First, I posted this in the wrong place. Guess I was a bit upset.
I saw the Rheumy today for my followup on whether I can return to work. I also told him about the muscle weakness in my legs and the excessive tremors. He wants to do full xrays of the back, and possibly send me to a neurologist. But he agrees that this probably isn't the knees. We might have to do a neck MRI, but I want to hold off on it as much he does.
My sed rate was up to 40, so finally he thinks Enbrel isn't helping me at all. I only told him that several months ago and with all this increasing joint damage, I don't see how it could be. So, I'm supposed to stop the Enbrel and we'll see how I am in a couple of months. No, we're not replacing it at this time with another medication. I kept telling them that I was flaring badly. But they just wouldn't listen. They did blood work on my MTX levels. That's got me worried because they've already taken me off a couple of times before. I can't handle them going down on that and I'm still tapering down on the prednisone. I'm finally down to 12 mg a day. I was up to 20. I've never been lower than 10.
I did get the note saying that I could no longer work as I am disabled. I really needed the note. But it sucks to read it. It is the tool I need to get the help. And, part of me is thankful. And part of me is so angry because I fought getting to this point so hard and nothing I did kept me from getting here. I feel like I've failed or lost a fight. I just hate to lose a battle. But this body just won't cooperate.
I know that it's all about perspective. But I still didn't want to get to this point. I absolutely dread telling my job shop and my boss. I guess I have to do that tomorrow. But it will get things rolling and I can finally close the door on that chapter of my life.
I was so hoping I was past worrying about my back being a problem. He asked how far I could walk and I told him I can't even do grocery shopping any more. He asked, "well, what do you do?" I answered, "I haven't grocery shopped in a month." "You going to have to do something," he answers. Like I don't know this already. Then, I start crying because I don't have anyone to do this for me. It's not like they offer any suggestions which seems stupid to me because obviously I am not the first person to be in this position.
Then, their office staff hassled me about my unpaid balance, which is less than a 0 now. And, I've been paying 0 a month FOREVER. I told them, I not working. They still insisted that a pay part of it. All I can think of is then GET ME WELL!
He thinks I can probably wait on the knee surgery until my LTD kicks in. His assistant told me the opposite thing. He doesn't seem to think the damage is that bad in my knee. So, Monday, I'm going to get an opinion from the Ortho surgeon and decide from there.
Oh, and my blood pressure keeps going up with every visit. I'm on enough medication. I'm sure that's all the stress.
I hate this.
Oh Deanna....
My heart goes out to you. Truly. I recall how devastated I was to have to leave work and had to file my disability paperwork. It was very, very sad. &n bsp; &n bsp; &n bsp; &n bsp;
All of the "hassles" like the "filing" for disability, needing medical help and not having all of the money you need for that, etc., etc. On top of it all..the meds don't seem to be helping!
I am very, very sorry. I recall how "torn up" I was when I'd had to quit working, when I could not pay my medical bills, when I could not buy my meds, or anything! I did not live near my family. I was single and live 4-5 hours of a "drive" away from any family. I was very "determined" and had sold most of my belongings..anything I could sell in order to survie while awaiting my disability approval. You will be okay, ultimately. Yet, it really does "stink!"
This is when I'd really had to learn what it meant to take life day-by-day..somedays, I'd had to take it "hour-by-hour!" Do you mind, Deanna, if I pray for you? I believe in prayer and I'd really like to include you and your welfare in my prayers. It is truly one of the best things I can do to try to support you during this time. I'll also be "around" here to try to be supportive! It is important that you allow yourself to grieve if this is what is "surfacing " for you. Allow yourself to feel all of the feelings that are coming up for you. It's the best way to manage so many emotions and not let them get the best of you by "stuffing them deep inside!"
Wishing you deep inner peace.... Hopeful, I will be most happy for you to pray for me. I need that more than anything. I don't have much any more to even sell. I've had a lot financial troubles over the years and a lot of them were do to medical problems. I lost everything I owned the last time I tried to apply because I believed my family would help me. Instead, they took everything I owned. It's a good way to get rid of old stuff. But it leaves a lot of hurts behind. I don't recommend that. Fiona, I am really angry at my doctor's attitude. I feel bad how you and your family was treated. They have been the same way with my Julie, completely unwilling to help until they had no choice. But what happened to you sounds positively inhumane. I don't understand about the Enbrel either. He said something about wanting to be sure if it is working or not so I go off of it and feel worse, I can go back on. But he kept emphasizing that it is such a strong medicine to be on if it's not working. I asked him if there is going to be something else for me in a couple of months. He assures me that there are other treatments for me. But I don't think this is the approach other doctors have taken with taking someone off one biologic and putting them on another. I have been on high doses of the prednisone for 6 years. But they are worried, if he even remembers, about me getting bone necrosis. Before he was really hammering me about going off of it. Now, he's saying go off very, very slowly. He just doesn't listen. Can you believe my RA blood work came back negative this time? I've contacted the Mesa Seniors Organization because I was told they have case managers that help you sort out all these things. But they don't. I have to be very specific and maybe they can help me with things. I have to rethink what I'll do there. Since I live in a Senior Park now, I think I'll aske around here. There are some nice people here. Maybe they do what I can do. My experience with churches out here are that they are very cold and they preach great sermons but are very self-serving. I've been burned several times now. I may contact them as a last resort. Salvation Army and the Catholic ministries are the only ones I've ever found that will really do something. But I do intend to ask. As you say, Hopeful, I have no choice now. Hillhoney, I do feel like the doctor is giving up on me or seeing me as a failure or as his failure. But it seems to be some problem within him that I don't understand. The next time I go in, I will see his assistant again and I'm going to out and out ask her what the problem is because he's been a great doctor up to now and I do not feel like the last six months that I've been getting very good treatment. I don't want to change doctors in the middle of all these other changes though. I want their paperwork into Social Security and the notes I need first. Then, I think I will have to change because obviously they are not willing to work with me on my bills with them. I am worried about my back and the tremors and I'm supposed to get the xrays but not bring them in until my visit in October. I kept emphasizing that I can't hardly walk or can barely drive. That one of the main reasons that I'm going to talk with the ortho surgeon on Monday. Maybe he will have some better idea about everything. I've heard of peapod.com. I just checked again. They are still not available in my area. There are two grocery chains that do deliver, but it's about a charge. One has prices that are just too high and the other never has really good produce in their store. But they do deliver. I may still use one of them. Today, though, I'm taking my daughter to the local food bank where you can get worth of groceries for . Hopefully, I won't need to stand in a line and someone can carry the box to the car for me. My daughter can't because of her own severe back problems. This will help her out and help me with the fear of doing it. If I can't do that then I will have to order the food online. I did have something remarkable happen this morning. I got a phone call from my ex-boyfriend. Oh, I wanted to call him last night. He's disabled because he's blind and I knew he would understand everything I'm going through. I guess we still must have some connection because he felt compelled to call me and see how I was doing. Seems he really is missing me and is thinking he still might make it out AZ way. He does have some things to sort out though first. But it cheered me up some that he thought of me. But you, here, are much better at encouraging me because you know what it's like from the inside out. I know, I know, I'm going to be okay. Today, I have to call my job shop and my boss. Not looking forward to that. But you have to start with the first steps. Wish me luck. This is when I find out how much I will get, eventually, from my LTD and what to do about health care. I feel like I'm in the middle of a whirlwind. First, I got awakened this morning by my ex-boyfriend calling me. Then, this very good friend of mine from India that I have worked from in the past emailed me out of the blue wanting to know how I was doing. He very graciously got me medicines from India in the past and I think he is offering to do so again. He is the sweetest guy. Then, I had to tell my job shop. And, they were very nice about things. They sent the forms for the LTD and put me on COBRA for my health insurance. I won't have to pay anything for awhile and only at 2% more than I was. Unfortunately, that will not mean I can meet the continuing medical bills. I'll have to work something out with that. Maybe the state will pick me up for insurance when I file for SS. I really hope so. Then, my boss sent an email asking me to do another project and I had to grit my teeth and say I couldn't do it because the doctor said I couldn't work any longer. Then, she called me up and of course, I had tears because this is so damn difficult. But those two things are done, except all the paperwork of course. But the emotional part is done. I'm going to try to go into work one last time to clean out my desk and drop off some tools. Maybe they'll take me to lunch. That would be a nice way to say good-bye. At least that is what my boss wants to do. I think she finally realizes she's been pushing too hard. I got the xrays done on my back, but they didn't put the report in with the films. So I don't know. One spot looks bad, but I had OA in one place before. Hopefully that is all it is. You should see my kitchen table. There's a stack of about 20 different films covering the last 6 years. And, still some of them are in the hands of a couple of doctors. And, I thought I looked wierd on the outside. After that, I didn't make it to the food place. I just keep having the thought go through my head now, "I'm unemployed. I'm unemployed." And, it feels good. I've been killing myself so long. I'm trying to convince myself that it is "early retirement" like I really rich or something and could afford this. But obviously, I can't. Fiona, I am going to check the Meals on Wheels because they do have that and sometimes I cannot do this for myself. I will at least get the information set aside so that I know what is involved. I'm also going to check on if I can get occassional help with cleaning as that's become really difficult. But maybe I get better now that I"M NOT WORKING!!!! Roxy, I don't grieve losing this job. I've wanted out for a long time but was forced to stay in this particular job because of my disability. I couldn't switch because they were willing to let me work shorter hours and I got at least some insurance. But there was nothing to strive for in the job except my own desire for excellence. It's a good company to work for. But I'm glad it goes to the past now. That actually feels good. I think that's a blessing. Some jobs were very hard to leave because I had such close ties with people. This job has never been that way. But it was over 6 years with the same company. Marisa, they do have Safeway here, but their prices are much higher than the other stores. But I think I'm going to be forced to do theirs. I'm going to check the other one first though. I do plan on doing some bartering. I'm already working on that with one friend. I need to get creative on that one. Thank you my dear friends. I starting to feel sane now. I was upset enough about finally getting the disability. But I wasn't expecting being taken off the Enbrel, getting more xrays. I knew my sed rate was up, that he might send me to a neurologist and that we might have to do a spine MRI. Still, it was a lot to take in. I forgot to keep breathing. I think all this is happening to me at once to force me to do what I need to do. It's being on this forum that has finally convinced me of the reality of my situation. This is not the ending point. It is a birth and a new life begins. I wonder how interesting this one will be. The last one was absolutely intriguing. My dear Deanna, I just wanted to add my good wishes to those of others who have written to you. Also to let you know you are in my thoughts and prayers. Your kind, comforting words are always there for everyone else, I just wish I had your gift of writing so I could send some of the words of wisdom which you seem able to offer so freely. Some of the members have sent some very good ideas which hopefully will be able to help. Be sure to check with your state, too. You are in AZ, aren't you? If you have no income or assets to speak of, you also should be able to apply for SSI when you apply for SSDI.If you go online the website will explain it to you. I don't know if you have already checked on that or not. Best of luck. Gentle hugs, Nini Deanna! WOW! I am with you and cheering you on! I just am too tired to write right now. My brains are "mush!" It has been a very long and a very painful day! Hope to get to write to you and all members tomorrow. I hope everyone has a restful and a peaceful night! Blessings to all!
With Deep Empathy and Admiration! Hopeful! Deanna, You can do this! Nini was right. For me, if I were not married, SSI would pay more with health insurance than SSDI. Now that is because I worked for PERS so long but 1.5 years short of a PERS retirement
My primary doctor is 110% supportive of my disability. I go see rd on Monday. I think he resents me for not going on Remicade. I want to know exactly what is happening before I make that decision. My muscles are my main problem. The strength and range of motion. My primary thinks the RA is under control mostly but I likely have another auto immune on top of it. The difference is - she has known me for 15 years. She has seen how healthy I have been and active. The rd only knows me as someone who STILL wants to feel better, but wants to make my own decisions about what treatments I decide on. I think it frustrates him. I could not handle Kelsey on pred. and I do not think pred. will fix me right up. It didn't before. So we take it one minute at a time, and lucky if we feel like it is a day at a time. Patience my friend. That is what ra teaches and I am a slow learner
I don't even know what to say to you. Doctors are necessary evils. They can be thoughtless jerks. I remember when my mum was dying, the doctor said she needed 24 hr. care. I had a three-year-old and was getting about 3 hours of sleep a night. My husband was on assignment for most of that year. My mum had to have a doctor's orders to get into a nursing home - you don't just go, or didn't at that time. I said - how's she going to get that? I couldn't pay for 24 hr. care. I had to take care of my child. Would he give me the authorization for the nursing home? Nope - not until my mum had a seizure, went to the emergency room, and then was hospitalized and they realized she had diarrhea non-stop, 24 hours a day, and that was what I was dealing with. Trust me, they didn't want to deal with it, either. THEN, when it inconvenienced THEM, they did something.
That's my impression of most doctors.
If Enbrel isn't working for you, and the joint erosions are continuing, how exactly is going off it with nothing to replace it going to help you? That makes no sense. Especially when you're coming off the prednisone. I hit a brick wall when I get to 5 mg. I can't get below it. And you've been on much higher doses for a much longer time. I don't get it.
I know you're not a senior, but do you have a local senior center? They might be able to give you help with your groceries. I think ours does that - it's for seniors and people with disabilities. It wouldn't be perfect, but it might be something. Surely, surely, with the hundreds of billions of churches that are out there, some people actually have a Christian heart and would help you? If not,shame on them. It's time to ask, Deanna, because you can't do it by yourself.
Deanna, what was his reasoning for not replacing the Enbrel with something else? I agree with Fiona, it doesn't make any sense at all, and sounds almost like he has given up on trying to help you. That's unacceptable!
With regard to your groceries, check out Peapod.com and see if it is available in your area. It is wonderful! You shop for your groceries on line from your local participating grocery store, place your order and get delivery the next day, usually for a delivery charge of about .00! It is set up so well that you can shop for the store's weekly bargains, use coupons, search on your favorite brands, etc.
My daughter uses it because she lives in a third floor apartment in Chicago, and doesn't have a car. Rather than fighting with bringing groceries home on the train and then carrying them up 3 flights, she uses Peapod. They bring the groceries all the way into her kitchen for her, and the quality of the meats, fruits, etc. (that we are used to picking out for ourselves) has always been excellent.
In Chicago the grocery chain that is affliated with it is Jewel, in New England it is Stop & Shop. You just enter your zip code at the website and it will tell you if it's available in your area. I really hope it is, because it would be a great solution for you - and everyone else that is having a hard time doing their shopping. I would use it if it were available to me!
We had a number of people who weren't seniors. Several were blind, some had heart conditions. I know it's hard for you to do that, but heavens, that's what MOW is for, and the delivery people are usually geniunely happy to help.
I do agree with churches, though - some are all talk and no action - which sort of defeats the point, doesn't it???
Deanna, I know how you feel - the mixed feelings about going on LTD. Everyday I grieve losing my work. I loved my work and I can't seem to get passed that. They say moving does not solve problems but I am hoping it will help me start a new life and quit dwelling on what I have lost. Thinking of you and praying for you too. Oh Deanna, I wish that things were better for you. You've had it rough for so long. Please ask your neighbors for advice.
I've used the online service for Safeway stores. There's a delivery charge but if I give them a 4 hr. delivery window, then they knock off . I liked the idea that they placed the bags right where I told them, on my kitchen table. My ice cream wasn't melted and they did a nice job of picking out my produce. I only had to throw out one piece of fruit. Plus they have a personal shopper that fills your order. I just gave them instructions and I got what I wanted. The only down side was that I had to use my credit card to pay for the order. I don't like to put alot on the credit card.
I agree with the others, that it seems funny that they are taking you off of Enbrel and not placeing you on something else.
As for the LTD, I know that I'll be facing that down the road. I've stress myself out about it and in some ways I want to go on it now and again I don't want to give up my job. But after reading everything that everybody has posted, I've come to the realization that I can't change what is to be. I've learn to face it headon. I just pray that I'll be smart enough to realize when.
The money sitution is a rough one especialy when you have almost nothing to start with. Deanna, have you ever thought of the old fashion way of bartering. You have skills and if you could exchange one of your skills for somebody elses skill, then it becomes a win-win sitution. It's just something to think about. I do the barter thing with my roomie alot.
Will keep you in my prayers,
Marisa
I'm glad people are reaching out to you.
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