My New Life

No Luck in New York

My trip to New York was a bust. It was a very long day only to be very disappointed in the end.

We left Baltimore at 7 AM. We arrived in New York just about noon. After fighting traffic and being in pain my nerves were already shot. We found a parking building at the hospital, and found it was going to cost us $52.00 for 4 hours.

Once in the hospital they sent me right away to get x-rays. That was the quickest part of the day. I took them back to the doctor's office and then we waited about 3 1/2 hours to see the doctor. He looked at my films and said there is nothing anyone here can do for you.

Let me start by saying those doctors do not believe in Core Decompressions and because I have had so many they said my bones are SWISS CHEESE. After their explanation I understand what they are saying, but that doesn't help me now. My bones that are already dead are now even more frail from all the holes drilled in them. The doctor did say he would look at new MRI films and suggest what he thought may be my next step, but they wouldn't do it. He also said I might as well come to terms that I will always be on pain medicine. He said my AVN was bad but having Osteoporosis as bad as I do, only makes matters more complicated.

Needless to say by the time we left the hospital at 6 pm I had had it. It was rush hour in New York. I was upset and it wasn't a pleasant ride for my husband at all. I must say he is a real trooper and never complained once. He kept telling me we would find someone to help me. We arrived home a little after midnight and both dropped into bed.

Please think long and hard before having more than one Core Decompression. Ask the doctor what this will do to you if you do have to have replacements later down the road. If only I had known.

Well back to square one, I won't give up.

Getting Excited

I am starting to get so excited about my trip to New York next week. You know it's bad when you get excited over seeing a doctor. All I keep saying to myself is I would not have won the appeal to see the doctor for it to be a bust. I have all my paperwork and films ready. Now all I need is for the 15th to get here.

My pain has really not let up at all. My Rhuematolagist has written a script for Avinza, a new medicine for me to try. He said it is a different form of morphine and it may help me more. I have been on the same strength of morphine for over a year and it is no longer helping at all. I am getting it filled tomorrow, so let's pray it helps. If it helps maybe I will be able to get some sleep. I forget what that is like. The pain is so bad at night that I don't think anything will help.

I just made our summer vacation reservations, and I want to be able to enjoy it this year.

I will keep you posted.

Finally an appointment

Well it seems like it has taken an eternity but I finally have an appointment with a doctor in New York, at HSS. I will leave Maryland on March 15th early in the morning and my appointment is at 4 PM. I am praying that this is the answer I have been praying for.

I have been in so much pain lately with all the snow and weather changes. I just want to make a doctor understand that waiting is not always best. I would rather have the replacements NOW than wait and stay in pain. I would rather enjoy my life now while I am younger than wait. OK so what if I do have to have another replacement in 20 or so years. I would rather enjoy my life now while I am still young. This is what I am hoping to get across to this doctor. From what I am told he believes the same.

I still have the right hip and both knees that need to be replaced along with something done to the left femur. I don't want to live on pain medicine and wait for collapse. I want some of my life back now.

The morphine has quit working and I don't want to have to keep raising the dose. So keep your fingers crossed that this will be the answer to a long awaited prayer.

Another Doctors Opinion

I went to see my Rhuematologist on Friday and he has yet another take on this whole matter. He wants me to see a new pain doctor instead of the one that I had seen. He agrees that I should go to HSS in New York for there opinion. I am glad someone is finally listening to me.

He x-rayed my hip and said there is some swelling and if the pain in the groin has not changed by the end of the month we will do an MRI. He really thinks it's OK, just trauma from the fall. Oh and he insisted on the flu shot.

I have had little to no sleep in the last couple of weeks and my body is rebelling. There has to be an answer to this.

Well, I am off for a soak in the hot tub. At least I am pain free for about an hour.

Same Old Thing

I haven't written in such a long time because I seem to keep repeating myself. I have been in constant pain for the last couple of months. I have been to two (2) new doctors and both have said I am too complicated for them and sent me on my way. I saw a pain specialist who seems to think that this is something that can be fixed with little to no meds.

Then last week I took a very bad fall on the ice landing on my replaced hip side. I had x-rays of the knee but they didn't x-ray the hip. I have been in horrible groin pain since. I am calling my family doctor today to see if we can get an x-ray of the hip.

It looks like I may have to travel outside my home state to see another Ortho. I am in contact with my insurance company now to see if this is possible. There are 3 good doctors in my state for AVN, but they all believe in the same treatment and that is repeated Core Decompressions. I have already had 7 and in my opinion each one is weakening an already dying bone.

On top of all of this I was just diagnosed with severe osteoporosis. I have started taking Forteo injections daily to help rebuild the bone. The pain I have been in is unreal.

I try to put on a happy face and not let on how bad it is but that is becoming harder and harder to do. I only sleep about 2 hours a night and that has been for the last 6 or so months. That is taking it's toll on me too. Sleeping pills don't work. Tthe pain outweighs them. I am still on the same pain meds I was on a year ago and my body has built up a tolerance to them so they are barely working.

I feel so lost and really need a good doctor, even if it mean starting from from the begining.

Bad star to a New Year

What a bad start to a New Year. First I find out that I have severe osteoporosis. Then yesterday I find out I have GERD and possible Barrett's. I have to wait for the biopsy to come back next week.

My AVN is acting up so bad and I am still without a doctor so to speak. I saw another doctor and he wanted to do another CD on Monday but I have cancelled that.

I see my Rhuem. tomorrow and a pain specialist on Monday. Maybe I can at least get some relief soon. I am still searching for a new doctor and hope to find one soon.

Happy New Year Everyone.

Merry Christmas

I know I am bad about writing, but it seems that I write about the same old thing all the time, pain and disappointment.

I had a bone density test done about 2 weeks ago. It came back that on top of having AVN, I have severe osteoporosis. My lower spine and right hip are the worse. As a matter of fact he is sure I already have a small stress fracture in the right hip. Always GOOD news, not.

The cold weather is here and it only makes the pain 10 times worse. My best friend right now are my heating pads. They go with me wherever I go. I have a car adapter which I can plug them into.

Still in limbo as to what to do next. The new doctor wants to do more CD'S. The old doctor is still in a waiting mode. I really don't want more bandaids and that is what I call a CD. I have already had 7 of them and I am right back to where I was before I had them. I want to be fixed, no more bandaids.

I hope everyone has a very Merry Christmas and a Happy Healthy New Year!!!!!!!

Disappointment

I hope everyone had a Happy Thanksgiving.

I saw the new doctor on Wednesday and much to my disappointment I did not get the answers I was looking for. I had such high hopes only to walk away more upset then when I went. He wants to do another bandaid (Core Decompression). I want fixes not temp. fixes. He wants to do a Core and scope on my right hip and my right knee. He said he does not believe in replacements for someone my age. I explained I have already lost 2 years from being in pain all the time. I would rather have the replacements and go on with my life than to live in pain. I told him I would worry about the revisions or other replacements down the road when I am 60 or so. He said NO.

I guess I am back to the drawing baord and either trying to talk to my old doctor or keep searching for one that believes in quality of life. There is a doctor in New York that I would love to see, so I think I am going to talk to the insurance company and see what has to be done.

So that is my news. I remain in pain with no answers.

So much pain

I am counting the days until I see the doctor next week. I know that nothing can be fixed right away but maybe a new medicine will get this pain under control until we can start on the fixes.

The weather had turned colder and all my joints went crazy. Then a sort of Indian summer came and I thought it would let up but so far that has not been the case. I spend the nights with 3 heating pads. I go to bed and within and hour or two I am on the sofa with the heating pads. My family doctor put me on a sleeping pill last week, but the pain is stronger and I was still only sleeping and hour or two so I stopped taking them. Why put another pill in your body when it is not helping?

I am becoming very discouraged since my ankles and shoulders had not been giving me too much trouble. The shoulders still aren't but the left ankle is really starting to act up. Maybe it is because the whole left leg is just so messed up.

Well hopefully I will have some answers next week.

Long Time

I guess nothing has really changed. I am still in so much pain and still have 3 weeks before I see the new doctor. My appointment is on Nov. 24th and I am counting the days. A question was asked how am I doing with the colder weather setting in. I can honestly say that I am not fond of the damp cold weather as it makes matter much worse. I use my heating pads daily and soak a lot more in the tub or hot tub. The cold sets in my bones so deep that it is hard to get comfortable. It was 70 today and we bought a ton of pellets for the pellet stove. I spend a lot of time downstairs with the pellet stove when the weather gets cold. I have put the car adapter in the car and am carrying a heating pad in the car for longer trips, a trick I learned last year.

I have been having a lot more right hip pain although this hip is acting differently than my left one did. With the left one I had more groin pain before the THR, the right I am having groin and back spasms. I am beginning to feel bone on bone when I walk. The left femur is spasming more and more so I hope the new doctor has some answers and we can start any procedures the beginning of the year.

If I don't post before I will post after I see the new doctor and let you all know where I go from here.

The ups and downs

Boy it has been a long while since I posted. Had to chuckle, the last one said going away for a while. I didn't think it meant this long. It has been a rough couple of months. The pain has really increased in my right hip and left femur. I don't know which one to baby more. I have had more MRI'S and a bone scan and still don't know which way to turn.

I am in the process of getting another opinion, which I never thought I would do and this decision has not come easy since I love my doctor, but feel I am at a standstill with him. I want to move on with my life, and I can't do that being in pain all the time. I am hoping this other doctor may have a more agressive outlook instead of the let's wait and see what happens approach.

So please get all the info you can and never feel you are stuck with just one answer. It has taken me two years to get to this point and maybe it has been 2 years too long.

Going away for a few days

Just a quick note to let you know we are going away for a few days. Really have not found out too many results yet from my test, but hope to next week. I will be taking the wheelchair and trying to enjoy these few days. See you when we get back.

The doctor called

Well about 6 this evening the doctor called with the results from my lower spine MRI. He said from the report it looks like I may have AVN/ON in my lower spine but we need to see the results from the bone scan. I told him that I had that test done today but could not do the other and will have that one done next week. He is calling for the report from the MRI of the right hip and I am going in to see him tomorrow so I will know the reults from that. Now from what I have been told there is nothing that can be done when it is in your spine. These are all questions that I will be asking tomorrow. I am trying to stay positive that maybe just maybe the bone scan will show something else. I will let you know tomorrow.

I was so happy that a few people wrote to me about having AVN/ON. Anyone please feel free, I have found that it really helps to have someone to talk to that understands. That is one reason I belong to a support group for AVN/ON. The link is posted on the side of this page.

I have tried to sleep tonight but again just cannot get comfortable. I know it sounds crazy but I am ready for another operation if it can take me out of some of this pain. Well until tomorrow.... Wish me luck.

Only one test

Well tomorrow I go for more tests, a bone scan with dye and a bone density test. I made it through the MRI'S on Monday. It was very painful to lay there, but I held my breath and made it through.

The pain has not let up and I fell twice yesterday, once going down the basement steps and once on my outside steps. This just added some new bruises to my elbows and knees. My leg just gave out both times.

I have been trying to stay busy and keep my mind off things by staying busy with my support group and the NONF. I have had to take more breakthrough pain medicine lately and I don't like to do that. I try to take as little as possible, but that is just not the case right now.

Hopefully I will be able to tell you the results of all my tests in the next couple of days and they will be able to ease my pain some.

Again if anyone has any question feel free to ask. I would love to talk to you.

So much pain

It is 2:37 am and I have been awake for about 1/2 hour. I woke in so much pain I screamed. I am suppossed to be at the hospital this morning at 5:45am for MRI'S of my lower spine and right hip. Right now I am just so sick to my stomach from pain. The doctor had started me on a new pain medicine and sleeping pill on Friday and I thought they were working but I guess I thought wrong. The pain out does the sleeping pill, and another problem is all this medicine causes constipation. I just cannot win. I am so sick of being sick and in pain. You know I keep saying why me, what did I do to deserve this? I want to wake up and this all be a bad dream. Am I still in denial after all I have been through?

I know it will be a waste of time to go this morning. I will never be able to lay there that long to have the test done, but I will try. I will let you know later if I made it or not and how it went.

If anyone reading these ever has any questions please feel free to ask away. My family doctor said on Thursday I knew more than he did about this disease. I told him all I do is research and hey I live it. He told me I was the worse case he had ever seen. I told him thanks that is one honor I wish I didn't have.

Wish me luck this morning. Oh and my prayers are with everyone that was effected by the hurricane. I have no right to complain after what you have been through.