Latest saga - danger of pain pills | Arthritis Information

I am amazed I survived the winter. I really did not think I would make it to Spring. I have very severe RA but I am so much better when the rain stops.

My biggest issue is I have not been able to eat in 3 months. I live on Ensure. I was not able to walk all winter but Spring has sprung and surprisingly I am walking again. The problem with eating has been a long and scary road. I could not talk about it except to my dear family as I was certain I was dying. 6 months ago it became difficult to eat. I did not understand but I could get fewer and fewer bites down. I kept telling my doctor who rushes me every time because I get maximum 15 minutes and she just keeps blowing me off. I started getting pain when I ate so badly that I went to the emergency room several times. I was certain I had stomach cancer - I watched my grandmother die from stomach cancer. When I ate just three bites - I would start dry heaving and it was too painful to eat more - then when it started digesting I got these horrifying cramps in my intestines. The emergency room doctors would give me nausea medicine, tell me to give my stomach a break and to drink Ensure. My regular doctor - who I do not have much of a relationship with (it is very difficult to get a good doctor in my area - there is a shortage AND when you call to try a new physican they ask you if you take narcotics and if you do they tell you they are not accepting new pain patients

My doctor upon consulting with the emergency room doctors schedules me an upper and lower GI. It could not be scheduled for 2 months. When I went to the gastroenterologist he told me he would like me to only use twilight anesthetic because I was on such a high dose of oxycontin and percocet. That means I would not feel anything but he showed me a film of the procedure and you are awake when they put the tube down your throat and they ask you to swallow. I spent 1.5 months stressing over what it would be like to have that tube put down my throat. I have a terrible gag reflex and it freaked me out horrible. My family was really worried I would not get the test done. I was also very scared because I was feeling certain (idiot worrier I can be) that I had stomach cancer and watching my grandma die was terrible. I had not slept more than two hours in months - I was up all night every night on only a couple hours sleep because I was having panic attacks I am told. I would wake up covered in sweat and could not breathe so I dreaded sleep. Imagine not being to eat or sleep and in severe pain every time my pain killers wore off. I was getting very crazy

2 weeks before the procedure my brother told me to call the gastro enterologist and tell I could not do the twilight anesthetic. It was scaring me too bad. THANK GOD. I should have done that sooner. The doctor got in a really good anesthesiologist and he was going to do the MAC anesthetic. Why I let myself suffer from the nightmare of that tube down my poor tender throat while awake was ridiculous.

I had the upper - lower GI. I was so relieved when it was behind me. Prior to the procedure, I cut my oxycontin 2/3 on my own to prepare for the anesthetic. I came home from the procedure very very high. They just gave me the same opiates as I have been taking to put me under but they had to do a really high dose. Not eating also makes the painkillers get me high much easier - I hate being high - I left that behind when I was a youngster - all I have left are my brains and only extreme pain bothers me more than impaired thinking

sorry for the rambling but I am not the writer I used to be .........................

THE POINT ----- Gastroenterologist calls today. They did several biopsies and I am cancer free. He told me what I should have figured out on my own - being a biology major. The drugs have effected my stomach and intestines and they are no longer doing the muscle movement that pushes food through your digestive system (stasis)- this is because of the painkillers. That is why I am not able to eat. My stomach does not open for the food because it is not responding properly due to the drugs. If I can squeeze food in my digestive track is not moving the food through it properly. Thus the pain. He asked me if I was willing to get off the drugs. I told him I would love and it would be easy now - since summer is coming. He was surprised I got off the oxy on my own. BTW - I also quit smoking because it became painful - one blessing.

Now I realize there is a chance I may live. My family has all been prepared for me to die as I have been so horrible sick - chair ridden and barely able to talk as I was weak and depressed. My step son Colton who lives with me has been the only one that kept saying - he did not believe I was dying. He gave me some hope.

So today - a beautiful sunny day - I woke up the best yet. I stayed in bed all night - which is amazing to me. I still woke several times but was able to go back to sleep. I woke up wanting to LIVE

NEXT MISSION - move to AZ. I am selling EVERYTHING I own. Being so sick has made me realize possessions are really meaningless - health - a beautiful day - that is what I want to live for. SOOOOOOOOOOO - my old friends - I am selling everything I own. I pray the house sells before the first drop of Fall rains. A rainstorm is like impending torture for me. I can be feeling good and it turns cloudy and the pain starts and then agony. I do not even not what it feels like to get cold any more. Cold is only pain to me - if I get chilled at all - I am in pain. We have to keep our thermostat at 70 and still wear sweaters and have blankets on me. SUNSHINE. My prayers and heart tell me that I have to move to the sun - I don't care what kind of roof over my head as long as I have a yard to sit in and suck up the rays.

roxy2009-04-18 19:50:10

Roxy - your "danger of pain pills" topic caught my eye, and then your story astounds me. I wasted down to 102 +/- lbs. 3 times before diagnosis and wasting is an RA symptom for some. I completely relate to living on Ensure and protein drinks.

I am surprised your doctors are not being more aggressive, and if its because you are on pain medication, and this is the new standard for us to NOT get treatment, then we are all in big trouble.

Take care and hang in there - I also understand about thinking you are dying. The last year before dx I thought I was too, and no doctor cared. Big huggles ~~ Cathy

Cathy - Are you eating now??????? I am exhausted writing that post but it was good to tell the storyl I am very interested in what happened to you. I have had horendous medical care - maybe because I am now on Medicare. I know when I had good insurance I got more attention. Also - I think doctors wrote me off. My RA has been out of control for so long and I have been wasting away.

I would love to talk more but my fingers hurt like hell and my vision is blurring

Thank you so much for response.

[QUOTE=justsaynoemore]

I am surprised your doctors are not being more aggressive, and if its because you are on pain medication, and this is the new standard for us to NOT get treatment, then we are all in big trouble.

Take care and hang in there - I also understand about thinking you are dying. The last year before dx I thought I was too, and no doctor cared. Big huggles ~~ Cathy

[/QUOTE]

oh seriously. Roxy is a drama queen freak. She thrives on this crap.
[QUOTE=roxy]Cathy - Are you eating now??????? I am exhausted writing that post but it was good to tell the storyl I am very interested in what happened to you. I have had horendous medical care - maybe because I am now on Medicare. I know when I had good insurance I got more attention. Also - I think doctors wrote me off. My RA has been out of control for so long and I have been wasting away.

When they say take our pills with 8 oz of water, I learned. Slow movng digestion as a result of our pain control is always a factor, but you can do alot, like drink lots of water.

And glad you got in "the rest of the story" LOL Cathy

[QUOTE=justsaynoemore]

cATHY i DO NOT uNderstand below statement ??????????? sorry hit caps accidently and cannot fix it too tired

I am surprised your doctors are not being more aggressive, and if its because you are on pain medication, and this is the new standard for us to NOT get treatment, then we are all in big trouble.

Take care and hang in there - I also understand about thinking you are dying. The last year before dx I thought I was too, and no doctor cared. Big huggles ~~ Cathy

[/QUOTE]

[QUOTE=Henrietta] [QUOTE=roxy]Cathy - Are you eating now??????? I am exhausted writing that post but it was good to tell the storyl I am very interested in what happened to you. I have had horendous medical care - maybe because I am now on Medicare. I know when I had good insurance I got more attention. Also - I think doctors wrote me off. My RA has been out of control for so long and I have been wasting away.

I would love to talk more but my fingers hurt like hell and my vision is blurring

Thank you so much for response.

[/QUOTE]

they "wrote you off" becaue your'e a freak!
[/QUOTE]

Why do you purposefully post something like this when you know its hurtful to the other person? Is it because of the personal satisfaction you out of it so you are saying it to make yourself feel better?

sorry cathy - I came back here and saw the comment from Henrietta. amazes me how cruel people can be but they can be easily ignoredRoxy, I usually do ignore Henrietta, but the viciousness of those posts shocked me. And I am curious what motivates someone to attack another in here and post hateful things when they know its only hurtful. It has to be that it fills a void in their psyche at the expense of others, very sad. I hope she gets some help.

I just started dropping weight for no reason, and then I slowly just was only drinking water as it was all I could tolerate. My MDs didn't care, so I consulted an RD and she suggested the Ensure (no insurance reimbursement for RD of course). So, I started drinking Ensure and slowly gained and gained and gained :)

Anyway, I wanted to share that I totally understand the feeling that you think you are dying. If you haven't experienced this feeling, its really something you shouldn't make fun of Henrietta. I hope you never have this symptom in whatever disease it is you have, as I don't believe I have figured it out as you never talk about your RA, just take potshots at posters like me and Roxy.

Cathy - You are very kind. It was very difficult for me to accept dying. I always thought I was going to be ready but I guess I still love my family and have hope to get better. It is a huge weight to find that my life may improve. Twilight anesthesia is standard practice for endoscopy (both ends). The doctor needs to be able to communicate with you and you during the procedures. It's no big deal - I've had both done. You get enough drugs so that you don't care what's going on, but not so much that you're passed out and unresponsive. Jasmine- Why did you have the upper GI? I was told that you had to be having problems for that test. My gastro specialist gives patients choice of anesthetic. I guess others get freaked out about being at all awake too. Glad I am not alone but I have never been brave about being put under. Maybe too many Discovery channel medical mysteries lol

You are way braver than I am I've had too many colonoscopies to remember the number and many gastroscopies... 40 years of GI disease (ulcerative colitis, stomach ulcers/gastritis). It was very traumatic when full of ulcers so I learned to just say I'm a big baby and please knock me out. They do. I'm allowed to wait 2-3yrs in- between colonoscopies now (active UC over 24yrs puts me in higher risk of CA). I haven't had stomach pain in 20 years so haven't had a gastroscopy(upper endoscopy) done since then. Anyway, last month they repeated the same mix of meds as the previous time; Versed, Benadryl, Fentanyl. That was at 7am... I didn't fully awake until 7pm and still slept all night! For me with my bad memories, it's worth it. There's just some disconnect between being able to intellectually analyze something and emotionally let go if afraid. I know it's not that bad and with even light med, it's over before you know it... but I need to be out of it. It works for me. Last month's test revealed one pre-cancer polyp, which of course was removed, so now I'm cured of that possibility. I scheduled my husband for the next week and he had the same thing.... we're twinsies.

CathyMarie

Cathy - It is great to hear from another baby. When I would see people having to have their stomach pumped on tv., I would always think - that will never happen to me. No one is sticking a tube down my throat Who would have thought all this would have happened. I see my relatives - older than me - doing so well and independently. I still have not let go of why me?????????? RA has brought on a lot of other issues I had no idea would be concerns. One day, minute at a time...........................

Have you ever stopped eating?????????? This has me so upset Roxy, I am so happy to hear you are feeling so much better. I hope things continue to go well for you and you have success in selling things for the move.

All the best to you, Roxy, and to your continued improvement. Keep looking forward! Always nice to see you posting Roxy. Please do so more often and please let us know how you are.
How is Kelsey doing?

Huggin ya!
Waddles, Mab and GG (Is that you Gina??) Thank you for welcoming me. It can be scary to post here as you know that you may get attacked but I felt the need to write down and share these last few months. It was very cathartic. I hope it may help someone that may have a similar experience. Also, the feedback is great.

My siblings have not experienced any serious health issues and so I am the first. We are all having a hard time understanding how to deal with the many problems I have had. To hear from others who have similar experiences are invaluable and I am so grateful that I know there are still kind people at AI.

GG - Kelsey is very well but seeing me so sick has been very distressing for her. I am considering placing her back in a group home. She has been home with me for about four years now. She has acquired many living skills in that time. Now I think it is time for her to be with peers. I will not be around forever. She is very resistant but I am considering having her return to a group home to go on outings and learn better social skills. I would like to have her home on weekends. It is tough because she would stay with me until the end but she is 26. I would like her to have friends and not be around a sick mom all the time. [QUOTE=roxy]Jasmine- Why did you have the upper GI? I was told that you had to be having problems for that test. My gastro specialist gives patients choice of anesthetic. I guess others get freaked out about being at all awake too. Glad I am not alone but I have never been brave about being put under. Maybe too many Discovery channel medical mysteries lol Jasmine - Ulcer ? [QUOTE=roxy]Jasmine - Ulcer ? [/QUOTE]

Nope. Just plain old NSAID and coffee-induced gastritis. 6 weeks of prevacid and I was fine.
Good news. I ate for the first time in months Sun. evening. I was elated. I had some sushi - CA Roll - one of my favorites and my body let me eat it. Now I am very encouraged. I have been off oxycontin for nine days now. Sunny weather - my joints are sore but no intense pain. Easy to get off oxy. Yesterday I ate 1/2 bagel and cream cheese. I feel I am going to heal.

My family is helping me brainstorm how to get out of this house. I want a sunnier climate.

I received my Jazzy wheelchair yesterday. It took all winter to get it. I call mine - Chet Baker LOL. Anyway, even though I feel better it is so nice to zoom around the house and not bug the kids to get me things. Life is getting better.

SUNSHINE SUNSHINE SUNSHINE That is what heals my RA.

It is supposed to rain tomorrow and to the end of the week. EEEEK [QUOTE=Henrietta][/QUOTE]

WHERE ARE ALL THE GREAT DEFENDERS OF THIS BOARD WHEN THIS KIND OF ABUSE IS GOING ON? NOWHERE TO BE FOUND BUT YET YOU WILL RUN PEOPLE WITH A DIFFERENT VIEW THAN YOU OFF THE BOARD.

If you even comment on it it just makes it worse.

Roxy~Who lives in AZ that you know? Surely you don't want to leave your family for a warmer climate? You know all too well that there are times when you could never have made it without your family. Do you have folks there to help you?

As bad off as you've been at times I'm sure even you know that the warmer climate will help.....but you'll have challenages ahead of you.

I'm real sorry to hear you've been so ill. Glad to hear things are looking up.

[QUOTE=TeedOff][QUOTE=Henrietta][/QUOTE]

WHERE ARE ALL THE GREAT DEFENDERS OF THIS BOARD WHEN THIS KIND OF ABUSE IS GOING ON? NOWHERE TO BE FOUND BUT YET YOU WILL RUN PEOPLE WITH A DIFFERENT VIEW THAN YOU OFF THE BOARD.

[/QUOTE]

Sometimes it's best just to ignore some posters. Especially the ones who don't have much to offer but nastiness and blame......

[QUOTE=Lovie] Roxy, I'm glad to hear you are doing better and are taking steps to continue to feel better.

Like Lovie, I was also concerned when you mentioned moving to Arizona. It sounds as though your family is now being very helpful and supportive and that is not something to take lightly. Their love and assistance is about as valuable as anything in your life right now. I can't imagine being sick and alone and away from family - no matter how nice the weather is!

I also recall the struggles that Deanna had with the Arizona social service agencies, and their inadequecies, and how poorly she rated the system in Arizona. Are you still in touch with Deanna? I would suggest you discuss this idea with her and get her input before you consider a move to Arizona.

I do agree that Kelsey would probably be best in a group home now. As difficult as it will be for both of you, it is a step that needs to be taken to help her prepare for the future. There are many wonderful group homes staffed by caring, involved people.

Please think everything through and don't make any big decisions that you will regret later. I wish you continued good luck Roxy.

Karen

I looked at the idea of moving a few years ago when I went through my divorce. Now, I am glad I didn't. My family has been incredibly helpful to me and my little boy.

I have been taking way more painkiller than I ever have. The jaw surgery, and now the complications, have be taking percocet before school, and when I get home. It is just impossible to not talk when teaching. Counting down the weeks until summer vacation! Anyway, I have been drinking a ton of water and taking Dulcolax to help with the GI stuff.

I am hopeful that decreasing the perocet will be in the near future. I see the pain dr. on Monday to talk about Botox injections for the jaw muscles. He mentioned wanting and MRI beforehand-I just want relief.

I hope you are feeling better. Let us know how you are doing....

Thank you all for good advice. We are having a family meeting soon to discuss what is best for me. I have a brother in AZ but he is not as supportive as my "big brother" here in OR. I am very torn now that the weather is nice. I will miss my family here very much if I leave. I am blessed that I have two attorneys in the family as they just got me out of a legal mess. As far as Kelsey, right now she is happy and is excited about Colton graduating so one day at a time. Social services thinks she has done very well with me as she has learned so many independent skills. Since the weather is better, I think I do a good job with her but when I am very ill - I think it is so hard on her. Life is up in the air but one day at a time. Right now my priority is to get rid of "stuff" and I am hoping to feel well enough this summer to maybe work part time. I so miss work and I have so many skills and talents. I just need to feel like I can be dependable.

Right now my family has a huge influence on what I do. I would not be able to support myself on SS without them. I hate being a burden but they never make me feel like one. I still would love to work to not ask for help.

one day at a time is the only way I can cope.

Lovie - your concerns are good ones. Thanks for caring.

Hillhoney- Deanna and I used to talk all the time on the phone. Do you stay in touch with her? I would love to hear how she is doing. I may be going back to Sedona to visit my brother and would love to see her.

Thank you all again for good advice and support.