s always been me and my little brother. Eventually he started acting out. He had some serious anger issues. He was diagnosed with bipolar disease. He dropped out of high school, and moved here and there. Different states. He would just up and move. So at the time all this happened I didn’t want to bother him. He had enough on his plate too.  He was barely keeping his head above water. But a small part of me hoped he would see how much I needed help. Without me having to beg. A small part of me hoped he would help me because we were always a team. I always took care of him. Even when he didn’t appreciate it. Even when he was so full of anger and depression to even care. So maybe I was a little bitter. And then of course I would feel bad for that. He always had it so much worse that the rest of us. He doesn’t need a sick sister to hold him down. I know if I had begged him he would have helped. I know if I had sat him down and told him I couldn’t make it unless he pulled it together and helped me, then he would have done anything he could. But I didn’t. I wish I had.

This is no ones fault but my own. But hell, even I didnt know how bad it could get. And how quickly it could go bad.

R.A. Hobos

I can honestly understand how a person can become homeless. I am lucky in my situation to have had people to help me in some way. Even if I don’t have anyone in my life who can afford to help me with medical bills, I have had people who let me stay with them. And in essence, attach myself to them like some sort of leech.

I have too much pride. Before I became sick, the idea of even letting someone buy me lunch was unfathomable. Oh the depths we sink.

I moved in with my sister into her one bedroom apartment an hour away from my previous home.

What if I did not have my sister? There are people out there without these supports. I’m shocked at how fast you can lose it all. Its a viscous cycle. You get too sick to work. You cant afford medical bills because you can not work. You can not work because you have become too sick.

Anyways, I just see things in a different light than I used to. I have more compassion than I used to. Looking back, I don’t even like the person I was. I have had a lot of time for self evaluation. That I never even realized I needed.

Do not get me wrong. I never was a bad kid. I did not do drugs, or steal, or drink, or anything immoral. But I could have done alot of things differently.

That has been one good thing to come out of all of this. I feel like I have grown in ways that never would have happened if it wasn’t for this illness.

Lawyers and such

I spoke with my lawyer today.

My court date for my disability case is coming up in three weeks. I have been waiting for two and a half years, so needless to say, I am super excited.  There really isn’t any reason I can be denied this time. Reasons why I was denied before were my age and education level. Like either one has anything to do with my ability to function.

All I really care about is finally being accepted for Medicaid. I can hardly even imagine how it will feel to be able to go to the doctor when I need to. To be able to afford regular medications. My god, its so far beyond comprehension at the moment.

Anyways, I was speaking with an aunt of mine who has been through the whole process. She was asking me about the court appointed medical visits I was supposed to have gone to. Then I began to remember that my lawyer had told me that they would probably send me to their own doctors, and psychiatrist, etc. Then I realized that this never happened. I never received anything requesting that I go. I start to panic. What if I actually get turned down again. What in the hell am I going to do then.

My lawyer reassured me that it was a good sign. They obviously felt that there was sufficient evidence. We shall see. I’m still beginning to feel the nervousness. I honestly dont know how I can survive any longer without help. I literally don’t know how.

Disability

Disability- what a nasty word.

a physical or mental handicap, esp. one that prevents a person from living a full, normal life or from holding a gainful job.

I cant even attempt to explain the hell that comes with dealing with applying for Disability. I cant, and I wont even attempt it here. Its something you have to go through to understand.

What do you do when you have no one to depend on. What do you do when you’ve always depended on yourself, and no longer can?

What do you do when you are twenty, broke, and diagnosed with a chronic illness? When you can no longer afford the doctors visits? When you can barely scrape by enough for over priced medicines? When you can only afford the bare minimal in medical care? You get worse. When you cant afford a $200 cortisone shot to the knee(per knee), then you don’t get the shot.

In December of 2005, I lost my apartment and both my jobs. I moved in with an aunt who only charged me $200 a month to rent a room. I couldn’t even afford that soon enough. I sold alot of things. Ebay was my friend. But I still couldn’t even make ends meet. Regular doctors visits were just out of the question. I went three months without seeing a doctor, and without any medications. It was a low low time in my life.

In March of 2006, I found a state program that helps people who are temporarily disabled pay for medical bills and become rehabilitated. Therefore, I finally got to see my first rheumatologist. I was able to have xrays taken for the first time. (After less than a year with R.A. my knee have already lost almost all the cartilage. They were nearly bone on bone) I couldn’t even walk into his office at the time. The nurse told me Dr. T was a great doctor. He would have me running in a week. Needless to say, it did not happen.

Looking back, its odd how much hope I had. I thought Id be back to normal within three months. I had plans of finishing school. This really was just a temporary setback. Temporary. Temporary.

I was able to go to Dr. T for several months. Eventually, the state dropped me from the program because I wasn’t progressing fast enough. And I technically couldn’t be considered for rehabilitation. They didn’t not even bother informing me of this. I found out when a pissed of CVS pharmacist called and said the last dose of medicines I picked up weren’t covered. I eventually got someone to return my call and explain why I was dropped.

I could not afford living with my aunt anymore. She was my moms sister. My aunt has been through alot. She is the only living survivors out of 4 children. My mother died when I was 14, and my aunt and her were very close. I love her too, but unfortunately, she is less than supportive. We all have our faults, but being there was no longer an option. I felt alot of resentment from her and her daughter for every time I needed help. And when I couldn’t afford the rent, I did not feel welcome there any longer.