Made my day!

I got a call today from my attorney who told me that my hearing before the social security judge tomorrow was cancelled. She said that the judge had called her today and said that he agreed that I was disabled and that the evidence in my file was overwhelmingly in my favor. I am so relieved, but, she said it may take 3 or more months to start getting any money coming in. I don't think I can make it that long!
I am a little mad about this whole process even though I finally won my case. Why did it take so long for me to win my case? It's not like the judge was looking at any different evidence than the social security examiner's and doctor's who had previously said that I could still work even though I have this disease. By the time I get any money coming in then it will be almost 3 years since I last worked. My brother told me that every time they deny people benefits then they are trying to starve you out! I had never considered that before and it hit me like a ton of bricks. It made so much sense that if they keep turning you down then you might be so desperate that despite the amount of pain you are in you will go out and get a job and they won't have to give you benefits. How sad! Unfortunately I have to believe that they are doing this because it just doesn't make any sense to me otherwise. I am grateful that once I start getting my monthly check I won't have to worry about whether I am going to be able to put gas in my car to get to the doctor or store or how I am going to be able to fix things when they break. I feel that my government let me down like I am sure they have done this to many other people out there! I hope one day that this system that most people pay taxes into for things like this gets fixed. Social Security is suppose to be for retirement and if you become disabled and cannot work. If this was a private company that promised benefits and then tried to get out of paying them then the government would be all over them filing lawsuits and threatening to throw them in jail. What a double standard! What a shame!

Major Depression

I haven't really been posting too much lately due to the fact that I have been not feeling so well for the past couple of months. I think that some of the new medicine I am on is making me sick. Also I have been really depressed lately. I am having financial problems which one should expect considering I live alone and have not worked since May of 2002. I live in Ohio and it is getting cold here and I found out my furnace doesn't work have been freezing and since I also have arthritis which is related to this disease the cold weather makes my bones and body hurt that much more. I have tried to find help to fix my furnace, but, there isn't any help to be found. It was hard anyway to ask for help due to my pride and now I am even more frustrated to think that there is no place to go for assistance. I didn't ask for this disease. It came looking for me! I always thought the great and generous American government that I faithfully paid my taxes to would be there when I needed them and they weren't. What an eye opener! There is no compassion and caring for the ordinary citizen.
I hate to turn this into something political, but, we are coming up with all of this money to fight terrorism(which needs to be done) and we can't come up with the money to assist people who can't help the fact that they are disabled and can't work.

I knew that my social security hearing was coming up before the judge tomorrow and he was was going to decide my fate. I was either going to get disability benefits or I was going to be denied again. If I lost then that would probably be it. No more appeals would be left unless I wanted to file a lawsuit in federal court and I probably couldn't get an attorney to assist me with it anyway since I didn't have the money to pay them. I have to admit that the thought crossed my mind that I would either be homeless or I would just walk in front of a truck and end my suffering. Neither one of these options seem to be real appealing most of the time. I try hard to fight these feelings, but, it is frustrating. I was even at the point where I didn't want to pray and ask God to help me. I thought that there was so many things that have went bad in my life that if I was going to lose my case before the judge tomorrow then that would confirm that somehow I had lived my life wrong and I was getting some payback. I know that it is wrong to think this way, but, sometimes I can't help it!

Finally some good news!

I am pretty excited right now! This afternoon I went to my mailbox to check my mail and found that Social Security finally has scheduled my hearing before the judge. It is for November 17th and even though I have been waiting for this a long time I have to admit that I am a little nervous about it. This is it. I either win my case or I get rejected for disability once again. I am confident that I will win, but, you never know how these things are going to go. I really just don't have much faith in our government right now. I couldn't believe that I had initially lost my case anyway since this is a really wicked disease I am living with. But, that is exactly what happened. My attorney told me she expects that we will win with no problems. Is that just lawyer talk or what? I don't know, but, I hope that she presents my case well and we end up winning. I guess she wants to get paid and will only make her money if I win. Looking back and thinking of how much I have struggled finacially and physically I am glad that at least I will know one way or another.......

Feeling sick lately

I haven't been feeling too well lately and I am trying to figure out the cause of it. I was put on several new medications a couple of weeks ago and have just felt crappy ever since. I get nauseated for hours at a time and that has to be the worst feeling in the world!

Some relief

Since I last posted I have been to the pain doctor and she prescribed some pain meds and physical therapy for me. I also went to see the doctor who specializes in treating cholesterol disorders. I really learned a lot about the foods that turn into cholesterol. He put me on some medication to help bring my cholesterol level down. Both of these new doctor's of mine seem to be really nice and down to earth. The one thing I can't stand is a doctor who doesn't listen to anything you say. So hopefully I am on my way toward better health. As long as I am not in a lot of pain I can deal with it!

Visit with Family

I finally got to go out in somewhat of a social setting last night. My cousin and uncle were up visiting from another state and I went to my aunt's house to have dinner with them. It is nice to be able to catch up with what they are up to since I do not get to see them very much. My uncle is getting up there in age and even though he seems to be in pretty good health it is always nice to be able to get his advice on life. I think that even though I am older than a lot of people out there, I can always learn something from someone who is older and wiser! I would like to think that I am continuing to grow as a person.
I felt pretty good as far as pain for awhile and then my left knee started hurting and after a couple of hours my hips were hurting and then my back started hurting. I guess the pain medication started wearing off. Oh well, that's just part of the daily routine.

Trip to the Doctor's.....

I went to the dermatologist on Monday and my family doctor on Tuesday. The dermatologist removed a mole from behind my left ear because she felt it looked a little funny. My family doctor ended up changing some of my medication and I also needed some paperwork filled out. I hate asking doctor's to fill out paperwork since they already have so much from the insurance companies, but, I guess sometimes it can't be helped. I also went and had some blood work done on Tuesday afternoon. They checked my liver function, cholesterol level, sugar and kidney function. I received a phone call from the doctor's office early Wednesday morning and everything came back normal except for my cholesterol level. I already knew that my cholesterol level would be high since I have had a problem with cholesterol since my early 20's. I guess heredity plays a bigger part than I had ever expected in my health. I am going to see a specialist on September 30th just for this problem. I think that this doctor just specializes in treating people who have high cholesterol who don't really respond to other forms of treatment.

I went to my cousin's wife birthday party on Wednesday. She is not much into parties, but, I enjoyed just getting out and socializing a little bit. The weather here is great and it was nice to get out and enjoy it. I am definitely not looking to the winter. I love snow, but, could do without the really cold weather. Ever since I have had this disease it is miserable when it gets cold. Every part of my body aches. I am looking forward to the day when I am back in charge of my life instead of having this disease control every part of my life for the last several years. My advice to anyone who has this disease is to stay as active as much as possible and to live life to the fullest. It is hard to do that sometimes when the pain is unbearable, but, if you can please do it! Also if you are in pain and are not getting relief from a certain pain med then tell your doctor and insist they give you something to control your pain. If they refuse to do that then go seek out a doctor who specializes in treating chronic pain. It is your life and you need to live it as free from pain as possible.......

Another day, same old me!

Well here it is a beautiful Sunday and I am sitting here watching some football on television and I am trying to focus on the things that I can do to make myself healthier and not concentrate on the things that I can't do. That is pretty hard though. I was asleep foe like 12 hours last night. That is pretty strange since I am not on morphine at this time. I guess being on so many medications finally catches up with you. Also I think your body says it needs more sleep than at other times! I also am trying to get my sleep pattern straight, since I use to work the night shift before I contracted this disease I can't seem to be able to sleep at nights. I feel so much better if I go to sleep at night and wake up at 8:00 or 9:00 in the morning. It makes me feel somewhat normal.

I have a cat and she is so bored she is asleep on my bed as I am sitting here writing this. Sometimes I think that she is my only friend! I guess it is easy to feel that way when you don't have a social life and you are pretty much confined to bed. I advise anyone who suffers with this disease to try and stay involved with your family and friends as much as possible. I have tried to do that, but, unfortunately it hasn't worked out that way I had hoped. I am going to the dermatologist tomorrow and to my family doctor on Tuesday. Then it is off to the new pain doctor on the 29th and to the doctor who specializes in treating high cholesterol on the 30th. Oh, I also have to have blood work done tomorrow also. I have to fast for 14 hours before I go and that makes it kinda tough. But, another day and another step closer to reaching the end of my nightmare! At least I hope........

Cheer arrives in the mail!

I got good news today. I went and got my mail and I had a friendly letter from the I.R.S. waiting for me. They say that I owe $794.00 from my tax returns from the tax year 2002. I had to liquidate my 401 K and when I filled out my taxes I filled out the proper form stating that I was disabled and that should have excempted me from the early withdrawl penatly. Federal taxes already had been withheld before I received the money. But, I guess old Uncle Sam doesn't agree with me on that one. I have until October 13th to reply and tell them that I disagree with them and send in the corresponding proof or I am in big trouble. I really don't know what they could do to me since I am as about as poor as you can get. But, I always try to stay off the radar and hopefully will get this straightened out as soon as possible!

I went and filled out my paperwork at the pain doctor and I have my appointment set up for September 29th. I also had to stop by the family doctor's office to have them fax the referral form over to the pain doctor's office which they were suppose to do 3 weeks ago. My family doctor has tried to help me out by prescribing Vicodin for the pain, but, my disease has progressed past the Vicodin stage. I was taking Morphine and Methadone just a few months ago before i stopped going to the previous pain doctor and Vicodin is quite a step down from those drugs. But she was trying and some pain medication is better than none. I don't like to take Vicodin anyway because it makes me nauseated and you should eat something when you take it. I just don't eat that much. Most days I only eat 1 time a day and it is hard to force yourself to eat when you are not hungry!

New Title for my Blog

If anyone who has beem reading this blog probaly has noticed that I have recently changed the title for this blog. I did this even though osteonecrosis and avascular necrosis are the same disease it is probaly more commonly known as avascular necrosis. I thought that it might help more people find it if they are searching for information on the disease as my main goal for the blog is to educate and hopefully help the thousands of other's out there who are living with the pain and destruction caused by this horrible disease!

Off to the Pain Doctor

Well I am off to another pain doctor. I have to go and fill out the initial paperwork. You know where they do the F.B.I. background check on you! I was orginally going to a pain doctor before and they had me on morphine and methadone. Which I guess was good for the pain, but, bad for everything else. I slept for 20 hours a day or more and the medication had some very unwanted side effects like constipation!!! (gross....I know)
But, you have to take the good with the bad and deal with it. I decided not to go back to that doctor after the office staff was very rude and treated all of the patients like children. I mean I am going to be a senior citizen in like 2030 and do not deserve to be treated like I am in pre-school. The only thing they didn't do was pin instructions on my shirt for my mother. And I am surprised they didn't do that!
Anyway, I hope to have much better luck with the new doctor. My family doctor has been prescribing pain medication for me in the meantime and you know how they are about pain meds... they freak out that the DEA is going to be knocking down their door at anytime. And you can't blame them. The DEA needs to get their act together and realize that people with chronic physical problems have to have there pain issues addressed. There is to much suffering going on needlessly and hopefully one day they will wake up and get with the program.

I also received good news from the Social Security office concerning the review of my case before the judge. Apparently they have organized all of my paperwork and sent a letter to my attorney asking if there is any more evidence from my doctor's that need to be sent in. I called my attorney and she said this is common and that I should be receiving my court date sometime in the near future. So I am praying that everything goes well and I win my case against the bloated and uncaring goverment!
I just want to say that my family doctor is the best......She is very caring and understanding. It is the federal goverment that has a problem and not the doctor's! We have a very good patient and doctor relationship based on what I feel is mutual trust. Which is the most important part of any relationship that has so much at stake!

A new day

It's the start of a new day and here I am stuck in the same old same old! My life is pretty much filled with laying in bed for 231/2 hours a day and taking pain medication to handle the pain associated with this disease. I also have about 14 other prescription medications that I take. I know that it seems like a lot and it is. But, you have to do what you have to do..... I take medication for pain, depression, nausea, high blood pressure, high cholesterol, because my stomach hurts, because I hurt. You get the point! I think the worst thing is I can't even do a whole lot of exercising since it just causes me to hurt even more. That pretty much sucks. I am trying to keep a positive attitude and I tell myself that I have to deal with what life brings me. Some times it is really hard to stay positive, but, what other choice do I have. Give up? I don't think so! I am just hoping that tomorrow brings me a little closer to this nightmare being over!

Questions?

If anyone has a question about Osteo necrosis I would be more than happy to answer them. I think that since there is a lot of recycled information on the internet it is hard to be able to get answers some time. And the reason that I am doing this blog anyway is to provide other's with the condition with maybe a little more information than they had before! So, please do not hesitate to e-mail me your questions. My e-mail address is rognisea@gmail.com

Back Again!

It has been awhile since I posted on this blog and I decided to update those of you who might be reading it. I recently went to my orthopedic surgeon who did the core decompressions on both of my hips. It had been a little over a year since I had seen him and I went having made up my mind to have my hips replaced. I know that it is a huge decision to make, but, I have had enough of the pain and since I am still fighting for Social Security disability I thought that I had better get on with my life.
Well I insisted that he take an x-ray of my hips to make sure that there wasn't healing going on, and surprise he said that they looked better than they did before. Although he did not have my previous x-ray's or MRI he thought that we should wait. I admit they don't hurt as bad in warm weather,but, cold weather is a killer. I think I have some arthritis that has set in and the cold makes parts of my body ache that had never ached before. I told him this winter will be the real test. Hey, I am in my 30's and I want to lead as normal a life as possible. But to everyone out there that shares this affliction with me you know that is virtually impossible especially in the later stages of the disease!

I am still waiting to receive a court date for my disability case and am barely making ends meet. I don't know how the goverment expects people to be able to live with no income. I think it's very sad that the goverment gives so many benefits to illegal aliens and so few benefits to American's who had paid their share of taxes. It just doesn't make any sense what so ever. I paid into the system and now when I am down and out it is like pulling teeth to receive the benefits you have earned. Is this a great country or what?

It's been awhile

This is my first post in a few days. I am in the process of switching high speed carriers and I am using dial up for a few days and my phone has been on the blink. Anyway much of the same going on. I am still waiting to hear from my attorney about my Social security claim. And I still am full of aches and pains. I am really getting tired of sitting around waiting for other people to decide my future. Social Security denying me time after time. My surgeon pushing to have me to have my hips replaced. I know that I am not the only one in the world with problems, but, when I think anybody really can't care a whole lot about other people when faced with so many of their own!

Definitions

I guess that I have been calling the disease that I have by different names. That's because there is several names for the disease and although that can be confusing to people as it was to me at first, all of the names that I refer to in this blog are really about one disease and not multiple diseases except for the arthritis that I have.

The most popular name for my disease is Avascular Necrosis. It is also called by the names of Osteo Necrosis, Aseptic Necrosis, and probaly many others that I don't know about. It all boils down to basically the same meaning, which is bone death!

Good Day

Monday was a relatively good day for me. I mean pain and ache wise. I tend to decide whether I had a good day by whether or not the pain is bad or if it is bearable. I think that since I have arthritis along with the main disease that my arthritis is better when the weather is warmer outside. I still had my aches and pains,but, they were better!
Woke up and my telephone service was out. I have had a lot of problems with my telephone and SBC is perhaps the worst company that I have ever had dealings with. They just can't seem to fix my phone so that it works correctly. This is the 5th problem I have had with my phone in the last 2 months. And when you are practically bedridden your telephone means everything to you. It is your contact with the world. Having someone call you just to see how you are feeling that day means so much. It's like you still are connected to the world. I had to call SBC repair today and of course they politely told me that my phone would be fixed by June 9th. Seems like a long time to me, but, I have come to expect really poor service from them and have switched my phone service to another provider. Hopefully the switch is made soon!!

New Post

Having a pretty good day so far. Pain and aches are tolerable. Even though that can change in a heart beat.

I applied for Social Security disability in Nov. 2002 and I have been turned down twice.I am at the point where I go before the judge and then hopefully I will receive the benefits I am entitled to. It is hard to live for over 2 years without bringing home a paycheck.
I try to keep my spirits up and mind off of what I know the future holds. Multiple operations and rehab is not my idea of fun! So I try not to think about. I have to schedule a physical therapy appointment so that my doctor can figure out what type of support equipment I need. I guess I will do that Monday.

New Post

I should give a little background on how I contracted the disease. About 10 years ago I had double pneumonia and was placed on many medications to fight it. There were antibiotics, pain medicine, and for me the most horrific medicine out there prednisone.I was discharged from the hospital and had difficulty breathing over the next several weeks. Then the pesky pneumonia bug raised it's head about 1 month after I had contracted it the 1st time. Of course this meant more antibiotics, pain medicine, and another round with that killer prednisone!!!!

Unfortunately as they say, I won the battle, but, lost the war! Although there are many causes of avascular necrosis, prednisone and other steroid type medicines are the major cause of this disease.

My life is now full of pain and depression. A typical day for me is getting up whenever I just happen to wake up. I could sleep for 3 hours or 20 hours depending on how much pain medicine and other medication I have had that day. I wake up every day so stiff from arhritis(another complication from the disease) that instead of feeling 39, I feel 90! I have to take my pain medication (morphine and methadone) and my arthritis medication(lotrel) and lay in bed for several hours just to be able to get relieved of some of the stiffness and pain. I can't do anything physically demanding like bend over or walk very far without my hips throbbing and sending shooting pain up my back and into my neck. Just taking a shower leaves me so physically tired I have to rest for 15 minutes or so afterwards.

I am going to try and update this blog as much as I can, but, hopefully everyone will be understanding if I miss a day or two. Till next time.......

Hello

My name is Roger and I am a 39 year old male that has osteonecrosis of both hips. If you don't know what osteonecrosis is I will explain it the best way I can.
Osteonecrosis is a disease of the bones that comes from a part of the bone not being supplied with blood for a period of time. This causes the area of the bone involved to die. The word osteonecrosis literally means bone death!!!
Unfortunately not alot is known about the disease. It is estimated that 15 to 20 thousand people a year get the disease. There are different ways to get the disease, alcohol abuse,steroid use and other causes. My doctor thinks mine was caused by steroids that I took when I was being treated for severe pnuemonia.

I think I have been in the advanced stages of the disease for a few years now. Living life with constant pain is not my ideal of fun. See you later