Im moving on

Hey everyone.

It’s been four months since my last post and just about that long since I’ve had time to read anyone elses.

I started this blog in March 2008. Which was probably the lowest point in my life.

I’m now five years into this disease and I feel like I have experienced more ups and downs than some people experience in a lifetime. This blog was the single greatest source of comfort for me in a time that I had nothing else. Connecting with everyone else in the R.A. community has been a truly life changing experience. And, more than anything else, I give it credit for saving my sanity and pulling me out of a deep hole of despair.

But I feel like it’s time to move on. It’s been one year since my first knee replacement, 11 months since my second, and three weeks since my hip replacement, and I am pleased to announce that I feel half way human again. I’m still fighting the war, but these key battles have changed my life completely. I started back at school in the fall, and have completed two full time semesters with a 4.0 average. I’ve won awards for my art work, and I am all set to transfer to the University this fall. I’ve moved into a new apartment, and finally feel like I have my life back on track.

I still struggle daily with my R.A. but I have improved drastically. It has been a long hard road to recovery after three and a half years without insurance. I still feel angry about how our system failed me, but I’m feeling less and less like a victim with each new step.

I’m going to take a break, and someday I may be back. But for now, I dont need this blog. I’m making it out there on my own and it feels great.

If anyone with R.A. ever stumbles on this blog, I want them to know that everything will be ok. I promise.

And I am still always available if anyone needs me or just needs someone to listen. raandme at gmail.com

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.

The Next Knee

I had my follow up appointment with my surgeon. My knee is looking great. I’ve been getting around without the walker and now I’m back to my trusty cane.

I looked like a complete goob today but couldn’t make myself care less. I got the usual stares that seem to accompany me wherever I go, but I can’t even blame them this time. First of all, my gait is completely hilarious. Since I have one straight leg and one bent leg, I’m looking a bit like this:

To compensate for the height difference, I now have to stand on my tip toes on my right leg. And since my knee replacement was only two weeks ago, Im still a bit wobbly. I feel like a new born horse. When they’re all shaky and unsure of themselves.

In addition to my lovely physique, I had a decidedly unusual fashion delimma. After surgery they make you wear these super tight bright white stockings to prevent clots. I have to wear them literally all the time with the exception of showers. So this morning I realized that I couldn’t wear jeans wince the surgeon would want to examine my knees.

My wardrobe is very small at the moment because of the steroid weight I’ve gained. I don’t own a dress that fits at the moment, so my only option was a pair of green cargo-esque capri pants. Over my white stockings. With a pair of sparkly black slippers since my usual flip flops weren’t an option, and my feet have been too swollen for normal shoes.

It was pretty funny.

But I found out my second surgery wont be until June 1st. It was a bit disappointing. It’s going to make physical therapy an issue since I only get so many visits a year covered on my insurance. Not only that, but it will be an additional three weeks with no R.A. meds. Ugh. Ugh. Double Ugh.

But the longer I think about it, the more I think it will be for the best. My left leg should be stronger so it should make the recovery that much easier.

The reason they are delaying is because they want to make sure the left leg is completely healed because of the infection risk. My silly immune system would not be helpful. And I know what a big deal an infection can be. One of my closest friends had her knees replaced when she was nineteen. She had leukemia and all the medications and steroids destroyed her joints. When she had her knees replaced, one got infected. And it was not good. So even though I’m disappointed my surgery wont be next Monday, I can see why they’re waiting. If it wasn’t for Memorial Day, I could get in a week sooner. But what can you do?

Anyways, I’m pretty upbeat today, it felt so good to be out of the apartment. Everything is so green. Im missing so many lovely photo opportunities! At least it’s for a good reason.

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

Now we wait

I dropped my medical records and X-rays off to another doctor. He wants to look them over to see if he even wants to bother seeing me.

If afraid he’s going to take one look at that file, see I’m 24, and say no.

I don’t like the feeling of having the course of my life and future in the hands of a stranger. Or anyone for that matter.

And apparently second opinions are tricky with my insurance.

What if he wont even see me? Or sees me and then says no. Will my insurance even pay for it if I manage to find someone else? I’ve had a knot in my stomach all day. Now I have to wait until they call me.

Oh, and in the medical records, the last doctor wrote that i showed signs of scoliosis?!

This and That

For one month my medication costs were just under $1600. With my new insurance, I only paid $6.25.

Enbrel is the biggest expense. It runs a little $1500 a month, but I now only pay $3.1o. It’s still hard to get used to.

Also, I’m almost out of visits from my home health physical therapist. My right knee went from a 31 degree angle to a 22. And my left leg went from a 29 to an 18. They don’t look any differently though……

I walked across my apartment 3 times in a row on the last visit. Also, my balance is getting much better. I stood up with my feet as close together as I could and was able to stand up about 25 seconds before I began tilting.

Its odd that lately my muscles have been much more sore than my joints! If any of you thought joint pain was harsh, get a deep tissue massage to knots in your calves and flexion contractures behind your knees. Ugh. Almost enough to make me scream out in pain. And sometimes she presses down really hard in one spot for about thirty second. She says it forces the muscle to relax.

I don’t care how much it hurts though. All I want right now is straight knees. I don’t care if she tortures me. I feel alot better though. Its just that I don’t look any differently.

Not to mention, I still have not managed to lose a single pound. Literally. Every single morning I weigh myself, and every single morning it says the same exact thing. I was beginning to think my scale was broken, but nope. It works perfectly ok.  I bet my knees would feel amazing if I lost all theexcess weight. But nothing is working! I ate only vegetables and fruits for three weeks and still didn’t lose anything.

I keep having these dreams where I’m running and bouncing around like everything is just fine and dandy. Oh man, to be able to run…..or even jump! Wouldn’t that be amazing. To just take off as fast as I can and run until I cant anymore? That would be beyond amazing.

I’m still amazed

I’m still amazed what a difference insurance makes. I just bought my months supply of prednisone and methotrexate. They used to run me about fifty dollars(which I didn’t always have).

It only costs me $2.10 now. 

I haven’t been sent any obnoxious-ulcer-inducing bills in months. Now that I’m receiving SSD I don’t have to sit and worry about how I’m going to have enough to eat and also see my rheumatologist. No more decisions of whether or not to pay for medicine or electricity.

I think the lack of stress is helping just as much as anything else.

I don’t have to call my dad or sister every month and ask for money. And then have them say they wish they could, but just couldn’t spare anything.

I am very very thankful for the change in my life lately.

I’m going to be 24 soon. I haven’t done a thing with my life since I was twenty. It’s very hard for me because I have always been an overachiever. I went from having a full time job, a part time job, and going to school full time to nothing.

I want to finish school so bad it hurts. But I also don’t want to push myself too hard too soon. My doctors say I just need to focus on my health at the moment.

I’m thinking that if I feel up to it, I may take a couple art class at my community college this summer. Just to get back into thing.

My posts always get off subject.

ANYways, Im amazed……

And now with Insurance

I had my first visit with my rheumatologist with insurance. My card came in the mail Saturday! I’m in such a good mood. I’m sure I looked like some sort of nut job. I was smiling the whole time. Everyone in the office was excited for me. My doctor had a list of things shes been waiting to do.

I finally had Xrays taken. Two of my neck. Two of my chest. ( I’m not sure what those were for) 3 for each hand. 2 more each knee. 2 for each hip. I couldn’t get into some of the positions though. My right hip wont bend outwards. And my knees wont straighten. The worst part was for the Xrays where I had to stand. The technician was so sweet though. She helped me stand. She held me up because I couldn’t stay balanced when they made me stand straight. I had to take a break after the second Xray. I was in an ungodly amount of pain from standing. But I got through it all. I wish I could have seen them though. I’m curious. The last Xrays I had were two and a half years ago. And the cartilage was almost gone then.

I also had tons of blood tests done. I don’t even know what all. There was something for thyroid. Something for vitamin b deficiency? Definitely something for calcium. And I had to pee in a cup for some odd reason. Ive never done that there. I should get the results soon. My doctor also wants me to see my endocrinologist about my thyroid. She said that may explain some of my fatigue.( Though she thinks it may be depression. Nope. Not it. ) I haven’t been to him in nearly three years. He found a goiter about 4 years ago. But the last time I saw him he said it had not changed sizes and that I should come back in a year or so. So I’ll call tomorrow about an appointment.

I have an order to start physical therapy too. She says its the most important. The order is for 3 times a week for six weeks. I have an appointment tomorrow for evaluation. Im kind of scared though. I mean, just standing makes me scream out in pain. How am I going to be able to handle therapy? I guess I’ll find out.

I also have an order for a bone Density screening. Because of my prolonged steroid use. The osteoporosis center is closed until after the 4th of August though.

 Oh, and I saw a dermatologist yesterday. He gave me a prescription and said it would go away completely. So that’s a relief. Just a rash that is in no way medication related. Woo!

Oh, and my rheummy said she was going to give Enbrelone more month and if it doesn’t do much better then we’re going to try Humira. If that dosn’t do much, then onto Orencia. Or some other medicine I’ve never even heard of. And now I’m going to taper off prednisone completely.

So I’ve had a very busy day. A fantastic day overall. But now I’m exhausted and sore and I’m going to try and go to sleep early. We’ll see if it works.  🙂

The waiting game

I am so good at the waiting game. I’ve been waiting for years….

Ok, I finally got my Medicaid card in the mail. Along with my Medicare prescription drug card. I have not however, received my Medicare card. Its all very confusing. I also cant seem to find any doctors offices that take Medicaid. Though some do take Medicare. But not without a card. Bleh.

My rheummy’s office doesn’t take either, but since I’m already a patient, they agreed to let me continue. I’m glad. I really like the one I’m seeing now. She replaced my beloved doctor a few months ago. I hated her at first. She nearly had me in tears the first meeting. Shes very up front and harsh sometimes. The more I’ve seen her, the more Ive realized that she doesn’t mean anything at all, and I’m probably just being too sensitive. She is obviously a very caring doctor. She goes above and beyond in my book.

Anyways, back to Medicare. Now I can call for a replacement card, but I can only get a recording. There is an option to have a replacement card sent to the address they have on file. But there’s no option to see what that address is. And that’s a huge problem for me in the first place. I’ve gotten dozens of letters lately. Some have made it to my address. Some they sent to a really old address. I still haven’t received those. Some they sent to my sisters address, and I don’t even know how they got that address. I’ve called the office, but cant seem to get anyone on the phone. I’ve left messages. They are never in a hurry to respond.

I talked to a physical therapist. She said Medicare is very picky about what they will and wont pay for. So they are going to evaluate me and see what they can do. But I still need a medicare card before they can see me. I have about five or six letters that mention my Medicare coverage. But none of them are the actual letter I need.

I called a dermatologist. They also need a card. At first they scheduled me for an appointment two months from now. Then I told them about the rash ( the drugs my rhemmy prescribed didn’t manage to do anything) and they rescheduled for first thing Monday. I need to get ahold of a card before then. Bleh.

But anyways, this is a temporary setback. I’m probably just rushing things. But my god, I’ve had health coverage for weeks! And I still havnt been to the doctor. Haha.

Also the girl that gives me my shots went on a vacation with no warning. So I’m really overdue on both my Enbrel and my methotrexate. So there are some tight tight tight knees right now.

Oh, but a change is gonna come 🙂

Rheumatoid Arthritis and Dieting III

I thought I’d ask my doctor about my diet, and how nothing seems so be working. I’ve gained another couple pounds. She said, there’s really nothing I can do about it until the prednisone has been out of my body for awhile. Even though I’m down to 5 mg, it hasn’t been for long, and since I was on such a high dose for so long, etc. etc. etc.

Basically she said just to wait a month or two, and then maybe I’ll be able to loose some weight. So I’m not going to eat carrots all day, if Im still going to gain weight regardless. I’ll try again soon. I still follow a very healthy meal plan though. I always have. 

Oh, and she said physical therapy would help. Im sure it would.

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.

Rheumatoid Arthritis and Dieting II

I’ve actually managed to gain another seven pounds.

Skirts are no longer an option because the stretch marks are now very bad behind my knees and now reach half way down my calves.

I no longer own a bra that fits. I never thought I’d be annoyed by rapidly expanding breast. If it wasn’t for the stretch marks I wouldn’t be.

I am now down to 5 mg of Prednisone and I am miserable. I cant move. I hurt. And I’m heavy. So far the diet has not been successful. I’m going to keep trying.

I have a doctors appointment in a couple days. I cant wait to hear about all the things I cant afford to do.

On a lighter note, my feet stopped swelling.

 

Not so new anymore

Ok, the swollen feet thing is getting annoying. It’s been happening too much lately. Last night they swelled up  when I was up cooking dinner. Even though I was on a stool. If I’m sitting at the computer too long they swell. I drove across down to the grocery store and they were too swollen to get out.

Ugh. Also, I’ve been getting delinquency notices from my doctors office. And calls, and more letters. I’m on a payment plan, and have been making payments, but the billing office keeps claiming they haven’t received anything in months. My doctors office has told them that I have. But I’m still getting harassed for $700. If I hadn’t been making payments for months, then my tab would be way higher than that. They keep threatening to turn it over to collection. Ha! They don’t know my credit is already way past repair. Whats another mark against me? I don’t care!

Which obviously isn’t true. But its easier to think that than worry. There’s nothing I can do right now. I just need to hang on. Just long enough to get some help. I still haven’t heard anything about my court date. It’s been a month. I hope its not much longer. I cant afford another doctors visit right now. Im already past due for my labs this month. But I dont have the $250.

Disabilty

I am so nervous. I am so unbelievable scared.

I just spent an hour on the phone with my lawyer. My case is Monday, and my entire life is dependant on it.

I know I should not have anything to worry about. I have always been honest about everything I’ve written and said to the social security administration.

But I’m still so nervous, I’m fighting back tears. My hand are shaking so bad I can hardly type. The knot is back in my stomach. I can not even think about this going badly. I honestly can not do this any longer if I don’t get help. I am so proud of myself for holding myself together for so long, but I know I can not keep going if something big doesn’t change. I absolutely can not continue like this.

God, I never think like this. I’m an emotional wreck right now.

But you know, since I became sick, Ive always held it together because I’ve had something to look towards. At first, I just focused on the fact that I would be ok once I was able to start seeing a rheumatologist regularly. Then it was “I’ll be ok once these meds kick in.” When these hopes started vanishing it became “I’ll be ok once I can afford better meds” When it became clear that was not going to happen it became “I’ll be ok once I get Medicaid.” Then there was “Everything will be better once I get on Enbrel.” Its supposed to be a miracle drug.

So those hopes have held me together through over two years of pain and misery. And they have all failed me. They have all come to nothing. And in the back of my mind I always have the hope of returning to school. And over the past few months, I have had to come to the realization that I may never be better.

And all my hopes, and all my dreams, everything I wanted for myself…..they may never happen.

And I had some big dreams.