First I must say I was shocked that my name was on posts when it has been many weeks since I have been on the computer. I read a few but I just don't have the emotional stamina to read them all tonight. I rarely get on the computer - it has become painful. I am sorry to those that email me (Sorry Janie- you are always so full of words of encouragement and I just have not got into my email
I finally am on Medicare and have a decent internalist who specialty is rheumatology and a rd that I think is good but he told me he cannot help me until I got on Medicare. I applied to all the PAP programs and still have not received any aide. Now I hope Medicare will pay for my Meds.
Now why I am on here. I just got my pred. raised to50 mg. a day. I don't remember anyone taking that much. Have any of you? Also, I asked if once I am again on a biologic if my function might improve. I was told not to get my hopes up as my RA is so advanced. I don't know for sure, but my RA only got severe five years ago. Does that seem realistic? That I cannot reverse where this disease has taken me. I am wheelchair bound now and go days at a time without sleeping or only sleep two hours at a time.
For those of you that do not believe me or hate me, please just leave me alone. When I come back for responses I need constructive responses.
Love to many of you and I am sorry that I no longer participate except when I selfishly want advice. I used to be addicted to the computer, never had a tv, now I just sit in a chair and watch tv. What a change in lifestyle.
To my old,old, friends - My dear weimeraner Tyler that I used to hike with, got out the free door, the wind had blown it open and I was up but did not even notice it came open. Tyler took off and got hit by a truck. He died in about twenty minutes. A woman there said take him to the vet, I said I am disabled I cannot drive. She said pay me and I will drive him, I said I am on a fixed income and have no money. She called me a bitch and said why don't you just go back in your house and go back to bed. The cops had to almost carry me in the house along with two nice people who brought Tyler in with me. He died about ten minutes before. I spent the night with him and prayed for him. His gf weimeraner Abby and Kelsey are really upset which makes it even harder. Remember all the beautiful pics I posted of him. Tyler was one special dog who is now buried in my backyard who I will love and cherish our time together until I die.Aw Roxy-so, so sorry to hear about Tyler. I remember his pictures and how much time you spent hiking with him-and he was with you all the time. What a uncaring neighbor, especially at the time of major emotional trauma.
I have been off the boards too, but just wanted to say hi. I have been wondering about you. At one time I was on 40-50 mgs a day, when things were really bad-but it was only for a few weeks. Hope it works for you. Love ya, Tara
Thank you Tara. I know you remember Tyler. He was my favorite dog of my lifetime.
I left out that this competent doctor told me that the medications I was on were very dangerous. I had a quack nurse practitioner, only one that would take me. Anyway, I told her about the nurse and others that said I would not live long. She told me. No wonder. The meds you have been on are very dangerous and should never be prescribed together. She took me off of most and that is one reason I am on 50 mg. pred. I hope I do not turn into a pred monster. Are you still in SF? I miss you sweetie. I hope you are doing well and your health has been improved. YOU SO DESERVE IT. I had these grand plans to go swimming but my family could not afford the 0 a month for oxy and that gave me the energy and pain control to get in the pool. I have an application into oxy mfr. to get assistance. I do not do well on morphiates. My new doc said we will fight to get me back on oxy but right now I have to live with percocet that my tolerance is very high tol
You are like a little sis Tara. I really do pray you are doing better. How is your Dad? Move to NM and vote for Obama Love youRoxy...I am sorry life has been so difficult for you these past five years. I wish I had some advice to offer you.Oh Roxy; I'm real sorry to hear about your dog. I know how much he meant to you. I', also real sorry to hear your health is so poor. I hop ethings will improve for you now that you have a new doctor.
Don't worry about seeing your name here. It was pointless for that one person to even drag that old crap back up. Just let it go.
Sorry to read about your dog. That is so sad.
I hope the pred works for you. I took 90mg for a bit. It kept me up at night but it did make me feel better joint/chest wise.
I will tell you I have missed you.
about the pred, my BIL was on a HUGE dose for a long wihile for his microscopic poliangitis.. He has Lupus, and pm, and nearly died. I think he was on 100 mg a day for about a year.
its so hard to go through a complete lifestyle change, but without sounding tooo sweetness and light, try to embrace it.
take care.
Roxy, what an awful lady that was. I'm so sorry you lost Tyler, it's so heartbreaking because they are like your children. My little Hoover died a couple of months ago, and our family is still grieving. My husband and I are legally separated as of last Fri. and I will be moving at the end of the week. I have to leave my other two dogs behind that I nurtured back to health after being badly abused - both were rescues. I am going from 3 rambunctious dogs that were my whole life down to none.
I hope you get the meds you need soon.
It is not uncommon to be on prednisone doses of 50mg or more, depending on the condition being treated. That's why it comes in 50mg tablets.
Hi Roxy...so sorry to hear about Tyler. I'm sure he was a wonderful pet and friend.
I was on 80mg of prednisone before..didn't stay on that amount for long though. AS much as I liked how good I felt while on it, I just didn't want to be on that amount.
I am so sorry about Tyler. He was one lovable guy!!! I'm glad you were with him.
Only thinking good thoughts and wanting things to get better for you
I'm sorry that you're having such a difficult time health and otherwise. Fifty mgs. is a lot of prednisone and I hope that you can start cutting back very soon. The biologics will slow down the progression of your RA but whatever joint damage you already have cannot be reversed. My Orencia takes care of the inflammation and the joint pain but I have joint damage in my shoulder, elbow and ankle and can be quite painful due to the destruction that has already been done.
I truly hope that things start getting better for you soon!
Roxy,
First I'm sorry for the loss of your dog, I remember what a big part of your life your dogs were. When your name was mentioned in another post I wondered how you were doing. It sounds like your daughter is back with you.
When I was on Pred., I also had to take that once a month bone medication, Pred. can weaken your bones and I wasn't on 50. Hope your drs. can come up with a plan.I feel better than I have in months. Right Now, I love prednisone. She intends to keep me on it until I get on a biologic and it starts working unless my rd disagrees. I have an appt. with him Nov. 8. I pray my Medicaire will start me on my biologic. I know it sounds ridiculous in my condition but I am still afraid of the IV biologics. I would like to try Enbrel again first. Did I say I LOVE PREDNISONE. I feel so much better, my hands work better. I could hardly extend my arms at all and I have a bit more reach. That is only two days on pred. WOW I don't even want to research what 50 mg. will do to this decrepid body I just want to enjoy the relief. So far as moodiness, I just feel pure joy and relief right now. Binge - I was hoping most to hear from you. We will find out how much damage once I can get MRIs again. I had virtually no medical care for the last year and tests - what a joke. NO WAY. But now with Medicare I am praying I will get the verdict on how much damage in permanent. I have had swelling constant for about a year so it has been hard to tell how much is deformity.
To all, thank you so much for your condolescents for Tyler. I think when you get knocked down so many times you accept tragedy better. He was not as happy since we quit hiking even though I do have a huge dog run and he had his gf Abby. He was also going blind. I take solace that I think he was in shock and no pain and I was there to pet his head and talk to him. I have my other three dogs and Abby will always miss him to play but she gets a lot more attention. My little dogs now get toys as Tyler would steal them from them. I don't want to pretend that I do not miss him because he was the dog that got the most attention and love. He was exceptional, but I pray he is in a better place and now I can manage things better. I like to believe we will hike together someday again.
Thank you all for telling me 50 mg is not so unusual. I am just taking it one day at a time. I have a terrible memory now and your reminders really helped.
I am just high on this pred. So much better than pain pills. I thinkI will try to read some posts and Idoubt I have any good advice but try to reply with encouragement. Thank you all.
Hi Roxy,
In the beginning I was on 60 mgs for almost a year. I am glad it is helping you function at present.
I too remember you talking about Tyler and am so sorry to hear of his passing. It is so hard when a pet dies. I'm glad you have your other dogs to comfort you.
God Bless,
Crispy
I'm so sorry for your loss. There seems to be quite a few of us who have lost pets this past year. I'm so glad you were able to hold him, and talk to him in his last moments. I really believe it comforts them to hear their "mommies" in the end. And I truly believe we will be reunited. LaRoxy, I'm so sorry about your dear Tyler. I know he gave you a lot of love and joy. He was a special guy. It's good you were with him. I know he felt you there and was comforted. I, too, believe you'll hike together again. I'm sure he is waiting patiently.
I was glad to see your name as I'd been thinking of you lately. I hope the pred. keeps working as well as it is. What relief to be able to move more easily. I know no one likes to be on pred but I am sure you need to have the relief it brings, hopefully until you get on a biologic that works well.
Medicare should help you with the care you need. I can't belief how much lower everything is from my old insurance. I used to pay 1640.00 per month for my husband and myself for private insurance. His is still 859.oo and he doesn't use it enough to even satisfy the deductible. But I have a Medicare Advantage Plan, an HMO, and they have treated me very well. I've had extensive tests done over the past year and a half, and they haven't fought allowing much, at all.
Please keep us posted. You still have friends here.
Much love, Nini
Aww, Roxy. I too am so sorry to hear about Tyler. How very sad. Hopefully he did not suffer. How sad that your neighbor is like that. Thank you animal lovers that do understand. I think of Tyler often now but I remember the good times - when I was an avid hiker and he would run up and down those canyons and jump from twenty foot high rocks into the water to swim. Some of you know he got bit by several baby rattlesnakes and almost died. We paid for the antivenom and found out later it could cause blindness. Sadly that is what happened. So besides quitting hiking, he was still rambunctious but could only detect motion or use his amazing nose to get around. That means he had many heartbreaking accidents running into things, many times injuring his head. He never gave up but he was not the happy dog he used to be so I am trying to tell myself that he is in a better place and he lived his life so dearly loved.
My RA has been relieved much of today but tonight I am feeling some again. The wierdest thing now is I realize my symptoms of fibro. Before the RA totally overwhelmed my fibro. This afternoon my muscles were very achey and had flu like symptoms. I got off Lyrica as it was not paid for, got free samples and my nurse practitioner - I had thought he was a physician asst. was getting low on Lyrica samples. I do not really know if Lyrica helped, in the beginning I thought it would but I hope to address this at my next doctor appt. It is such a hassle to go anywhere. I need help in the shower even though I have a chair and hand held shower. I still find it very humiliating and embarrassing so I usually do just sponge baths. Then dressing, I eat next to nothing but with the inactivity I have gained weight. My last health aide put my clothes everywhere and my new aide has trouble finding clothes I can wear and then Of course I need help dressing. By the time we get me in the wheelchair, put together everything that is needed at the doctor, I am exhausted. My wheelchair is not electric and I have to be pushed as my hands are very painful. That is why I had to give up the cane. Anyway, sometimes my aide has to push me into the clinic and leave to park the car. I hate asking people to push me when I am in line.
I still have pride but I am a person that just has resigned to Let go and Let God. I have lost control of my life. I pray that Medicare may change that.
I enjoyed reading many posts today. I responded to a few but my so many of you I do not know anymore or maybe all the drugs have made me forgetful. I remember when I considered AI my family of sorts and did not know about boards. This was my first one. Anyway, so many of you got me through the devastation of this disease and I will always be grateful. My emotions ran high then, I think I have mellowed. I have to admit the only thing I get passionate and opinionated about is politics and watch them almost 24/7. I usually can only sleep in 2 hour intervals. I worry when this election is over, what am I going to do to keep myself entertained. Hey, Lovie - I took up knitting - it is slow and I do not know how to make anything and can do it for only short periods of time but I find it relaxing. Who knows - maybe I will try puzzles. WHO KNOWS - maybe my health will improve and I will be able to do more.
My last time posting I told you all I was going to start swimming. Well, that lasted a week and then it just became too hard and painful to get ready to get there. Now on prednisone, my aide and I are going to try for Friday. I hope that works out.
Well this is just one of those late night ramblings but I do want you to know I enjoy reading many of your posts. There are still a few mean people here but for the most part, it is a good hearted board. Thanks for letting me share - I have not made friends here as I am homebound so guess I just long for a conversation. Take care all and be brave. My case is a worse case scenario I think so you newbies, don't worry you will end up like me. Maybe if I would have taken it seriously 12 years ago that I should get checked out for RA, I would not be in this position.
roxy2008-10-09 01:49:25Good for you on the knitting Roxy. If you use really heavy thick yarn you can do just the plain knit stich and it looks good. It sort of hides any mistakes. I still like just the plain old knit stich best....you don't have to think so much. Keep at it.....it gets easier the longer you do it. I still only make scrafs and blankets. Can't seem to follow any pattern.....I just do it to keeo my hands busy. I honestly think it helps with the motor skills. It's good exersise.....even if you only do a little. Yes Lovie. I juse big needles and big yarn. I just do it as it is comforting. I think I will try fro hot pads and wash rags. It is fun.
My attitude has taken a complete turn around. I can actually walk to the kitchen and pour me a cup of coffee. I feel like a completely different person. I can actually see my hands. Wouldn't it be wonderful if pred. were good for you. I needed this break! I am so relieved. Cut way back on pain pills and the best news - FINALLY - I GOT MY FIRST EMBREL SHOT YESTERDAY!!!!!!!!!!!! I am so glad I never followed throughh with those nagging suicidal thoughts that would pop in my head. One day at a time but these days - I think I am going to try to walk a bit more. It is very cold right now and that cripples me up but I am praying to get in the pool next week. It is just getting ready to get out. I actually am going to try to take a shower on my own - using my chair. I am a totally different person !!!!!!!!!! Hi Roxy
I'm so glad you are feeling better!!!
I bet the pool is going to feel great! I agree with Lovie, keep the fingers move'n
Alway wishing you well from here, Roxy!!
Good wishes from here too.That's good news Roxy. I'm glad to hear you're feeling some better.
Definately keep moving. Even if it's for short amounts of time and short distances.
I was him horrible pain this morning about 5:00 due to my hips. I got up and took some pain medication and was able to sleep a couple more hours and then finally just had to get up. Once I was up and moving around a little while I felt so much better. We all need rest....but too much isn't good for us. It actually has the opposit effect. We stiffen up like concrete is we stay in one position too long. I know it's hard.....but keep at it Roxy.
Sorry to hear about Tyler, Roxy. I know how much he meant to you. I am sure he is in a much better place. No more worries for him not being able to see. Now he can see.
Glad you are doing a little better, FINALLY! But sorry to hear that it took 50mg of pred to make an improvement for you. Enjoy it!
Hi you guys, This may be difficult because I have colored lines all over my screen.. If any of you have any advice (computer) I wold love to hear it. One thing I have in common with Mc Cain = only thing lol = is I am not very computer literate, especially problem solving.
I am in a good mood. I have been VERY busy as I have been to doctor appt. after doctor appt. since I got on Medicare. They cut my SS drastically but my Social worker says I will get that money back as I should not be paying a premium as we are so low income. I was just told it could take up to the 3 months. Bills and house payments getting more behind. I don't know how you feel about bail outs for homeowners but I am praying I do not have to move. I have two extra bedrooms. One I want to keep if I need 24 hour care and the other is very small which we made into an office in case I can ever start teaching reading again. We are also in a good neighborhood which is very important to me because of my daughter's mental health issues. Also, just the thought of a move and losing everything - I put everything I had into this home inclding my retirement - which I had to cash in - thinking my house would pay me back in equity. Of course my house is worth a lot less and I owe my brother 50K to buy this house. If I lose it, he loses his money. So I am sure there are many people that are very against bailing me out but I see it, if I can get my house payment down a couple hundred - I can continue to pay. That is better than another foreclosure that will hurt my neighbors and contribute to the collapse of this economy. Sorry for getting off track.
Healthwise - so much better. I still have a lot of muscle pain - I don't know if that is from the extreme reduction in swelling, permanent damage, or fibro. I am taking less pain pills YAY. The higher pred. has made my ulcer much worse. I go to doc tomorrow and we will see what she says. I have also gained at least ten pounds in only two weeks from constant hunger and compulsive eating from pred. I hate being fat. I do so much more for myself. Yesterday at the doctor's office I actually used a cane and let my aide leave to go shopping. What amazed me was the difference in my personality in a doctor's office. I have spent the last two years spending most of my time crying with my head down in shame. Yesterday I was so friendly. I could not quit talking and joking. I think it is my loneliness. I rarely have conversations. My aide is so busy when she is here that we do not socialize. I quit family gatherings months ago as I did not want to be a drag on them. I have never been lonely - I have always been a bit of a loner but boy do I miss smiling, laughing and stimulating conversation. I miss contributing to society. I was down for the count after the tests, bone scan, MRI and mammogram but it felt so good to finally feel like I was getting medical care.
I get up and make my own coffee. I ask for so much less help. That feels great. I have not gone swimming yet as I am playing catch up on responsibilities, between Kelseys and my doctor appts. - I run out of spoons. I am hoping to start swim next week. Lovie, I am doing more around the house and my favorite is I have been showering alone. That is so humiliating.
My improvement is probably more pred. but for those of you that have known me long - I have had one Enbrel shot - last time it took effect right away. I am praying and will take prayers - that some of my improvement is because of the Enbrel. I cannot stay on these amts. of pred for long. First I will become obese, my ulcer is very dangerous and my pred. caused the ulcer and we all know the long term side effects of pred. are no fun.
Still have not been approved for my oxycontin. I have two days left. I pray I do not get taken off it because the alternative is methadone.(I think that is what it is called but it seems like it is a longer name. It is a drug they use to get addicts off drugs but also a painkiller and cheap. If it effects me anything like morphine my life will be getting sick, mindless, sleep constantly until the pain wakes me, more morpine then back to sleep. NO LIFE> That scares me.
Brett came over to work on helping me get things out of a room stacked with boxes so I can sell things. I was in such a good mood and so grateful. Long story short - I forgot to take my drugs to the bathroom and when I came out I quickly checked my med bag. The med boxes were gone. I lost it. He stole 1.5 days worth of oxy. I beat myself up by losing it and hitting him hysterically. Then I called the cops. I was devastated. He went to jail and tried to make me feel bad and I did as I should not have him over but I have no one to do lifting. I could not put my days meds in safe as my hands do not work well enough. Anyway the cops called today he is out until he goes to court. He lost his job. He got kicked out of the room he was renting. I let him come over to get clothes I picked up from his room as they were going to put them on the streets. The cops said they would be nearby. It was hard. He was apologetic but it meant nothing to me. What did bother me was he is now on the streets. He begged to sleep in my garage but I told him I did not trust him even near my property. It is my house in my mind as it is in my name and I have made all the housepayments. If we ever divorced - I don't know if he can hurt me as I owe more on the house than it is worth. Anyway, I feel sad about all homeless but it was hard to see him leaving knowing the man I loved so deeply was sleeping on the streets but as I told him - it was not me calling the police that put him in that position, it was his taking my meds and being high on them when cops came. He chewed the oxy that is slow release so he got very high very quick. Anyway, back to Let Go, Let God. He has never been homeless and I pray this is the bottom they talk about at AA that may turn him around. I wish the best for him but I will not allow him to adversely effect Kelsey and my life. He has done a lot of physical things on the property without being compensated but the gratitude feels erased by his actions.
So I did another Dear Diary. Sorry. Just don't read it. I am admittedly lonely and come here to get things out there on my mind. It is probably inappropriate as usual but please ignore me - things on my mind need an outlet and I am sorry it comes out here.
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